This is Part 1 of a 110,000 word (270 page font-14 or 350 page font-16) longitudinal, retrospective and prospective account of my experience with bipolar disorder, and some other mental health problems, over more than 70 years: October 1943 to July 2014.
This is a personal and idiosyncratic, medical and clinical study of what some life-study students call a chaos narrative. This study focuses on an aspect of my life involving several mental health issues, mainly bipolar 1 disorder. This account is now in its 14th edition. In my retirement, the years from 2001 to 2014, I have revised the account each year producing what became a new edition each year. This book has 15 chapters; the last chapter contains ten appendices which, with the main text, provide what I hope are helpful perspectives for others who suffer various traumatic experiences in life.
This is Part 1 of a Two-Part account here at Baha'i Library Online, and it deals with the first half of my life, from conception to age 35. Part 2 deals with the last half, age 35 to 70 with some overlap between the two periods: 1943 to 1980, and 1980 to 2014. For our world of print-and-image glut, I advise many readers to simply skim or scan to portions of the book relevant to their own experiences.
Account of 70 Years of My Experience With Bipolar 1 Disorder: Part 1:
A Personal-Clinical Study: A Chaos Narrative
I open this foreword with a brief reference to two famous cases of depression. Case 1: On 3 February 2014 Ian Thorpe, Australia's famous swimming legend, was admitted to a rehabilitation clinic in Sydney Australia after neighbors found him dazed near his parents' home. Thorpe was taken to Bankstown Hospital by police before being admitted to a rehabilitation clinic. In his 2012 autobiography "This is Me", Thorpe admitted that he had at times considered suicide and confessed to drinking huge quantities of alcohol to deal with his crippling depression, a battle he had to deal with for years. In 2014 Thorpe was 31. Case 2: On 11 August 2014 Robin Williams committed suicide. He was 63. Psychologist Julie Cerel, chairperson of the board of the American Association of Suicidology, said Williams was known to have bipolar disorder, depression and problems with alcohol and drug abuse. I never had to deal with alcohol and drug abuse.
My battle, like the battle of all people who have to deal with clinical depression and/or bipolar disorder, and any one of the many forms and types of mental health disorders, is different to Thorpe's and Williams'. Both of these men and I had the black-dog hit us in our teens. I did not have to deal with alcohol, though, as Thorpe and Williams did. My life-narrative took a different course with depression, and my journey with mental health problems, after they first hit me more than 50 years ago, in my late teens, in 1963.
We know from Roland Barthes that beginning my story 50 years ago is a "chronological illusion." The illusion is created because the story really begins with the ending, with my present situation as I write these words. Roland Barthes(1915-1980) was a French literary theorist, philosopher, linguist, critic, and semiotician. Barthes' ideas explored a diverse range of fields and he influenced the development of schools of theory including structuralism, semiotics, social theory, anthropology and post-structuralism. More than fifty years later, in the first month after my 70th birthday, I still battle mental health issues, and they have been diagnosed several times since my teens. My story is found below; I encourage readers who come to this life-narrative to skim or scan it, surf-about to those sections of personal interest. My story is far too long for the Facebook-oriented, quick-hit, folk. People who want short and pithy, compact and concise, terse and cogent, curt and crisp, stories and analyses need to look elsewhere in cyberspace's many literary fields. I write this especially for those who have mental health issues to face in their life but, since there are now literally 100s of sites with help for others, this is but one of many sources of help. I write for a coterie of a coterie.
My lengthy story is now a 110,000 word(270 page, font-14; 350 page, font-16) longitudinal, retrospective and prospective account of my experience with bipolar disorder, as well as several other mental health problems over more than 70 years: from October 1943 to August 2014. This is a personal, clinical, and idiosyncratic study of what some life-study students call a chaos narrative. This study focuses on an aspect of my life involving several mental health issues, but mainly bipolar 1 disorder. This account is now in the 2nd draft of its 14th edition. In my retirement, beginning in the first year of the 3rd millennium, 2001, I have revised the account each year:(i) to add the changes in my medications and life experience, and (ii) to update the information base in relation to the relevant knowledge about mental health, and especially about BPD and several other disorders, as that base of information became available, for the most part, in cyberspace. The writer's job, among his or her many jobs, is to turn life into material so that others can find comfort in their own suffering and, better, so that others can find the courage to tell their own stories and, if not to tell their stories, at least find the courage to live them.
I encourage friends and others who have to deal with traumas of various kinds in their lives to write to me at my email address: firstname.lastname@example.org I am more than happy to respond to whatever others write. People who have to deal with any one or more of the stigmas mentioned below would never write about them in cyberspace. I offer them a safe-haven, a private refuge, so to speak, to tell me about their troubles and woes. I say this as a participant at over 100 mental health and general health, sexual abuse and child abuse, as well as related sites for those who suffer from stigmatized life-narrative issues. I participate as much as time and circumstances permit. Of course, in some ways, the only patient being treated by the writer of a narrative like this is the writer himself. Sick persons and those who care for them often become obligatory story-tellers and story-listeners. That is certainly the case with me. The centrality of storytelling has often been obscured in modern medicine throughout much of the last century by all sorts of factors. Like the novelist Philip Roth I address this poverty in medicine, but I also have become a listener, one who can simultaneously represent what that listening, responding, and empathy look like. Like Roth I have donated myself in my instances, my writing, the narrativizing of my illness, BPD.
This account gives me personal access to a wide range of autobiographical gestures. It gives me an opportunity to reflect upon and re-imagine my experiences to work out their meaning. As the late anthropologist Michelle Rosaldo points out, one must delve into the most personal in order to get to the most universal. I have come to see my feelings and experiences not only as a private realm but also as a most universal domain. These personal parts of my life are not only most particular to myself, but they are also of use to others with the interest. It makes sense to see emotions as things, not opposed to thought but as cognitions, implicating the immediate. I see them as thoughts embodied in words.
From my reflection upon experience comes the "imaginative" and "communicative" part of empathy, & who better to communicate this empathy than someone who has suffered as others have suffered. The ability to be both in the world and to be empathetic to the suffering of others is useful. Rather than hiding from it, I publicize it. I share it with the most precise wording I can find and utilize a pre-meditated literary structure. I write according to one accepted definition of what empathy is: "a type of emotional reasoning in which a person emotionally resonates with the experience of another while simultaneously attempting to imaginatively view a situation from that other person's perspective." I aim to know how and why I experience what I do, not only what the facts are of what I experience. One of the problems in modern medicine is that the system dictates what a person should say and what they shouldn't say. It also keeps what a person says to a bare minimum in order to deal with the person in the short time period of the appointment. Omissions often lead to diagnostic and deathly mistakes. One of the answers to this problem is to bring the authors in to teach the doctors. I find that somewhat of an overstatement, but that was the view held of the novelist Philip Roth. I thank the online journal Comparative Literature and Culture(Volume 16 (2014) Issue 2, "Roth's Contribution to the Narrativization of Illness," by Miriam Jaffffe-Foger for much of the content in the above paragraphs.
Social stigma, and the personal trauma that is often involved, can result from some perception, rightly or wrongly, of mental illness, of physical disabilities, of diseases such as leprosy, of illegitimacy, of sexual orientation, of gender identity, of skin tone, of education, of nationality, of ethnicity, of ideology, of religion, or of criminality. Attributes associated with social stigma often vary depending on the geopolitical, and of corresponding socio-political contexts, employed by society in different parts of the world. According to Goffman, arguably the most famous of 20th century sociologists, there are three forms of social stigma as follows:
1. Overt or external deformations, such as scars, physical manifestations of anorexia nervosa, leprosy(leprosy stigma), or of a physical disability or social disability, such as obesity.
2.Deviations in personal traits, including mental illness, drug addiction, alcoholism, and criminal background are stigmatized in this way.
3."Tribal stigmas" are traits, imagined or real, of ethnic group, nationality, or of religion that is deemed to be a deviation from the prevailing normative ethnicity, nationality or religion.
In the last dozen years I have written to literally 1000s of others in cyberspace, for the most part at specialized health sites, and I am happy, as I say above, to reply and to engage in an ongoing dialogue about their troubles and problems. This is part of my volunteer-work in these years of my retirement from FT and PT paid-employment, from most other volunteer and casual work and the demands of student life which had engaged me, in one way or another for 60 years, from 1949 to 2009 when I went on an old-age pension. I leave this, and this offer, with readers who have to deal with highly personal problems, and would like to write about them as one might to a friend where confidentiality is respected. I don't even talk to my wife about those who write to me on these subjects. She has no idea who is writing to me. In addition, I do not keep a copy of incoming emails or my responses in my hard-drive. I do keep copies until the dialogue, the discussion, the exchange, is completed, and then I delete it all. Then the person and their emails are not in my correspondence-file.
My account below aims to be as clinical as possible. It is not written as a narrative with episodes to keep readers wanting to read more, like a novel or a personal life-story for a publisher to market. It is not written to be an interesting, highly personal account, for publishers to market and, in the process, achieve a big readership on some best-seller list, on a list of books or ebooks in cyberspace or real space. It is, as I say above, a clinical and medical, longitudinal and, for most readers, somewhat antiseptic-analytical inquiry. It is an inspection and investigation, a personal rummaging around in my life and definitely not a story to keep readers on the edge of their seats, entertained, and moved by religious or philosophical, psychological and sociological insights. It is not written to be a model, or an example, of how I dealt with suffering, with anxiety, with life's troubles and woes. It is written to be of help to those with an interest in this particular mental health problem, bi-polar disorder. It is also written to provide a life-narrative, one person's life experience over 70 years of dealing with its manifestations in his life. There are few life-narratives in cyberspace that deal with mental-health issues over seven decades. This is one.
Those interested in depression, which hit me for the first time, like Ian Thorpe, in my teens may find this account especially helpful. The still highly stigmatized field of mental health is finally, in the last decade or so, coming into the light of public recognition. Understanding is still a long way off, but accounts like mine, like the one below, are intended to help with this increasing public understanding. The increasing levels of de-stigmatization that are gradually helping both the mentally-ill, and those who would like to understand this complex subject, this vast field, are part and parcel of society's progress. As we all head with the speed of light through this 21st century and beyond into what will be, in many ways, a utopian global community, we each can play our own parts in this progress if we have the desire. The account below is some of my part in this progress and this process. My cosmology, my world view, is that humanity is going through the stage of adolescence after a very long childhood, and maturity, the adult stage, of civilization is gradually going to break out, if it has not already started, in this late adolescence with all its troubles and woes, struggles and crises. I am both an optimist and a realist.
This preamble attempts to set my lifetime experience with bipolar I disorder into a wider context of mental health generally & my 70+ years of living in particular. As such, this preamble is a lengthy one. There are many manifestations of mental health problems like: neurotic and personality, psychotic and non-psychotic. Mental health problems are now one of the leading causes of death globally. The Diagnostic and Statistical Manual of Mental Disorders (DSM), published by the American Psychiatric Association, provides a common language and standard criteria for the classification of mental disorders. The DSM is used in the United States and to various degrees around the world. It is used or relied upon by: clinicians and researchers, psychiatric drug regulation agencies and health insurance companies, pharmaceutical companies and policy makers, among other interest groups. The current version is the DSM-V-TR (fifth edition, text revision) which came out one year ago now, in May 2013. This manual and its use has become highly controversial and I discuss the nature of this controversy below.
The DSM-IV organized many mental health problems and disorders into a five-part axial system. The first axis incorporated clinical disorders. The second axis covered personality disorders and intellectual disabilities. The remaining axes covered: medical and psycho-social, environmental and childhood factors functionally necessary to provide diagnostic criteria for health care assessments. My account is a far from systematic one and deals with this five-part axial system in only a limited way. Being systematic in my approach was part of my problem when I began this account more than a dozen years ago in 2001. My story has become more systematic, but it has also become more idiosyncratic and personal. Readers, I'm sure, will find it somewhat of a labyrinth. This 'chaos-narrative,' as some biographers and autobiographers call this genre of story-telling, has an essentially longitudinal aspect beginning, as it does, at my conception in mid-October 1943, and ending with the present in July 2014, thus making the narrative-description a total of more than 70 years. This account also has a strong descriptive and informational aspect, stopping as it does from time to time, to deal with relevant, but often somewhat tangential, aspects of both my experience and clinical aspects of BPD.
In this section I intend to provide some statistics, but only a start to what has become a complex problem of not only definition and costs to society, but also a vast framework of numbers and percentages, of data and information. Mental disorders now account for a significant percentage of the non-fatal burden of disease at local and state levels, as well as nationally and globally. The economic costs of mental illness have never been easy to pin down. The costs of mental health care can be estimated much the way other health care costs are estimated. The Agency for Healthcare Research and Quality in the USA cites a cost of nearly 60 billion dollars in 2006 for mental health care in the U.S.A alone. This is equivalent to the cost of cancer care. But unlike cancer, much of the economic burden of mental illness is not the cost of care, but the loss of income due to unemployment, expenses for social support systems, and a range of indirect costs due to a chronic disability that begins early in life.
A report in January 2014 from the World Economic Forum attempts to capture the costs of several classes of non-communicable diseases, and projects the economic burden through to 2030. Recognizing there is no ideal method, the authors adopted three approaches to estimate the global economic burden: (a) a standard cost of illness method, (b) a macroeconomic simulation, and (c) a study of the value of a statistical life. The results of all three methods project staggering costs over the next two decades, 2013 to 2033, with cardiovascular disease, chronic respiratory disease, cancer, diabetes, and mental health representing a cumulative output loss of $47 trillion, roughly 75% of the global GDP in 2010.
To put all of this another way: mood disorders are of epidemic proportion & increasing with every passing day. The economic burden of depression in the USA alone was estimated to be 43.7 billion dollars in 1990. A subsequent study reported a cost burden of $52.9 billion dollars using revised prevalence data, and a refined workplace cost estimation approach. The following is an update to the year 2000. Using a human capital approach, prevalence-based estimates were developed for 3 major cost categories: (1) direct costs, (2) mortality costs arising from depression-related suicides, and (3) costs associated with depression in the workplace. Cost-of-illness estimates from 1990 were updated to reflect the experience in 2000 using current epi-demiologic data and publicly available population, wage, and cost information.
Whereas the treatment rate of depression increased by over 50%, its economic burden rose by only 7%, going from 77.4 billion dollars in 1990 (inflation-adjusted dollars) to 83.1 billion dollars in 2000. Of the 2000 total, 26.1 billion dollars (31%) were direct medical costs, 5.4 billion dollars (7%) were suicide-related mortality costs, and 51.5 billion dollars (62%) were workplace costs. The economic burden of depression remained relatively stable between 1990 and 2000, despite a dramatic increase in the proportion of depression sufferers who received treatment. Future research will incorporate additional costs associated with depression sufferers, including the excess costs of their coexisting psychiatric and medical conditions and attention to the role of painful conditions as a driver of these costs.
One million people in Australian currently suffer from depression and 2.3 million suffer from anxiety. In any year 10,000 young Australians live with depression. Postnatal depression effects 14% of new mothers in Australia. The prevalence of depression in an Australian sample group increased in the ten years to 2008 from 6.8% to 10.3%. Depression and anxiety affect one in seven and one in four people respectively at some point in their lives. Depression will be second only to heart disease as the leading medical cause of death and disability within 20 years. The economic impact of depression and depression-associated disabilities costs the Australian economy $14.9 billion annually.
In Australia more than 6 million working days are lost each year. Depression costs the Australian community over $600 million each year in treatment costs. There is no need for readers to try and grasp the details or even most of the general patters in relation to these statistics. The complexities associated with statistics are a field in themselves with many permutations and combinations, many arguable lines of analysis, and all sorts of conclusions reached by all sorts of theorists and analysts.
There is an estimated and staggering indirect cost of perhaps $200 billion a year in the USA alone when one includes the impact of: (i) incarceration, (ii) homelessness, (iii) the high rate of medical complications, (iv) dependence on emergency room care, (v) lower educational attainment, (vi) the reduced ability to hold jobs, (vii) the burden on friends and families, and (viii) a range of social and environmental, criminal and behavioural, problems that are linked to the world of mental health.
The above 8 factors and their application in the nearly 250 countries, as well as dependent and independent territories on the planet, could alone make for a separate book on the subject. Indeed, there is already an extensive literature on these many factors, and a literature that is nation-specific in relation to many of those 200+ countries. For those who are interested, the literature could keep a reader going for the rest of their life. Those who want to follow-up in these relevant areas of interest on the subject now have a burgeoning literature available.(note:U.N. Members: 193, U.N. Observer States: 2, States With Partial Recognition: 2, Inhabited Dependent Territories: 45, Uninhabited, Territories: 6, Antarctica: 1, Total: 249)
José Maria Vigil has investigated the psychological well-being of one continent, Latin America. She has diagnosed a state of collective depression, that is, a continent as having actually the same symptomatology as for individual depression: disappointment, loss of self esteem, self-accusation, demobilisation, disorientation, de-politicization, escape into spiritualism, loss of memory, withdrawal and psychosomatic problems (Vigil, 2000: 2). It is possible in a similar way, to assess the condition of a large proportion of young people as being one of collective depression. I leave it to readers to follow-up on this topic in relation to each and all of the world's continents. This notion of collective well-being is, like so many problems, complex, and an account like my own does not deal with it except to simply mention it and pass on.
Bipolar disorder affects about 5.7 million American adults, or about 2.6 percent of the U.S. population aged 18 and older, according to the U.S. National Institute of Mental Health (NIMH). This brain disorder causes severe and unusual shifts in mood, energy, activity levels, and the ability to carry out routine daily tasks. A recent US Surgeon General's report on mental illness concluded that at least 30% of Americans currently suffer from some form of mental disorder, including disorders in any of the following general categories: anxiety, mood, eating, sexual, substance-use, sleep, cognitive, psychotic, and schizophrenic, inter alia. This figure is comparable in Canada, Australia, and many countries around the world. The three most common specific disorders appear to be: clinical depression, substance-abuse, and social phobia or social anxiety disorder. For an extensive list of famous people with various mental illnesses and autobiographies do some Googling.
According to the World Health Organization report, bipolar disorder is ranked sixth in the top 10 causes of disability worldwide in the 15-to 44-year age group. Moreover, bipolar disorder is ranked third among mental illnesses after unipolar major depression and schizophrenia as the source of disease burden in established market economies. Until recently, much of the research in bipolar disorder has focused on bipolar I disorder, with a lifetime prevalence of about 1% in the general population. However, since epidemiologic studies started to use a broader definition of bipolar disorder, comprising a wider range of illnesses than pure mania, including hypomania, recurrent brief hypomania, sporadic brief hypomania, and cyclothymia, the lifetime prevalence estimates of bipolar spectrum disorder are now placed at at least 5% of the general population, with some authors producing even higher estimates. In view of the high prevalence of bipolar spectrum disorder, it is important to assess the associated costs to society and to the afflicted individual.
There are two main problems with the definite article “the” in the term "the mentally ill." Imagine if we used the definite article in relation to any other group. It suggests that people who suffer with these conditions are somehow 'other' than us, and can be put in a discrete & often stigmatized category. It creates a sense of 'otherness' that is not the reality, statistically, of these illnesses. Imagine the use of this definite article in relation to: women, gays, blacks. It is absurd. The term creates a notion that it’s a uni-modal type of thing, and needs to be separated from other people, other categories. We need a more inclusive and more granular language. There’s the denotation of what mental illness means, but there’s also the connotation. From a clinical standpoint, a mental disorder means a disorder in various forms of mental functioning: thought, speech, emotion, behavior.
Those disorders are myriad and mixed and often have a generally medical origin. They cover a vast range of everything: (i) from autism spectrum disorders to attention deficit hyperactivity disorder, (ii) through obsessive-compulsive disorder and anxiety disorders, to post-partum depression and recurrent depressive illness, and (iii) from dementia illnesses which have profound effects not only on memory but on behaviour---to Parkinson’s disease which has high rates of very severe anxiety and depression. So the term “the mentally ill” creates not just a notion of separateness and otherness, but also a notion that it’s a uni-modal type of thing. We need a more different, a more inclusive and, as I say above, a more granular language.
A person is not defined by a diagnosis. If you have a mental illness it doesn’t define you any more than your heart disease defines you if you’re a cardiac patient. A person is a person who happens to have depression or schizophrenia; the correct term is “people with mental illness.” That’s the phrase I use, and I use what you could call “people first” language in this and in other contexts. It's a similar problem with, say, “diabetics.” I say “people with diabetes” not "diabetics." I say “people who have obesity” instead of “the obese” or “obese people.” Yes, “people first” language is less concise. But a couple of added words seems a small price to pay for according greater dignity to people facing extra challenges. This is all part of a larger shift away from labeling people and toward labeling behaviours; for example, the new entry on mental illness refers to people “diagnosed with schizophrenia” instead of “schizophrenics.” I recognize, though, that such a "play with words" so to speak, will not find a place in people's vocabulary easily. At one level all of this, I'm sure for many, is just semantics; at another level a good point is being made.
All of the above, though, is not the focus of this story. All of the above is written to provide a wider context to this personal account. This account has now been at many internet sites and at Bahá'í Library Online for several years. I have had many responses at several other sites in cyberpsace. This account has now had at least 20,000 hits and, arguably, as many as 40,000. It is impossible to know how much of it has been read and by how many, even if the number of clicks or hits can be quantified. Readers will find below my personal account and experience of bipolar 1 disorder(BPD). It is my life-narrative and my experience with a special focus on the idiosyncratic manifestations of BPD in my life. For this reason, among others, I have posted part or all of what I call my 'chaos-narrative', as I say, at a number of internet sites, especially sites which deal with mental health issues. Mine, of course, is not the only story. There are now 100s, if not 1000s, of accounts of BPD in cyberspace, to say nothing of the myriad number of accounts of the many other mental health issues afflicting human beings in the globalizing and planetizing world. Mine is one of the most detailed due to its being the story, the experience, of one person over his total lifespan of some seven decades.
Some refer to such an account as 'coming-out-of-the-closet'. This experience has parallels to and with the experience of: lesbians, gays, bisexuals, transgender, paedophiles, people with criminal records, victims of child abuse, and a host of others who have some stigmatized social problem as part of their lives. Such stigmatized problems have resulted in the person keeping their experience, their problem, their disability, their status, hidden as far as possible from others. Again, the literature on these several human predicaments is massive, and this account makes no attempt to deal with all of these stigmatized illnesses and disorders. The concept of 'coming-out' is not dealt with in detail, although this account is, in itself, a form of my coming-out.
I could include at least one paragraph on each of the stigmatized groups above. I will only mention one, and one that has been in the press a great deal in recent years: child abuse. Child abuse is the physical, sexual or emotional maltreatment or neglect of a child or children. In the United States, the Centers for Disease Control and Prevention (CDC) and the Department for Children And Families (DCF) define child maltreatment as any act or series of acts of commission or omission by a parent or other caregiver that results in harm, potential for harm, or threat of harm to a child. Child abuse can occur in a child's home, or in the organizations, schools or communities the child interacts with. There are four major categories of child abuse: neglect, physical abuse, psychological or emotional abuse, and sexual abuse. This problem is complex and massive.
I will also conclude this discussion of stigma with a paragraph on stigma management which has been an important part of my dealing with BPD. When a person receives unfair treatment or alienation due to a social stigma, the effects can be detrimental. Social stigmas are defined as any aspect of an individual’s identity that is devalued in a social context. These stigmas can be categorized as visible or invisible, depending on whether the stigma is readily apparent to others. Visible stigmas refer to characteristics such as race, age, gender, physical disabilities, or deformities, whereas invisible stigmas refer to characteristics such sexual orientation, gender identity, religious affiliation, early pregnancy, certain diseases, or mental illnesses. When individuals possess invisible stigmas, they must decide whether or not to reveal their association with a devalued group to others. This decision can be an incredibly difficult one, as revealing one’s invisible stigma can have both positive and negative consequences depending on several situational factors. In contrast, a visible stigma requires immediate action to diminish communication tension and acknowledge a deviation from the norm. People possessing visible stigmas often use compensatory strategies to reduce potential interpersonal discrimination that they may face. Wikipedia has an excellent overview of stigma management for readers with the interest.
Severe mental tests are everywhere apparent, not only in the fields of psychiatry and clinical psychology, disciplines whose role is to deal with these afflictions, but also across the wider, the global, culture in which we all live. These tests have been afflicting people across most cultures in the long history of humankind, but especially in the last century as the world’s population has gone from 1.4 billion in 1914 to 7.4 billion in 2014.
The onset of the Great War, 1914-1918, in some ways marked a new stage in the burgeoning problem of mental health and the tempests of our modern world. The new field of disaster psychiatry now plays a vital role in the evolving structures for preparedness and response in the field of disaster management. Science and experience now address the tragedies of mass catastrophe with new systems. The challenges are massive for integrating mental health contributions into the practical requirements for survival, aid, emergency management and---ultimately and hopefully---recovery. The human face of disaster and the understanding of human strengths and resilience alongside the protection of, and care for, those suffering profound trauma and grief are central issues in relation to disaster psychiatry.
These tests, disasters and crises will continue in the decades ahead as the tempest afflicting society continues seemingly unabated. While this tempest blows through the minds and hearts of billions, there is also, it seems to me, an integrating and constructive set of processes at work. All is not tragedy and despair in the workings of modern history although, to some, it may appear to be thus. There is now available a burgeoning range of resources in today’s print and electronic media to help people understand this complex and extensive field of mental health. My life-narrative, which I hope will be of help with respect to BPD, is but one small resource, although a lengthy account, for readers. I have posted sections of this account at internet sites which contain a dialogue between people interested in particular mental health issues about which I have had some experience.
There is a growing failure of modern Western culture to provide an adequate framework of hope, moral values, and a sense of belonging and meaning in people's lives, so weakening social cohesion and personal resilience. In investing so much meaning in the individual "self," society has left the individual dangerously exposed and isolated. The enduring personal, social and spiritual relationships, the vast heritage, that gives deeper meaning and purpose to people's lives has, in many ways, weakened in the last century. Of course, this issue and these issues, in relation to history and the ability of various cultures and governments to deal with the crises is complex. Again, this is not the focus of this account, my experience of BPD. I leave it to readers with the interest to examine the wider socio-historical, and psycho-historical factors that bear in different ways on the issues that relate, directly and indirectly, to the field of mental health.
The issue as to whether there can be a collective psychopathology, though, is relevant here. Only a clinical evaluation can determine whether an individual suffers from a mental illness, but no group can be diagnosed en masse. We can justifiably ask, though, whether, war and terrorism, poverty and crises are related to certain habitual ways of thinking that have analogies to some psychiatric disorders. If one uses clinical terms for which there might be specific diagnostic tests, then one is making a collective diagnosis which can then only be metaphorical. This is a complex issue which I leave to readers to investigate, and discuss with others, if they have the interest.
Franz Kafka(1883-1924) was a German-language writer of novels and short stories. He is now regarded by critics as one of the most influential authors of the 20th century. A recent biographer, Saul Friedlander, described Kafka beautifully as “the poet of his own disorder.” He states his case baldly: "His Diaries and his Letters indicate clearly enough that, except for the constant pondering about his writing, the quintessence of his being, the issues torturing Kafka most of his life were of a sexual nature." I have no trouble in making the statement that "I am the prose-writer-poet of my own disorder." But not in any way like Kafka, as Friedlander discusses the subject. Anyone who writes about their disorders, writes within the context of some world-view, some cosmology, some psycho and/or socio-historical framework however articulate or inarticulate their writing and their thinking may be.
Friedlander reinforces his view, insisting that “aside from the total primacy of writing, sexual issues turned into the most obsessive preoccupation of Kafka’s life.” Of what variety were these sexual issues? “All the sources indicate…that his feelings of guilt were related not to some concrete initiatives on his part but to fantasies, to imagined sexual possibilities.” And these possibilities, Friedländer suggests, were homoerotic in origin."
Vladimir Nabokov(1899-1977) was a Russian-born novelist. Nabokov's first nine novels were in Russian. He then rose to international prominence as a writer of English prose. He also made serious contributions as a lepidopterist and chess composer. Nabokov's Lolita (1955) is his most famous novel, and often considered his finest work in English. It exhibits the love of intricate word play and synesthetic detail that characterised all his works. The novel was ranked fourth in the list of the Modern Library 100 Best Novels. Pale Fire (1962) was ranked at 53rd on the same list, and his memoir, Speak, Memory, was listed eighth on the Modern Library nonfiction list. He was a finalist for the National Book Award for Fiction seven times, but never won it.
In one of the more heated passages during the course of Nobokov's Lolita, Humbert Humbert pauses to surmise that by now his respectable reader’s eyebrows will have travelled to somewhere near the back of his balding head. No doubt there will be many Kafka admirers on whom Friedländer’s thesis will have a similar effect. It is important to stress, therefore, that Friedländer is no firebrand young academic thirsting for tenure and bent on making a scandalous name for himself. He is emeritus professor of history and holds the Club 39 Endowed Chair of Holocaust Studies at UCLA; he won the Pulitzer Prize in 2008 for his book The Years of Extermination: Nazi Germany and the Jews, 1939–1945. Kafka's homosexual orientation, if that is what he had, is arguable, complex, and not the focus of this my life-story with BPD.
I post below some of the poetry of Emily Dickinson since it throws light on mental health in a way that is, for me, a helpful context. Dickinson is often not much help to others, though, due to the complexity and style of her writing which turns many a modern back to TV and the movies, to gardening and the vast morass of popular culture.
Much Madness is divinest Sense by Emily Dickinson
Much Madness is divinest Sense-
To a discerning Eye-
Much Sense - the starkest Madness-
’Tis the Majority
In this, as all, prevail-
Assent - and you are sane-
Demur - you’re straightway dangerous-
And handled with a Chain-
*I measure every Grief I meet* by Emily Dickinson
I measure every Grief I meet
With narrow, probing, eyes-
I wonder if It weighs like Mine-
Or has an Easier size.
I wonder if They bore it long-
Or did it just begin-
I could not tell the Date of Mine-
It feels so old a pain-
I wonder if it hurts to live-
And if They have to try-
And whether – could They choose between-
It would not be – to die-
I note that Some – gone patient long-
At length, renew their smile-
An imitation of a Light
That has so little Oil-
I wonder if when Years have piled-
Some Thousands – on the Harm-
That hurt them early – such a lapse
Could give them any Balm-
Or would they go on aching still
Through Centuries of Nerve-
Enlightened to a larger Pain-
In Contrast with the Love-
The Grieved – are many – I am told-
There is the various Cause-
Death – is but one – and comes but once-
And only nails the eyes-
There's Grief of Want – and grief of Cold-
A sort they call "Despair"-
There's Banishment from native Eyes-
In sight of Native Air-
And though I may not guess the kind-
Correctly – yet to me
A piercing Comfort it affords
In passing Calvary-
To note the fashions – of the Cross-
And how they're mostly worn-
Still fascinated to presume
That Some – are like my own-
*I'm Nobody! Who are you? * by Emily Dickinson
I'm Nobody! Who are you?
Are you – Nobody – too?
Then there's a pair of us!
Don't tell! they'd advertise – you know!
How dreary – to be – Somebody!
How public – like a Frog-
To tell one's name – the livelong June-
To an admiring Bog!
*We never know how high we are * by Emily Dickinson
We never know how high we are
Till we are called to rise;
And then, if we are true to plan,
Our statures touch the skies—
The Heroism we recite
Would be a daily thing,
Did not ourselves the Cubits warp
For fear to be a King—
I post the above poetic pieces by Emily Dickinson, a famous American poet who, as I say above, most readers find quite obscure when they first come to her writing. As I say, though, these poems throw light on my own experience of several mental health issues. I have also posted the above words about Kafka and Nobokov to make the point that there is much at the centre of my own disorder, but sex does not occupy a significant place, at least I have come to this view over more than half a century or more of dealing with its frustrations and associated anxieties. Whatever difficulties and frustrations I have had in life that have been due to my sexuality, its needs and wants, they have not played a part in my bipolar disorder, at least not as far as I know. In fact, my respectable reader’s eyebrows will not be travelling to somewhere near the back of their balding heads as they rummage around in this lengthy work of more than 110,000 words. Readers trying to find some aspects of sexual disorientation, some sexual determinant, to whatever problems I have had in the mental health field will look in vain. This is because I do not regard my libidinal urges, my libido and id as central to my BPD, my depression, or other health issues I have had to deal with in my 70 years on this mortal coil.
There may be, indeed, I'm sure there is much that does play a part in the depression I experienced and my BPD that is due to: (i) socialization and society, (ii) various strains and stresses in my life: (a)marital and sexual, and (b)occupational and interpersonal, inter alia. But this account, this book, only touches on any of them very briefly and only tangentially. Life's tests, life's circumstances and crises, nature and nurture, all played a part from time to time in precipitating episodes of BPD, and so this range of factors can not be ignored. These circumstances were part of what might be called the 'mise en scene' of 'my existential condition'. Readers with the interest might like to skim or scan my 5 volume and 2600 page autobiography to provide some of the text and context of my life experience and, in the process, assess the ways and means that my BPD was entwined with my daily, my life, experience over the entire lifespan. But I think it unlikely that the average reader who has come this far in what is still a preamble to my story, will want to wade through an additional 2600 pages of my life-narrative. My chaos narrative, as one of the titles I give to this account, resembles in some ways the autobiographical novel of the French writer Marcel Proust, his "Remembrance of Things Past." As famous as that novel is, I'm sure that most of my fellow students and friends in the last 70 years, have never attempted to read this 3000 page, multi-volumed work. I am rather of the opinion that the vast majority of people who come to know of the existence of this work, will not try to read it and, those who do, will not get far. By the time most readers have got as far as the several parts of these opening notes, they will begin to tire and want to move on. There are many reasons for this of which the content and style of my work are but two factors. I have no trouble with this fact as I'm sure Marcel Proust did not worry about the popularity of his massive tome which it took him a dozen years or so to write.
There are many internet sites today, some organized for and by mental health experts and others organized by non-experts for the general public and especially for sufferers of mental-illness to provide information as well as opportunities to discuss issues. In the process sufferers can, if they want, obtain help for what has become a very large range of specific disorders. If one goes to their google search engine and inserts the following words: mental health, depression, bipolar disorder, affective disorders, OCD, PTSD, anger management, indeed, any one of dozens of other disorders in this field, one discovers a host of sites of interest and of relevance to one’s special concerns. I draw on the expertise and experience of many. It is the view of some people that someone without lived experience of a mental illness should not be seeking to speak for those who suffer, but I do find some merit in what many have to say, even though they have not had a personal experience of mental illness. Experience is not the sine qua non, the only ingredient in making what someone has to say valid.
According to one source, one-third of all people in western cultures will suffer from a disorder or emotional problem during their lifetime and they would benefit from therapy. In the last half century there has been a revolution in treatment programs and regimes which have found better and permanent cures for many, if not most, of the mentally afflicted, but there are millions more suffering from mental illness as well. In this world mental illness is truly a heavy burden to bear. I leave it to readers to do more Googling; there is much to read for those who are interested in this subject.
Despite the plethora of treatment options for BPD, this particular mental health problem remains suboptimal from the point of view of effective and lasting treatments by clinicians. Patients, clients, and sufferers, to use the several terms available, in relation to BPD have many difficulties insofar as compliance and treatments options are concerned. Whether measured by recovery time from manic or depressive episodes, or preventive efficacy of maintenance treatments, BPD is characterized by sluggish responses, inadequate responses, poor compliance and recurrences in controlled clinical trials. Results of naturalistic studies additionally show pervasive, often chronic symptoms, multiple episode recurrences, infrequent euthymic periods when measured over years, and marked functional disability in many patients. Euthymic means a normal, non-depressed, reasonably positive mood, and this should be distinguished from the word euphoria.
There has been an explosion of treatment options for BPD over the last half century(1964-2014), and especially the last quarter century(1989-2014). Lithium has dominated treatment since the 1980s, but treatment resistance, that is the resistance, the failure of compliance, of those who have BPD, remains a central problem in BPD. If measured by symptom or syndrome recurrence, status or functional status, the majority of treated BPD patients have a less than satisfactory outcome. My life experience with BPD is a good example of this reality, although at the age of 70 I have come to see my present treatment regime as: "as good as it gets" in spite of at least 4 changes in my medication regime in the last 7 years: 2007 to 2014. A lot of these psychiatric illnesses fluctuate and, therefore, always keeping the same medications, and at a constant rate, is often not a good idea. Giving a person with diabetis the same amount of insulin no matter what the person's blood sugar level is-is not wise. Neither is this the case with medications for BPD.
My medications have changed many times since they were first administered to me in June 1968. They have changed based on psychiatry's understanding of the biological mechanisms behind BPD, and they have changed as advances in the field of pharmacology have come about through research. So, who knows what my meds package will be as I head through my 70s, and into old age after 80 in 2024. The general view of psychiatrists, as far as aging and BPD is concerned, is that the symptoms get worse in the last years(70-80) of late adulthood(60-80), and old age, the years after 80. In making the above comments on medications, I need to add one note. It is a note that I have had to strike more times than I care to count since having meds in one form or another now for nearly 50 years. That note is, as follows:
As soon as I mention medications I can almost hear many of my readers who have come this far shout and, if not shout, at least advise me to seek out some alternative treatment regime. The anti-meds, anti-psychiatry voice, school, movement, has been in my ears now for decades. This line of thought is not without its value; it took me at least 20 to 30 years to shed the insinuating and seductive influence of the many alternative treatment packages on my personal strategies for dealing with BPD. From 1963 to 1991 I had several attitudes to medication ranging from: (a) I don't know about medications as a form of treatment(1963-1968), to (b) I don't need them and I want to go off them(off and on from 1968 to 1991. I was not fully complaint, to use the appropriate word, until the early 1990s.
Each person has to work out their own MO for living as well as for dealing with the existential crises in their lives. Pharmacotherapy, pharmacology, dispensed by a psychiatrist has been the main line I have gone down since at least 1980 or, perhaps, 1968, after several years of wandering in a wilderness of non-treatment and non-diagnosis. While I appreciate the concern others express from time to time, it has taken me years, indeed, decades, to work out my modus operdandi and, as I head through my 70s, from July 2014 to July 2014, I have come to the view that this path I have gone down and its results on my daily life, has given me a lifestyle that is as good as it gets.
Pharmacology is the branch of medicine and biology concerned with the study of drug action, where a drug can be broadly defined as any man-made, natural, or endogenous (within the body) molecule which exerts a biochemical and/or physiological effect on the cell, tissue, organ, or organism. More specifically, it is the study of the interactions that occur between a living organism and chemicals that affect normal or abnormal biochemical function. If substances have medicinal properties, they are considered pharmaceuticals. The field encompasses drug composition and properties, synthesis and drug design, molecular and cellular mechanisms, organ/systems mechanisms, signal transduction /cellular communication, molecular diagnostics, interactions, toxicology, chemical biology, therapy, and medical applications and antipathogenic capabilities. The two main areas of pharmacology are pharmacodynamics and pharmacokinetics. The major divisions include the following: clinical pharmacology, neuropharmacology, psychopharmacology, pharmacogenetics, pharmacogenomics, pharmacoepidemiology, toxicology, theoretical pharmacology, posology, pharmacognosy, behavioral pharmacology, and environmental pharmacology. I encourage readers to do some Googling in relation to some of these terms and, in the process, widen their knowledge of the basis for the treatment programs I have come to select in my life-narrative.
I have joined over 100 of the internet sites in relation to mental health issues and participate, as circumstances permit, in the discussions on: mental health, bipolar disorder, depression and personality disorders among other topics in the field of psychiatry. What I have posted below is, as I say, also posted in whole or in part at many of these sites. I have posted this account here and at other locations in cyberspace because: (a)it is part of my own effort to destigmatize the field of mental illness, and (b) this account provides a useful longitudinal personal-experiential perspective of BPD for those who are interested. Many, if not most, BPD sufferers never go public about their problems due to the social stigma. My going public at this site among other sites is, as I say, part of my personal effort to destigmatize a part, one corner, of the mental health problem that millions of people face. BPD, and particularly BP1D is highly idiosyncratic. After 70 years of dealing with it I have come to see my experience of BPD as a type of psychic, intellectual, and cognitive organization. I have also come to see BPD in many other ways and readers with the interest are invited along on my journey.
Individuals possessing invisible stigmas like BPD can choose either passing or revealing strategies in order to manage their identities when interacting with others. Passing strategies involve strategies that do not disclose the invisible stigma to others, including fabrication, concealment, and discretion. Revealing strategies involve identity management strategies that seek to disclose or reveal the invisible stigmas to others, such as signaling, normalizing, and differentiating.
After giving the subject of stigma more thought, I have decided to include the following paragraphs on strategies for managing the stigma of BPD beginning with "Passing." Passing can be defined as “a cultural performance whereby one member of a defined social group masquerades as another in order to enjoy the privileges afforded to the dominant group”. In other words, passing is simply choosing not to disclose one’s invisible stigma in order to appear to be part of the dominant/not stigmatized group. Those who pass must be constantly aware of social cues in order to avoid accidentally disclosing information about their hidden identity, a worry that most individuals from dominant groups do not share. People may rely on several different strategies for passing or concealing their invisible stigma at work. These strategies include fabrication, concealment, and discretion.
"Fabrication" is the second strategy. The fabrication strategy involves purposefully presenting false information about oneself in order to hide one’s invisible stigma. Individuals using this strategy utilize deception to create a false identity in order to avoid revealing their stigmatized trait. In research involving lesbian, gay, bisexual, and transgender (LGBT) individuals, a similar strategy called counterfeiting has been identified. This involves the act of constructing a false heterosexual or healthy-body-mind identity. This serves as a nice example of the passing strategy of fabrication. LGBT individuals engaging in this passing strategy may even go so far as to pretend they have a heterosexual partner in front of their coworkers.
"Concealment" is a third strategy.The concealment strategy involves taking preventative measures to keep others from discovering personal characteristics for fear that may reveal an individual’s invisible stigma. Individuals using this strategy would not actively use deception like individuals using the fabrication strategy would, but they would still take an active role in carefully protecting themselves from revealing too much personal information. In research involving LGBT individuals, a very similar strategy called avoidance has been identified. This is simply revealing no information about one’s sexual identity in order to avoid disclosure on this topic. This also serves as a nice example of concealment for this specific invisibly stigmatized group.
"Discretion" is a 4th strategy.The discretion strategy is subtly different from the concealment strategy as it involves an individual avoiding questions or revealing information that is specifically related to their invisible stigma. Discretion is not as active of a passing strategy as the other two strategies, but it does involve interpersonal elusiveness and speaking in ambiguous language when the conversation threatens to potentially reveal one’s stigmatized identity. An example of this strategy (and a way to distinguish it from concealment) would be a person who is very willing to reveal personal information to their coworker but is also very reluctant to discuss any topics that they think may be related to their invisible stigma.
"Revealing" is a 5th strategy. When a person chooses to unveil an otherwise invisible stigma to their coworkers, they are choosing to reveal their stigma in that situation. It is important to note that individuals may vary in the degree to which they reveal invisible stigmas to their coworkers; for example, employees may choose to reveal their stigma to everyone they encounter, or they might judiciously choose a select few that they are comfortable with telling about their invisible stigma. People may rely on several different strategies for revealing their invisible stigmas at work. These strategies include signaling, normalizing, and differentiating.
"Signaling" is the first of the revealing strategies. The signaling strategy involves avoiding complete disclosure of one’s invisible stigma to his/her coworkers. Rather, people who use this strategy tend to drop hints and send signals to their coworkers without having to completely reveal their invisible stigma. Examples of signals may include the use of cryptic language, bringing up conversation topics that are specific to a stigmatized group, using symbols that are specific to a stigmatized group, and/or the use of nonverbal cues consistent with one’s stigmatized group membership. Individuals using this strategy are essentially inviting others to discover their stigma by providing enough clues for peers without directly revealing their stigma.
"Normalizing" is the second of these revealing strategies. The normalizing strategy involves revealing one’s invisible stigma, but then minimizing its significance as to appear just as normal as everyone else. While this strategy does involve disclosure of one’s invisible stigma, it also involves an attempt by stigmatized individuals to assimilate into organizations effectively and establish as normal of an existence as they can. Researchers have suggested that this strategy helps stigmatized individuals strike a balance between the desire to reveal their stigma and dealing with the consequences that may result from their disclosure.
"Differentiating" is the third revealing strategy. The differentiating strategy involves not only revealing one’s invisible stigma, but also emphasizing it and how it differentiates one from others. People who use this strategy try to eliminate unfair judgment by presenting their identity as equally acceptable when compared to others. Some researchers have referred to this strategy as deploying one's identity, citing individuals who reveal their stigmas in order to test the perceptions of dominant organizational groups in an effort to inspire organizational change.
A new book published in 2013 entitled "Strictly Bipolar" works to revive and explore the simple idea that----amidst the forest of contemporary bipolarity and its thickets of Bipolar 1-6, as well as the meadowlands of cyclothymia----we can identify “true manic-depression.” Darian Leader, the author, argues that this label describes one way the psyche can be structured. It is a genre of mental experience, if you will, which arises in certain contexts. BPD is characterised by specific motifs, as literary genres are. Much of his book is a subtle exploration of these reoccurring motifs. After 70 years of dealing with BPD, I am more than a little aware of these motifs. Manic-depression is something I have come to regard as a kind of solution to my life experience. My experience of BPD has led me, in recent years, to think afresh about the origins of my manic-depression and pay closer attention to the particular patterns of this condition in my daily life over many decades. A rewarding feature of this fresh take by Darian Leader on my BPD is the lightness, you might call it, with which I have been drawn into original psychoanalytic territory. Darian Leader has led me productively to the thinkers Lacan and Klein, but without the jargon of the latter or what Jonathan Lear termed the “dense and slithering” prose of the former. There is, for me, potential fertility in the work of these two thinkers. But I do not go down this path in this online account.
The meaning of mania can often be found in early childhood experience leading to a sense of debt and responsibility that the sufferer wants to repay. There is often, too, a chemical imbalance that requires identification and treatment. We could and should look beyond any mental illness and see it as being possibly a biological reaction; and we also can go back to the idea of the biopsychosocial model of mental illness. Some say that only long-term psychoanalysis can really get to the bottom of the human condition, and help a person make sense of fluctuating moods. I know from my decades of experience that drugs DO work. I also know that they are not the be all and end all, and that they can cause significant side-effects often described by people as worse than the symptoms they are supposed to help with. Again, what works for the individual is really all that should concern us. It's all that has concerned and now concerns me. The famous film director and actor, Woody Allen, had 37 years of psychoanalysis; in my 70 years of dealing with BPD I could probably find, perhaps, several dozen hours of various forms of talk therapy in which I was engaged. After some 6 months in mental hospitals and psychiatric wings of general hospitals back in the 1960s, I came to eschew all forms of talk-therapy that existed by the 1970s. Many have been helped by various forms of talk therapy, like CBT, and so I would encourage readers, as I often do in this now lengthy account, to work out their own story. I am no authority; I only offer my experience and every person has a different experiential trajectory, although there are patterns and syndromes that make for useful analysis, description and diagnosis of BPD.
A manic episode is defined in the American Psychiatric Association's diagnostic manual as a period of seven or more days or, indeed, any period if admission to hospital is required. This period is characterized by unusually, continuously effusive and openly elated or irritable mood, where the mood is not caused by drugs/medication or a medical illness, like hyperthyroidism for example. This period is also characterized by experience which causes obvious difficulties at work or in social relationships and activities. Admission to hospital to protect the person or others is required. The person also experiences some degree of psychosis. To be classed as a manic episode, while the disturbed mood is present at least three of the following conditions must have been consistently prominent: grand or extravagant style, or expanded self-esteem; pressured speech; reduced need of sleep (e.g. three hours may be sufficient); talks more often and feels the urge to talk longer; ideas flit through the mind in quick succession, or thoughts race and preoccupy the person; over indulgence in enjoyable behaviours with high risk of a negative outcome (e.g., extravagant shopping, sexual adventures or improbable commercial schemes). If the person is concurrently depressed, they are said to be having a mixed episode. Four conditions are required if only irritability is present.
The World Health Organization's classification system defines a manic episode as one where mood is higher than the person's situation warrants and may vary from relaxed high spirits to barely controllable exuberance, accompanied by hyperactivity, a compulsion to speak, a reduced sleep requirement, difficulty sustaining attention and, often, increased distractibility. Frequently, confidence and self-esteem are excessively enlarged, and grand, extravagant ideas are expressed. Behavior that is out of character and risky, foolish or inappropriate may result from a loss of normal social restraint. I leave it to readers with the interest to find out more about manic episodes and, indeed, any one or more of the above symptoms which are now described in the literature in great detail.
I will leave Lacan to readers with the interest. Jacques Lacan(1901-1981) was a French psychoanalyst and psychiatrist who has been called "the most controversial psycho-analyst since Freud". Lacan's post-structuralist theory rejected the belief that reality can be captured in language. I will say one or two things about Melanie Klein. Klein(1882-1960) was an Austrian-born British psychoanalyst who devised novel therapeutic techniques for children that had an impact on child psychology and contemporary psychoanalysis. She was a leading innovator in theorizing object relations theory. Her conception of the Manichean world of the so-called “paranoid-schizoid position” is a potentially powerful one, at least for me. Thanks to Leader, I do not have to wade through Klein's obscure prose. Manic-depression is cast as a response to an underlying need to bifurcate experience, “rather than grappling with the messy, turbulent mixture of love and hate, destruction and admiration, the manic-depressive person opts for a more extreme and ultimately more coherent solution: to separate love and hate categorically, so that one does not contaminate the other. This means, effectively, that the world of the manic-depressive is peopled with devils and angels. It is either copiously full or desperately empty.” All of this is quite complex though and, for now, I will just leave Klein and her ideas for readers to follow-up on if they are interested. I try to place my readers in positions of control; they have to decide what is relevant to them in this long account. I am not handing this information down "ex cathedra" as they say in dogmatic theology or philosophy.
I found Leader's discussion of the reinventions at the heart of mania personally useful. These reinventions, in my case, as a writer and author, poet and publisher, online blogger & journalist, have been structured by ideals of perfectibility, & literary acuity. Paradoxically, writes Leader, the manic subject feels liberated from restrictive norms, whether social, religious, or self-imposed. This lightness is quickly veiled in the sunless depressions that follow. In my case, as I head through my 70s from 2014 to 2024, both the manic and the depressive phases of my BPD have been considerably softened, if not virtually eliminated, so that the highs are not incapacitating; they are leveled-out, so to speak, and the lows are only short-lived, just part of my night-time dream and waking life from midnight to, say, 10 a.m. My dreams in the last several years on these several meds have been generally depressing and fatiguing, dredging-up many tiring aspects of life: unruly students, difficulties in finding some room, some school or some home, and on-and-on goes a litany of bad dreams. After a shower I'm refreshed and the dreams become ancient history and usually totally forgotten.
Depressions receive less of Leader’s attention than mania, sadly, in his account and analysis. In depression, the self turns against itself, and the extravagance and licence in mania provide ample catalysts for damning judgement. Mania’s connectedness and interlocution become self-torment and paranoid aggressive fantasy in the depressive phases. This I can relate to but, as I say, my lows are no longer incapacitating, and my tendencies to mania, hypomania, are significantly attenuated. This has not always been the case but, in recent years, thanks to new and wonderful medications, I do not suffer to the same extent as I did for decades, and as I describe below.
Readers of this new book by Darian Leader are offered a human analytic encounter and it was, for me, a refreshing piece of analysis. But I was not left looking for some transformation which will make the analytic approach to this debilitating form of experience a line of thought that contains the seeds of some transforming set of behaviours. The manic-depressive bifurcations which I refer to above, can be overcome and, as Leader says, this “will almost invariably produce the effect of sadness.” I am certainly conscious of this sadness, but I am also conscious of what you might call a celebratory joy. I will return to these themes at a later date when circumstances, and especially reflections on my experience, permit.
My own somewhat lengthy account below will hopefully provide mental health sufferers, clients or consumers, as they are variously called these days, with: (i) a more adequate information base to make some comparisons and contrasts with their own situation, their own predicament, whatever it may be, (ii) some helpful general knowledge and understanding, (iii) some useful techniques in assisting them to cope with and sort out problems associated with their particular form of mental health problem or some other traumatized disorder that affects their body, their spirit, their soul and their everyday life and (iv) some detailed instructions on how to manage their lives more successfully despite the negative consequences of their BPD, or whatever trauma or illness affects their lives. Of course, I can not guarantee any of this. The traumas that people deal with in life often have a very idiosyncratic aspect, and each person has to work out their own remedy, their own package, their own response repertoire for dealing with the emotional and mental dilemmas that face them as they travel life's road.
For many readers the following pages will be simply too long for their reading tastes and interests. In that case just file this document for future use, skim and scan it as suits your taste, go to the sections relevant to your interest, or delete it now from your reading agenda. Apologies, too, for the absence of an extensive body of footnotes which I was unable to transfer to this document at BLO as this account developed.(2) Perhaps, when time and the inclination permit, I will go through this document and enter the appropriate footnotes. I think that this is unlikely, though, since my life has moved on to other subjects. I am a writer and author, poet and publisher, editor and researcher, online blogger and journalist, reader and scholar. I have many literary interests and, after 70 years of dealing with BPD, it has come to occupy a small slice of my interest inventory as I head for old-age in my 80s, at least according to one model of human development used by psychologists.
Trading in rumors and misinformation sensationalizes real disorders and leads to stereotypes and bigotry. This is evident by any cursory analysis of media coverage of the entire field of mental health. The media fuel the stigma that mental health is dangerous or scandalous, and this fuel prevents people from seeking the life-changing help they need. Because untreated psychiatric disorders are more likely to result in violence, it makes tragedies like the Newtown Connecticut experience in December 2012 more likely to happen again. Speculating about the things we don't know goes on and on; we need to start focusing on what we do know. Additionally, a psychopathic, sociopathic or homicidal tendency must be separated out from mental illness more generally. While the mentally ill can sometimes be aggressive, this is usually because of a wide range of factors that this story discusses in its 260 page(font-14) ramble, and it is a bit of a ramble no matter how much I have tried to systematize the account.
Traumatic experiences like the recent(12/'12) Newtown killings are complex events and it is not my intention in this account of my BPD experience to deal with them except in some tangential sense and, then, only briefly. Mental health and social problems is a sub-field unto itself. There now exist textbooks for social work students and practitioners, textbooks that explore the complicated relationship between mental conditions and societal issues. Such books examine risk and protective factors for the prevalence, course, adaptation to and recovery from mental illness.
People with serious mental illnesses, like schizophrenia, do have a slightly higher risk of committing violence than members of the general population. Yet most violence is not attributable to mental illness. The numbers, the statistics, now provide readers with a vast and growing body of data. People with serious mental illness are 3 to 4 times more likely to be violent than those who aren't. But the vast majority of people with mental illness are not violent and never will be. Most violence in society is caused by other things, other factors. Adding in, factoring in, the mental health records only prevented an estimated 14 violent crimes a year, or less than one half of 1 percent of Connecticut's overall violent crime. Why is that? The people who were actually disqualified from buying guns were only 7 percent of the study population of people with serious mental illness ― and only a very, very small proportion of people at risk of engaging in violent crime. Again, I leave it to readers to wade through this vast body of statistical information.
We need to think of violence itself as a communicable disease. We have kids growing up exposed to terrible trauma. Some years ago, one study looke at violence risk among people with serious mental illness. The three risk factors which they found were most important were: first, a history of violent victimization early in life; second, substance abuse, and the third was exposure to violence in the environment around a person. People who had none of those risk factors, even with bipolar disorder & schizophrenia, had very low rates of violent behavior. Abuse and violence in the environment around a person, these are the kinds of things that can't be solved by having someone take a mood stabilizer.
Such books present bio-psycho-social and life-modelled approaches to helping individuals and families with mental illness. They address specific social problems such as: poverty, oppression, racism, war, violence, and homelessness. They identify the factors which contribute to vulnerabilities and risks for the development of mental health problems including the barriers to accessing quality services. The most current empirical findings are found in such books as well as practical knowledge about prevalence, diagnosis, assessment, and intervention options for a range of common mental health problems including: personality conditions, eating conditions and affective conditions. A variety of focuses include: mental health issues for children, adolescents, adults and older adults with case studies and web resources. Such practical books are ideal for social work students who specialize in mental health, and others.
The extreme sensory sensitivities of many of the mentally-ill are just one of many contributing factors to the endgame of violence. Often the aggression of those with mental health issues is typically harmful to themselves. In the very rare cases where their aggression is externally directed, it does not take the form of systematic, meticulously planned, intentional acts of violence against a community. The media has already come under much scrutiny for its reporting many stories connected with mental health. Television reporters were hotly criticized for interviewing eyewitnesses, many of whom were children at Sandy Hook Elementary School in Newtown right after the trauma of the killing of many teachers and children om that morning. Some media outlets have refused to cross certain lines in their coverage. The internet now has a substantial number of posts on this topic for interested readers.
For two alternatives to reading my somewhat clinical story go to (3) and (4) below. There are now many online life-narratives, narratives which make more interesting reading than my more clinical account. There is, too, an excellent bibliography of the accounts of people's experience with BPD and an analysis of its presence in society.(5)
Bipolarity is the mental illness of our time of these early years of the 21st century, so goes one analyst and author. Not only are sufferers more willing to share their experiences than ever before, prompting a growing sub-genre of “mania memoirs”, but the condition seems intimately connected to the deep changes which are working in our society. As one psychoanalyst suggests, some aspects of bipolarity “seem so well-suited to the exhortations to achievement, productivity and intense commitment that today’s businesses demand”. Diagnoses of bipolarity have risen by 4,000% since the mid-1990s. During the first edition of this account, as I was first retiring after a 50 years student-and-employment life: 1949 to 1999, there were not as many people who suffered from BPD.
As the tectonic plates beneath our economy shift; as the old professions, with their virtues of reliability and reputation are losing their centrality, more people are forced into working on short-term projects. Intense bursts of work, burning the midnight oil, obsessing about projects, are often followed by long weeks lying on the sofa. In between these two types of time-usage, more and more people are marketing themselves with a single-minded belief in their abilities, followed by inevitable “downs” when their plans fail. Again, there is a growing literature on this theme in recent years for readers with a special interest in this aspect of the life-narratives of many very successful people.
Many people are now spending good money attempting to acquire the levels of energy, the self-belief and the fluency that those with bipolar disorder have access to during a manic “high”. Opportunities for diagnosis and self-diagnosis of bipolarity continue to grow. Readers can go on the internet and they can quickly find “diagnostic tests” for bipolarity without having to see a pesky psychiatrist. Discussion boards of the self-diagnosed hum with activity, and encourage discussion of what happens when “highs” tip into mania, and then into self-loathing lows. Wikipedia has a page listing well-known people with BPD, as I point out in the account which follows. Others cast the net back in time to snare Vincent van Gogh and Virginia Woolf and see in their lives an identity with these famous souls. This book is, in the main, a long essay or a type of report on a particular type of mental-health affliction. It does not attempt a detailed, a lengthy analysis or a type of handbook on the intersection between modernity and illness. I leave that to others, others who have come into the field in this 21st century.
Since so much of the content and concern in the mental health world has to due with stress, I want to add the following as part of this extensive and extended preamble to my account of 70 years of bipolar 1 disorder. I want to thank Susan Gammage, Baha’i-Inspired Life Coach for the main part of the content of this sub-section below.
The dictionary defines fear as:
1. a distressing emotion aroused by impending danger, evil, pain, etc., whether the threat is real or imagined
2. concern or anxiety; solicitude: a fear for someone’s safety.
3. reverential awe, especially toward God
4. something that causes feelings of dread or apprehension
5. something a person is afraid of: Cancer is a common fear.
Other words for fear include: worry, anxiety, panic, stress, afraid, dread, hypertension, foreboding, apprehension, consternation, dismay, terror, fright, panic, horror, trepidation and qualm.
The Diagnostic and Statistical Manual of Mental Disorders (DSM), used by psychiatrists and GPs to help them decide which diagnosis a person experiencing mental distress should receive, include the following anxiety disorder classifications:
•Acute Stress Disorder
•Generalised Anxiety Disorder
•Obsessive Compulsive Disorder
•Post Traumatic Stress Disorder
•Anxiety Disorder due to general medical condition
•Agoraphobia without history of Panic Disorder
•Panic Disorder without Agoraphobia and Panic Disorder with Agoraphobia
•Anxiety Disorder not otherwise specified
Once the above items become a medical diagnosis, it’s in the hands of the medical doctors and pharmaceutical companies. Individuals need to keep in mind that, even if given some psychiatric diagnosis, the clients or patients still have responsibilities, and abilities to change. Leaving the whole question in the hands of doctors can be disempowering and unhelpful. The issue here is complex, and I leave it to readers to follow-up on the issues I present here to the extent that interests and concerns them.
Some people suggest fear is an acronym for: False Evidence Appearing Real, False Emotions Appearing Real, False Expectations About Reality, Forget Everything And Run, Forgetting Everything About Reality, Forgetting Everything’s All Right, Finding Excuses And Reasons, Failure Expected And Received, Future Events Appearing Real, Future Events Appear Real, Future Events Already Ruined, Frantic Effort to Avoid Reality.
like these definitions because they suggest there is something wrong with our thinking, and we do have the power to change. However we define fear, some studies suggest that between 60-90% of visits to GPs and other health care professions are stress related. Paxil and Zoloft (two of the more popular anti-anxiety medications) ranked 7th and 8th in the top ten prescribed medications in the US (these two medications totaled almost $5 Billion in sales in 2002). According to “The Economic Burden of Anxiety Disorders,” a study commissioned by the Anxiety Disorders Association of America & based on data gathered by the association & published in the Journal of Clinical Psychiatry, anxiety disorders cost the U.S. more than $42 billion a year, almost one third of the $148 billion total mental health bill for the U.S. More than $22.84 billion of those costs are associated with the repeated use of healthcare services, as those with anxiety disorders seek relief for symptoms that mimic physical illnesses.
Statistics from a recent global stress research study show that stress is felt worldwide, and stress affects women differently than men (The Health Centre, 2006). A recent Roper Starch Worldwide survey of 30,000 people between the ages of 13 and 65 in 30 countries showed that: (1)Nearly one in four mothers who work full-time and have children under 13 feel stress almost every day and report the greatest stress worldwide, and (2) Globally, 23% of women executives and professionals, and 19% of their male peers, say they feel ‘super-stressed’. There are now 100s of studies on the subject of stress and my story makes no attempt to deal with this now complex and super-saturated topic except in the most general of senses.
We need to look to science to find the answers, but we can fall deeper into a hole and, in the end, never get out. It's up to us to work out what is best for our lives. When we look to religion, there are lots of answers from the Divine Physician, a source we can trust. But in this regard, we must be wise and cautious. When we learn to apply the Divine Remedy, there is hope for a complete recovery, but this is not always the case. The world of science can not be completely thrown away, nor can philosophy and religion for that matter.
Perhaps as much as 80% of all diseases are caused by specific sins like: anger, bitterness, jealousy, fear, and worry, so goes one line of thought. One person has coined the following term “pneuma-psychosomatolgy, or PPS. PPS is a field of study and application that encompasses spirituality, theology, science, medicine, psychology and psychiatry. It is a Biblically-based, integrative approach to health beyond disease management. The aim is to find real healing, and to prevent and eradicate disease through understanding the principles of the spirit, soul, body connection. Of course, this is in some ways easier said than done because spiritual principles are not always simple and, when simple, they are not always universally applied and in the same ways.
The terms for fear in today’s society are stress and anxiety. We often do not recognize them as fear. The world tries to find other words to mask the Biblical perspective because the world wants to deal with things psychologically. The activity of a spirit of Fear has been masked as a psychological defect and the big word that hides our true enemy can be found in one term called “negative emotions”. But Paul said in Ephesians 6 that our war, our battle, is not with flesh and blood. This opens a new dimension. No wonder we have not had much success in healing for psychological and biological problems, even in Christianity, because we do not recognize our enemy. The enemy is often ourselves and a whole corpus of sins of omission and commission. We do not even see the spiritual kingdom that is working in us and teaching us how to think in terms relevant to our God. When we see the effects of sinfulness, unrighteousness and immortality in our lives, we just call it a psychological defect. When we see the imbalances of body chemistry caused by fear, such as in anxiety and stress, rather than getting them out of our life and having our mind renewed through the spiritual resources of the Bible or other Holy Book, we try to balance the imbalance of chemistry through psychiatric drugs. That does not deliver us; that does not heal us. It binds us to the problem without the true enemy being defeated.
In fact, so goes this line of reasoning, ours is an attempt to bypass the penalty of disobedience artificially without taking responsibility for the participation, the acts, with sin that caused the disease. This is the key to the equation of the pathways to disease and healing using this paradigm or model of healing. The following caveat needs to be recognized: While I believe it’s true that anxiety has a spiritual component, the House of Justice has said: "Regarding your question about methods of healing which involve temporarily re-experiencing or remembering events, these are complex medical matters and as stipulated in the Teachings, believers should seek the best medical advice which is available and follow it. Experience seems to suggest that the healing process can often be a lengthy and stressful one requiring the close guidance and help of trained professionals. Advice given by well-meaning believers to the effect that you should seek to transcend psychological problems does not qualify as competent advice on what is essentially a medical issue.--(Universal House of Justice, 2/12/'85, Child Abuse, Psychology and Knowledge of Self)" For the last half century I have found the wisdom of the House of Justice to be an essential guide. This guide is, of course, essential for the Bahá'ís and, to a lesser extent those outside the Bahá'í fold. The encouragement of the House of Justice is to consult trained professionals, and in my case this has meant medical doctors and psychiatrists who aren’t trained in the spiritual realities of life.
For major physical diseases, it is widely accepted that members of the public will benefit by knowing what actions they can take for prevention, early intervention, and treatment. However, this type of public knowledge about mental disorders, what is called mental health literacy, has received much less attention. There is evidence from surveys in several countries for deficiencies in (a) the public's knowledge of how to prevent mental disorders, (b) recognition of when a disorder is developing, (c) knowledge of help-seeking options and treatments available, (d) knowledge of effective self-help strategies for milder problems, and (e) first aid skills to support others affected by mental health problems. Nevertheless, there is evidence that a range of interventions can improve mental health literacy, including whole-of-community campaigns, interventions in educational settings, Mental Health First Aid training, and information websites. There is also evidence for historical improvements in mental health literacy in some countries. Increasing the community's mental health literacy needs to be a focus for national policy and population monitoring so that the whole community is empowered to take action for better mental health.
The above preamble is a somewhat lengthy beginning to this book, but it sets the stage. The "introduction" which follows is also somewhat lengthy. Unless readers have a particular interest in this problem of bipolar disorder, and the experience of one person over a lifetime of 70 years, I advise this to be a good place to stop reading.
(1) There is now a list of neurotic and psychotic, personality and non-psychotic mental disorders on the internet. The internet has excellent overviews of each and all of these mental health disabilities.
(2) I have had difficulties placing footnotes into this document and so readers will not find the full list of annotations that I originally placed here. I hope to remedy this problem in a future edition.
(3) The definitive medical monograph, at least for me, on the subject of BPD is: (Manic-Depressive Illness, with Frederick K. Goodwin, 1990; second edition, 2007) and a personal memoir (An Unquiet Mind, 1995).
(4) For a more readable narrative than my rather clinical autobiographical account---go to Charlotte Pierce-Baker's "This Fragile Life: A Mother's Story of a Bipolar Son." This could very well have been my mother's story except for several factors which I discuss in my 200 page and 110,000 word account below.
Charlotte did everything right when raising her son, providing not only emotional support but the best education possible. At age twenty-five, he was pursuing a postgraduate degree and seemingly in control of his life. She never imagined her high-achieving son would wind up handcuffed, dirty, and in jail. This is a moving story of an African American family facing the challenge of bipolar disorder, This Fragile Life provides insight into mental disorders as well as family dynamics. Pierce-Baker traces the evolution of her son’s illness and, in looking back, realizes she mistook warning signs for typical child and teen behavior. Hospitalizations, calls in the night, alcohol and drug relapses, pleas for money, and continuous disputes, her son’s journey was long, arduous, and almost fatal. This Fragile Life weaves a fascinating story of mental illness, race, family, the drive of African Americans to succeed, and a mother’s love for her son.
(5) Two, among the many, books now available which readers who have the interest can Google with a little digging are: The Natural Medicine Guide to Bipolar Disorder, Charlottesville, VA, Hampton Roads Press, 2003; and Emily Martin, Bipolar Expeditions: Mania and Depression in American Culture, Princeton UP, Princeton, NJ, 2007.
BIPOLAR DISORDER: A 70 Year Chaos Narrative
A Longitudinal Context: October 1943 To August 2014
14th Edition, Draft #2
By: Ron Price of George Town Tasmania Australia
(260 Pages: Font 14—110,000 words); Font-16-320 pages
This on-line book is offered for informational purposes & as an aid to others. It is NOT a substitute for medical advice. I make every effort to offer only accurate information, but I cannot guarantee that the information I make available here is always correct or current. Below readers will find my personal, idiosyncratic, story. Consequently, no one should rely upon any information contained herein, nor make any decisions or take any action based on such information. Consult your doctor before starting any diet or exercise program, taking any medication or, indeed, taking any action at all as a result of reading this work.
I am not responsible for any action taken by those who rely in one way or another on the information contained herein and for any damages incurred, whether directly or indirectly, as a result of my errors, omissions or discrepancies contained in this account. The following information is NOT intended to endorse drugs or recommend therapy. While this account might be helpful it is not, as I say, a substitute for the expertise, skill, knowledge and judgement of healthcare practitioners in patient care.
1.1 Like the lengthy preamble above, this introduction which follows is also lengthy. It continues, with the above preamble, to set a wider framework for my particular experience of bipolar I disorder(BPID). What was once very small, indeed, not much more than a long essay of about 2000 words, back in 2001, it is now well over 110,000 words and 260 pages(font-14). It started out as a very short essay 13 years ago in 2001: (a) as a statement to obtain a disability pension in Australia and (b) as an appendix to my memoirs, a five volume 2600 page opus found in whole and in part at various places on the internet. Both this statement and that book of my memoirs could benefit from the assistance of one, Rob Cowley, affectionately known in publishing circles back in the seventies and early eighties as “the Boston slasher.” His editing was regarded by some as constructive and deeply sensitive. If he could amputate several dozen pages, several thousand words, of this exploration of my life experience of bipolar disorder(BPD) with minimal agony to my emotional equipment I’m sure readers would be the beneficiaries. But, alas, I think Bob is dead.
I did find an editor, a proof-reader and friend who did not slash and burn but left my soul quite intact as he waded through my labyrinthine passages, smoothed them all out and excised undesirable elements. But this editor is in the late evening of his life and, after editing several hundred pages of my writing, he has tired of any continued exercise in my literary fields and so I am left on my own. I have begun to assume the role that both Cowley and my friend exercised, but it is a difficult and relentless role and I, therefore, only take it up sporadically given the quantity of my writing which does require editing. Without my editor friend, who is now over 80, and leads a quiet non-editing life, I advise readers not to hold their breath waiting for me to do what is a necessary edit of this now lengthy work. Each edition of this work has involved editing and, as is often the case with editing manuscripts, one can literally edit forever.
1.1.1 John Kenneth Galbraith, the famous economist and a fine writer, had some helpful comments for writers like myself. So, too, did Galbraith’s first editor Henry Luce, the founder of Time Magazine. Both Luce and Galbraith were aces at helping a writer like me to avoid excess. Galbraith saw this capacity to be succinct as a basic part of all good writing. Galbraith also emphasized the music and the rhythm of the words as well as the need to go through many drafts. I've always admired Galbraith, a man who helped me understand some of the mystery that is economics. He passed away while I was writing this book. I’ve followed his advice on the need to go through endless drafts. I’ve lost count of the number of changes, of additions and of deletions to this text. I know I have not avoided excess or repetition among other writing weaknesses that readers will find in the following pages. In some ways I have found that the more drafts I do, the more I have had to say. Excess is one of the qualities of my life, it seems to me, as I muse over seven decades of living, if I may begin the confessional aspect of this work in a minor key.
And so it is that I have Galbraith watching over my shoulder and his mentor, Henry Luce, as well. Galbraith spent his last years in a nursing home before he passed away in 2006 at the age of 98. Perhaps his spirit will live on in my writing as an expression of my appreciation for his work and for a man who lived and worked not far from where I grew up and studied in Ontario, in Canada. His spirit is needed here for there is much editing that is required in this far too-lengthy work; but I do not have the energy or enthusiasm or, perhaps, even the skill, to take on the task.
Spontaneity did not begin to come into this piece of exposition until, perhaps, one of the drafts of its fifth edition back in 2005. Galbraith says that artificiality enters a text along with spontaneity because of the process of writing many drafts. I think he is right; part of this artificiality is the same as that artificiality which one senses in life itself: at least that I sense. Galbraith also observed with considerable accuracy, in discussing the role of a columnist, that a literary man or woman is obliged by the nature of their trade to find significance three times a week in events, often, of absolutely no consequence. I trust that the nature of my work here, as I say a part of my memoir, what I have come to call my chaos narrative, will not result in my being obliged to find significance where there is none. I’m not optimistic though. Perhaps I should simply say “no comment” and accept the reality of the presence of the inevitable gassy emissions that are part of the world of memoirs.
1.1.2 This is not your usual book about illness where someone gets sick, someone gets well, and the story serves as an inspiration. People feel a need to talk or write about their illnesses, and most of us read these accounts with close attention if we have an interest in a particular illness. Such books are written to inform and encourage others, to bear witness to our common fate, and to give advice about how to avert some illness. The more inspiring, cautionary, and tutelary the book, the more eagerly the book is read. The book may even make the best-seller lists. This is not such a book. If it has any function as inspiration, it is far too clinical to ever be popular. It does not reflect the spiritual, metaphysical or religious disquietude that affliction provokes, although some aspects of my subjective, my intuitive, and my religio-philosophical experience are part of my story.
There’s a roster of distinguished preceding examples of the more popular type from Helen Keller’s "The Story of My Life" to the moving book "The Diving Bell and the Butterfly" by Jean-Dominique Bauby, victim of the “locked-in syndrome” from a massive stroke at age forty-three, which left him imprisoned in his paralysed body but with his mind intact; from Montaigne’s description of what it’s like to pass a kidney stone, to Alphonse Daudet’s In the Land of Pain, as he lay dying of syphilis, to Betty MacDonald on her tuberculosis in The Plague and I. There are books on just about any medical condition written from the point of view of the sufferer, the doctor, or a family member, valued testimonials to an apparently inevitable part of the human lot, often treated in painting too, though seldom in fiction, as far as I know, although I have yet to examine this field.
1.2 This is a longitudinal, retrospective account going back to my conception in the last half of October 1943. The story continues up to July 2014, with a few paragraphs in Appendix 10 to foreshadow my final years beyond 2014, the final years of my life whatever number of years that may be, years that this story will deal with in the years ahead as I continue this online account. This statement, even at more than 110,000 words and 260 pages, is still a work in progress, as they say these days, more than 70 years.
1.2.1 Neurobiological, neuropsychiatric and affective disorders like BPD are found in diverse forms as well as in a broad range of age of onset and in a specificity of symptoms. Little is still known about its patho-genesis, that is, the origin and development of the disease. What follows is one person’s story, one person’s life experience of BPD, an illness that silently and not-so-silently shaped my life. It is a focussed account on a part of my personal life-narrative with the many manifestations, the symptamology, of BPD as I experienced it. BPD shaped, but did not define, all that has been my life. It was a medical affliction that made for a certain inconstancy in living, a certain impulsivity, tendency to take risks, a vulnerability to addictions, and much else. BPD is treatable but not curable. My story of that ‘much else’ to which I refer is found here. My entire autobiography is not found here for there is more to my life than this disorder and my experience of its highs and lows, its joys and sorrows.
1.3 I make reference to a strong genetic contribution to the aetiology of BPD, a genetic predisposition, a genetic susceptibility as a factor in the pathogenesis of BPD. No specific gene has yet been definitively linked to BPD, although some chromosome regions have been implicated by several studies. Thus, despite extensive research efforts, the underlying patho-physiology of BPD remains unknown. I have been and still am part of an ongoing study into BPD conducted at the University of New South Wales and, I trust in due course, this illness like so many others will find better and better treatments, if not cures.
1.3.1 A family history, what is sometimes referred to as a family pedigree, of affective disorder in a first-degree relative, in my case my mother(1904-1978) is relevant to this narrative. My mother had a mild case of what may very well have been BPD, at least I have come to think of her mood swings as falling into a significantly high place in what is sometimes called the BPD or affective spectrum during her 75 year life. Her mood-swing disability or affective disorder, though, was never given the formal medical diagnosis manic-depressive(MD), a term which developed from several concepts as early as the 1850s if not centuries before. The term MD was replaced in 1980 after my mother died in 1978 by the term BPD. In retrospect my mother exhibited symptoms which may be more accurately labelled: (a) explosive disorder disability, (b) neurotic disorder: anxiety state or (d) depressive disorder. I know nothing of the mental health of my mother’s parents or grandparents and so am unable to draw on what could be a useful knowledge base to explain the origins of my BPD.
1.3.2 A project involving more than 300 scientists at 80 research centers in 20 countries, and supported by the U.S. National Institute of Mental Health, analyzed the genomes of several thousand people with the five mental disorders and people without the disorders. The results were published in August 2013. The study looked at common gene variants. The total genetic overlap between the disorders is likely higher than what was reported. Shared variants with smaller effects, rare variants, mutations, duplications, deletions, and gene-environment interactions also contribute to these illnesses. Those with an interest in the genetic contribution to BPD need to do more reading. The following post on epigenetics is a good place to start.
22.214.171.124 The specific genes you're born with remain the same throughout your lifetime, except in certain cells as we age, for example, in tumors, but now geneticists increasingly appreciate that the output of our genes varies considerably, not just from year to year but from minute to minute. The genetic read-out of two identical twins is quite similar at birth, but looks very different by age seventy. This understanding, still in its infancy, belongs to a growing field known as epigenetics. In the coming years research projects are set to reveal just how deeply a person can affect the activity of their individual genome - the findings so far are very promising. Epigenetics was actually first proposed back in 1942 to explain how gene activity changes according to one’s lifestyle and environment. This area of genetic study focuses on the “epigenome”, which includes the complex sheath of proteins that surrounds DNA. It has become the focus of intense study because localized interactions help determine how the output of genes is turned up or down.
Your genes act in concert, forming incredibly complicated, fluid relationships. Their activity isn't a simple on/off switch but more like a rheostat. Thus the old picture of genes as fixed, static things has been radically revised: your genetic material is active and highly responsive to such things as environment, emotions, personal and social relationships, diet, level of exercise, biochemistry, including neurochemistry. Since your brain chemistry is directly affected by your thoughts, feelings, and stress levels, even everyday experiences and how you react to them can theoretically affect your gene activity. This new view allows us to see that positive lifestyle changes - meditation, stress reduction, good sleep, a balanced diet, moderate exercise - have a beneficial effect all the way down to the genetic level. Within a very short period, taking up a positive lifestyle alters the activity of 500 genes, according to the findings of Dr. Dean Ornish, the champion of lifestyle as the key in reversing heart disease.
A corollary to this is that some behavioural changes can be passed on to the next generation, through so-called "soft" inheritance. This has been shown in mice and lower organisms, including water fleas. However, future studies will need to tackle the extent to which this happens in humans. Even though the genes a child receives from its father and mother are largely fixed, events that change the parents' epigenome (either positive or negative) can potentially be passed on without altering the DNA sequence of the genome, changing the interaction of DNA with its surrounding protein sheath and its effects on gene activity....I leave it to readers with the interest to follow-up on this subject.
1.3.2 Definition: Bipolar disorder (BPD) or manic-depressive disorder(MD), or bipolar affective disorder is a psychiatric diagnosis that describes a category of mood disorders defined by the presence of one or more episodes of abnormally elevated energy levels, cognition, and mood and one or more depressive episodes. The elevated moods are clinically referred to as mania or, if milder, hypomania. Individuals who experience manic episodes also commonly experience depressive episodes or symptoms, or mixed episodes in which features of both mania and depression are present at the same time. There is a defect in the transmission of sense impressions to the brain, a flaw in communication. (See: Monica Ramirez Basco, The Bipolar Workbook: Tools for Controlling Your Mood Swings, 2006. p. viii).
These episodes are usually separated by periods of "normal" mood, but in some individuals, depression and mania may rapidly alternate, known as rapid cycling. Extreme manic episodes can sometimes lead to psychotic symptoms such as delusions and hallucinations. BPD has now been subdivided into: bipolar I, bipolar II, cyclothymia, and some other types based on the nature and severity of mood episodes experienced. The range of types and experiences is often described as the bipolar spectrum. –See Bipolar Disorder, Wikipedia, the free encyclopaedia. For an excellent overview of the subject of depression go to this link: http://www.nybooks.com/articles/archives/2007/dec/06/talking-back-to-prozac/?page=2 ...The internet is now overflowing with information and stories about depression.
1.3.3 Health professionals categorise bipolar disorder into 3 main types: bipolar 1, bipolar2,& cyclothymia. This is a useful categorisation since, over the years beginning in my late teens, I progressed from cyclothymia(18-23), to BPD2, and then to BPD1. Bipolar 1 disorder is the type of BPD that is characterized by having one episode of mania lasting at least one week, but BPID may or may not have had any episodes of depression. During a manic episode people can become psychotic (lose touch with reality) which can require hospitalisation(June 1968 and May 1980). Bipolar 2 disorder is the label given when people have had at least one episode of depression and a less severe form of mania called hypomania(18-23). Although symptoms aren't as extreme as bipolar 1, the effect on people's lives in the long-term can often be just as significant. Cyclothymia is when people have troubling moods and numerous episodes of hypomania and depression lasting two years or more but they don't meet the full criteria for bipolar 1 or bipolar 2.
Bipolar I disorder is the name given to the diagnosis when a person has hypomanic and, in most cases, depressive episodes. The several typicalities, or the spectrum of episodes for BPD I include: (i) single manic or hypomanic episode, (ii) most recent episode hypomanic, (iii) most recent episode manic, (iv) most recent episode mixed, (v) most recent episode depressed, and (vi) most recent episode unspecified. To the extent that I am labelled BPD I, I would fit into sub-categories (ii), (iv) and (v). In April 2012 a new psychiatrist diagnosed me as BPD I. In the immediate future, the years from, say, 2013 to 2023, this new psychiatrist will be the major professional doctor on whom I will draw when necessary.
1.3.4 The diagnosis of Bipolar II disorder is reserved for those who have primarily one or more depressive episodes and one or more elevated moods. They have highs and lows but never have a hypomanic or manic episode. In BPD II, if the patient does have a hypomanic episode it does not necessarily cause the impairment of their working or family situation. It may even be associated with good functioning and enhanced productivity. Without proper treatment, though, hypomania can develop into mania in some people or can switch into depression. In my case, my elevated mood switched into depression in October 1963, August 1964, and some time in the early months of 1978. I was BPD II or mildly schizo-affective in my four years at university(1963-1967). My mood also switched from normal to manic in May 1968 and May 1980. These were the two times when I went through a full manic episode.
1.3.5 The furore surrounding new versions of the two major classification systems in psychiatry (DSM-5 and ICD-11) is giving way to a more fundamental debate about the nature and origin of mental illness. While recognising the pragmatic benefits of symptom-based approaches, clinicians and researchers look forward to a new era of diagnosis and treatment based on underlying cause.
126.96.36.199 On May 23 2013 two studies were published in the British Journal of Psychiatry. They both added to the evidence of a genetic link between attention deficit—hyperactivity disorder (ADHD) in children and schizophrenia and bipolar disorder in adults. These studies built upon genome-wide analyses published in The Lancet on Feb 28 2013. They showed that five childhood-onset or adult-onset major psychiatric disorders (autism, ADHD, bipolar disorder, major depressive disorder, and schizophrenia) share several common genetic risk factors. Variations in calcium channel activity genes were found to be important in the development of all five disorders, leading to the hope of new molecular targets for psychotropic drug development.
188.8.131.52 The future of psychiatry looks set to change from the current model, in which ADHD, bipolar disorder, or schizophrenia are considered as totally different illnesses, to a model in which the underlying cause of a spectrum of symptoms determines the treatment. The child with ADHD at 7 years could be seen by a child psychiatrist, but at the age of 18 often loses access to mental health services altogether, until he presents with a so-called adult mental health problem. Substance misuse and personality disorders may complicate the picture.
184.108.40.206 Continuity of care throughout a lifetime for those with mental illness and their families is required. Removing the historic barrier between child and adult services to recognise the continuity and evolution of mental health problems is necessary. At present, access to mental health services is often most limited for those most in need. Adolescents and young adults (those aged between 12 and 25 years) struggle particularly to access services, yet have the highest incidence of mental illness. A revolution in psychiatry is needed not only in nosology, but also in service provision.
220.127.116.11 Some interesting manic depressive traits include: non-violence in sufferers who otherwise appear to be raging, a curious empathy and generosity, social and verbal dexterity in mania and a concomitant disintegration in the ensuing depression. The precise meaning of personal histories, as provided by famous cases, such as those of Stephen Fry and Kay Redfield Jamison, need interpretation because people have BPD in idiosyncratic ways. It is the purpose of medicine to identify categories of illness. This is nowhere more philosophically difficult than it is in psychiatry. But if illnesses of the mind exist, medical science has to define the essentials, rather than merely proliferating and subdividing terms. If psychiatry can't do this rigorously, we might as well fall in with the magazine headline: "We're all bipolar now."
1.4 My father also suffered from what seems to me now, in retrospect, a mild case of what today is sometimes called intermittent explosive disorder(I.E.D.) or impulse control disorder(I.C.D.), as opposed to planned acts of violence or a simple temper. Given the rarity of I.C.D., it seems to me that my father had only a mild I.C.D. Other names for I.E.D. include: rage attacks, anger attacks and episodic dyscontrol. People with I.E.D. experience anger which is grossly disproportionate to the provocation or the precipitating psychosocial stresser. My father may have been exposed to this type of behaviour as a child and so his I.E.D. may have been learned rather than organic and brain-centerd. There are also complications associated with the diagnosis of I.E.D. and they include job or financial loss. My father lost much money on the stock market in his early 60s.
1.4.1 My father was also genuinely upset, regretful, remorseful, bewildered or embarrassed by his impulsive and aggressive behavior. This description is an intuition since he and I never talked about his anger. In my father’s late 60s, and perhaps at earlier stages in his life, his disorder also exhibited, or so it seems to me now in retrospect, co-morbidity perhaps due to his genuine sense of remorse, but I don’t know for sure. I know nothing, either, of the mental health of his parents or grandparents all born in the 19th century. My conclusions regarding my father’s emotional disability are largely, as I say, somewhat tentative. Perhaps he just had a bad temper as they used to say until the last three decades when psychiatry began to give his disorder a label.
1.4.2 About half of all patients with BPD have one parent who also has some form of mood disorder. There is then, or so it seems to me, a clinical significance in my mother’s and father’s mood disorders in the explanation of the origins and diagnosis of my own BPD. The high heritability of BPD has been well-documented through familial incidence, twin and adoption studies. There is an unquestionable justification for the inclusion of my family in the understanding of my BPD. No specific gene has yet been identified as the one bipolar gene. It appears likely that BPD is caused by the presence of multiple genes conferring susceptibility to BPD when combined with psychosocial stressors.
1.4.3 Advanced paternal age is a risk factor for BPD in the offspring. Since my father was 55 when I was born, the hypothesis that advancing paternal age “increases the risk for de novo mutations in susceptibility genes for neurodevelopmental disorders” has some relevance to my having BPD.”(Psychiatric News, November 7, 2008, V.43 No. 21, p. 18.) The offspring of men 55 years and older, that same article went on to say, were 1.37 times more likely to be diagnosed as having BPD than the offspring of men aged 20 to 24 years. The maternal age effect was less pronounced. For early-onset cases, that is BPD onset under the age of 20, and that was the case with me, the effect of paternal age was much stronger; whereas no statistically significant maternal age effect was found.
1.5.1 For an elaboration of the subject of the genetic connection of BPD and in utero BPD see: David Healy’s Mania: A Short History of BPD Johns Hopkins, 2008. A short history of BPD is also available on the internet. Genes may also contribute to the age of onset of BPD and this is analysed now in the context of a phenomenon called genetic anticipation. Anticipation refers to the phenomenon of an illness occurring in successive generations at earlier ages of onset and/or increasing severity. In a recent study using registry data of BPD subjects, age at onset of the first illness episode was examined over two successive generations. Subjects born from 1900 through 1939(my mother) and from 1940 through 1959(myself) were studied. The median age at onset of the first episode of BPD was lower by 4.5 years in subjects born during or after 1940. It was not until my mother was in at least her twenties that her first episode of BPD occurred, although this is somewhat of a guesstimation.
Mania varies in intensity, from mild mania (hypomania) to full mania with extreme energy, racing thoughts, and forced speech. Standardized tools such as the Altman Self-Rating Mania Scale and the Young Mania Rating Scale can be used to measure severity of manic episodes. Because mania and hypomania have also been associated with creativity and artistic talent, it is not always the case that the clearly manic bipolar person needs or wants medical help; such persons often either retain sufficient self-control to function normally or are unaware that they have "gone manic" severely enough to be committed or to commit themselves. Manic persons often can be mistaken for being on drugs or other mind-altering substances.
1.5.2 In a mixed state the individual has co-occurring manic and depressive features. Dysphoric mania is primarily manic and agitated depression is primarily depressed. This has caused speculation amongst doctors that mania and depression are two independent axes in a bipolar spectrum, rather than opposites. The mixed state can put a patient at greater suicide risk. Feeling depressed on its own is a risk factor, but when coupled with increased energy, agitation, and impulsivity, the patient is more likely to engage in dangerous behaviour, including self-injury or suicide.
Hypomania is a lowered state of mania that does little to impair function or decrease quality of life. In hypomania, there is less need for sleep and both goal-motivated behaviour and metabolism increase. Though the elevated mood and energy level typical of hypomania could be seen as a benefit, mania itself generally has many undesirable consequences including suicidal tendencies. A single manic episode is sufficient to diagnose bipolar I disorder. Hypomania may be indicative of bipolar II disorder or cyclothymia. However, if prominent psychotic symptoms are present for a duration significantly longer than the mood episode, a diagnosis of schizoaffective disorder is more appropriate. Several types of "mania" such as kleptomania and pyromania are related more closely to obsessive-compulsive disorder than to bipolar disorder, depending on the severity of these disorders. For instance, someone with kleptomania who suffers from impulses to steal things such as pencils, pens, and paperclips is better diagnosed with a form of OCD. B12 deficiency can also cause characteristics of mania and psychosis. Hyperthyroidism can produce similar symptoms to those of mania such as agitation, elated mood, increased energy, hyperactivity, sleep disturbances and sometimes, especially in severe cases, psychosis.
1.5.3 BPD and affective disorders of various kinds run in the family. I am unable to trace my BPD back several generations. If I knew more about the many generations that preceded me in my birth family and their: episodes of hearing voices, delusions, hyper-religiosity, and periods of not being able to eat or sleep—that knowledge could prove useful and, possibly, predictive due to the genetic causal factors in relation to BPD. These episodes, these types of experiences, are often remarkably similar across generations and between individuals according to some studies within modern psychiatry and its pharmacological treatments. This is the story of my BPD and my treatments especially since September-October 1963.
1.6 The goal of what is sometimes called ‘personalized medicine’ is to utilize a person's genetic makeup for appropriate disease diagnosis and treatment, an idea conceptualized initially in the recent years of the Human Genome Project. The current conceptualisation of MD/BPD can be traced back, as I indicated briefly above, to the 1850s, although its history can also go back as far as Turkey in ancient history. Both terms, MD and psychosis, were coined in 1875 by Jules Falret, a French psychiatrist and he recognized its genetic link. German psychiatrist Emil Kraepelin (1856–1926), the founder of modern psycho-pharmacology, also made a major contribution to the early understanding of MD/BPD, only one of the many disorders in the general mood disorder category, but a cyclical mood disorder associated with a circularity between D and euphoria.
1.7 About 37,000 years ago Neanderthals arguably intermingled with modern humans and thus a new gene entered the human genome, the DRD4 7R gene. This gene arguably originated from Neanderthals. This gene is associated with risk-taking, sensation-seeking and novelty-seeking, and correlated with openness to new experiences, intolerance to monotony, and exploratory behavior, features of Neanderthal behaviour. About 10% of the population have the activated DRD4 7R gene. So goes yet another theory on the genetic predisposition to BPD.
1.8 All manifestations of BPD share uncertain etiologies, with often opaque, obscure, relationships between genes and environment. Some medical experts and theorists in the field of such studies posit latent changes in the expression of specific genes initially primed at the developmental stage of life. Some studies and some experts emphasize that certain environmental agents disturb gene regulation in a long-term manner, beginning at early developmental stages in the lifespan perhaps even in utero. There may be, in fact, pervasive developmental disorders that involve a triad of deficits in social skills, communication and language. For the underlying neurobiology of these symptoms, disturbances in neuronal development and synaptic plasticity have been discussed, but I don’t want to comment on this area of complexity, this puzzling area and the aetiology of BPD.
1.8.1 These disturbances, these perturbations, as they are sometimes called, might not have pathological results until significantly later in life. In retrospect, as I look back from these middle years(65-75) of late adulthood, the years 60 to 80 as some developmental psychologists call these years of the lifespan, these perturbations and pathological results were clearly manifested at the age of 18. I could easily theorize an earlier onset on the basis of behavioural perturbations manifested in early childhood and into adolescence and I do such theorizing later in this account(see sections 2.7.1 and 2.7.2 below). The change from psychodynamic models of psychiatry to neurobiological models that dominate the discipline today has been a critical determinant in both my story and its treatment by the psychiatric profession.
1.8.2 People break down as a result of a complex mix of social and psychological circumstances: bereavement and loss, poverty
and discrimination, trauma and abuse. That was certainly true of me, and true several times in my 70 years of living. This is a provocative statement in the face of those who treat mental illness with the neurobiological model. This was the model with which I was treated all my life. The British Psychological Society's division of clinical psychology(DCP) made that statement: "People break down as a result of a complex mix of social & psychological circumstances: bereavement & loss, poverty & discrimination, trauma & abuse." The statement was timed to come out shortly before the release of DSM-5, the fifth edition of the American Psychiatry Association's Diagnostic and Statistical Manual of Mental Disorders in May 2013.
I think the DCP overreacted; they went in the opposite direction, away from neurobiological psychiatry. I agree that drugs cannot cure mental health problems; they can only suppress major symptoms to a degree, not consistently, while adding problems of their own. It doesn't help to ignore biological causes such as genetics, epigenetics, and other largely biological factors. One key is to find the balance and try to address that. My psychiatrists did just that over the years. There is no scientific evidence that psychiatric diagnoses such as bipolar disorder are valid or useful, according to this leading body representing Britain's clinical psychologists. But, as far as I am concerned; I may have done things any differently in the 45 years I have taken medications, but as I head into my 70s I am happy with my present medication regime.
1.8.3 The American Psychiatric Association's fifth edition of the Diagnostic and Statistical Manual of Mental Disorders, or DSM-5, has introduced several high-prevalence diagnoses at the fuzzy boundary with normality, according to Allen Frances, MD, who chaired the task force responsible for DSM-IV issued in 1994. Frances, now an emeritus professor at Duke University, wrote online in Annals of Internal Medicine in May 2013 that changes from DSM-IV will apply disease labels to individuals who may be unhappy or offensive but still normal. Such individuals would include those experiencing "the forgetfulness of old age" as well as children with severe, chronic temper tantrums and individuals with physical symptoms with no medical explanation. There is now a growing body of concern regarding the DSM-V, and I leave it to readers with the interest to follow-up on this aspect of my account.
1.9 I received 2 diagnoses before 1978 and after 1962 from friends, family and concerned others. These two diagnoses were: depression and "a person with complicated troubles", to put it colloquially and in the daily vernacular. I received 2 diagnoses from psychiatrists during this time. The psychiatric diagnosis in 1968 was: a mild schizo-affective state; the diagnosis in 1978 when another episode of low mood, or depression, occurred. The psychiatrist I went to at the time, in Ballarat Australia, treated me with stelazine (trifluoperazine HCl). This was supposed to be effective as a short-term treatment of generalized non-psychotic anxiety.
1.9.1 The diagnosis that was made in 1980 was BPD. BPD is a diagnosis that is standardized according The Diagnostic and Statistical Manual of Mental Disorders (DSMMD-III: 1980, DSM-IV: 1994, DSM-V-5/2013) which provides diagnostic criteria for mental disorders. I use the term BPD not MD throughout this document and I use that acronym. In the DSM-IV MD is a 5 axis/level system of diagnosis that is used.
1.9.2 In my case, axis/level 1 is for clinical disorders that are mood disorders. Axis 3 in this system is for what they refer to as acute medical concerns that relate to BPD; axis-4 is for psycho-social and environmental problems that contribute to BPD and axis-5 is an overall caregiver’s assessment of my functioning on a scale 1 to 100. Most of the successful diagnoses and treatment of my BPD have come from psychopharmacology and its roots in physiological assumptions. In the last decade, say, 2001 to 2011, talking cures and behaviour modification techniques like cognitive behaviour therapy with their roots, their emphasis on assumptions in the domain of intrapsychic experience have also been successful as adjuncts to medications or separate from them.
1.9.3 In my case, my caregiver, namely my wife, evaluated me at 61-70 on the numeric scale in 2007 while I was on what I hoped was my last, my final, medication package. This place on the scale reads as follows: “this adult has some mild symptoms as well as some difficulty in social and occupational functioning. Generally, though, he functions pretty well. He also has some meaningful interpersonal relationships." The bar is set quite high by government departments in order for my wife to get a Caregiver’s Allowance and so it is that she and I have not seriously considered applying for such an allowance. My symptoms are not sufficiently extreme for her to qualify as my Caregiver. Of course, many people do not deal with their BPD story and the relevant government departments honestly and they obtain government assistance when, in all honestly, they should not. Due to the complexity of BPD and its behavioural manifestations it is difficult for all concerned to monitor and report. Readers wanting access to this diagnostic tool can easily find it on the internet. I have appended it to this statement in appendix 2.
1.9.4 With the introduction of psychoactive drugs in the 1950s, and sharply accelerating in the 1980s, the focus in psychiatry shifted from talk therapies like Freudian psychology, to the brain. Psychiatrists began to refer to themselves as psycho-pharmacologists, and they had less and less interest in exploring the life stories of their patients. Their main concern was to eliminate or reduce symptoms by treating sufferers with drugs that would alter brain function. An early advocate of this biological model of mental illness, Leon Eisenberg, a professor at Johns Hopkins and then Harvard Medical School, in his later years became an outspoken critic of what he saw as the indiscriminate use of psychoactive drugs, driven largely by the machinations of the pharmaceutical industry. I mention this here because the subject of psychiatry and the various treatments for mental illness has become highly controversial and complex. The field has always been complex. For some of the claims and some of the defence from critics of medical and therapeutic advances in psychiatry go to this link:http://www.nybooks.com/articles/archives/2011/aug/18/illusions-psychiatry-exchange/
1.9.5 There are many psychological theories which deal with human suffering, far tyoo many to deal with in any comprehensive way in an account like this. I will mention one which has acquired some popularity in recent decades. In Jungian psychology, the shadow or "shadow aspect" may refer to (1) an unconscious aspect of the personality which the conscious ego does not identify in itself. Because one tends to reject or remain ignorant of the least desirable aspects of one's personality, the shadow is largely negative, or (2) the entirety of the unconscious, i.e., everything of which a person is not fully conscious. There are, however, positive aspects which may also remain hidden in one's shadow (especially in people with low self-esteem). Contrary to a Freudian definition of shadow, therefore, the Jungian shadow can include everything outside the light of consciousness, and may be positive or negative. "Everyone carries a shadow," Jung wrote, "and the less it is embodied in the individual's conscious life, the blacker and denser it is." It may be (in part) one's link to more primitive animal instincts, which are superseded during early childhood by the conscious mind. I leave it to readers with the interest to examine this particular psychological theory in more detail.
1.10 The literature now available to those wanting to explore the subject, the field of BPD, is massive both on the internet and off and much of it should be considered by readers wanting to become more familiar with BPD. My story is only one of thousands, if not 100s of thousands, now available. Readers wanting what to me is the best resource to help them deal with BPD should go to Sarah Freeman, The Bipolar Toolkit, 2009. It is far better than this personal, idiosyncratic and non-systematic account.
1.10.1 A good example of one of the most recent findings is from psychologists at the Universities of Manchester and Lancaster in a study published in April 2011. These psychologists say their findings are important because they mean talking therapies, like cognitive behavioural therapy (CBT), could prove effective treatments for BPD. Mood swings of people with BPD, these findings indicate, can be predicted by the current thoughts and behaviour of BPD sufferers. People with BPD are prone to extreme mood swings that take them from great emotional highs to the pits of depression; the cause of these mood swings is often put down to the patients' genes and biology rather than their own thoughts and actions.
In a recent study published in the American Psychological Association journal Psychological Assessment, researchers followed 50 people with BPD for a month. The team found that the patients' thinking and behaviour predicted their future mood swings even when their medical history had been accounted for. "Individuals who believed extreme things about their moods; for example, that their moods were completely out of their own control or that they had to keep active all the time to prevent becoming a failure, developed more mood problems in a month's time," said study lead Dr Warren Mansell, in Manchester's School of Psychological Sciences. "In contrast, people with BPD who could let their moods pass as a normal reaction to stress or knew they could manage their mood, fared well a month later," said Mansell. These findings are encouraging for talking therapies such as CBT that aim to help patients to talk about their moods and change their thinking about them."
A new form of CBT, known as TEAMS (Think Effectively About Mood Swings), is being developed by Dr Mansell and colleagues, at The University of Manchester. It aims to improve on previous therapies by focusing on current problems, like depression, anxiety and irritability, and helping patients to set goals for their life as a whole.
The aim of this new approach is to encourage patients to accept and manage a range of normal emotions – like joy, anger and fear – and a controlled trial is about to start following a successful case series of the TEAMS approach. The researchers will use the TEAMS approach to follow up their current findings with a larger study that identifies who relapses and who heads towards recovery in the long term.
In addition, MRP (The Mind Resonance Process) totally unrelated to CBT claims to permanently and completely delete the negative thoughts, emotions (and negative memories responsible for the former) and helps to restore resilience, self-esteem, self-confidence, and much more. Clients who have failed CBT, EFT, EMDR, psychotherapy, NLP, hypnosis, etc. often achieve significant and permanent life changing success with MRP empowerment coaching.
We all have a life history "movie" which is always playing in the background and acting as a "set point" to which we always are drawn (down) back to. We all carry our history in this script or movie form and are simply not able to transcend it easily. Hence the need for all the talk and all the medications.
1.10.2 The original conceptualization of stress and the stress response has been developed based on the understanding that certain environmental exposures and life events can be both detrimental to individual's health and well-being, and also promote physiological responses that can be adaptive. I have little doubt, as I review those episodes of BPD in my life, that my exposure to environmental and life events at the time preceding those episodes were detrimental to my health. My vulnerability to stress, or the negative consequences of stress may have been due to a lack of resilience. Only recently has the field of psychiatry started focusing on the concept of resilience, exploring the possibility that, similarly to stress vulnerability, there could be unique mechanisms involved in resilience to stress. For more on this topic go to this link:
1.11 BPD is not medically curable, as I point out elsewhere in this account, but it is possible through psychiatry, medicine, some types of talk therapy like the one indicated above, and nutritional supplements or adjuncts, to achieve varying degrees or periods of long-term stability. BPD needs to be managed like many other chronic diseases, with combination therapies and long-term treatment in order to achieve sustained success. I feel I have achieved this stability and this success by degrees since the 1960s. This is not to say that I have never had any more episodes since those 1960s, that I have not become hypomanic(i.e. mild mania) again, nor exhibited other symptoms of BPD. I have had five, and arguably as many as seven, decades of experience of BPD symptoms and some of these symptoms are still in my day-to-day life. This lengthy 90,000 word statement is an account of my experience in achieving varying degrees of stability at various periods of my life.
1.11.1 I should emphasize at the outset of this statement that some research shows that some forms of psychotherapy or talk therapy are an effective substitute for or accompaniment with medication. Medication plus a structured psychotherapy has been compared to medication plus a less structured psychotherapy or medication alone. Building on earlier studies over the last 5 years, a variety of psychotherapy techniques have been evaluated, including family-focused treatment (FFT), cognitive therapy (CT), group psychoeducation, and interpersonal and social rhythm therapy (IPSRT). For all approaches, the addition of the structured psychotherapy added additional benefit, as measured by a variety of outcome variables, including longer survival time before relapse, fewer relapses, greater reductions in symptom rating scales, enhanced compliance, fewer days in mood episodes, improved social functioning, and fewer and shorter hospitalizations.
At the age of 69 and generally happy with my medication regime, at least in many respects, I do not seriously entertain these psychotherapeutic approaches after more than 30 years of dependence(1980-2014) on mood stabilizers, anti-psychotic, and anti-depressant medications. It has become increasingly common from the 1980s to the 2010s for psychiatrists to prescribe mood stabilizers for BPD, and there is now more than a little evidence that these medications can be effective in reducing some of the emotion dysregulation and impulsivity symptoms of the disorder in particular.
I may seriously consider engaging in talk therapy in the years ahead; I may also entertain a change in my medications. Time will tell. I have taken medication in some form for some 46 years, as far back as June 1968. Although I acknowledge the research showing that health food and nutritional supplements like fish oil, for example and/or vitamins and minerals and/or amino acid(s) are of some value for BPD, and although I in fact take these supplements, I am still not prepared now after all these years to ‘go-it-alone’ without the medication. Both my GP and my psychiatrist concur with this decision. Symptom reduction is one of the main aims of any talk therapy or psychotherapy in general, and can be regarded as the benchmark against which the success of behavioural and cognitive therapies is to be measured. Elucidation of the neural correlates of symptom reduction is a primary goal of any investigation into the biological mechanisms of psychotherapy. But, as I say, I don't go down this road and haven't since going onto lithium in 1980.
The first DSM (1952) and its successor, DSM-II (1968), were heavily influenced by the psychoanalysis then dominant in the United States. But with DSM-III in 1980 there was a new beginning. One notable cause, aside from the waning of psychodynamic therapy was the discovery of a genuinely effective drug for controlling mania. The Australian John Cade found that lithium really helped, and after a lot of scepticism (and many unwitting overdoses) the Federal Drug Administration approved its use in 1970; in 1974 it was approved for the treatment of manic depression. Before that, there was really no effective chemical treatment for any mental illness, but now there was something that worked. So clear behavioural criteria were necessary to identify who would benefit from lithium. It may seem perverse to express nostalgia for a category of mental illness, but many sufferers, as well as some psychiatrists, regret the passing of the term "manic depression". The American Psychiatric Association formally rebranded it "bipolar disorder" in 1980. Many disliked the newer term "bipolar" finding it to sound tinnily conceptual by comparison to MD. In the 1980s the term BPD was also adopted by British psychiatrists. Many resolutely continued to call themselves manic depressive.
For many, though, and certainly for me, the life journey of modern scientific psychiatry seemed to have begun. More than 30 years later psychiatry seems to be heading into a dark wood. This dark wood was described in the January edition of The Lancet. The Lancet is a weekly peer-reviewed general medical journal. It is one of the world's oldest and best known general medical journals, and has been described as one of the most prestigious medical journals in the world. The Lancet was founded in 1823 by Thomas Wakley, an English surgeon who named it after the surgical instrument called a lancet, as well as after the architectural term "lancet arch", a window with a sharp pointed arch, to indicate the "light of wisdom" or "to let in light". What follows is from an article in the 4 January 2014 edition of the Lancet.
18.104.22.168 In 2013 the US National Institute of Mental Health(NIMH)withdrew its support for the Diagnostic and Statistical Manual(DSM). The DSM has often been called the “bible of psychiatry”. Pharmaceutical companies are to some extent pulling back from psychiatric research and drug development. Activists, journalists, and academics from various perspectives are criticising psychiatric research, diagnoses, and treatments. Psychiatry, it seems, has gone astray from the road it set out on during the late 20th century and now seems to be veering into Dante's “arduous wilderness”.
In 1980 I was stabilized on lithium, and the American Psychiatric Association published—with much fanfare—the third edition of DSM. Leading psychiatrists at the time hailed DSM-3 as a revolutionary book that would lead to considerable modernisation of psychiatric diagnoses and treatment. It heralded a major shift away from psychoanalysis towards a more scientific approach to psychiatry. Unconscious conflicts, childhood traumas, and talk therapy gave way to broken brains, neurochemical imbalances, and psychopharmacological treatments. It seemed this tide of “modernisation” would go on indefinitely: more drugs would be developed, there would be more advances in neurological research, and the wave of scientific psychiatry would keep flowing forward. Instead, 34 years after the “revolutionary” DSM-3 was published, psychiatry has run into doubt, criticism, and uncertainty.
It is important to note that when the NIMH withdrew support for psychiatry's diagnostic manual, including the most recent DSM-5, it also questioned the validity of DSM categories. NIMH researchers are now trying to reorient research efforts to develop an entirely new set of categories for mental difference and suffering that is more directly connected to observable laboratory measures—a process that the NIMH estimates could be 10 years or more in the making. By the time this new set of categories emerges I will be 80. Old-age will have finally caught-up with me, at least old-age using one of the more popular models of the lifespan used by developmental psychologists.
Not only has the NIMH cast a vote of no confidence against DSM, pharmaceutical companies seem to some extent be pulling back their research and development of psychopharmacological drugs. Although the pharmaceutical industry is not exactly “in” the field of psychiatry, it has been intertwined with the specialty for the past few decades. Indeed, many critics of psychiatry argue that it was the power of pharmaceutical promotion that solidified the current consensus in psychiatry. Without resources for research and marketing from one of the world's most profitable industries there is a drying-up in the pipeline for psychiatric medications and, perhaps more important, a reduced funding source for the current consensus in psychiatry.
Psychiatry is also facing increased calls for reform from people with lived experience, peer specialists, anthropologists, sociologists, philosophers, social activists, attorneys, and journalists. This criticism is reminiscent of the protest around psychiatry during the 1960s and 1970s, which in part stimulated the birth of scientific psychiatry in the first place. It was during the 1960s and 1970s that I first had my own life-narrative entwined with psychiatry.
22.214.171.124 While their opinions naturally vary, today's critics share a belief that the current system of psychiatric care needs to be vastly improved and, many would argue, transformed. Few of these voices are “against” psychiatry, but all lament psychiatry's near-exclusive turn to pharmaceutical treatments in the past few decades. Biology and medications are part of psychiatric treatment, research, and education, they argue, but the question remains, how much and in what proportion? For most contemporary critics, psychiatry's current biological focus results in excessive preoccupation with only a portion of the variables relevant for mental health.
What do these signs of doubt and instability mean for the future of psychiatry? Are we hearing the sounding of the death knell? Or will this tough passage through the current dark wood lead eventually, as it did for Dante in The Divine Comedy, to newer and more enlightened places? Modern psychiatry is going through a midlife crisis; will it come out renewed and transformed on the other side? It is certainly possible that modern scientific psychiatry will restabilise itself. The Psychiatric Genomics Consortium, for example, has used large genetic databases to find shared genetics among major psychiatric disorders. In addition, last year the Obama administration endorsed a new brain activity map project, Brain Research through Advancing Innovative Neurotechnologies (BRAIN). The BRAIN initiative will be comparable to the Human Genome Project in its capacity to shape future research & will likely have sufficient successes to attract the pharmaceutical industry back into psychiatry. But mapping the brain is a long-term project, and while it will have successes, these will be piecemeal and disconnected for some years to come.
Before psychiatry rushes in to “save” its bioscientific self, however, it seems this moment offers an opportunity for self-reflection and deeper understanding of the process of psychiatric meaning-making. Psychiatry can take advantage of its current instability to take a bird's-eye view of how all the possible models of mental difference are created and propagated—whether biological, psychoanalytic, cognitive, creative arts, family, recovery, or biopsychosocial, just to name a few. If we step back from the particulars, we can see that all these models work through root metaphors that structure our understanding and perception by foregrounding and backgrounding different variables. These root metaphors become models through systematic development in a research and treatment community and, from there, seep out of the clinic to join other cultural tools that people use for storytelling about mental health problems.
Such a deeper understanding of how mental health models are used for meaning-making is already developing in psychiatry under the banner of narrative, narrative theory, and narrative psychiatry. During the period in which psychiatry has been relentlessly pursuing science, the humanities and the social sciences have seen an explosion of research in narrative and narrative theory. This narrative ferment, recently picked up within psychiatry, offers not only a way for psychiatry to reconnect with the larger university beyond the sciences, but also a deeper reflection about the way psychiatry makes meaning and constructs its models.
126.96.36.199 The implication of narrative for psychiatry is that there are many ways to tell the story of mental health problems—not just one right way and many other wrong ways. All the models of psychiatry can work as potential tools for storytelling about mental disorders. No matter which model or combination of models one uses, the process of healing involves an initial set of problems that the person is unable to resolve. Through clinical dialogues, patient and psychiatrist use one or more models to bring additional perspectives to patient problems, allowing patients to understand them in new ways. The perspectives vary greatly depending on the models used. The metaphors of broken brains, unconscious conflicts, cognitive distortions, and family dysfunctions differ greatly. But, from the vantage point of narrative theory, all of these perspectives, when used for storytelling, allow the possibility of reworking the initial story into a new one. Having a new story can allow new degrees of flexibility for understanding past and present troubles and provides new strategies for moving into the future.
None of this means the end of a biological model, psychiatric medications, or emergent neuroplastic training practices. Just the opposite. The biological model is now, and will remain, a critical tool for understanding and intervening in psychiatric troubles. This will only become truer as we move into a brave new world that maps out biological markers for our mental traits and processes. Taking a narrative turn does not mean abandoning the biological model or any other. A narrative turn says all the models are valuable if used self-reflexively in dialogue with patients and in the service of recovery. Ultimately, it is the patient's choice which model or combination of models best fits their goals and desires. Our task as psychiatrists is to help navigate the process and the options. This kind of narrative self-reflexivity helps us remember that the allegiance is to patients, clients or consumers—not to the models themselves. Recovery, not loyalty to models, is the goal.
188.8.131.52 Finally, and equally important especially for me as the author of this narrative, the field of psychiatry needs narrative to tell the stories of those who consume its services. I would argue that psychiatry is not exclusively bound to a biological model as the only way to understand ourselves. When the NIMH announced that it would abandon DSM, it also unequivocally reasserted the biological model, telling us that “mental disorders are biological disorders”. Psychiatry does not need to accept as its main, as its only tool, a dogmatic biological story of psychiatry. Psychiatry has an opportunity in this time of instability in these early years of the 21st century to more consciously shape its professional identity. As psychiatry navigates the current wilderness, some of the most valuable questions for individual psychiatrists and the field as a whole are narrative questions. Where has psychiatry been in the past? Where is itnow? Where is it going in the future? All of these questions are to some extent about narrative identity. What and who does psychiatry want to be in terms of its practitioners and as a profession. Science alone can not answer this question. Psychiatry must locate itself in a story to make sense of itself and to plot its way forwards.
1.11.2 Here is the entry for Bipolar I disorder in the DSM-V: Co-occurring mental disorders are common, with the most frequent disorders being any anxiety disorder (e.g. panic disorder, social anxiety disorder, specific phobia), occurring in approximately three-fourths of individuals, ADHD, any disruptive impulse-control or conduct disorder (e.g. intermittent explosive disorder, oppositional defiance disorder), and any substance abuse disorder (e.g. alcohol abuse disorder) occur in over half of individuals with Bipolar I disorder.
Some are now attacking the increasing use of bipolarity as a lifestyle term: a cultural shift from the fad for depression of the 1980s to a more recent fascination with mood swings and the "creativity" of mania, as evoked by Claire Danes in Homeland, or Bradley Cooper in Silver Linings Playbook. Some are now blaming the forces of pop culture and pharmaceutical marketing for turning a categorical psychiatric concept into a dimension of symptoms: a mood spectrum wide enough to encompass almost anyone who experiences highs and lows.
Between the third edition of the Diagnostic and Statistical Manual of Mental Disorders, published in 1980, and the fifth edition, published in 2013, diagnostic subdivisions have proliferated, allowing for bipolars 1, 2, 3 and so on. This has had a far greater impact on American rates of diagnosis than it has had on British ones. When a diagnosis seeks to be both categorical and dimensional – at once a disease and a spectrum of symptoms – it loses the power of definition some argue.
I could go to see a counsellor, general psychologist or a clinical psychologist for some talk therapy, perhaps CBT. My psychiatrist is a specialist in pharmacology and in treating BPD among other psychiatric illnesses. Psychiatrists are more trained in pharmacology than psychologists. Some critics of psychiatry and psychiatrists go so far as to say pharmacology is their "weapon" against mental illness. I do not see my shrink, my psychiatrist, as using pharmacology as a weapon in his arsenal. I have not seen my old, my previous, psychiatrist for 6 years, since November 2008. In April 2012 I began seeing a new psychiatrist because I believed my needs to be chemical, pharmacological. I had been taking the same 2 meds for five years(2007-2012) and my wife wanted me to have a second psychiatric opinion.
If I want to tweak my meds I can visit him or just work out a different package in consultation with my wife and/or my GP. I have discussed my memory and OCD issues with my psychiatrist several times, but both my psychiatrists have felt these were not serious enough problems with which I should be concerned. Often my regular doctor, my GP, nails my problems and takes away any need I have to see my psychiatrist. After four visits to my new, my latest psychiatrist in April-May 2012, I now work out any issues arising from my BPD with my wife.
184.108.40.206 Thanks to: (a) shock anti-schizo-affective treatment and supportive psychotherapy in the 1960s, and (b) ongoing medications--I have had quite a “normal” life. In my case this normality is found in: (i) my capacity to devote my time and my professional life to intellectual and service occupations, basically teaching in the social sciences and humanities, and (ii) my maintaining an active intellectual life, with hope, strength, and making sense of reality. Another important point in this complex of normality has been my religious faith. Without these several factors, the pharmacological treatment alone would, quite likely, have failed. BPD1 is a horrible illness for most who have to deal with it, but nowadays I can say it is possible to have a “friendly” relationship with this enemy of the mind.
People with BPD have, in some ways, a fragile purchase on the world, and it is much more important that they have somebody—a professional in the public world and a friend in their private world—who can, over time, create that state of trust that is essential for ongoing daily life. This is true, of course, for all of us with or without mental illness, when the dark clouds of life roll in and overwhelm us. I have been fortunate to have such people as far back as the first episodes of BPD.
220.127.116.11 Though not as severe as full-blown Alzheimer’s disease or other forms of dementia, mild cognitive impairment is often a portent of mind-robbing disorders like Alzheimer’s. One study described seven stages of Alzheimer’s disease. Mild cognitive impairment was seen as a mild Stage 3 of Alzheimer’s. It is a condition of subtle deficits in cognitive function that nonetheless allow most people to live independently and participate in normal activities. Mild cognitive impairment could be described as an intermediate state of cognitive function, somewhere between the changes seen normally as people age and the severe deficits associated with dementia. At worst this is what I have, a mild cognitive impairment, but I am strongly disinclined to think so; at the age of 69 this is just a guess when I focus on the negative aspects of BPD.
With both the preamble and the introduction now completed, I shall now proceed with this book and its 14 chapters including a 15th chapter containing ten appendices.
A. SOME OPENING REMARKS
1. Defining what psychiatry is & what mental illnesses are can often seem a circular process.However circular it may appear, definitions of terms and disorders can't be underestimated. Definitions also seem to be an increasingly complex process. Psychiatry, as it is currently constituted, is a branch of medicine. Contemporary psychiatrists aspire to practice their skills within the vast structure that is modern medicine; the vast majority of psychiatric practice fits what is called a medical model. People present with symptoms and exhibit signs which are examined. If these symptoms and signs are deemed to provide evidence of pathology, they lead to a diagnosis of an illness.
1.1 Investigations and treatments are ordered in a systematic way. Medications and other interventions are prescribed to treat the illness. The cessation of the symptoms and signs marks recovery from the illness. This is, on the surface, similar to how an ophthalmologist would approach cataracts, or a respiratory physician a chronic obstructive pulmonary disease. Dictionary definitions of psychiatry describe it as the medical specialty concerned with mental illness, for example, in the Oxford English Dictionary. Psychiatry textbooks generally gloss over the actual meaning of mental illness; they also assume it has a readily understood and commonly accepted meaning.
1.2 “Diagnostic validity” means that a diagnosis is in fact a correct one. It differs from a related concept, reliability, which describes how well diagnoses match each other—a reliable diagnosis of BPD means that other clinicians would come up with a diagnosis of BPD given the same case. It is possible for a diagnostic process to be reliable but not valid, although validity implies reliability. Validity implies that one is describing an entity whose existence and nature is not disputed. It does not address fundamental questions of what this entity actually is. Psychiatrists spend much of their time trying to improve the image of psychiatry within medicine by insisting it is a scientific enterprise characterised by the assumptions of expertise, specialist knowledge and greater objectivity that it is assumed are possessed in full by other medical specialties. However psychiatry, as shall be seen, is also intimately concerned with values and the concerns of the humanities. The tension between the worldviews of ethical and political philosophy on the one hand and the traditional scientific view on the other is particularly acute in psychiatry. The concept of “mental illness” can be considered an assumption in common usage within the psychiatric profession and, perhaps,in wider society. This concept has been subjected to a thoroughgoing critique from philosophers,psychiatrists, psychologists, social workers, political scientists, feminists and many other figures.
1.3.1 This critique has taken five main approaches:
(a) a psychological model, as exemplified by the British psychologist Hans Eysenck, arguing that mental disorders are in fact learned abnormalities of behaviour (Eysenck 1968)
(b) a labelling model, as exemplified by the American sociologist Thomas Scheff, who argued that the features of mental disorder are in fact a response to the labeling of an individual as “deviant” (Scheff 1974)
(c) a “hidden meaning” model, postulating that the apparently irrational, harmful or meaningless behaviour associated with mental disorder is in fact meaningful. The Scottish psychiatrist R.D. Laing, for instance, argued that “madness” was a sane response to an insane society. (Laing, 1960)
(d) an “unconscious mind” model, influenced by psychoanalysis, which postulates that, again, the apparently irrational can be comprehended, this time with reference to the unconscious mind.
(e) a political control model—this critique of psychiatry sees it as a legitimising the social status quo and allowing those who dissent from it to be labelled mentally ill. The practice of psychiatry in the former Soviet Union exemplifies this.
Another example is the feminist critiques of post-natal depression, which feminists would argue reflects society’s treatment of mothers rather than being a disease per se. Thus legitimate distress at the unfair structure of society is pejoratively labelled an illness. Similarly, the Franco-Algerian psychiatrist Frantz Fanon argued that psychiatry was a tool of colonial control
and part of the hegemonic order of industrial capitalism.
1.3.2 This questioning, much of which has been posed by psychiatrists, has forced psychiatry to scrutinise its own concept of what constitutes mental illness. Many of the critiques are more about the role of various psychological, social and political factors in the development of mental illness, rather than being an attack on the basic concept of mental illness. Other critiques have not so much been of psychiatry as a discipline or practice, but on the cultural significance of a therapeutic ethos, for instance that of Philip Rieff in “The Triumph of the Therapeutic.” (1965) For Rieff, the rise of psychotherapy and the “psychological man”—marked a turning point in human culture, being the death-knell of a Western culture whose ideals had lost their power to deeply pervade the characters of its members. In a therapeutic ethos, truths are contingent and negotiable, and commitments or faiths only survive as therapeutic devices easily discarded in the interests of therapy. For Rieff, this is a symptom of Western cultural decadence and decline.
1. Much of the “antipsychiatry” critique has been absorbed into mainstream psychiatric thinking and practice. Psychiatry is generally practiced in the community in a multidisciplinary, biopsychosocial fashion, and psychiatrists themselves lobby for extra
resources to achieve this. Government policies enshrine the concept of patient-centred care that meets holistic needs and aims for “recovery” that goes beyond the simple alleviation of symptoms (Expert Group on Mental Health, 2006.) Compulsory treatment
of those diagnosed as mentally ill is surrounded by tight regulatory control in Western societies. However, for the most thoroughgoing anti-psychiatrists favour not tighter controls on compulsory admission, but the complete abolition of the
phenomenon.One of the most influential critiques is that of Szasz (Szasz, 1960).
1.1 Szasz disclaims the label “antipsychiatrist” and also insists he is not a philosopher, however his work could be seen both as the quintessence of “antipsychiatry” and as having a strong influence on philosophical approaches to mental illness. Throughout his career he has stated emphatically that illness requires the presence of a physical lesion which causes disease. With mental illnesses, there is no identifiable physical lesion. Therefore “mental illness” is a myth. This is not to say that the phenomena described as mental illnesses are not actually happening, but that they are not illness. “Mental illness” involves a value judgement, whereas the diagnosis of bodily illness does not. What has formerly been termed mental illnesses are in fact “problems of living.” This leads Szasz to a radical and continuing critique of psychiatry as a discipline (Schaeler, ed, 2004.) This subject is discussed in 100s of articles in cyberspace and I leave it to readers with the interest to follow the subject-up in detail.
1. This is a useful juncture to say a few things about co-dependency. Codependency is, at it's core, a dysfunctional relationship with self. We do not know how to love our self in healthy ways because our parents did not know how to love themselves. We were raised in shame-based societies that taught us that there is something wrong with being human. The messages we got often included that there is something wrong: with making mistakes; with not being perfect; with being sexual; with being emotional; with being too fat or too thin or too tall or too short or too whatever. As children we were taught to determine our worth in comparison with others. If we were smarter than, prettier than, to receive better grades than, faster than, etc. - then we were validated and got the message that we had worth. In a codependent society everyone has to have someone to look down on in order to feel good about themselves. And, conversely, there is always someone we can compare ourselves to that can cause us to not feel good enough.
1.1 Codependency could also be more accurately called outer or external dependence. The condition of codependence is about giving power over our self-esteem to outside sources/agencies or external manifestations. We were taught to look outside of ourselves to people, places, and things; to money, property and prestige, to determine if we have worth. That causes us to put false gods before us. We make money or attain some degree of achievement or popularity or material possessions or the "right" marriage and these things are a type of higher power that determines if we have worth. We take our self-definition and self-worth from external manifestations of our own being so that looks or talent or intelligence become the Higher Power that we look to in determining if we have worth. It seems to me that everyone is, to some extent, co-dependent, and for this reason I have included this brief discussion here in my BPD account. For a comprehensive overview of the nature of co-dependency go to this link:http://www.survivingbipolar.com/green_codependence.htm
D. DIAGNOSIS OF BPD
1. In the DSM-4(1994), and in the DSM-5(2013), it is much easier to get a diagnosis of BPD. Allen Frances, a critic of both the DSM-4 and the DSM-5, says that this ease, this extension, this widening of the definition and criteria for diagnosis, has created an incredible opportunity for drug companies. "Drug companies got indications for treating BPD," Frances says. "Not just with mood stabilizers, but also with the newer antipsychotic drugs. And they began very intensive ubiquitous advertising campaigns. The rates of BPD have doubled since the early 1990s. Many people have now had too much antipsychotic and mood stabilizing medicines. And these aren't safe drugs." "If diagnosis can lead to over-diagnosis and overtreatment, that will happen. Doctors need to be very, very cautious in making changes that may open the door for a flood of fad diagnoses." As far as Frances is concerned, the new DSM-5 is proposing too many diagnoses that are written in too broad a way, meaning that ultimately a huge number of new people will be categorized as mentally ill. But there are others, many, who do not agree with Frances. They see this new definition of BPD as an enabling process so that those who would not otherwise get treated will.
2. Since 1952, the Diagnostic and Statistical Manual of Mental Disorders, better known as the DSM, has been providing brief descriptions of each psychological malady said to afflict a patient. This bible of mental health treatment is published by the American Psychiatric Association (APA). Over the decades, the manual, adapted from a guide for mental diseases developed by Army and Navy psychiatrists, has ballooned. The number of listed disorders tripled to nearly 300. A few have been discredited and dumped along the way. As the task force producing DSM-5 posted drafts on its website: http://www.dsm5.org/Pages/Default.aspx an undercurrent of dissatisfaction exploded into a full-scale revolt by members of U.S. and British psychological and counselling organizations. The chief complaint is that the newest version will lower the criteria needed to diagnose some conditions, creating “sub-threshold” disorders, and generally making it easier for healthcare professionals to label a person with a psychiatric disorder and medicate him or her.
3. Should a future DSM, however, adopt softer criteria, we may well see bipolar disorder broken down not only into I and II, as it has been since the 1994, but also bipolar III, IV, and maybe even V. We are talking about a multipolar phenomenon. A Dr Akiskal has been the main proponent of an expanded definition of BPD, one that would incorporate a good deal of the current unipolar population. Dr Akiskal has pointed out that many patients with so-called unipolar depression exhibit certain hypomanic (mild mania) symptoms. Though these symptoms may not add up to an actual hypomanic episode, Dr Akiskal maintains they constitute sufficient evidence of bipolarity. He thus has urged that this population be diagnosed accordingly. Even the best psychiatrist in the world is only as good as what you tell him or her, and his own knowledge base and set of biases. As well as confiding to your psychiatrist about how miserable you are, you should come prepared to talk about those times you felt agitated and irritable and even a little hyper. In other words, give your psychiatrist something to work with. The profession is still learning, but even a marginal improvement in outcome can make all the difference in the world, insofar as these factors are taken into consideration.
Go to these two links for more information: http://www.mcmanweb.com/multipolar.html and http://www.salon.com/2011/12/27/therapists_revolt_against_psychiatrys_bible/singleton/ The American Psychiatric Association's Diagnostic and Statistical Manual of Mental Disorders 5 -- the "Bible of Psychiatry" is 1,000 pages and retails for $160. The public might enjoy a lighter version unhindered by any reputable scientific advisory group or professional review process. It is entitled The Diagnostic Manual of Mishegas. At 74 pages and selling for a mere $10, how can you go wrong with this alternative to the DSM-5? The book is a parody of the DSM-V
E. THE LANGUAGE OF PSYCHIATRY
1. There is a world of language associated with an attempt like mine to describe a lifetime of BPD. I only try to define some of the terms. For me the words short term apply to: today, this week and this month; medium term applies to a period of two months to a year. The two words "long term" applies to all the time after one year in my personal medical history, retrospectively or prospectively. I try, as far as it is logically possible, to use the term mental health or mental distress and not mental illness. This has been a recent emphasis in mental health discussions and in the literature. Apologies at the outset of this statement for the occasional use of complex language. The field of mental health is replete with complex terminology. It is helpful for those with different types of mental health problems to become as familiar as they can with this language. I try for the most part to use simple language—but I do not always achieve this aim.
2. A good example of the language difficulties is the following part of this paragraph discussing the neurobiological bases of behavioural differences. The language used by specialists is often way over one’s head, both the head of the sufferer from BPD and the heads of others wanting to understand the disability. (See Erik Kandel, “A Biology of Mental Disorder,” Newsweek, June 27, 2009; and C. Langan & C McDonald, “Neurobiological Trait Abnormalities in BPD,” Molecular Psychiatry, Vol. 14, pp. 833–846, published online on 19 May 2009)
3.The above two sources provide many excellent examples of this language complexity. The abstract of this article with this complex language is as follows: “Dissecting trait neurobiological abnormalities in BPD from those characterizing episodes of mood disturbance will help elucidate the aetiopathogenesis of the illness. This selective review highlights the immunological, neuroendocrinological, molecular biological and neuroimaging abnormalities characteristic of BPD, with a focus on those likely to reflect trait abnormalities by virtue of their presence in euthymic/normal patients or in unaffected relatives of patients at high genetic liability for illness. Trait neurobiological abnormalities of BPD include heightened pro-inflammatory function and hypothalamic–pituitary–adrenal axis dysfunction.”
4. This problem of language is dealt with at the following link:http://www.healthyplace.com/blogs/breakingbipolar/2010/06/are-bipolars-crazy-i-am/ ....I like the word 'crazy' which the author of the above blog emphasizes and uses in her daily life with others. But the word, 'crazy' like 'mentally ill' or even such terms like 'mental health problems/issues', have their downside. In some ways, the problem raised is one of language. There is a world of language associated with attempts to describe one's experience with BPD over the short term or over a lifetime. There is the problem of the use of complex language. The field of mental health is replete with complex terminology. It is helpful for those with different types of mental health problems to become as familiar as they can with this language. I try for the most part to use simple language—but I do not always achieve this aim. Language is a problem not only with respect to mental illness but also with respect to many other complex problems in society. KISS, keep it simple stupid, does not solve all problems. Whom the gods would destroy they first make simple and then simpler and then simplest. I will leave this problem here.
5. The term "Mental Illness" encompasses a wide range of conditions that have to do with the way the mind operates. Some of these conditions are caused by physical dysfunctions of the brain. Some are caused by various forms of emotional and psychological trauma. Some are primarily cognitive in nature. Some are primarily emotional in nature.
6. The new diagnostic term, BPD, is now found in the Diagnostic and Statistical Manual of Mental Disorders-IV published by the American Psychiatric Association in 1994. DSM-III had 300 disorders twice as many as in the DSM-II. DSM-V is due for publication in 2013. The DSM is considered the bible by specialists and by the various professions and other interest groups. It is considered by many as a core/basic information source, a major scientific instrument in the field of mental health. In the DSM-IV the term maniac was deleted and the one-size-fits-all classification system for MD and BPD was more finely tuned by the 4th edition published in 1994. The exact discourse that has come to have jurisdiction in this labelling process, the circumstances that have come to result in a person given some mental illness label are due to: (a) norms and expectations as well as (b) medical, psychological, physiological and (c) most recently, neurochemical and electrical brain activity as seen in brain imaging.
F SLEEP and MANAGEMENT OF BPD
1. BPD presents particular challenges with regard to assessing response to therapy. Criteria for determining remission and recovery have been suggested for mood disorders, but the clinical usefulness of these terms in BPD is elusive. Formal psychological rating scales may be impractical in a routine medical practice setting. As an alternative, clinicians might probe for information about particular "signal events," such as sleep disturbances, that may herald mood fluctuations. The ultimate goal of bipolar management should be complete and sustained remission, whenever possible, although most patients will not achieve this status for any significant length of time. As I write this at the age of 69.5 sleep is still a problem: I spend 10 to 12 hours in bed daily, and get 8 to 9 hours sleep daily, on average. Often, although not always, two of these hours are in the day and evening. The side effects of each of the two medications I take include drowsiness(seroquel and effexor). After a meal I nearly always feel a need to have a sleep or rest; after two hours of human-interaction sleep or rest is also needed.
2. People tend to sleep more lightly and for shorter time spans as they get older, although they generally need about the same amount of sleep as they needed in early adulthood which, in my case, was 8 hours. About half of all people over 65 have frequent sleeping problems, such as insomnia. Deep sleep stages in many elderly people often become very short or stop completely. This change may be a normal part of aging, or it may result from medical problems that are common in elderly people. It may also result from medications and other treatments for those problems. For an excellent overview of the topic of sleep and bipolar disorder go to this link: http://www.survivingbipolar.com/green_sleep.htm
3. Overaggressive management might entail pushing medication doses to intolerable levels. Individual treatment goals should always take into account patient acceptance of the side effect burden, allowing for trade-offs between treatment effect and quality of life. Noncompliance with therapy, notoriously common among patients suffering from BPD, can stem from drug side effects, treatment ineffectiveness, or even treatment success if the patient misses the manic symptoms. Despite effective treatment, relapse is common. Realistic treatment goals should strive for sustained symptom abatement while maximizing patient quality of life from visit to visit. Ineffective therapy is disturbingly common. Therapy for the BPD in my life has been a complex and somewhat tortuous process with sometimes steep, sometimes very gradual, and seemingly non-existent learning curves.
4. According to a 2010 study published in the American Journal of Psychiatry, 42 percent of people in psychotherapy use 3 to 10 visits for treatment, while 1 in 9 have more than 20 sessions. A recent study by the National Institute for Health and Welfare in Finland found that “active, engaging and extroverted therapists” helped patients more quickly in the short term than “cautious, nonintrusive therapists.” More than an oasis of kindness or a cozy hour of validation and acceptance, most patients need smart strategies to help them achieve realistic goals. As the years have gone on, the decades of treatment regimes, it is this that I have come to seek in my psychiatrist. To see more on this subject go to this link: http://www.nytimes.com/2012/04/22/opinion/sunday/in-therapy-forever-enough-already.html?ref=mentalhealthanddisorders
5. Some patients are unable or unwilling to step into the difficult and uncharted explorations that treatment for BPD and other psychiatric and psychoanalytic work entails. I had this problem, off and on, from 1968 to 1991. Each psychiatrist I had over the years made his effort to establish analytic contact and a therapeutic relationship. This was important to me in obtaining a level of valuable support, containment of my problems, and growth in dealing with my illness. Some patients, and I was certainly one during the quarter century from, say, 1968 to 1992, may display great resistance to the challenge of psychiatric and psychoanalytic treatment. I was not what psychiatry calls "a turbulent patient," but I did have trouble with complaince. I never left treatment in a very abrupt and unprocessed manner, but I often would have liked to do so. For many their treatment is suddenly all over and that is that. This abrupt dismissal is usually a continued expression of their remaining pathology and the presence of conflictual phantasies that had been played out throughout the span of their treatment and the analytic process. This cannot always be prevented.
6. This account provides a statement of my most recent experiences with BPD in the last eight years, 2007-2014. Some prospective analysis of my illness is also included with the view to assessing: (i) potential short term, medium term and long-term strategies,(ii) appropriate lifestyle choices and (iii) activities in which to engage in the years ahead, in these middle years(65-75) of late adulthood(60-80), and old age(80++), if I last that long. For the most part, though, this account, this statement I have written here in more than 110,000 words, is an outline, a description, of this genetically predisposing, family-based, illness and of my experience with it throughout my life.
G. MY WIFE and FAMILY
1. My wife, Chris, has suffered from different disorders and health problems all of our married life as well as in the years before our marriage in 1975. Her story is long with invasive surgery for two mastectomies and a hysterectomy as well as post-natal depression following two pregnancies and major psycho-social-family problems. I have not included her story here in any detail except in a tangential way when it seems relevant to my own experience of BPD. My wife is now on an old-age pension and she suffers from hypothyroidism and fibromyalgia.
2. The references in this account to the three major families in my life: my consanguineal family(birth), my two affinal families(marriages) and their many extensions(children and cousins, aunts and uncles, etc.), my work experience and my values are emphasised in this account, but only briefly and only en passant.
3. I would, though, discourage others from blaming their parents for their genetic contribution to the disorders. I would also discourage them from blaming other family members for (a) their contributions in the form of psycho-social stress, (b) their contributions to conflict and tension in my life and (iii) their failures to understand or even want to understand. Rather than wasting time and energy in finger-pointing or bemoaning the fact that one has BPD, I would encourage sufferers to learn how to best use available treatment programs, or modalities as they are sometimes called in the literature, to minimize their symptoms and to find success and satisfaction in their lives despite their disorder.
H. MY RELIGION AND SPIRITUALITY
1. My religion, the Baha’i Faith, which provides the major base for my values, beliefs and attitudes, is also important--but I do not focus on this Faith here, except in an indirect way. However important this religion has been to me in the past and in the present I do not refer to it except, as I say, in passing in my elaboration of my experience of BPD. I do not deal with the concept and the notion of spiritual healing.
2. "Spirituality" as I define it here, is the basic feeling of being connected with one's complete self, others, and the entire universe. If a single word best captures the meaning of spirituality & the vital role that it plays in people's lives, that word is "interconnectedness." Spirituality should not be treated as a jargon to find place in philosophical books but it encapsulates the very essence of practising life with simplicity and being aware at the same time, of the immense complexity of life. Spirituality in the workplace can be of great help in increasing the productivity of each individual and organization in totality. In contrast to religion that is organized and communal, spirituality is highly individual and intensely personal. One doesn't have to be religious in order to be spiritual. A values-based organization results when the founders or heads of that organization are guided by general philosophical principles or values that are not aligned or associated with a particular religion as is the case with the vast majority of secular institutions: state and government, schools and hoispitals, inter alia.
3. In the changing business scenario there is a need to integrate spirituality into management. No organization can survive for long without spirituality and soul. Ways of managing spirituality without separating it from the other elements of management need to be understood and implemented for the holistic development of individuals and organization. The importance of practising spirituality in the workplace for that workplace to progress from cognitive intelligence to emotional intelligence and ultimately to spiritual intelligence which acts as a catalyst for inspirational leadership and management excellence is importnat for mental health. I have drawn on Rekha Attri's article "Spiritual Intelligence: A Model For Inspirational Leadership," in the International Journal's Research Journal for Social Science and Management, Vol. 1, No.9, 2012, for this concept.
4. A growing literature suggests that clinicians should consider the religion or spirituality of their patients as part of the psychiatric evaluation, one more piece of the puzzle that makes up the person, whom we try to understand as well as possible so we can provide help to the best of our ability. Studies to date have suggested three conclusions, all of which can be debated: 1) individuals with no religious affiliation are at greater risk for depressive symptoms and disorders, 2) people involved in their faith communities may be at reduced risk for depression, and 3) private religious activities and beliefs are not strongly related to risk for depression. Depression has been the most frequently studied of the psychiatric disorders in relationship to religion or spirituality, in large part because of the overlap in expression of both. For example, guilt associated with depression often is connected with a religious belief system, and apparent depressive symptoms (such as the “dark night of the soul”) are associated with religious experiences. For more on this subject go to this link:http://ajp.psychiatryonline.org/article.aspx?articleid=181239
I. SOME GENERAL REMAKRS
1. Some of the personal context for this illness over the lifespan in my private and public life, in the relationships with my consanguineal family(family of birth) and in my two affinal families(families by marriage), in my employment life(1955-2005) and now in my retirement(2005-2014) are discussed in this document. I include in the description and analysis of my BPD some of what seems to me my major and relevant life events, not as triggers in my experience of BPD but as accompanying factors: (a) personal circumstances as they relate to my values, beliefs and attitudes--what some might call my religion as defined in the broadest of senses; (b) family circumstances; for example, my parents’ life, my wife’s illnesses, the life-experiences of my three children as well as significant others in my lifespan like my father and mother and my first wife; (c) employment circumstances involving as they did: (i) psycho-social stress, (ii) movement from place to place and (iii) my sense of identity and meaning; (d) aspects of day-to-day life and their wider socio-historical setting and (e) details on other aspects of my medical condition to help provide a wider context for this BPD in the last two years.
2. I could explore section (d) above in some detail, but to be brief, let me simply add here that: processes of social inequality, poverty, human exploitation, besides many other ideological processes, install emptiness, disempowerment and lack of meaning in life. This is a frightening discovery because, if we assume that this constitutes illness, the treatment for psychopathology should be a lot more complex than what have been traditionally used in clinical psychology and in psychiatry. It should give priority to political and community processes which help to make it possible to preserve mental health; it should do this in addition to an analysis of any neurobiological processes.
3. This lengthy account will hopefully provide mental health sufferers, clients or consumers, as they are now variously called these days, with: (i) a more adequate information base to make some comparisons and contrasts with their own situation, their own predicament, whatever it may be, (ii) some helpful general knowledge and understanding, (iii) some useful techniques in assisting them to cope with and sort out problems associated with their particular form of mental health problem or some other traumatized disorder that affects their body, their spirit, their soul and their everyday life and (iv) some detailed instructions on how to manage their lives more successfully despite the negative consequences of their BPD or whatever trauma or illness affects their lives. I am registered at over 100 mental health sites and contribute in ways that seem appropriate. But I do not assume the role of coach or mentor on the internet as some doctors, specialists and people who have experienced various forms of mental illness do at many sites on the world-wide-web.
4. Conventional research into mental health disorders is based on the assumption that professionals are better equipped to interpret the experience of sufferers because of their distance from the experience of the sufferers. It is perhaps now time for mental health service users to question the assumption that the greater the distance there is between direct experience and its interpretation, the more reliable it is. Such an approach explores instead the evidence and the theoretical framework for testing out whether: the shorter the distance there is between direct experience and its interpretation then the less distorted, inaccurate and damaging resulting knowledge is likely to be." For an interesting discussion of this topic go to this link: http://www.qualitative-research.net/index.php/fqs/article/view/1790/3311
5. I like to think that what has become over the last few years this book of some 300 pages(font-16) has advice that could be used by many people with BPD as well as others without BPD. Keeping detailed records, for example, written or mnemonic, ingrained in memory and/or with signs for immediate recall when required--of one’s feelings and relationships and, in the process, taking responsibility for maintaining and improving them, might help BPD sufferers and others deal with their problems and have more successful lives. As for the meaning of successful, I prefer Thoreau's evocative lines: "If the day and the night are such that you greet them with joy and life emits a fragrance like flowers and sweet-scented herbs; if life is more elastic, more starry and more immortal in the process--that is your success." Even ‘Abdu’l-Bahá’s ‘oft repeated phrase: “Be Happy!” is a simple enough aphorism and yardstick for measuring your daily life, your sense of well-being and the extent to which you are well-oriented and well-positioned to assume the responsibilities that are the result of your interests and commitments. Of course, in using such definitions of ‘success’ like this, one must recognize that millions of people without mental health issues don’t have success defined in these terms. Finally, success and happiness are highly idiosyncratic terms and how each person sees them, defines them and experiences them are their own--even if there are many common threads from person to person.
6. There are two kinds of lists that BPD sufferers need to keep in mind in going about their daily lives in dealing with this disorder. So wrote one writer and, liking what he wrote, I include his ideas here. The first list is what you could call risk-factors that increase the chances of BPD sufferers becoming ill and/or having their symptoms dominate their daily life and produce ill-effects for themselves and others in their environment. Such socio-environmental factors as: family distress, psycho-social stress, drinking alcohol or using drugs, sleep-deprivation or missing medication are in this category. A second list of what could be called protective factors help to protect people with BPD from becoming ill, from having an exaccerbation of their symptoms. They include: keeping charts of one’s moods and sleeping patterns, going to bed and getting up at the same time every day, staying on one’s programs/regimes of medication and psychotherapy and avoiding psycho-social stressors that one knows will precipitate negative symptoms of BPD.
7. My note-taking and list-making are works-in-progress so to speak, and have been for years. How they are implemented varies from year to year and decade to decade. Now, at the age of 69, I keep: (a) a medical file in 5 sections in a separate briefcase. Readers can see the outline of this file in Appendix 7; (b) this 110,000 word and 300 page book updated to outline my life-experience of BPD; and (c) a written autobiography in 5 volumes which I update, as well as 1000s of prose-poems. I continue to write poetry each week. All of this helps me monitor my experience of BPD both directly and indirectly. I have used many charts, made many plans and tried to implement various safety-nets over my lifetime. Freeman’s description of the ones BPD sufferers can use is the best I’ve seen.
8. I like to think that this account is crammed full of useful information for patients with BPD and other illnesses, for their family members, for therapists, for friends, lovers, employers and anyone else interested in BPD. The insights I share were not acquired by reading the voluminous literature on BPD, although I have taken a serious intellectual interest in the subject in the last decade since I retired from FT employment in 1999. My insights come, in the main, from reflecting on 69 years of life since my conception in October 1943.
9. I have benefited from what you might call the collective wisdom of others about what it means to live with BPD and other conditions. This wisdom comes from the reflections of other writers, from specialists, indeed a range of commentators. Finding solutions to my BPD problems and telling about what works for me taps into my creative resources and it also requires investigating my own trial and error efforts to create a personally satisfying life in order to separate what works from what doesn’t work. Finding solutions and what works in one’s own life is a form of artistry that can result in highly individual and unique solutions and outcomes. I like to think that this book taps into both my own wisdom and experience and the collective wisdom of others looking for a better quality of life by writing about what has been helpful for them as sufferers with BPD or some other condition or, indeed, as a loved one or family member.
10. The medical psychiatric perspective believes in the centrality of genetic and biological approaches to mental ill-health over psychosocial ones and, at least in my case, this perspective informs this account. To put this idea another way, this account is based on the psychiatric perspective of the centrality of genetic and biological approach to mental health.
J. OTHER DISORDERS: PART 1
A. There are other psychiatric disorders often confused or associated with BPD and sufferers with BPD need to be aware of these other disorders in their diagnostic dialogue with their doctor and as they go about negotiating their lives. Differential diagnoses, as they are sometimes called, include: ADHD, schizophrenia, obsessive-compulsive personality disorder; recurrent major depressive disorder, schizo-affective disorder, post-traumatic stress disorder, narcissistic personality disorder, borderline personality disorder, antisocial personality disorder, avoidance disorder and cyclothymic personality disorder. I have many of the features of any one of these disorders except schizophrenia at one time or another in the last seven decades. I was officially diagnosed by a psychiatrist in 1968 as having schizo-affective disorder. All of the other disorders I can partly, indeed, significantly, identify with when I read the list of symptoms associated with each of them. I would not list these disorders here if I did not exhibit or have not exhibited many of their symptoms in my lifetime.
A.1 A personality disorder is an enduring pattern of inner experience and behavior: (a) that deviates markedly from the expectation of the individual's culture, (b) that is chronic, pervasive and inflexible, and (c) that affects two or more of the following areas: thoughts, emotions, interpersonal functioning and impulse control. To be considered a personality disorder the behaviour should also have an onset in adolescence or early adulthood, that is the years 20 to 40, be stable over time and lead to distress or impairment. Because these disorders are chronic and pervasive, they can lead to serious impairments in daily life and functioning.
B.1 OCPD AND PTSD
1. In one study of 60 patients with BPD, 23 (38%) fulfilled the diagnostic criteria for at least one personality disorder. Those personality disorders most commonly were: narcissistic, borderline, antisocial, avoidance disorder and obsessive-compulsive. In my case the obsessive-compulsive personality disorder(OCPD) and post-traumatic stress disorder(PTSD) have been the most dominant; I can now see looking back over seven decades of living, 1943 to 2013, periodic manifestations of both OCPD and PTSD at various points in my life-narrative. The presence of these other disorders sometimes make BPD symptoms more intense and more difficult to treat; they also appear to increase the risk of suicide. I will deal with my suicidal ideation later in this account of my chaos narrative. This account is about BPD, by a person with BPD. My account only ventures into these several other psychiatric illnesses and personality disorders to a limited extent, and only from time to time when it seems relevant. I will deal with these personality disorders in my life briefly in the next several sections before continuing this account of BPD.
2. In a list of ten basic symptoms of obsessive-compulsive personality disorder(OCPD), I possessed six symptoms rated at 5 or above on a 10 point scale in January 2010. I will not list these symptoms of OCPD here since this narrative and analysis is a focus on BPD, but readers can easily Google OCPD, if they are interested. Wikipedia is an informative source for information on OCPD. The pattern of behaviours for my OCPD has been highly diverse rather than stable over the years as far back as my childhood and has become more dominant, as I say, in my late adulthood, the years after the age of sixty on a new medication regime of an anti-depressant and an anti-psychotic. I will discuss this new medication regime in more detail later in this story. People with OCPD are ridden with anxiety. This overstates my level of anxiety. By contrast, people with OCPD tend to derive pleasure from their obsessions or compulsions. This is the case with me.
3. The primary symptoms of OCPD are: (i) a preoccupation with details, rules, lists, order, organization, and schedules; (ii) showing a perfectionism that interferes with the completion of a task, (iii) excessive focus on being productive with time and (iv) excessively devoted to work and productivity to the exclusion of leisure activities and friendships. People with OCPD, when anxious or excited, may tic, grimace, or make noises, similar to the symptoms of Tourette syndrome or do impulsive, and unpredictable things. Children are sometimes born with a genetic predisposition to OCPD, but may never develop the full traits.
Windows of vulnerability to stress exist across human cortical development and this has: (a) a critical role in determining the brain's capacity to respond to stress, and (b) has been implicated in the pathogenesis of psychiatric illness. The neonatal and infant period, specifically the period less than 130 days, and the late adolescent periods represent critical windows of stress pathway development. I could comment in more detail here, and I do later in this account, on my pre-natal and neo-natal experience and its role in the etiology of my OPCD as well as BPD.
4. Looking back to my early childhood there is some evidence that I had OCPD. The literature suggests that much depends on the context in which such children are raised. Since anxiety, trust and everyday routines of social interaction are so closely bound up with one another, it is easy to understand how the rituals of day-to-day life become a type of coping mechanism. Small children love ceaseless repetition, and frequently act in ways that in an adult would be regarded as obsessive and compulsive, patterns that normally fade with growing maturity. Especially in the Freudian tradition, seriality and repetition are signs of immaturity that require suppression. My first memory of ceaseless repetition was drawing 100s of tulips. This may not have had anything to do with OCD as a child.
1. Post-Traumatic Stress Disorder(PTSD) and borderline personality disorder(or BoPD) commonly co-occur and they often co-occur in the lives of BPD sufferers. Borderline personality disorder(BoPD) has been receiving increased attention within the media over the years. It has been featured in movies such as Girl Interrupted, as well as articles in the New York Times and popular magazines such as O Magazine. I possess five symptoms of borderline personality disorder(I use the acronym BoPD to differentiate it from bipolar disorder’s acronym-BPD). The symptoms of BoPD that I possessed were as follows, and they have all decreased on my new meds package in the last three years, 2012-2014.
2. To receive a diagnosis of borderline personality disorder, BoPD, a person needs to exhibit at least these 5 symptoms from a longer list of others. Of course, as with all mental disorders, only a mental health professional can provide a formal diagnosis of BoPD. BoPD has been found among people with PTSD and vice versa. Why are these two disorders so inter-related? BoPD and PTSD have both been found to stem from the experience of traumatic events. The thoughts, feelings, and behaviours seen in BoPD are often the result of childhood traumas. These childhood traumas may also place a person at risk to developing PTSD. As of 2012, I began to take seroquel which is also used to help those with PTSD, and any of the above symptoms disappeared or significantly dissipated.
2.1 People with both BoPD and PTSD report the earlier experience of trauma as compared to people with just PTSD. My impulsive behaviours and unstable relationships, it could be argued, are evidenced by: (a) a divorce from my first wife, (b) many changes in jobs may be part of BPD. They may have no relationship with borderline personality disorder(BoPD), and (c) a certain inconstancy in living, a certain tendency to take risks, and a vulnerability to addictions.
2.2 The symptoms of PTSD and BoPD do overlap; for example, individuals with PTSD may have difficulties managing their emotions. Therefore, they may experience intense feelings and have constant mood swings. They may also experience problems with anger. In the last half century 1963 to 2013 I could tick the box for these experiences in my life, but the specific descriptions of my experience in these areas over 50 years would require more than two sentences. to some extent this life-narrative is an account of some of these swings and my experiences of these symptoms.
3. PTSD entered the psychiatric disorder literature the same year as the term bipolar disorder(BPD), that is, in 1980. The overlap for PTSD and BPD, both neuropsychiatric medical disorders, is high. I have only begun to see PTSD as present in my life in the last seven years, the years of my present & previous medication package: May 2007 to March 2014. In retrospect,I can see the manifestations of PTSD as early as 1968, if not before. Indeed, this overlap has only been recently described in the publicly and easily assessible medical literature as well—on the internet.
3.1 Although most people (50–90%) encounter trauma over a lifetime, only about 20-30% develop PTSD, and over half of these people(10% to 15%) will recover without treatment. I could easily argue that I have recovered without treatment. Vulnerability to PTSD presumably stems from an interaction of biological-hereditary predisposition, early childhood developmental experiences, and trauma severity. I possess, therefore, a vulnerability to PTSD because all these factors were present in my childhood and adolescence.
3.2 A person that never established secure relationships and learned coping skills as a young child if exposed to a traumatic experience is more likely to develop PTSD than one that developed good coping skills and has a support network. Since I developed good coping skills and had a support network would suggest I did not develop PTSD.
3.3 Predictor models have consistently found that childhood trauma, chronic adversity, and familial stressors increase risk for PTSD as well as risk for biological markers of risk for PTSD after a traumatic event in adulthood. Peritraumatic dissociation, that is, dissociation near the traumatic event, which I had in 1968, is not a predictive indicator of the development of PTSD later in life. Proximity to, duration of, and severity of the trauma do make an impact, as my father's temper did on me. Interpersonal traumas cause more problems than impersonal ones in children; they are a predictive indicator of the development of PTSD later in life. This effect of childhood trauma, which is not well understood, may be a marker for both traumatic experiences and attachment problems.
4. We all have a window of tolerance outside of which we behave inappropriately. For healthy individuals, this window is wide. Those with PTSD may seek, focus upon, and over-react to cues even remotely related to danger or trauma, thus constantly reacting as though under threat. Much of the work with traumatized individuals involves helping them with their social interactions when they perceive clues that would take them outside their window of tolerance. I first remember being traumatized:(i) when my father lost his temper from the age of 6 to 16(circa), and (ii) in the years 18 to 24 during the first major episodes of what was then my BPD 2. I now see, or at least I have little trouble hypothesizing, some of my later life-experience as PTSD a result of (a) fear and/or anger in my home as a child, (ii) as well as experience of very intense depression in my late teens, and (iii) traumatic classroom teaching(student incivility and my control issues) among Inuit children in 1967/8 at the age of 23.
4.1 The degree of my exposure to high levels of trauma in childhood is difficult to assess and any conclusions about this childhood experience are hypothetical. Exposure to childhood trauma in the form of witnessing the domestic verbal violence of my father is now recognized as an independent risk factor for suicidal behavior and ideation later in life. The abilities that we call upon to respond accurately to novel situations are sometimes referred to as executive functions. They are frequently engaged to deal with conditions in which routine activation of behavior may not be sufficient for optimal performance. Now in the evening of my life it may be that whatever PTSD I have interferes with these executive functions, although much less on my new meds in the last 6 years, as well as on lithium from 1980 to 2007.
5. A person with PTSD must learn to keep their behavioural and psycho-social orientation flexible and appropriate. They can do this by trying to make their interactions with others characterized by an attitude of curiosity, ease and as free of conflict as it is possible to be. If sufferers from PTSD have some professional trainers or counsellors, they can learn to use biofeedback and neuro-feedback tools. They can be coached to alter their own neurophysiological state when having experiences outside their window of tolerance. With the help of a skilled trainer, sufferers from PTSD can learn to function/behave more appropriately in social settings. They can come to understand that their disturbing reactions are simply reflexes that may have served their purposes in the past, but do not need to be experienced now, do not define who they now are and do not need to determine how they feel and respond in the present. With such psychological counselling, the sufferer from PTSD can learn to tolerate progressively wider windows of arousal. Although I had no such counseling, I have developed greater windows of tolerance as the decades have gone on.
5.1 Such counselling helps the PTSD sufferer to frame his experience in a wider, more comprehensive context, thus ensuring a more normal life pattern. In the last three years, as I say, on my new meds and without access to a trainer or counsellor and their biofeedback and neuro-feedback tools, I have been trying to learn: (a) to understand my disturbing reactions when they arise and (b) to frame them in a wider context for effective interpersonal functioning. By relying on what one might call my own impressionistic feedback mechanisms, I try to observe the indications of my physiology, my body language and my emotions going into hyper- or hypo-mobilization from what are usually and essentially minimal reminders of threat. And there have been many of these minimal threats in the last three years: advice, criticism, the perceived aggressiveness and the over-assertiveness of others, inter alia, which resulted in disturbing and inappropriate reactions on my part.
6. Therapists dealing with clients who have BPD often discover gaps in the personal narratives of their patients. The first five years of life are generally lost to the veil of infantile amnesia, and utterly unlikely to be recovered even in the deepest and longest psychoanalytic treatments. In my case this infantile amnesia certainly applies. Freud indicated that therapist and patient might like to try to fill those gaps with “constructions,” conjectures, or hypotheses on what might have happened. Despite Freud’s endorsement of the procedure, reconstructions were neglected until the 1970s forward. If controversial in psychoanalysis, constructions have been neglected in short-term psychoanalytic psychotherapy; it is, literally, a construction zone. The focus is on “clarification of experience” and not “repressed memories.” I have done this to some extent in this account of my life with BPD.
C. THE ANTI-DEPRESSANT:
1. I was diagnosed with a mild schizoaffective disorder in the autumn of 1968. I was 24. After six months(6/68-11/68) in four different psychiatric wards and hospitals I was eventually released. I also took anti-depressants, first luvox or fluvoxamine in 2001; and then Effexor or venlafaxine in 2007, for depression. The side-effects from these anti-depressants, which I manifested in the years 2001 to 2014 were: sleepiness,especially after a meal and after 2 hours of interaction, fatigue and weight gain. Less common side-effects that have been manifest in my day to day life include: gas, difficult or laboured breathing, some loss of touch with reality, increased awareness, neck pain, vertigo, diarrhoea, heartburn, abnormal dreams, unusual tiredness and social withdrawal symptoms. Often when I watch TV, for even 5 to 10 minutes, I get sleepy and either go to bed or do some reading to activate my brain. I have mentioned these abnormal dreams earlier in this now lengthy account and so I will not bother to discuss them again, but they are a wearying-lot-of-stuff.
2. The luvox and effexor helped decrease the intensity of the depressions which I had been experiencing late at night for more than 20 years(1979 to 2001). For patients with the most severe forms of depression, and mine was severe in the hour before going to sleep, the benefit of an anti-depressant over a placebo was substantial. The opposite of depression, for me, is not happiness, but vitality, and my life, as I write this, is vital, except for a trace of that depression on going to bed. See an article on this subject at: http://www.nytimes.com/2012/04/22/magazine/the-science-and-history-of-treating-depression.html?pagewanted=4&ref=mentalhealthanddisorders
3. The sense of relief from the intensity of that late-night depression was a source of positive energy, a wonderful injection of spirit and joy into my life. The significance of the depressed phase of BPD has been markedly underestimated not only by those familiar with BPD but by the wider society. Bipolar depression accounts for most of the morbidity and mortality due to this illness. Millions of people around the world embraced antidepressants beginning in the 1980s. By the time I first took an anti-depressant in 2001, anti-depressants were becoming all the rage and slowly becoming the third-most-common prescription drug taken in America. Fast forward to 2014, though, and the same antidepressants that inspired such enthusiasm have become the new villains of modern psychopharmacology. They are seen as overhyped, overprescribed chemicals, symptomatic of a pill-happy culture searching for quick fixes for complex mental problems.
4. Depression is a complex, diverse illness, with different antecedent causes and manifestations. As the clinical trials show unequivocally, only a fraction of the most severely depressed patients respond to serotonin-enhancing antidepressants. Do these patients respond because their depression involves cellular death in the hippocampus? Our current antidepressants are thus best conceived not as medical breakthroughs but as technological breakthroughs. Anti-depressants are chemical tools that have allowed us early glimpses into our brains and into the biology of one of the most mysterious diseases known to humans.
5. After 14 years on first luvox(2001) and then effexor(2007), there is no question that they have been helpful in reducing the downside of the Black Dog. In April 2012 I went off these meds and took a new cocktail of: seroquel and effexor. This story is found below.
C. OTHER DISORDERS: PART 2
1. Narcissistic personality disorder (NPD) is a personality disorder defined by the Diagnostic and Statistical Manual of Mental Disorders, the diagnostic classification system used in the United States. Although I do not fit the narrow definition of NPD: "a pervasive pattern of grandiosity, need for admiration, and a lack of empathy," it could be argued that I am excessively preoccupied with self-centeredness, and issues of personal adequacy, power, and prestige. In the list of diagnostic criteria, there is no doubt that I have an element of NPD. As is the case with any personality disorder, the details are complex and require much discussion if they are to be teased-out and understood. The extent of my NPD is only partial like so many of the personality disorders associated with BPD, and self-diagnosis is often problematical in a host of ways.
1.1 There are several sub-categories of narcissism or narcissistic personality disorder and the one I come closest to exemplifying is the amorous narcissist with its emphasis on the erotic and exhibitionism. I may have had an oversensitive temperament at birth; I was certainly overindulged and excessively admired and praised as a child and adolescent, although I may be overstating the case. Life for those living with a person who has NPD can be very difficult indeed, formidable and isolating. My wife has often expressed this view. When people with NPD are criticized they often feel rejected, humiliated and threatened in the context of their ambitious and capable selves. A hypomanic mood can be coupled with a sense of grandiosity. NPD is sometimes seen as a defence against shame. I seem to exhibit some of the characteristics of the many sub-types of narcissism. I also utilize some of the narcissist’s coping strategies. NPD commonly coexists with: hypomania, histrionic PD, borderline PD, antisocial PD and paranoid PD. I have aspects of all of these personality disorders. NPD is not due to a chemical imbalance but, rather, is an ingrained personality trait. Since some narcissistic traits are common and normal; since self-love is part of the very clay of man, I find it difficult to assess the real extent of NPD in my life.
2. A. M. Benis(1939--), now a retired physician, developed what is now called the NPA theory of personality on the basis of the concepts of psychiatrist Karen Horney(1885-1952). This trait theory of personality posits that narcissism is one of the three major behavioural traits underlying personality and human character. It is indispensable, so goes this theory, to human development. I advise readers to read about this theory if they want more detail on the nature of narcissism and what is, in many ways, a naturally occurring trait in all people or which, in some respects, I am one.
3. I post the following prose-poem which confirms to me that I am not a narcissist, but I recognize the existence of a tendency, however limited, in the direction of some of the following traits. I recognize the need to be aware of any hubristic tendencies.
1. David Owen1 describes hubris syndrome as inextricably linked with power, and indeed requiring the person to be in a position of high, if not supreme, political office. He also argues that it is related to the length of time an individual is in power. It “evolves and is in a continuum with normal behaviour.” Owen suggests a checklist of thirteen symptoms of which a “three or four should be present before any diagnosis is contemplated.”
Here are four of those symptoms:
(i) a narcissistic propensity to see the world primarily as an arena in which they can exercise power and seek glory rather than as a place with problems that need approaching in a pragmatic and non-self-referential manner;
(ii) a predisposition to take actions which seem likely to cast them in a good light, taken in part in order to enhance their image;
(iii) a disproportionate concern with image and presentation; and
(iv) a messianic manner of talking about what they are doing and a tendency to exaltation in speech and manner.2
--Ron Price with thanks to1David Owen, a medical doctor who entered UK politics. He was the Minister for Health and later Foreign Secretary in Labour Governments of the 1970s. He was also a co-founder of the Social Democratic Party in the 1980s, and Special Representative to Bosnia-Herzogovina in the 1990s.
In recent years he has written widely on the interaction between medical illness and politics. 1David Owen, In Sickness and in Power: illness in heads of government during the last 100 years, Methuen, New York; and 2David Owen, Hubris Syndrome, Clinical Medicine, V.8, pp. 428–32.
With so much blood and death,
taking big decisions recklessly,
especially in relation to war
and peace, due to the hubris
syndrome; a neurochemical,
neuroscientific approach is
required to study leadership
stress in those who have been
at the job for a long time, and
have associated noradrenergic
and dopamine systems with
some predisposing factors
that may affect this system
in ways not dissimilar to the
resetting experienced by the
long distance runner after a
prolonged period of running.
A resetting of the dopamine
system might provide us with
an explanatory hypothesis
underpinning the hubris
syndrome as a form of illness
for the DSM-V in 2013…….1
1 Hubris syndrome is not yet a diagnostic category of accepted mental illness, but it probably stems from a set of genetically codetermined predisposed personality traits. To the psychiatrist any potential new syndrome is likely to be an interaction between genes and environment or nature and nurture.
4. Early biology and upbringing provide the basis of personality. Personality can then be expressed, or not, depending on constraints or opportunities. While this statement is accurate, it is also extremely generalised and does not point to which aspects of “early biology and upbringing” might contribute to later hubris.
1.There are also a range of other personality theories and tests that provide a context within which people with BPD, and anyone else for that matter, can view themselves. I have provided one such context in Appendix #3, a context in which I have typed myself as a sanguine-melancholy personality. These several types I have found useful to provide a context for self-description and analysis.
2. Antisocial personality disorder (ASPD or APD) is defined by the American Psychiatric Association's Diagnostic and Statistical Manual as "a pervasive pattern of disregard for, and violation of, the rights of others that begins in childhood or early adolescence and continues into adulthood." The individual must be age 18 or older, as well as have a documented history of a conduct disorder before the age of 15. People having antisocial personality disorder are sometimes referred to as "sociopaths" and "psychopaths", although some researchers believe that these terms are not synonymous with ASPD. I have described this disorder briefly here. It is one of 100s of disorders. I do not have this disorder, but in the survey of the vast range of disorders we each can find some characteristics we share with those who have these disorders in a fuller context.
3.Impulsivity, superficial charm, inflated self-appraisal, irritability leading to aggression, disregard for social norms and extensive rationalization of one’s behaviours all characterize ASPD. I have had all of these traits at one time or another and sometimes many of these traits at once. To that extent, therefore, I have a partial ASPD.
4. Readers are advised to go to the online encyclopaedia, Wikipedia, to get a fuller picture of the various mental disabilities I refer to in this account. It is possible, or at least one could argue, that I do not fall into these categories in even a minimal sense. I have certainly never been diagnosed by a psychiatrist and treated for other disorders. BPD is the only label which has stuck since 1980. It is important to include a note of warning here, namely, that: once one goes trolling among the pages of disorders, mental and otherwise, that exist in the medical and psychiatric literature, one can find all sorts of data that applies to one.
1. Cyclothymia is a rapid-cycling form of bipolar affective disorder which creates alternating short periods of hypomania and depression, with periods of stability in between. Cyclothymia is often regarded as the poor cousin of BPD, but should not be underestimated. It is a very serious condition that needs long-term management and support for the sufferer and the health care professionals who deal with the sufferer. Cyclothymia is a milder form of BPD. Like BPD, cyclothymia consists of cyclical mood swings. However, the highs and lows are not severe enough to qualify a mania or major depression.
2. To be diagnosed with cyclothymia, a person must experience at least 2 years during which they have had frequent hypomanic
episodes and depressive mood swings that do not meet criteria for major depressive or manic episodes. I experienced cyclothymia for the first time in the years 1963 to 1967. Because people with cyclothymia are at an increased risk of developing full-blown BPD, it is a condition that should be monitored and treated. My four years at university, 1963-1967, could be said to be a form of untreated cyclothymia. The famous English actor Stephen Fry says his BPD is of this variety which he likens by analogy to a temperate English climate as opposed to the more severe climates in the world which, again by analogy, are like the full-blown BPDI. In the USA Fry says that this variety of BPD is known as light BPD. In 1968 I experienced a full-blown BPD episode, although it was given the label “a mild schizo-affective state.”
3. Looking back over seven decades of BPD, I would say that I experienced mania and psychosis—a chemical imbalance in the brain. This psychosis was like a detonation. It took place in someone who had exhibited absolutely no symptoms previously, in a person who had led a normal life until that psychotic episode shattered my normalacy. It presented itself as energy of a primordial sort. One writer likened it to “being in the presence of a rare force of nature, such as a great blizzard or flood: destructive, but in its way astounding too.” Such unbridled energy can resemble that of creativity or inspiration or genius—this, indeed, is what I felt rushing through me. In retrospect it was clearly experienced as an illness. It is not accurate, at least in my case, to describe the experience, as some do, as the apotheosis of health. There was, it could be said, a release of a deep, previously suppressed self. That was part of the good side. This story of BPD tells for the most part the bad side, although I also express some of the positive aspects of BPD. The experience of high energy and creativity are equivalent to a full-blown psychopathology, to a clinical manic episode which, by definition, entailed significant impairment.
4. Some people with BPDII say that they need their highs in order to enjoy life and to feel good about themselves. BPDI sufferers like myself never feel alive during these manic highs. The manic episodes of which I have had three in my life are so disorienting that I would never say I need them. Some BPD sufferers prefer to have their problems if that is the price they have to pay for their mania, their severly elevated moods. Normality or evenness of mood, for such people, is like living at low altitudes. They want to fly, so to speak. They reject drugs because the drugs often make their hands shake. Pharmacological treatments are often not effective because of problems with adherence and compliance.
5. In my retirement years, 1999 to 2014, my disability and old-age pension years, 2001 to 2014, my cyclothymia or BPD, was treated. The BPD I suffered after the age of 35(in 1980), or 55(in 1999) was BPD I. This BPDI, during the 5 years I was on sodium valproate and effexor(4/07 to 4/12) was characterized by: lack of interest in socialising, except to a minimal extent, the need for a very large amount of sleep, although only an average of 8 to 9 hours OUT OF 11 in bed in a 24 hour period; not wanting to get out of bed and, therefore, spending 10 to 11 hours in bed for 8 hours sleep; difficulty in holding down a regular job; relationship issues and financial troubles. The death wish and associated feelings continued, as they had done since 1963 and more often after 1978, but, with the new meds, the Black Dog was not as black.
B. FINANCES: THE PERSONAL AND THE SOCIAL
1. Although money is not a disorder in itself, the lack of it can cause serious emotional problems. I am managing my BPD during these retirement years reasonably well and my wife and I have enjoyed a decent standard of living. At the age of 69.5, as I write these words, my wife and I receive two pensions totalling $1300 per fortnight(circa). The house my wife and I live in is paid-for and valued at $300,000(circa). By the time I was 69 I had no debt and had about $8,000 left of a reverse mortgage taken-out in 2012. I mention this financial aspect of my present state because money is life blood or bed-rock for a person with BDP, as it is for anyone else. I have not gone into the details of my financial state for the previous years of my life in this account, but in this latest edition it seemed an appropriate item to add at least briefly in order to indicate that money is not a significant problem. My wife, though, who enjoys retail therapy more than I, finds our income limits the satisfaction of her consumer tastes.
2. The economic impact of BPD in the wider society can now be measured in the hundreds of billions of dollars in the OECD countries(Science Daily, Pittsburgh, 2005). Some 80% of people who have BPD do not even realize that they have BPD and, of those who do, a great percentage do not seek treatment. Of those who do, like myself, time, hours and even years lost in FT employment can be many. In my case I have lost a dozen years of paid employment before the retiring age of 65. I was unemployed in the last half of 1968, two-thirds of 1980, and from 1999 to 2009 at the age of 65 when I went on an old-age pension. By 1999, at the age of 55, I experienced the difficulty in remaining in FT employment and a minimum of financial troubles followed due to just having a disability pension to live on after decades of full-time employment.
3. By the age of 69 in 2013 I had $3000 in investments, a home valued at $300,000(circa), furnishings insured for $20,000, a 24 year old car valued at $1000(circa), and some $8,000 left in a $20,000 reverse mortgage. My financial stringency came as a result of: (a) my early retirement from FT employment in 1999 at the age of 55, and (b) not saving and/or investing more money over the decades of my employment in preparation for my retirement. In the train of the financial pressure I refer to briefly above, the change in my life-roles, and mutual health problems, came relationship issues with my wife. A new range of personal tests also emerged. There is always the problems of life-experience but, in the main, I do not refer to them in this now extensive account. People wanting to read about the larger content and context of my life, in what is now a five volume 2600 page work, can go to Baha’i Library Online in a work entitled: Pioneering Over Four Epochs: Parts 1 to 3.
4. In some ways, of course, one cannot-should not complain since there are millions, indeed, billions of people now with relationship issues and who are far worse-off financially than I now am and have been in the last decade. I only mention these financial issues since they have been tangentially connected with my BPD experience in the last decade, since I was 55. I do not want to leave any lingering impression that my wife and I are tottering on the edge of divorce or that our finances are in a state of crisis. Our marriage is secure and we will go the distance until one of us dies in our 70s and beyond. Generally I am very satisfied with my marriage, although my wife who also suffers from several health problems, finds coping with my disability often a frustrating one.
C. MEDICATION MOOD AND NAME CHANGES
1. In the first 15 years of my retirement, 1999 to 2014, I had two major, and four minor, medication regime changes. Discontinuation or changing medications is a major problem in BPD treatment. The problems involve efficacy, safety, and tolerability considerations.
2. Over the last several decades I have suffered from a highly varied and sometimes cyclical pattern of highs and lows. They are difficult patterns to define, to understand and, therefore, to seek out and obtain a diagnosis and treatment. Perhaps by the first decade of this third millennium, that is, by 2001, I had come to have what was then called Bipolar Disorder NOS, sub-threshold BPD. I seemed to be suffering from bipolar spectrum symptoms, that is some manic and depressive symptoms, but in some ways my symptoms did not meet the criteria for one of the major subtypes of BPD. I could argue that I had the type of BPD known as: BPD NOS, Not Otherwise Specified. Despite not fully meeting one of the formal diagnostic categories, BPD NOS can still significantly impair and adversely affect the quality of life of the patient. After some reflection, and after seeing a psychiatrist in April 2012, it was obvious that I had BPDI and not BPD NOS.
3. I have mentioned these sub-types of BPD above since I seem to have some elements, characteristics, of these forms of BPD over the last several decades. But I have never been formally diagnosed as having any of these sub-types. By the 1980s the lows in my life had come to be manifested only before going to sleep. The high energy levels of the 1970s disappeared. Those lows seem both in retrospect and prospect to have been, and now are, those depressive episodes in life. But they do not meet the full criteria for a diagnosis of major depression.
3.1 These lows have included, though: suicidal thoughts and feelings, lack of interest in the social dimension of life and the desire for more sleep, among other symptoms. The significance of the depressed phase of BPD has been markedly underestimated. I make mention of this fact in my narrative several times because: (a) bipolar depression accounts for most of the morbidity and mortality due to this illness and (b) I found the lows horrific in my pre-medication days. I found my lows horrific in my pre-lithium days, the days before I was given the official psychiatric diagnosis of BPD. The years 18 to 24(1963-68) and 35-36(1979-80) contained those horrific lows. I do not recall being given any formal diagnosis of BPD until 1980.
4. The horror made me wish for death just about continuously for several months. When I had the trauma associated with some of my experiences of student incivility and control issues in classrooms, it does not surprise me that I have had some PTSD since at least 1968, if not before in my childhood due to my father’s temper. The degree of my exposure to high levels of trauma in childhood is difficult to assess and any conclusions about this childhood experience are hypothetical. Exposure to childhood trauma in the form of witnessing the domestic verbal violence of my father is now recognized as an independent risk factor for suicidal behavior and ideation later in life.
5.1 A pattern of unstable, intense, and stormy relationships where the person may frequently shift between idealizing and devaluing their partner. With the increase in effexor in September 2010 this tendency, which had only been occurring when my effexor levels were too low, or when I was in an argument, has been virtually eliminated.
5.2 Being impulsive in ways that are problematic or damaging. This makes for a certain inconstancy in living, a certain tendency to take risks, and a vulnerability to addictions.
5.3 Frequent and intense mood swings.
5.4. The experience of intense anger and/or difficulties controlling anger.
5.5 A paranoia that comes and goes as a result of experiencing stress.
D. OTHER TREATMENT PROGRAMS
1. Eye Movement Desensitization and Reprocessing (EMDR) is a relatively new clinical treatment that has been scientifically evaluated primarily with trauma survivors. EMDR's originator, Dr. Francine Shapiro, describes the procedure in detail in a recent book, and advises that therapists use EMDR only after completing an authorized advanced training in EMDR. In EMDR a qualified therapist guides the client in vividly but safely recalling distressing past experiences. This is known as "desensitization." Any new understandings gained are part of a process known as "reprocessing." This involves a reprocessing of the events, the bodily and emotional feelings, and the thoughts and self-images associated with them. The "eye movement" aspect of EMDR involves the client moving his/her eyes in a back-and-forth ("saccadic") manner while recalling the event(s). I have done much desensitization and reprocessing over the last several decades on my own and that is why I mention this EMDR here.
2. In the last seven years, 2008 to 2014, I have tried to observe the beginning/initial signs of my defensive or my submissive postures so that I can act more appropriately in what I see as threatening situations. I am slowly learning in these middle years(65-75) of my late adulthood(60-80): (i) to observe the origins of my defensive and submissive responses and (ii) to apply non-defensive and non-submissive action systems like: exploration, social engagement and, perhaps, even play. I hope to learn to recognize my overactive defensive actions sufficiently to prevent and emotional outbursts of anger. I seem to need to learn new reactions, and see these resources as replacements for those reactions I once had--and that are not needed any more, not needed as they once were, and which once defined who I was in order to survive.
3. As I write this 1st draft of the 14th edition of this account in March 2014, I am aware, thanks to my wife, of my interpersonal deficiencies and the need to take defensive or remedial action to prevent inappropriate personal engagement. I am also continuing the processes involved in EMDR referred to above. With the new meds I have been on for 21 months(4/'12 to 2/'14) my BPD story is taking yet another turn which I describe below.
3.1 In the last 6.5 years(8/07-2/14) what might be called my orienting and defence systems come to occasionally intrude upon and over-ride the functioning of the other systems, severely interfering with love and work, knowledge and play, personal growth and family-social relations. I am still trying to observe and modulate the arousal states which accompany my action systems. As I develop curious, open and non-judgemental exploration of my action systems, they become more robust and immune to take-over by defensive systems. The process is, as they say, a work in progress. The whole thing is complex to understand and difficult to describe in writing. I am trying to make my account as simple as possible for readers. In some ways I feel like a young adult learning systems of interaction for the first time.
3.2 Nearly three years ago now as I write this update, my wife and I decided to increase my effexor level from 37 & ½ mg to 75 mg due to an outburst of anger and invective the previous day, an outburst that had not occurred with my wife since January 2008 when I had gone right off the effexor medication. This was in August 2010. This is a good example of a meds response in order to modulate my arousal state. I was on this new level of effexor for 20 months by April 2012 when I began yet another meds pkg. My current intention is to stay on this level for as far into the future as I can presently foresee. I thought that at the age of 67 I had finally found a package of meds to stay on for the rest of my life. But this was not to be the case. If some new debilitating illness like Alzheimers comes into my life there will be yet another story.
A. MORE ON PTSD
1. The opening sections of this chapter 3 continue with the subject of PTSD. To deal with PTSD it is necessary that I avoid the stimuli associated with the trauma and the increased arousal. If I do not avoid these stimuli, in other words if I subject myself to too much stimuli, the result is: (a) difficulty in falling or staying asleep or (b) sleepiness and the need to go to bed, or (c) anger and hypervigilance. Now, at the age of 69, if I experience a significant degree of annoyance or irritation, perhaps the correct word here is 'fear' or 'threat', I try to remove myself from the situation and/or go to bed or my study. I do not want to experience increased arousal(anger) and the negative social side-affects that go with it: inappropriate verbal response, a response that is highly charged emotionally.
2. Formal diagnostic criteria for PTSD in the DSM-IV(1994) require that the symptoms last more than one month and cause significant impairment in social, occupational, or other important areas of functioning. Only about 8% of the population develop full PTSD. My PTSD, it seems to me, is partial. Predictor models have consistently found that childhood trauma(associated in my case with my father’s temper and my mother's illness), chronic adversity(associated with my BPD, employment and interpersonal problems), and familial psycho-social stressors(my marital and family troubles) increase the risk of developing PTSD in adulthood.
3. One of the treatments I use for PTSD is known as ‘exposure.’ This involves re-experiencing distressing trauma-related memories and situations in order to facilitate habituation and successful emotional processing of the trauma memory. Most exposure therapy programs include both confrontation by means of imaginations or creative visualization with/of the traumatic memories and real-life exposure to trauma reminders. This form of therapy is well-supported by clinical evidence. There are other therapies like CBT, cognitive behavioural therapy, or some simple talk therapy as conducted by successful therapists like Dorothy Rowe.
The above is a psychotherapeutic approach that aims: (a) to change the patterns of thinking and/or behavior that are responsible for the negative emotions and, in doing so, (b) to change the way a person feels and acts. I do some of this CBT and talk therapy on myself and with my wife. For an extended and useful description of PTSD see Wikipedia and other internet sites.
4. There are three and possibly four groups of symptoms that are required if a person is to be assigned the diagnosis of PTSD. I have some of the symptoms in each of all four groups. The four groups of symptoms include:
4.1 recurrent re-experiencing of the trauma in the form of: troublesome memories, recurring nightmares about the trauma and reliving of the trauma. In my case this was recurring nightmares involving mostly classroom teaching, student incivility and control issues as well as various group activities. Traumatic memories are the unassimilated scraps of overwhelming experiences which need to be integrated with existing mental schemas, and be transformed into narrative language.
4.2 a desire to avoid certain situations the contemplation of which produce a phobia. This phobia can involve: places, people, and experiences that remind the sufferer of the trauma and a general numbing of emotional responsiveness.
4.3 chronic physical signs of hyperarousal, including sleep problems, irritability, anger, difficulty remembering things,increased tendency to being startled, and hypervigilance. As I say above, though, if I can see my arousal going too high, I try to remove myself from the situation. In the last three years, 10/2010 to 1/2014, I have gone over the edge two or three times.
4.4 an emotional numbing which can be seen as a lack of interest in activities that used to be enjoyed, emotional deadness, distancing oneself from people, and/or a sense of a foreshortened future, that is, not believing one will live much longer.
At least one re-experiencing symptom, three avoidance/numbing symptoms, two hyperarousal symptoms must be present for at least one month and must cause significant psycho-social distress or functional impairment in order for the diagnosis of PTSD to be assigned to a person. PTSD is considered of chronic duration if it persists for three months or more. Since I manage my symptoms fairly well, I consider my PTSD to be only a partial PTSD, and it is mostly treated. I could probably benefit from some CBT, talk therapy and general psychological counselling but, at 69.5, am disinclined to venture into that domain except for brief chats with my GP and my psychiatrist two or three times a year.
5. With PTSD, the traumatic event, although real, took place outside the parameters of “normal” reality, such as causality, sequence, place, and time. The trauma is thus an event that has no beginning, no ending, no before, no during and no after. This absence of categories that define it lends it to a quality of “otherness,” a salience, a timelessness and a ubiquity that puts it outside the range of associatively linked experiences, outside the range of comprehension, of recounting and of mastery. Trauma survivors live not with memories of the past, but with an event that could not and did not proceed through to its completion, has no ending, attained no closure, and therefore, as far as its survivors are concerned, continues into the present and is current in every respect. Although I would not subscribe to all of this description in relation to my own experience, it is sufficiently accurate to include it here to reflect my life with PTSD. PTSD is, for me, quite complex, and complex partly because the symptoms are only partial and not extreme.
B. DISSOCIATION DISORDER
1. I would like to add here some comments about dissociation disorders(DD) since some aspects of this disorder seem to me to be relevant to my mental health. The condition of DD becomes a disorder when the walls of dissociation are so profound that the person can't function effectively in the world or be at peace inside themselves. Dissociations are normally unanticipated; they are typically experienced as startling, autonomous intrusions into a person's usual ways of responding or functioning. Due to their unexpected and largely inexplicable nature, they tend to be quite unsettling. This is not a problem I suffer from in a pervasive way, but it does exist in my daily life from time to time. I have no significant amnesia, nor do I have confusing and disconcerting dissociative processes that make me uncomfortable, sometimes painfully so. These are all features of DD. At worse, though, it seems to me that my DD is a very mild case.
These walls of dissociation have enabled me to survive some of the various trauma in my life. They have become obstacles as the words from the following pop-song explain:
I've built walls,
A fortress deep & mighty
That none may penetrate.
I have no need of friendship;
Friendship causes pain.
Its laughter and its loving
I am a rock,
I am an island.
From “I Am A Rock” by Simon & Garfunkel(1965)
DD doesn't have to necessarily be considered a "disorder," and even the DSM-IV notes that "dissociation should not be considered inherently pathological and often does not lead to significant distress, impairment, or help-seeking behavior." (DSM-IV, page 477). This is the case with my DD. DD is more a "condition" or a "state of being" which I have from time to time. It is not necessarily maladaptive or otherwise dysfunctional. Much of what Simon and Garfunkel sing here in the hit-tune “I Am A Rock” resonates strongly with me. But I am not a "total rock." I like friendship, laughter and loving but I have, indeed, built walls and live in a fortress deep and mighty that I do not want penetrated. Perhaps this is partly, or significantly, due to my life after the age of 60 as a writer and author, poet and publisher, online blogger and journalist, researcher and editor, reader and scholar.
C. TOURETTE SYNDROME
1. This is the logical place in this account to mention Tourette syndrome(TS) which is relatively common and often mild. But the current estimate is that it affects up to one per cent of the population. Strangely, about 40–70 per cent of Tourettes sufferers appear to have attention deficit hyperactivity disorder (ADHD) which I may have had as a pre-schooler. TS is a disorder that causes people to make sounds and words, vocal tics, and have body movements, motor tics, that are beyond their control. Tics occur suddenly, may last from several seconds to minutes and have no meaning for the person. Tics need to be present for at least one year before the diagnosis of TS can be confirmed. Most people with TS have their own unique type and pattern of tics. Tics may come and go over weeks and months. They may also change from one type to another. Many people with TS have episodes of tics that interfere with their daily activities.Some 20–60 per cent have obsessive-compulsive disorder(OCD). Although TS is usually worst during adolescence, I do not recall it being manifest in my life at that stage.
2. On average, in one-third of Tourettes sufferers, the symptoms get worse as they get older. That seems to be the case with me since going on my new medication package in 2001. One strange characteristic of Tourettes is that the symptoms wax and wane, with no obvious pattern. The symptoms are unpredictable, being very different from day to day and week to week. It seems that Tourettes is a disorder of the synaptic neurotransmitter chemicals that transmit information. Scanning studies of the brains of Tourettes sufferers show extra activity in those parts of the brain dealing with sensation, movement and language. The brain is fiendishly complex and, for this reason, little is known about the cause of Tourettes. Tourettes is known as a 'spectrum disease'. This means that it has a whole range of symptoms, from short-lived and mild, to chronic and severe.
3. Samuel Johnson’s biographer, Boswell, wrote that Dr Johnson had "nervous movements", and would often continually repeat fragments of words, or other sounds. I do this as well. This is the only manifestation of my Tourettes. Like Johnson, I suppress these verbal tics sometimes with a great effort of will and sometimes with little effort, since they are the cause of embarrassment and annoyance mostly to my wife. The famed neurologist and author, Dr Oliver Sacks, wrote that while "one must not romanticise Tourettes, one may have the rather rare situation of a biological condition becoming an integral part of the identity and of an individual.” At the age of 69 Tourettes is now an integral part of my identity but only my wife, and anyone who lives in my home for more than a few days, gets exposed to its features.
1. Identity is, itself, a topic of some importance in this account. A person's identity, says Britain’s pre-eminent sociologist, is not found in behaviour, nor--important though this is--in the reactions of others, but in the capacity to keep a particular narrative going. I could say much more about the subject of identity, but Giddens’ words underline how this account I have written about my BPD has the function of “keeping my narrative going.” A lifestyle, an important part of identity, involves a cluster of habits and orientations, and hence has a certain unity---important to a continuing sense of ontological security---that connects options in a more or less ordered pattern. The selection or creation of lifestyles is influenced by group pressures and the visibility of role models, as well as by socioeconomic circumstances. This account of my life experience of BPD places my lifestyle in context, and in this section deals with identity. There is a vast literature on the subject of identity, but I will only make a few comments here.
2. This document was originally written in 2001 as an appendix to my memoirs and to assist others in assessing my suitability for: (a) employment, (b) for a disability pension of some kind and/or (c) public or private office in a casual work and/or volunteer capacity. This document is no longer needed for these reasons since I am fully retired from FT, PT and casual/volunteer work and am on two old age pensions. Although this document no longer serves the purpose of helping others to make the evaluations it did more than a dozen years ago in 2001, and make their decisions and their personal and organizational assessments of me informed ones; although there is no need for others to assess my capacity or incapacity to take on some task or responsibility, I have kept this original general statement, what was a first edition in 2001 and have extended it to what is now an 14th edition a decade later for other purposes. I tend to update the most recent edition, from the previous year, in the following year as: (i) new knowledge comes to hand, (ii) new experience is added to my BPD history and (iii) as I reflect on 70 years of my experience of BPD. I have included in appendix 5 an article from an online newspaper to place mental health in a wider, populist and, hopefully, helpful context for readers. All of this relates to what you might say is the foundation or context for the expression of identity in my life. This sub-section on 'identity' could be extended to some length, but I will add only a few more comments before passing on to other topics within this account of BPD.
3. In the half century that I have had symptoms of BPDI I have been part of a world of psychiatry and its often simplistically dichotomised analysis of treatment programs. I have been a survivor of decades of anti-psychiatry literature, and a drug-popping consumer society. This dichotomy is not adequate to convey the complex personal reality of my experience as I look back over this half-century: 1963 to 2014. The 'survivor' and 'consumer' identities are not separate entities in my discussion of my experience of BPD. They have occurred both simultaneously and serially in my many decade-long story. The philosopher, sociologist and analyst Julia Kristeva says that “identity is always in crisis.” This is a helpful perspective for the BPD sufferer; it is a view of identity I find helpful. I leave it to readers with the interest to read more on Kristeva.
4.This autobiography suggests, exemplifies, a psychological reality that opposes and withstands the plague of popular fantasies that bombard consciousness in these epochs. My identity is not merely an image, ultimately empty, a symbol of another's demand on my life in an image-conscious society. Many people these days cast the net of life back in time to snare Vincent van Gogh and Virginia Woolf and see in their personal lives an identity with these famous souls. I do this a great deal in my writing as I attempt to define and describe, understand and examine my life-narrative. Anyone who becomes more than a little familiar with my writing will soon find this to be the case.
I accept that image has become a central aspect of life today; indeed to some extent I revel in it. I play the game, but realize it's a game. I know that many of my desires I have been taught through my only partly avoidable immersion in society's realities. I have been hooked, as we all have been in varying extents, by the "aesthetics of consumerism.” "Coolness" and "glamorousness" I am aware of in some symbolic world that I inhabit in a depthless realm of masks, of images and brand names whose cache and status inevitably change, revealing no stable core at best or no substance at all.
5. But I know my reality is not image. The movies I have seen are entertaining but have only what some writers call a secondary reality. Consequently, I am plunged into and forged by a sea of signifiers which, while stimulating my sensory emporium, ultimately signify little, indeed, something approaching nothing. I am conscious of body image but I get no, or very little, sense of identity from my body. My psyche, to the extent that it is filled with electronic media products, is a void because that environment is an abyss, and the inner world, if one can call it that, which it recreates in this narration is just as depleted. This subject, which I have alluded to here only briefly, is a long and complex one and I shall conclude with some very general contexts for identity.
6. The following two paragraphs provide for some detailed contexts for defining and contextualizing one's identity. Identity in philosophy is also called sameness. It is whatever makes an entity definable and recognizable. The Law of identity is the principle of logic stating that an object is the same as itself. Personal identity is the numerical identity, or the continuity of existence of persons through time. In the areas of personal conception and expression, there is gender identity which is also known as core gender identity. It is known as gender, or the lack thereof, that a person self-identifies. Identity formation is the process of the development of the distinct personality of an individual. Identity in the social sciences is the individuality, personal identity, social identity, and cultural identity found in psychology, sociology, and philosophy. A person's persona is their social role or the character played by an actor. Sexual orientation identity is how people identify their own sexuality.
7. Specifications of people involve: identity change and identity document,identity theft and the deliberate appropriation of someone else's identity without that person's permission for criminal purposes. This all lies in the field of personally identifiable information. Group expression and affiliation is indicated by: religious identity, membership in a religious movement, cultural identity, person's self-affiliation or categorization by others as a member of a cultural group. It can also involve: identity politics, political arguments that focus upon the self-interest and perspectives of self-identified social interest groups or minorities, or national identity, belief in membership of a nation.
A. PEOPLE'S ATTITUDES TO DOCTORS and ANTI-PSYCHIATRY
1. Many people have negative attitudes to doctors. Many do not feel comfortable going to doctors, to psychologists, to clinical psychologists and, more especially, to psychiatrists. Perhaps this is part of a general distrust of certain professional fields in our world today. Perhaps it is part of a general public being more critical, wanting to be more informed and wanting to play more of a role in their own treatments. Perhaps the central issue is trust. People seek help in so many different ways; some try to work things out themselves and there are, of course, various combinations of those who try, those who have given-up and those who go back and forth between the two poles of trying and not trying to sort out their disorder, their psychological problems or whatever. Many often find the journey through the corridors of mental health problems so complex, such a labyrinth, that they give up in despair. Suicide is common among the group I refer to here. That group includes the sufferers from BPD, depression(D) as well as a range of other illnesses and life battles of a traumatic nature.
2. Many who suffer from various mental health disorders experience psychological and spiritual crises over many decades. They often become angry at what they see as abuse by the psychiatric profession. They come to mourn all the unnecessary pain and suffering they have experienced and the unnecessary pain and suffering they have caused to others. They often feel they have been overmedicated or been misdiagnosed by their psychiatrists. They come to see their psychiatrists, and even psychiatrists in general as incompetent, as tools of the big pharmaceutical companies and sometimes even as part of a social conspiracy involving overt or hidden forms of social control. As one sufferer put it recently in an email they come to “firmly plant their flag with the crazies and the mad liberationists, the anti-psychiatry and anti-pharmacology movement, the psychiatric survivors and the human rights activists.” I have not ended up in that camp although, from time to time, I was on the edges of that increasingly large and diverse company in the wider society. I would like to say a few more things about the world of anti-psychiatry.
3. The field of anti-psychiatry is a large one. I have referred to this subject briefly earlier in this study, this lengthy account. Criticism of the field of psychiatry for issues that have long been recognized within the field and are thus targeted by current research are now easy to access in cyberspace. Here is just a short list of some of the issues: psychiatric diagnoses are based on symptoms rather than pathophysiology, treatments are insufficiently effective, newer medications have provided limited (if any) benefit over older medications, the pharmaceutical industry has had inappropriate relationships with individuals and organizations within the profession; there are problems in access to psychosocial treatments for psychiatric disorders, psychiatrists prescribe medications to treat symptoms rather than correcting known biological abnormalities; the psychiatric understanding of the neurobiology of psychiatric symptoms is limited, and there are not objective biomarkers to guide diagnosis or to match individual patients with particular drugs. Still, it must be emphasized that clinical data provides empirical support for the validity of symptom-based diagnoses. Psychiatry is hardly unique in prescribing medications based on symptoms rather than pathophysiology. Psychiatric pharmacotherapies have limitations that are not very different in relative efficacy from current treatments for many chronic medical disorders(New York Review of Books August 18, 2011)
4. The underlying science of psychiatry and the reality of the distress and disability of psychiatric patients are two issues that are not emphasized sufficiently in many discussions. These are critical issues because (1) the ability of psychiatry to effectively treat its patients now and in the future depends upon the quality and integrity of its science, and (2) the doubt cast on the seriousness of the distress and impairments of patients seeking psychiatric treatments feeds into the residual ignorance and stigma that continue to be so harmful to patients. Psychiatry is engaged in a challenging battle to understand the most complex aspects of human biology and behavior and to reduce the burden arising from psychiatric disorders. The progress that has been made in the field since I first had to deal with the symptoms of BPD is immense. The enormous and well-documented remaining unmet medical need must also be emphasized. By demeaning the real world challenges faced by psychiatrists and their patients, selectively ignoring scientific progress that challenges critical assertions, and presenting tendentious and highly selected information about the status of psychiatric neuroscience, critics often misuse their authority of status to further stigmatize the field of psychiatry and patients with mental disorders.
Many articles on mental health are filled with half-truths that would seem to call for society to abandon psychiatric diagnoses, antidepressant medications, and psychiatric neuroscience. The negative impact of each of these actions on individuals with psychiatric disorders and society is immeasureable. Often such critics provide no alternatives to the status quo or a constructive agenda that might ultimately speed the alleviation of human suffering. Instead, many critics attack the one clear path to better diagnoses and more effective pharmacotherapies, translational neuroscience. By stigmatizing a field progressing toward a scientific foundation and by disparaging treatments that show signs of efficacy, much facile criticism of psychiatry does much harm. Doing harm in this way, in the name of ethics is a form of illusion.
5. When psychoactive drugs were first introduced in the decades 1950 to 1970, there was a brief period of optimism in the psychiatric profession. It was during this period that I had my first contact with the psychiatric profession. By the 1970s, optimism gave way to a sense of threat. Around 1980 optimism returned; it was then that I started taking lithium. By the late 1980s, though, this optimism was replaced by a slowly increasing pessimism. Serious side effects of the drugs were becoming apparent, and an anti-psychiatry movement had taken root as exemplified by the writings of Thomas Szasz and the movie One Flew Over the Cuckoo’s Nest. There was also growing competition for patients from psychologists and social workers. In addition, psychiatrists were plagued by internal divisions: some embraced the new biological model, some still clung to the Freudian model, and a few saw mental illness as an essentially sane response to an insane world. Go to this link for a further discussion on this topic: http://www.nybooks.com/articles/archives/2011/jul/14/illusions-of-psychiatry/
6. Often, of course, the anger and sorrow of BPD sufferers is completely justified. Anger tells patients that they have suffered an injustice, that they did not deserve to be mis-diagnosed or over-medicated. As soon as clients come to know in the bottom of their souls that they were and are innocent, that they are the experts in their own experience, that they did not deserve the treatment they received, and that it was wrong, then they may be able to forgive those who made the mistakes and let the whole thing go. Their sorrow tells them that they have lost something of value, and indeed they have. Huge chunks of their lives have been stolen from them or lost or both, and that is sad, very sad. Possessing a philosophy, usually a religious philosophy, that nothing of value is ever truly lost can help. The virtues a person fails to develop, the relationships they broke or destroyed are all waiting for each person in the Kingdom, so goes one line of thought that can be helpful, where the end is finally seen in a new beginning, and that beginning loses whatever sting that had previously existed--if there was any sting.
B. GOOD THERAPISTS AND THE STIMGA OF MENTAL ILLNESS
1. Our families and our friends see us through the lens of their expectations and that lens is often one that clouds the view and does not help the relationship. But a good therapist and one who is also a Baha’i tries to see us as God sees us, that is: full of potential and capable of transformation. A good therapist has seen people grow and change. A good therapist has faith in the human spirit. If a person does not have a good therapist, they can at least turn to the Baha’i Writings in their despair. These Writings can also help us see ourselves through God's eyes. But it is important to choose which Writings one focuses on in order to be inspired by the positive vision rather than overwhelmed by the high standard contained therein.
2. This account may help BPD suffers obtain appropriate treatment and, as a result, dramatically improve their quality of life. I think, too, that this essay of more than 110,000 words and 260 A-4 pages(font 14)(320 pages at font 16) is part of: (a) my own small part in reducing the damaging stigma associated with BPD, (b) what might be termed “my coming out,” (c) the small part I am able to play in helping others accept some diagnosis they are given by a professional in the field of mental health and particularly of BPD and/or (d) my way of helping those who have been abused by psychiatry as I have indicated above.
3. I'll add a few comments here about mental health stigma. The stigma is about people judging people living with a mental illness. If a person has a low self-esteem, then they are feeling bad about themselves. I generally do not have this problem. I have a good self-image, and so it is that other people's negative opinions about me do not have a huge detrimental effect. Their opinions have an affect but it is not incapacitating.
Some BPD sufferers do not want to seek a proper mental health diagnosis or get the treatment they need. They decide to hide their mental health problems or even not admit that they have them, thus not receiving the treatment they need and allowing their BPD problems to fester and build up inside them. They often fear: "what would happen if others find out." How would one's life be different if one stopped allowing other people to dilute or poison one's day with their words or opinions? Let today be the day that one stands strong in the truth of one's beauty and journey through one's day without attachment to the validation of others."
1. There are so many sub-categories of BPD sufferers and people with mental illness problems generally. Once a person has a firmly established and agreed-on diagnosis, and they are willing to run with that diagnosis, they may find this statement useful. Rather than trying to manage their feelings on their own and rather than rejecting the diagnosis or under-identifying with it, acceptance can be of great help. Acceptance, or compliance as the process is often called, is very difficult for many BPD sufferers. BPD sufferers often who do not accept their illness and for that reason they do not really deal with the issues that are part and parcel of their life as a person. Sometimes their non-compliance is justified. In my case it was not and my non-compliance caused me problems in the decade 1981 to 1991.
2. Diagnosis is often contingent upon corroborative history obtained from family or friends. Hypomanic or manic symptoms are often egosyntonic, that is, they are not recognized as abnormal by patients. They often affect others rather than patients themselves. Therefore, any suspicion of bipolarity necessitates an independent interview with an objective observer. Whenever feasible, these interviews are best conducted in patients' absence to allow full and frank disclosure. Involvement of family and caregivers is also vital because of the burden that bipolar disorders impose on the support network, especially spouses and children. In my case this was not necessary because I accepted the diagnosis.
3. The BP II group generally has "suicidal thoughts, guilt feelings, depersonalization and derealization, and atypical features such as hypersomnia and weight gain." I am not a BPII person, alhtough I might have been in my university days. The unipolar depression group experienced higher psychic anxiety and initial insomnia, and assessed themselves significantly higher in terms of slow thinking, feeling the worst, avoiding risks, life dull and dreary, dragging from day to day, and feeling they have no energy. Looking back to my first experience of depression in the autumn of 1963, I would have no trouble seeing that experience as unipolar depression or the beginnings of BPDII. BPD individuals are more likely than those with unipolar depression to display psychotic features during a depressive episode (30 percent vs six percent). This was the case for me in the summer and autumn of 1968. Those with bipolar I had more ECTs (18 percent vs six percent) suggesting more severe depressions, and more suicidal episodes (33 percent vs eight percent).
4. BPD sufferers also need to be aware of the problem of over-identifying with the illness. There are easy to acquire self-administered checklists to help sufferers differentiate between personality traits, other personality disorders and normal mood swings on the one hand and symptoms of mania or depression on the other. The problem of using BPD as a justification for a range of behaviours or even a lifestyle is very real. I could comment on this at some length.
D. THIS BOOK: MY STORY
1. This book, as I say, of some 260 A-4 pages(font-14) and more than 110,000 words is written: (a) for doctors and various medical professionals who have dealt with or will come to deal with my disorder and especially for those who are now, at this present time, involved with my treatment should: (i) I decide that they would find such a statement useful or (ii) they request such a statement; (b) for the registered users and guests at internet sites dealing with health in general and mental health in particular: BPD, D and schizo-affective disorder(SAD) among other special mental health illnesses; (c) for some of my relatives, friends and associations over the years with whom I still have contact in these middle years(65-75) of my late adulthood as the years from 60 to 80 are called by some developmental psychologists and to whom it has seemed relevant to give such a statement; (d) for government departments, voluntary organizations, interest groups and Baha’i institutions who require such statements for reasons associated with our relationships and interactions; and (e) for myself as a reflection, for my own satisfaction, to put into words the story, the results, of an illness, a sickness, a disorder that has influenced my life for seven decades.
2. The wider framework of my experience which I outline here is intended to place my BPD in context and should help to provide others with what I hope is a helpful perspective, as I say above, in relation to their own condition, their own problems and situations. Perhaps my statement may help other BPD, and unipolar depression sufferers describe and understand their personal histories. My BPD exists on an affective spectrum, a grouping, of related psychiatric and medical symptoms. These symptoms accompany bipolar, unipolar and schizoaffective disorders at statistically higher rates than normally exist in the general population. These disorders are identified by a common positive response to the same types of pharmacologic treatments. They also "aggregate strongly in families and may therefore share common heritable underlying physiologic anomalies" to use some of the complex language of psychiatry.
3. This document, this statement, originally written in 2001 for the Australian government’s now department of Human Services, its Centrelink section which deals with Disability Support Pensions, has been revised many times after further reflection. Now in its tenth edition after feedback from various doctors, friends and internet respondents, as well as after an increase in my own knowledge of the illness as a result of further study, this document is an ongoing and changing, cauldronous and fluctuating entity as my experience of the disorder continues into the evening of my life. I have been on two old age pensions since July 2009, one from Australia and one from Canada. This BPD is still a part of my life.
3.1 Readers interested in this story can read it in several instalments/segments at the NAMI site, The National Alliance on Mental Illness>Consumers Section>Posting 18/7/06, among a host of other sites on the internet. This posting provides a much greater and detailed statement. My memoirs, now a 2600 page 5 volume work, place my experience of BPD in a life context. This memoir can be found at eBookMall, in an earlier edition, under the title Pioneering Over Four Epochs or at Baha’i Library Online in two parts in a truncated form>By author>Price>Go>Scroll down to Parts 1 and 2 of my autobiography entitled Pioneering Over Four Epochs.
3.2 I do not claim to possess a specialized and/or professional expertise in the field of the study and treatment of BPD. I do not work with people who have such problems, nor do I have a desire to do so, except as a participant at a number of internet sites concerned with relevant mental health topics and with people who cross my path serendipitously with various related problems. In northern Tasmania, the region where I live, there is an ARAFMI support program in Launceston less than 50kms away from this town of 7000 where I live. This group in Launceston is for the carers, relatives and friends of the mentally ill. There is also GROW TAS, a support group based on a 12-step self-help program for people suffering anxiety, fear, anger, depression or other symptoms of mental or emotional distress. This group is based in Hobart, a three hour drive from where I live. I do not have any desire or any felt need to discuss my mental health life; I do so on the internet in response mainly to the concerns and interests of others and, initially to post my own story and solicit responses from others. In the last several years I have done this at over 100 relevant internet sites and established a solid presence at many of these sites.
4. Readers who are busy and not inclined to read a long statement like this are advised to skip, to scroll-down to section 10.3.9 below and some of the sections following after 10.3.9 to avoid reading much of the history and much of this statement that is not relevant to their needs. They can then: (a) make some practical assessment of this account, an assessment relevant to their present and personal needs; (b) obtain a shorthand account of whatever information in this document is relevant to their particular situation; (c) assess my suitability to undertake: (1) some form of employment: FT, PT, casual or volunteer; (2) some task that they think I could take on or some social or leisure activity in which I could engage with profit to others; (d) assess whether they themselves can go onto a pension of some kind and, finally, (e) understand my background of BPD more fully and so contextualize my life in order that they might understand me better.
5. About half of my waking hours in life since my retirement more than a dozen years ago(1999 to 2014) is spent in: sleep, rest, and personal hygiene; the other half in social and domestic, literary and intellectual domains. Readers of this account can google “RonPrice” followed by one of many words like: poetry, literature, philosophy, psychology, inter alia to give them an idea of my wider writing and life interests. This long piece of writing is but one of the many pieces of my writing these days. The vast majority of my writing and my interests both in and off the internet has nothing to do with BPD.
5.1 Sharing experiences through narrative is a central aspect of what has now become a diffuse collection of mental health consumers, survivors and ex-patients. Multitudes now share their experience with the aim of helping others to find their strengths and move toward healing and self-determination. Stories are shared at large and public gatherings, in small peer-support settings, indeed, a host of places by people who have been defined and treated by psychiatry. Such settings provide a means to frame one's own experience with psychiatry, to experience a collective recognition of shared wisdom and learning or tests and injustice, and to identify with the power of heroic and not-so-heroic accounts. A complex relationship exists between behaviour, psychological classification, and psychotherapists and the 90,000 words in this account is a testimony to this complexity. There exists a triadic relationship between classification, classifier, and classified that can have effects not only on the behaviour of those classified with a particular ailment, but also on the description of the ailment itself.
6. My use of the word ‘survivor’ implies, to some extent, that I’ve been in a concentration camp. There were times when I did feel that way and even now I do feel as if I am a survivor of life’s battles. ‘Ex-patient’ is a term I do not want to use now, although I did not mind the term when I had just got out of a mental hospital after several months back in 1968, or after one month in 1980. The term ‘consumer’ is one I like, and I like it more and more as the years go on. I am a consumer of services. I can get up and I can go and I can get treatment wherever. I don't feel ashamed that I'm a mental health consumer although, given the stigma associated with mental health issues, I am cautious about engaging in discussion. Caution and wisdom, though and I trust, should come to characterize a person’s verbal art in their old age.
7. This long piece of writing, too long for some and perhaps for most, not as sharply focussed on my actual day to day experience as some respondents on the internet have already indicated and not particularly relevant to the experience of others, others with BPD among other disorders, in an illness that has a very wide range of behavioural typicalities. Without going into detail regarding the many typicalities associated with those who suffer from BPD that I have referred to above and without outlining a detailed history of the treatment of BPD in the medical and psychiatric fields, all of which can now be easily googled on the world wide web, allow me to briefly describe two creative people who suffered from BPD, the famous composers Tchaikovsky and Robert Schumann. I could easily have chosen dozens of others whose lives and whose experiences of BPD are now well-documented. See: David Brown, Tchaikovsky: The Man and His Music, Pegasus Books, New York, 2007 for the life-story.
8. After some 70 years of dealing with this medical problem in my private and public life, I would be only too happy to put it to bed, to put it into some final corner and forget it. Sadly, or perhaps fortuitously, I cannot do so because I still suffer, even after 70 years, with problems that are part of this disorder’s long history and its current manifestation in my life. I have also become more conscious, as I have come out as it is said colloquially, of how this lengthy personal statement has come to be of great help to many, especially at the more than 100 mental health sites on the internet where I place all or parts of this document. Major affective disorders continue to be the leading causes of psychiatric disability and the need to develop safe, effective, and efficient long-term treatments for these disorders is of extreme importance not only to professionals but to the millions of sufferers. People like myself with life experience of BPD have stories that can be of use to other sufferers. That is at the core of my motivation for all the internet posting I do at mental health sites related to BPD.
E. CREATIVITY: CREATIVE PEOPLE
1. It doesn’t take much listening to Tchaikovsky music to appreciate that he was a very emotional man, a man whose passions often got the best of him as they often have got the best of me. He suffered from BPD with its highs and lows following upon one another with bewildering rapidity. He had many episodes of depression and many panic attacks which often resulted in flight, in tearful reactions to events, in impulses to overwhelming generosity and kindness and outbursts of angry temper. The result of all this emotional stress and struggle was that in 1890, when Tchaikovsky was in America, some commentators took him to be in his sixties, ten years older than his actual age and this had the effect of depressing him even further.
1.2 Typically for Schumann, when he was in a manic state he would compose feverishly, but when he fell into a depressive state, he was virtually paralysed. It makes me wonder: What if Schumann had prozac or lithium? Would his creativity have been helped or hampered by these modern, so-called wonder drugs? Would his autobiographical Second Symphony tell a different story? As it stands, I hear the music pulsing with Schumann's journey from abject depression to triumph and joy. It's a parallel to Beethoven's own personal journey in his Symphony No.
2. When a person has BPD their brain does not reward them with a rush of dopamine easily, so they have to go to more extreme measures just to get that experience of well-being. That desperate desire for stimulation is also why many people with BPD self-destruct, engage in increased sexual activity and shopping among other excesses. Finding a creative pursuit that is truly engaging has been, for me, a great remedy for my addictive and OCD tendencies as well as my apparently above normal desire for stimulation. The pleasures associated with the passions: eating and drinking, sexual and sensory stimulation must all be kept within bounds and over my seven decades they have been, for the most part. Unexpressed creative impulses, so many argue, are the driving force behind some of the negative behaviours associated with BPD. On the other hand expressed creative impulses can be a positive driving force and, in my case, this has been especially true under the medication regime of the five years: 5/07 to 5/12 as well as this most recent regime from 4/12 to 3/13. It was also true at other highly successful points/stages in my teaching career: 1967 to 2005.
3. I would like to make two somewhat parenthetical remarks here in relation to creativity, remarks that I would not have made several years ago. Firstly, a phenomenon that has only emerged in society in the last decade, as far as I know, of people actively seeking out a diagnosis of a mental disorder and particularly bipolar due to its association with creativity. Perhaps they are looking for a justification for their own bad behaviour. The phenomena could also be due to increased public awareness through the internet, radio and TV, coupled with the willingness of celebrities to talk about their own personal experiences of mental illness.
4. Secondly, there is an aspect of mental disability that can be seen in some of the views of Martin Luther King's deeper philosophy of life. Instead of actively seeking a diagnosis of mental disorder, King sought to deny it. But he held the view that in our sick society we should be, as he put it, creatively maladjusted. As he said in a sermon on this topic: “Everybody passionately seeks to be well-adjusted, but there are some things in our world to which men of good will must be maladjusted. Human salvation lies in the hands of the creatively maladjusted.” Psychiatrists and psychologists call 'adjusted' those who are able to fit in, those who have the intention of fitting in, of wanting to be accepted and functioning well. The average teenager is obsessed with being adjusted, and so are adults, more than we care to admit: the average corporate employee, the typical professor, intellectual, television pundit. They are all rewarded for being well-adjusted. But this kind of normal thinking, this conformism, is deadly to creativity. The result of such an attitude is that a person would never have a new idea; the past becomes the future, and all problems requiring a person to think outside the box would become insoluble dilemmas.
4.1 Dr King realized that to solve the problems of human life, especially the deepest problems, like racism, poverty, and war, we have to become, in a sense, abnormal. We have to stop going along; we have to stop accepting what everyone else believes. We have to become maladjusted if we are to become at all creative. Insoluble dilemmas often are the masks for other previously unrecognized problems with simple solutions. Dr King knew what it meant to be maladjusted, psychologically, because he was not normal, psychiatrically. He had multiple periods of severe depression, and twice made suicide attempts as a child. Near the end of his life, some of his staff tried to get him to have psychiatric treatment, but he refused. There are aspects of these ideas of King’s that are relevant to my BPD story. There are questions and issues which are raised by what King is talking about here: what is normality? what are the problems relating to stigmatization? What does being sane in an insane world mean, inter alia.
F.SOME GENERAL INFORMATION and THE PHARMACEUTICAL COMPANIES
1.Data from the United States on the lifetime prevalence of BPD--and mine has been a lifetime of BPD--indicate a rate of 1 percent for Bipolar I, 0.5 to 1 percent for Bipolar II or cyclothymia and between 2 and 5 percent for sub-threshold cases meeting some but not all criteria for BPD. There are many statistics in relation to BPD which I do not list here.
2. I could make a few general comments about the increasingly close relationship between: (a) the pharmaceutical industry and the American Psychiatric Association (APA), (b) about a sub-field of philosophy and sociology known as hermeneutic phenomenology, (c) anti-psychiatric and (d) literary perspectives. But such comments would be largely tangential to this account and so I leave such themes outside my statement here.
3. My experience, my distress, has been given the name BPD. This disorder exists within a socially accessible grid of intelligibility and has been provided with a solution. Seeking out cause, prognosis, and cure within my physical anatomy, my genes and chemistry through tests and palpable signs, the bio-medical discourse of psychiatry maintains the modernist, positivist view that scientific methods are objective and can ultimately lead to a universalizable truth. Critics of this particular framing of distress are typically placed in three camps: anti-psychiatry, critical psychiatry, and increasingly, post-psychiatry.
4. Emergency psychiatry is the clinical application of psychiatry in emergency settings. Conditions requiring psychiatric interventions may include attempted suicide, substance abuse, depression, psychosis, violence or other rapid changes in behavior. Psychiatric emergency services are rendered by professionals in the fields of medicine, nursing, psychology and social work. The demand for emergency psychiatric services has rapidly increased throughout the world since the 1960s, especially in urban areas. Care for patients in situations involving emergency psychiatry is complex. I experienced 'emergency psychiatry in: (i) June 1968, (ii) July 1968, (iii) January 1978, and (iv) May 1980. The facilities for my treatment were: a psychiatric hospital, a psychiatric ward, an emergency room, a psychiatrist's office, and a GP's office.
4.1 Individuals may arrive in psychiatric emergency service settings through their own voluntary request and that was the case for me on each of those 4 occasions. There were, of course, times when a referral from another health professional occurred. I never experienced involuntary commitment. Care of patients requiring psychiatric intervention usually encompasses crisis stabilization of many serious and potentially life-threatening conditions which could include acute or chronic mental disorders or symptoms similar to those conditions.
5. Since the 1960s, when I first made use of psychiatric services, the demand for emergency psychiatric services has seen a rapid growth due to deinstitutionalization in Europe, the United States and Canada, and Australia. Deinstitutionalization, in some locations, has resulted in a larger number of severely mentally ill people living in the community. There have been increases in the number of medical specialties, and the multiplication of transitory treatment options, such as psychiatric medication. After the 1960s, that was true for me; most of my treatment became "medication taken at home."
The actual number of psychiatric emergencies has increased significantly, especially in psychiatric emergency service settings located in urban areas. Emergency psychiatry has involved the evaluation and treatment of unemployed, homeless and other disenfranchised populations. Emergency psychiatry services involve: accessibility, convenience, and anonymity. While many of the patients who used psychiatric emergency services share common sociological and demographic characteristics, the symptoms and needs expressed did not conform to any single psychiatric profile. The individualized care needed for patients utilizing psychiatric emergency services is evolving requiring, an always, a changing and sometimes complex treatment approach. I shall return to this subject of deinstitutionalization later in this book but, for now, I leave it to readers to follow-up on this subject if they are interested.
G. MORE INITIAL REFLECTIONS
For many who suffer from mental health issues of one kind or another, living, reading and thinking around the subject results in a set of complete mysteries. One of these mysteries is: why some people are knocked flat and incapable by what seem like only the mildest of dysfunctional backgrounds, compared to others whose childhoods were devastated by cruelty and deprivation, let alone those who grow up with famine and war, yet seem to find a way to live their lives as if they were their own. Then, there is all that space in between the extremes of near harmlessness and full-blown misery: the whole regular family muddle and mess, complexity and booming and buzzing confusion that everyone has to survive, or not survive as the case may be. Like physical pain, which each individual is asked to assess on their own scale of one to ten, how much hurt you have received and how devastating it has been for you is too subjective to bear much comparison. Whatever hurts you hurts, and however damaged you’ve been is how damaged you are. My own experience of hospitalization, of dealing with pharmacology's assets and debits, of self-and-professional psychotherapy, and life's slings and arrows in general, has resulted of some degree of self-knowledge, hopefully a good-deal, as I head through my 70s from 2014 to 2024.
In this now lengthy book I describe myself on the many occasions when I was going through the centre of my many episodes of BPD as totally panic-stricken, unable to tolerate either life or myself. Being intolerable to oneself is a feeling I know, one that seems almost impossible to convey effectively, although I try time and again in this narrative. I try this way and that to write it, or describe it, but I always fail to do more than point at the name of the personal experience with a few words to encase the feelings, emotions and thoughts. Perhaps in an attempt to get closer to the physical and emotional reality of this mental disorder, I intersperse my chronological narrative with notes or recollections of sessions with a psychiatrist. Back in the 5 to 6 month period in 1968 I saw several psychiatrists on their rounds, or in their consulting rooms, five days a week throughout my period of hospitalization, institutionalization. On one of these worst of times, later in life, I sat not on a couch, but on a chair in no necessarily prescribed way. I was desperate then to convey my feelings and to get him to do something to help me.
The condition I speak briefly about in the above paragraphs is all-too familiar to me, if not to others, and it has been the most terrible condition on earth. Thankfully, it has only been periodic and not a 24/7 event. The much greater real-world sufferings of the poor and oppressed is of no help when one is down and out and in the midst of an episode. My psychiatrists have often let me know that they recognised the degree of my desperation. The worst feeling in the world was just about impossible to describe, this sort-of naked defencelessness. People will do almost anything, from suicide to withdrawal, from self-medicating with drugs or alcohol or both to fight or flight---in order to avoid experiencing this feeling. In this book I speak of my ‘stranded, homeless’ feelings: ‘Homeless feelings are boundless; they sweep all before them' and send one into a wide variety of tail-spins.
By the turn of the 21st century virtually all of the large mental institutions in the West had been closed down. They had been places where people could spend all day, or all year or, in my case, half a year. They could do intensive day-long group therapy; in all of them they could work together or alone on projects, stare, or do nothing. They could feel they were in a safe space, with the physical warmth of other human beings around, and though the fights and dramas were plentiful, they happened in a peopled world that tolerated you. All those places,like that large Whitby psychiatric hospital back in the 1960s, all those old institutions disappeared; it was the great triumph of psychiatric therapy. Instead, general hospitals now have emergency psychiatric wards, with a limited number of beds and as fast a turnover of patients as anti-psychotic and anti-depressive drugs can sustain. Then, you’re on your own with the pills, and the underfunded, understaffed, sometimes mythical care in the community.
What we lost in this process of de-institutionalization was not just the institutions, which had their problems, though with a will (admittedly unlikely) that these might have been solved. We lost our asylums, and (not only in the realm of madness) with them the essential idea of asylum: a place society provided where one could go when overwhelmed by the terrible ‘stranded, homeless feelings’ that I sometimes describe as ‘the worst feelings in the world’. I point out that these institutions were hardly luxurious by the time of my stay; they were grim, stony places, cracked and falling apart. But they held out the promise of containment, given the goodwill and understanding of those who ran and paid for them---essentially ourselves when we were feeling better.
You could get relief from feeling socially obligated and guilty, because you were finally in a place that knew what you were and how you were, even if it couldn’t do much about it. Sometimes you needed to bury yourself, to be enabled to sit the worst out without the world pulling at you, asking you what the matter was, or reminding you of the things you should but could not be doing. It sounds like an almost absurd expectation in the current austerity/hardworking family rhetoric. But providing places of safety to people who are ill might not be economic madness. Back in that 5 month period in the big psychiatric hospital I believed that eventually, sooner and not later, I'd be freed the madness of my shackles, and whatever cruelty and isolation I felt; I believed there was a possibility of alleviating my suffering, even bringing about an improvement eventually. One writer puts my experience as follows: "The liberalism of the institution may well have been theoretically at the service of a repressive Foucauldian power protecting, as it did, the status quo. In practice, though, this institution offered some chance of treating me decently and giving me a space to exist when I felt existing was very difficult.
In the latter decades of the 20th century the professionals dealing with psychiatry and its institutions set out to deconstruct mental illness and its institutions. They disregarded, deliberately or ignorantly, the often implacable suffering of individuals, and the need for places of safety. It shouldn’t really be so hard to provide for such individuals, given the will. These great bins and day centres were not comfortable asylums for the rich or those with medical insurance; they were shabby, run-down places providing asylum on a low budget for people who for a while or even permanently, couldn’t get on out in the world. It’s obvious that someone lying on the ground with a broken leg can’t walk, so no one expects them to get up and pop into the doctors to get it set, and then get on with their business. It seems it is much harder, though, for many to believe in the physical and psychological anguish, debilitations and incapacitations of mental illness, and see the need to offer relief. The story of dealing with mental illness is far from over. I have only touched on it in these opening paragraphs and pages.
A. MY EXPERIENCE OF MANIC-DEPRESSION:
1.Phase One--My First 37 Years: 1943 To 1980
1.1 In the first 37 years of my life I had many episodes of various kinds of emotional imbalance or disorientation, themselves of varying lengths and intensities, ranging from a euphoric, impetuous, expansive or high mood to a depressed, grey, low energy or despondent mood. Indeed the range of mood in these 37 years was extreme, but the complete/extreme range was rarely experienced. In these years I learned various self-monitoring skills as well as some self-reinforcing tactics. Sometimes these symptoms affected my day-to-day life severely and negatively, sometimes positively and sometimes the affect was non-existent, insignificant and hardly noticeable.
“Feeding” ordinary, normally transient feelings of sadness with sad or negative movies, books, music, and conversations with negative people was a difficult habit to overcome. Indeed I still have to deal with this challenging aspect of life’s battle after decades.
1.2 After many experiences on the fringe of a normality that was my usual modus operandi or modus vivendi, as it is said in Latin, on the fringe of what I saw as my general everyday experience of life, an experience that is sometimes called the quotidian by writers, poets and novelists, I was diagnosed as MD in May 1980. I was treated by a psychiatrist in Launceston Tasmania while in the psychiatric wing of a general hospital. I had often been on the fringe of BPD, as I say above, a borderline zone, a limen as some historians call it, a border territory, a zone between normality and various behavioural extremes and eccentricities from my birth in 1944 to 1980. But in 1980 the symptoms were extreme and required hospitalization. The treatment regime in 1980 was lithium carbonate, an antimanic medication for the treatment and prophylaxis of BPD. Lithium had not been approved by the FDA in the USA until 1970 and only in 1974 as a preventive treatment for manic-depressive illness(MD).
1.3 Lithium was the first really successful mood stabilizer used by doctors beginning in the 1970s to treat MD. In the 1980s and 1990s MD came to be called BPD. Lithium cushioned the effects of extreme depression, hypomania and mania. It prevented their effects from striking at my life during the years 5/'80 to 5/'07. The perils of BPD existed, as I look back more than 30 years after my last manic episode, in what I did in the midst of: (a) those two manic episodes to deal with: decreased need for sleep, decreased self-control, irritability and risk-taking behaviours in 1968 and 1980, (b) the mixed highs and lows from 1963 to 1967 and 1978 to 1980; (c) schizo-affective or psychotic states in 1968 and 1979-80 episodes; and (d) depression periods with their moroseness, extreme melancholia and suicidal wishes in 1963, 1964, 1968 and 1978.
1.4 My history up to 1980 had been far from smooth and linear as my remarks above indicate. Those thirty-six years had often been bisected, polarised and traumatised. As I indicated above, I have written a more detailed account of these years elsewhere but this outline, this brief sketch here, of particular episodes and the periods between episodes will suffice. My experience of these highly diverse emotional and psychological swings of mood in everyday experience away from the norm, from my norm, is only part of my story. But it is a crucial part. Everyone has their story; everyone experiences all sorts of abnormal eccentricities and health problems in life, some people of course more than others and some more traumatic and intense than others.
1.5 My account of the years from 1943 to 1980 follows. I try, in writing about and in summarizing these first 37 years of my life, not to overstate my case, nor to understate it, but give an account of those first 37 years which I refer to here in this general statement as phase one of my bi-polar life. In some ways the inclusion of the names of those doctors who treated me over the years in this first phase and in later phases would personalise this account, but names are not that important and to include them here in this narrative causes confidentiality problems and raises privacy issues for some readers and for people in my own past who might not want to be mentioned. This question of confidentiality and privacy is especially true at some internet sites where posts are rejected if names are included in any posting at the site concerned---and so I leave names out. Those whose names I could mention would not be troubled by their inclusion here, not now, not in 2012 after an extensive destigmatization of the disorder in recent years and after so much of my experience and so many of the people concerned are now, what you might call, ancient history.
1.6 I certainly appreciate the medical and clinical work of: (a) several of the doctors I went to in my childhood, adolescence and adulthood, (b) the psychiatrists who have treated me since June of 1968, more than four decades ago, (c) many family members, friends, colleagues and associations, some known well and others hardly at all, who have helped me ride the waves when the disorder raised its head yet again along the way, the road of life, and, finally, (d) several writers like Virginia Woolf and Sylvia Plath who wrote about their BPD in addition to the many now in cyberspace who tell their stories.
2. CHILDHOOD AND ADOLESCENCE:BPD--Phase One-Part One: 1943-1963
2.1 As I refer to above, I had some experience of what may well have been BPD in childhood as far back as infancy and at the toddler stage, all of the pre-school years, 0-5, of early childhood development. My mother nearly died in the first month after my birth, the implications of which it is not my intention to go into here. If there are any significant implications of this birth process and/or events in my ante-natal and neo-natal phases of my life, I do not examine them here, however important they may be in the aetiology of this illness. Before the age of five there is evidence that my behaviour had some of the features of what is now called: (a) Attention-Deficit/Hyperactivity Disorder (ADHD), (b) Oppositional Defiant Disorder, or conduct disorder, but it is difficult to disentangle those features from those of BPD. I certainly exhibited episodes of hyperactivity-impulsivity or just impulsivity, but I cannot find any detailed information about these early years since everyone who knew me then is now dead, not contactable or not someone with whom I want to raise these issues.
2.1.1 Research on childhood/paediatric and adolescent/youth BPD is taking place in five major areas: clinical phenomenology, neuropsychology, neuroimaging, chronobiology, and genetic studies. See also: D. Healy cited in “New Research Findings,” internet blogspot, 22/8/08. But I do not deal with these areas in any depth. Functional neuroimaging is a promising tool for the investigation of the brain changes induced by psychotherapy. So far, only few studies have used it to assess the effects of CBT in OCD and phobia, and of CBT in depression.
2.1.2 For the most part, though, I did not manifest BPD symptoms like: elated mood, grandiose behaviours, decreased need for sleep, racing thoughts or hyper-sexuality. Children are developmentally incapable of many manifestations of BPD described in adults; for example, children do not "max" out credit cards or have four marriages, pre-puberal and early adolescent age equivalents of adult mania behaviours. Still, as David Healy emphasizes in his book Mania: A Short History of BPD, some doctors are now associating BPD as beginning in utero. Scientists are also making progress in finding the biological markers for behaviour associated with depression, anxiety, fear, anger and other symptoms of mental distress like obsessive-compulsive neurosis. Markers are essential to understanding the anatomical basis of mental disorders, diagnosing them objectively, and following their responses in daily life situations.
2.1.3 Perhaps in a later edition of this essay I will attempt a more detailed outline of what I recall from these years of early childhood, but my recollections are minimal and it is difficult, if not impossible, to excavate my memories from those years at this late stage of my life. In the mid-1990s, two highly influential psychiatrists at the Massachusetts General Hospital proposed that many children with ADHD really had BPD that could sometimes be diagnosed as early as infancy. They proposed that the manic episodes characteristic of BPD in adults might be manifested in children as irritability. That gave rise to a flood of diagnoses of juvenile BPD. Eventually this created something of a backlash, and the DSM-V(2013) now proposes partly to replace the diagnosis with a brand-new one, called “temper dysregulation disorder with dysphoria,” or TDD, which one psychiatrist calls “a new monster.” It is not my intention to comment further on these early years except for the occasional passing reference when it seems appropriate.
2.2.1 I would like to make a few remarks here on the biological, physiological, bases of BPD drawing on recent studies. The language I am drawing on here, as I say above in section 2.7.2 and in the footnote #14, is difficult. I advise readers to pass over this section if they find it too complex in terms of the medical terminology I am using. The neurobiological abnormalities associated with BPD, the abnormalities characterizing episodes of mood disturbance in BPD, help elucidate the pathogenesis, that is, the cause and development of BPD. There are immunological, neuroendocrinological, molecular, biological and neuroimaging abnormalities characteristic of BPD. I will summarize these abnormalities in the following section, 18.104.22.168 and 22.214.171.124.
2.2.2 Trait neurobiological abnormalities of BPD include heightened pro-inflammatory function and hypothalamic–pituitary–adrenal axis dysfunction. Dysfunction in the intracellular signal transduction pathway is indicated by elevated protein kinase-A activity and altered intracellular calcium signalling. Consistent neuroimaging abnormalities include the presence of ventricular enlargement and white matter abnormalities in patients with BPD. This may represent intermediate phenotypes of BPD. In addition, spectroscopy studies indicate reduced prefrontal cerebral N-acetylaspartate and phosphomonoester concentrations.
2.2.3 Functional neuroimaging studies of euthymic/normal patients implicate inherently impaired neural networks subserving emotional regulation, including anterior limbic, ventral and dorsal prefrontal regions. Despite heterogeneous samples and conflicting findings pervading the literature, there is accumulating evidence for the existence of neurobiological trait abnormalities in BPD at various scales of investigation. The pathogenesis of BPD will be better elucidated by future clinical research studies which will investigate larger and more homogenous samples. These studies will also employ a longitudinal design to dissect neurobiological abnormalities that are the underlying traits of BPD from those abnormalities related to episodes of mood exacerbation or pharmacological treatment.
2.3 I try to avoid the complex language found in the above two sections not only because readers rarely understand them but also this complex terminology is also well over my head. We all have limits in trying to understand things. This is true in the complex mental health field as well as in many other domains of modern life—no matter how hard we try. It is important for BPD sufferers to recognize the limits of their own rational faculty, the endowments conferred by birth and by socialization in their intellectual domain. Drugs used to treat affective disorders exert their effects largely through their actions on various neurotransmitter systems. Neurotransmitters are important regulators of neural development. Beyond this, beyond these last two sentences, readers do not need to know the complex physiological and neurobiological systems that underpin BPD.
2.4 Patients often view psychiatrists as wizards of neurotransmitters, who can choose just the right medication for whatever chemical imbalance is at play. This exaggerated conception of the capabilities has been encouraged by drug companies, by psychiatrists themselves, and by the patients’ understandable hopes for cures. Psychiatrists target discrete symptoms with treatments, and other drugs are piled on top to treat side effects.
2.5 Theseus used a ball of thread as he entered the labyrinth of the Minotaur. He fastened this thread to the door and let it trail behind him as he went in. After killing the Minotaur in the remotest section of the labyrinth, he managed to make his way out again by pulling himself along the thread. I used this legend to develop this technique of psychoanalysis, disclosing key events of early life as the origin or cause of the actual problems of a patient. It seems worthwhile to use the thread of Theseus to unmask the biological and genetic mechanism leading to an enhanced susceptibility to both environmental and mental maladaptation to our modern environment. Additionally, the principles of psychoanalysis may help unearth early traumas, fear and anxieties that lead to stress and comfort eating. The combination of repressed angst caused by early life trauma, chronic psychological stress, depressive features, paralyzing lack of physical activity and eating that is dissociated from actual caloric needs keeps large segments of our society from controlling their weight. Lasting solutions to obesity must address the interface of reality, repressed fears and unconscious conflicts that determine the specific pathways of the search for pleasure. Testing of these hypotheses would be a most appropriate birthday present for me.
3. Mania, mild mania or hypomania are all symptoms of BPDI and they each have their origins in extra-neurotransmitter brain cells. These cells, due to neurochemical over-stimulation, begin to fire all at once for a sustained duration of time. This is a very disquieting symptom involving rapid and profuse synaptic activity that is quite tiring and can interfere with concentration and focus. This, in turn, can cause rapid, erratic thought patterns and ideas. People with mania and/or hypomania often remain awake for days without normal sleeping intervals. The longest period of time I was awake was two or, perhaps, three days in May 1968. The experience became progressively more painful after 24 hours of no sleep. I had no mood-stabilizing medication at the time to slow the synaptic activity down. I do not recall any symptoms of mania or hypomania in my late childhood or adolescent life. There were some periods of hypomania in the years 1963 to 1966 but not as intense as what I experienced in May 1968. If I had any mania in early childhood, I have no memory of such experience.
4. The boundaries between normality and abnormality, health and pathology are often blurred and indistinct. In addition these boundaries shift from person to person, doctor to doctor and decade to decade making one’s understanding of the problem more complex and more difficult to deal with on the one hand and, paradoxically, more simple and easy to deal with on the other. Within those five years, 1963 to 1967 though, the permutations and combinations of emotional variation were enough to bring tears to the eyes of a brass monkey, as my mother used to say. Looking back in retrospect at those last years of my formal education, I see it as a miracle that I ever got my BA degree and my teaching qualifications labouring under such emotional chaos from time to time and often, week after continuous week in a variegated pattern. There were periods, though, in those several years of my post-secondary school education in which I could function normally and my moods seemed to level out so to speak.
B. HYPERSEXUALITY and RISK-TAKING
1. Through middle and late childhood, say, the age of 6 to 12(1950-1956) into the puberty cusp of 12/13 in 1956/7, I did exhibit personality features, behaviours or symptoms that had features of BPD, at least to a limited degree, or so it could be argued if not proved: (a) a lack of control of my emotions, impetuosity, lack of emotional restraint, hypersexuality and (b) a far too intense activity threshold what is now called hyperactivity or hypomania. As I write about this, I feel a tendency to overstate my case.
2. It should be emphasized in this context, though, that hypomania is now considered by many in popular culture as a pleasantly grandiose, somewhat overactive feeling and behaviour orientation, but is not considered as evidence of a disorder, of a maniacal posture or of mania in psychiatric terms. The wider culture in the West is increasingly characterized by the loosening of the boundaries of restraint and millions who, in generations gone before controlled their instinctual and impulsive, their spontaneous and natural, urges are now giving way to them. My more impulsive BPD nature could now be considered normative in some ways and certainly not a sign of a disorder: such are the changes in societal values and attitudes, behaviour and norms and their effect on the way a person like myself might come to view the manifestations of their BPD both now and earlier in my life.(for a useful discussion of impulsivity go to:http://en.wikipedia.org/wiki/Impulsivity
3. The aetiology and earlier manifestations of BPD in ante-natal, post-natal, childhood and adolescent periods I have yet to describe and I do not deal with them in this essay expect en passant. BPD occurs in childbearing women and the onset of BPD symptoms may occur at the ante-natal stage, in utero, during pregnancy or after the birth in the neo-natal stage of childhood as it is called. This may have been the case with my mother; it may have been another episode of BPD, further episodes to the ones she had had prior to her pregnancy in 1943-4. Her symptoms after birth, in 1944, may have been similar in some ways to those that occurred with her BPD earlier in her life. The book The Bipolar Child by D & J. Papolos(Random House, NY, 2000) brings out the extent of the current mania of interest in BPD in children.
4. I recall at the age of 12/13, at the onset of puberty, exhibiting inappropriate or precocious sexual behaviour. The particular manifestation of this inappropriate behaviour involved an episode of groping and an attempt to kiss a girl who did not want to be kissed. I backed off quickly when I saw she was uncomfortable, but the incident is imprinted on my memory to this day. In addition, in my years of late childhood(8 to 12) I was involved in: (a) stealing items from shops and selling them; (b) one breaking and entering experience in an old and uninhabited house in which the charge was dropped and (c) an excessive intensity expressed in sport and other activities. Adolescent BPD and adolescence generally presented me with an accentuation of puberty and teen-turbulence caused by hormonal shifts. The sexual manifestation of this shift was kept in control throughout my teens perhaps through my absorption in sport, school, employment and various leisure activities. Society value shifts in the 1960s accentuated these tensions and behavioural problems even more, or so it seems to me, as I look back from the perspective of half a century. My mother’s understanding, commitment, perseverance and patience is now in my memory bank and in the greater appreciation that I now have for my mother than ever before. Neither she nor I nor my doctors knew that I had BPD since it was not diagnosed until I was 35 in 1980.
4.1 I am now going to make a few more comments about the sexual aspect of BPD as it has been manifested in my life. I have never had a problem with compulsive sexual behavior defined as “spending inordinate amounts of time in sexual-related activity to the point that a person neglects important social, occupational or recreational activities in favour of sexual behavior." My personal sexuality has been a subject both I and my psychiatrists have avoided since I first met with a psychiatrist in the summer of 1968—over 40 years ago. My sexual activity has never been a subject which sufficiently concerned me to bring it up when talking about medications, sleeping problems and other issues associated with my BPD experience. The literature on BPD and sexuality points to the complaint of some patients that doctors rarely want to hear about their sexual problems. I have rarely wanted to talk about my psycho-sexual problems with a psychiatrist, rather, I have preferred to work them out in the context of my marital relationship. Since beginning to take a medication for my prostate problem in March 2013, my libido, the intensity of my sexual urges has declined markedly to a position of near, of relative non-existence.
4.2 The term addiction is imprecise and laden with value judgments, but it captures the essence of a very real phenomenon. Psychologists and psychiatrists formally define substance dependence as a disorder characterized by criteria that include: (a) spending a great deal of time using the substance; (b) using it more often than one intends; (c) thinking about reducing use or making repeated unsuccessful efforts to reduce use; (d) giving up important social, family or occupational activities to use it; and (e) reporting withdrawal symptoms when one stops using it.
All these criteria can apply to people who are addicted to sex or watch a lot of television. That does not mean that sex or watching television, per se, are a form of addiction or even problematic. Both sex and television can teach and amuse; they can bring us to aesthetic and sensory heights; they can provide much needed, even if socialized, distraction and escape. The difficulty arises, the addiction exists when people: (a) strongly sense that they ought not to engage in the activity as much as they do and (b) find themselves strangely unable to reduce the activity(i.e. participating/ viewing. Some knowledge of how TV and/or sex exerts the pull that they do may help active participants/viewers gain better control over their lives.
4.3 Compulsive sexual behavior--sometimes called hypersexuality, nymphomania or sexual addiction--involves a normally enjoyable sexual experience that becomes an obsession. Such an obsession is listed as one of the primary symptoms of BPD in the DSM-IV (Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition). Many psychiatrists refer to the psycho-sexual domain of interpersonal life almost as an afterthought—if at all—when forming a diagnosis. Though hypersexuality may present itself as just one aspect in a constellation of problems, it is often the most destructive and challenging part of BPD.
My obsession with sexuality and the erotic, if indeed I have had an obsession technically, has been kept, for the most part, under control as I look back at perhaps 60 years of its manifestation in my life. This is not to say that the psycho-sexual aspect of my life has not been a problem. Pleasure-seeking behavior and instinctual elements dictate fundamental aspects of our daily life however difficult this may be to accept. Orgasm releases endorphins, the basis of the feeling of pleasure; sexual activity improves cardiovascular function. As I say above, since beginning to take a medication for my prostate problem in March 2013, my libido, the intensity of my sexual urges has declined markedly to a position of near, of relative non-existence.
4.4 Compulsive sexual activity troubles families of young children suffering from this symptom known as child and juvenile hypersexuality; it ruins marriages and can generate life-threatening health problems. One study found that hypersexuality appears to play a larger role in women’s lives than in men’s. Women are more sexually provocative, seductive and tend to take more risks than their male counterparts. Impulsive new relationships and impulsive sex frequently involves risk-taking behavior to both the self and others. Sexual intensity is very much increased during hypomania. It is often seen as the most important and enjoyable part of BPD. Another study reported that flirtatious and sexual behavior was a common symptom in 30 per cent of young, prepubescent children with hypomania and in 60 per cent of the adolescents. Their vulnerability is attributable to a “disinhibition” of social restraints during hypomanic periods. In other words, they are unable to act with an eye toward future consequences of their behavior. Sex is used for soothing the anxiety of BPD. Finding the right combination of medications to control hypomania is an essential step toward keeping hypersexuality from becoming destructive.
I mention all of the above as a backdrop to the problem I have had with the intensity of sexual desire in my life. (See: “Compulsive Sexual Addiction,” Mayo Foundation for Medical Education and Research: 1998-2010, 18 September 2009 at About.com for an expansion on some of the information I have drawn-on here)
4.5 The desires associated with my libido, my id, my libidinal urges continued, but at a very low level of intensity; they virtually ceased, as I have mentioned above several times. This happened when I went on my most recent cocktail of meds: seroquel and effexor. I can avoid the stimulation if I keep entirely away from the print and electronic media that brings in these visual stimulants by the truckload. There are new difficulties in our society, in developed societies, resulting from the demands of a sexual morality utterly at variance with the massive sexual propaganda and its enhanced and erotic stimulation to which all consumer societies are subject. It is not my purpose to focus on this aspect of my life’s behavioural trajectory here, but I would like to make a general comment on the line between negative behaviours that genuinely derive from my BPD and those behaviours that are simply convenient to blame on BPD. I do that later in this account.
4.5 As I say elsewhere in this statement, it is not my intention to dwell on the sexual side of my life since, like my job, my family, my relationships and my religion, I regard them all as tangential, however significant and importnat in many ways, to the focus on the BPD itself. I cannot, though, eliminate reference to them on occasion since they are, in varying degrees, relevant to this narrative. Bahá'í teachings discourage pre-marital and extra-marital sex as well as masturbation and homosexuality. These same teachings go on to say that it is a lifelong test to learn to control one’s animal nature, one’s lower self and not be a slave to what are in many ways natural urges. Many of life’s tests and temptations, impulses and instincts require caution and vigilance, self-control and struggle so as not to let the sexual domain and their various activities claim too great a share of one’s attention. For many, certainly for me, the sexual domain has provided one of life’s major areas of personal struggle. This has been a battle for me nearly as far back as I can remember, indeed, even back to my middle childhood, the years from 6 to 8 years old! The internet is now providing the personal accounts of the battles that individuals have with their human instincts with: anger and jealousy, with the libido and the great cross-section of human emotions and tendencies. My account is but one.
4.6 Impulsiveness and risk-taking in general and in relation to sexual desire in particular has been a problem for me all my life. Keeping control of my sexual inclinations has been a battle. I hope that the above sections and several below help to place my battle in a helpful, and more importantly, an accurate context that is of some value to others. As I point out above I have never had a problem with compulsive sexual behavior if I define it, using the Mayo clinic’s definition cited above, “as spending inordinate amounts of time in sexual-related activity to the point that a person neglects important social, occupational or recreational activities in favour of sexual behavior.” I have been far from free, though, of compulsive sexual activity. I can point to examples of it in my life beginning with the one cited above, the two episodes of pre-marital sex in 1967, and again in 1974/5, up to and including my present need to exercise self-control even in the evening of my life now at the age of nearly 70
Compared to many of the 1000s now of stories of the lack of control, the loosening of former inhibitions, the whole freeing-up of libidinous urges in the wider society in the last century, my story is a mild one. Some, I'm sure, would consider my story to be a normal battle of self-control that males have had for millennia, and still have. I could use such a view as part of a philosophy or technique for neutralizing any sense of remorse or regret. Such a view also helps me to accept a number of personal inadequacies. Inadequacies are part of the very fiber of human life. Everyone has some degree of deviance in their life. People's self-image, and their aims in life, are usually too high or too low as they go about justifying their inability to achieve the high standard of chastity, morality and behaviour that traditional religion on the one hand and aspects of a modern sexual-behavioural ethic encourage on the other.
5. There are different aspects of impulsive behavior and various mechanisms involved in individual predisposition to impulsivity, risk-taking and their related psychopathologies. They are only partly understood by the medical profession in general and psychiatry in particular. My vulnerability to impulsivity, it seems to me, is associated with or attributable to, a certain disinhibition of restraint. This disinhibition, this impulsivity, is due to a periodic craving for the high associated with sexual release, what some writers call: the spasm and the consequent release of endorphins, as I mentioned above. Impulsive new relationships and impulsive sex have frequently involved risk-taking behavior in my life with negative consequences, consequences that have had a significant role in determining my life’s trajectory. Of course, the word 'frequently' is a subjective term and what is frequent for one is relative abstinence for another. I often have thought, as I have come to know more and more about the habits and behaviour of my fellow-man, that the extremes of my impulsivity are, compared to many of my fellow human beings,hardly impulsive at all. The range of human behaviour on virtually any index of activity is immense and the print and electronic media are increasingly providing information on the staggering spectrum of this behaviour.
This tendency to the impulsive, though, is also related to anger and control issues which I discuss elsewhere in this account. This tendency may be due to, so some studies in molecular psychiatry indicate, cellular factors which play a prominent role in the brain control of stress, the most important vulnerability factor in mood disorders, causing behavioural, cognitive, and neuroanatomical problems.
6. Celibacy outside of marriage and abstaining from sexual activity before marriage is probably a greater test for almost everyone who aims to live up to that standard for religious, social or simply personal moral reasons. But tests are one of the main aspects of what human life is all about. A person's sexual orientation, preferences and inclinations are part and parcel of their life-narrative. But, if life is not to be anarchy and the giving way to impulse that produces such anarchy---in many areas other than the sexual---each individual must find the necessary control mechanisms. Again, though, anarchy for one is not anarchy for another.
Most of my life has not been anarchy; I have also had a directed path with a purpose. If I did not have the path I chose in my late teens, a path with a religious focus and standards of abstention from sexual activity outside and before my marriage, my life would have been much more than the anarchous mix that it has been. My religion, the Baha’i Faith, has been indispensable here in this critical area of human behaviour which, in the end, determines so much that constitutes the nature and detail of one’s journey in life. Those wanting to read my five volume memoirs, my 2600 page autobiography, can follow-up on this topic of risk-taking, a behaviour that has played a significant part in my life.
7. Risk-taking behavior in general and impulsivity in relationships in particular are problems that people with BPD have to deal with all their lives and some BPD sufferers---in addition to millions who do not have mental health issues---deal with these problems more than others. Since it is neither possible nor desirable to go into chapter-and-verse on the literally thousands of social situations in my life where this risk-taking behaviour has manifested itself, some to my advantage and some to my disadvantage, some associated with sex, some with anger and still others with many other aspects of behaviour and related emotions, I will try and make a brief overall-summary statement here.
7.1 Looking back over seven decades of memory, the years 1948 to 2014, from early childhood to puberty and on to the present, I can site several categories of risk-taking activity in relationships and situations that significantly affected my life-trajectory, my life-narrative. I jumped too quickly into relationships with the opposite sex and this was true with respect to both my marriages; I changed jobs with a frequency which described on a CV or resume is both colourful and impressive on the one hand but an indication of instability and risk-taking on the other; I was often insensitive to the reactions of others causing others to be embarrassed and negative feedback to come my way; I was a highly successful student over an 18 year period and a highly successful teacher over a 32 year period. But I know that, of the thousands of students I had during these years, that there were many who had a negative reaction to both my style of teaching and my personality in general. This is very common for all teachers---with or without BPD. Aspects of my behaviour in this summary statement can and do apply to millions of non-BPD sufferers. I am also aware that I should not/cannot blame all of my negative behaviour on BPD or, indeed, on socialization. But risk-taking behaviour and the need for high levels of stimulation on many levels are two syndromes that need to be given a mention in this lengthy narrative.
8. Although the symptoms of BPD that I exhibited in childhood and adolescence are largely not described here, I could go back to my birth and, indeed, to conception itself and my in utero, ante-natal, life as I intimated above, for possible origins and manifestations of BPD. The relationship with my mother, my disinhibitions or lack of emotional control in relation to sex and anger, my OCD tendencies could all be described, could be gone into in more detail and I do mention my OCD tendencies again in this statement. I have also written about this subject briefly in my memoirs. I do not attempt in this now quite lengthy account to describe this period of my life in more detail, nor do I discuss my death wish or my suicidal tendencies during the many years of BPD beginning in the last months of my adolescent years, in October of 1963, during which I experienced the death wish for the first time due to the intensity of my first depression. Before the official diagnosis of manic-depression in 1980 my death wish was only associated with a few periods of intense D. I do not allude to this death wish except en passant and, then, only in the most cursory fashion.
9. Keeping sexual stimuli under control has always been a struggle for me to regulate so that thoughts of a sexual nature did not claim too great a share of my attention. With the years, the more than half a century since my puberty in 1956/7, the opportunities to go over the top and to let physical/sexual temptations assume too great an importance have been a test. As I emphasized above, though, since beginning to take a medication for my prostate problem my libidinous urges had just about disappeared. My mother took a liberal and understanding attitude to my sexual frustrations and this liberal attitude became part of my own attitude to the battles I had to face in this domain of life’s tests. It would, though, be incorrect to say that I have been permissive sexually; indeed, compared to some who have let sex dominate their lives, I have exhibited and achieved a remarkable self-control.
10. It was not until much later in life, though, that I began to see my aberrant childhood behaviours and my sexual and other aberrations (stealing, breaking and entering, excessive emotional and behavioural intensities) at puberty and then in adolescence as possibly having a link with the BPD which was eventually diagnosed when I was 35 years old. It was not until I was 19 in 1963 that any characteristics of BPD, in retrospect, became quite clearly apparent, pathological and, as I say in retrospect, could be called part of BPD and given that medical diagnosis. At the time, though, in 1963 no doctor would have given, or at least gave me, that diagnosis. Looking back to the age of 19 in October of 1963, I recall feeling a depression so deep it was like ‘a sickness unto death,’ a term used by the founder of Christian existentialism Soren Kierkegaard. He called this a despair at willing to be oneself. I felt despair but not in the sense that Kierkegaard used the term.
11. As I say elsewhere in this statement, it is not my intention to dwell on my sexual life since, like my job, my family, my relationships and my religion, I regard them all as tangential to the focus on the BPD itself but I cannot eliminate reference to them on occasion since they are in varying degrees relevant to this narrative.
1. In this lengthy account I also do not allude to my periods of grief on: the death of my mother, the separation from my first wife and several experiences in the Bahá'í communities where I have lived over the last fifty years. The grief and anxieties, the general tests and difficulties, that have been part of my life are not part of this story, a story which focuses on BPD and my mental health and not other aspects of my life associated as many of them are with my disability. Susan Inman’s book After Her Brain Broke–Helping My Daughter Recover Her Sanity, Bridgeross Communications, 2010--reminded me of the fierce emotions I had against my mother when hospitalized in 1968 but my treatment, unlike that daughter’s, only took months and not years and I do not document/describe that treatment here.
2. I don’t think I will ever know enough about my early childhood, that is the years before the age of 5, to assess whether my short periods of behavioural disorientation were examples of: (a) a mild-mania, or hypomania as it is called, (b) BPD, (c) an affective disorder of some kind like schizo-affective disorder or (d) just a mild form of OCD. The very validity of the diagnosis of BPD in paediatrics and in adolescent studies is now in question. It is becoming, some say, a simple catchall applied to explosive and aggressive children and other kinds of idiosyncratic behaviour. State of the art brain imaging is now studying individual differences in brain structure and functioning and the genetic predisposition is a focus in this area.
3. Others say that many behavioural abnormalities are finally being recognized as part of a single disorder or recognized as existing on a single continuum. There is now a growing debate over the accuracy of many diagnostic classifications. This might seem to be purely academic except for the effect it has on treatment protocols. Estimates are that on average it takes 7 1/2 years before a BPD diagnosis is made. Improperly diagnosed BPD and delayed diagnosis are facts that BPD sufferers and those with D should be aware of especially if they are in their teens and twenties.
4. I had never experienced such an intensely low mood. The word despair is a more appropriate one. It was a sadness so pathological that it made me feel suicidal, like death not warmed over, as one could say colloquially. It does not surprise me that the third leading cause of death among people aged 15-24 is, in fact, BPD. I could very easily have been one of those dead souls especially back in the early 1960s when there was such little understanding of this illness.
5. The psychiatric medications which those who are mentally-ill receive increase the likelihood of weight gain, diabetes and cardiovascular disease. Mental health professionals have discovered that physical disability and early death add to the burden of mental illness for those affected and their families. The burden does not stop there since the health care system, already groaning from the weight of the consequences of various habit disorders, shoulders the extraordinary health costs of this high need population.
6. One can read about this intensity of depression in many fields of literature and of mental health, although the word ‘depression’ does not seem to have entered the lexicon in the West until about 1900. The desire to die at that time in 1963 was overwhelming. But I did not talk about it to anyone except perhaps my mother, although I honestly cannot now recall the extent of my openness with her. She knew I was depressed but neither she nor I really understood the dynamics or the intensity of the depression. I think it was assumed that I would grow out of it. And I did. By December 1963 the depression began to lift. I wrote my December exams at university and I continued with my first year studies in liberal arts. By May 1964 a mild euphoric state had arrived. I worked for the Bell Telephone Co. in May-June 1964 and lost my job due to being too talkative, laughing inappropriately and being, in summary, too-high as I look back as best I can from a perspective of 45 years after the event.
7. These behaviours, this depression and this euphoria, at the age of 19 or any of my behaviour before that last year of my teenage life(1963-1964), did not result in my receiving any medical attention. The first formal diagnosis of my illness was labelled a schizo-affective disorder(SAD) in 1968. SAD is a sort of hybrid condition that exists in between BPD and schizophrenia, although this distinction may be somewhat artificial. It may be inappropriate to have a discrete cut between the two disorders when both may represent part of a spectrum and symptoms of both disorders were part of my experience during the last half of 1968. This situation involved the possibility of a serious risk of harm to myself or others and required in July 1968 what is termed involuntary commitment to hospital. This case involved a severe BPD episode with dangerous-violent and aggressive behaviour as well as depressive episodes in August 1968 with suicidal ideation.
In retrospect, I now see the autumn of 1968 as the first formal diagnosis of my BPD, although I was not to personally receive/read that diagnosis until 1970 when I visited a psychiatrist in Kingston Ontario some two years after I was released from the large psychiatric hospital outside Toronto in the town of Whitby. This account could give a detailed story of the five months of institutionalized care: the ECTs, the medications, the occupational therapy, etc. At the age of 19 during the first manifestations of intense depression, though, I was given lots of advice from religious to common-sensical: diet, exercise, prayer, vitamins, interesting leisure distractions and interests like horse-riding, watching TV, music, et cetera. This sort of advice, or at least specific areas of advice like diet and exercise, continued to be given to me throughout my life. Sometimes I followed the advice and it was to my advantage and sometimes it was not to my advantage.
1. After several months to several years, 1963 to 1968, the emotional aberrations disappeared or could be said to be sub-threshold at least for a time. Looking back from the time I am revising this statement just before my 68th birthday, I now see these years from 1963 to 1968 as evidence of BPDI. My experience over the years from 1969 to 1977 ws clearly sub-threshold. but from December 1977 to June 1980 I had another full-blown hypomanic attack, the 2nd in my life. This 30 month period, which ended in my being stabilized on lithium, had a different emotional story, a different set of ups-and-downs, than the story of the 60 month period 1963-68. Each period exhibited quite separate and distinct tendencies and patterns. I discuss the ten years, 1969 to 1978, of relative normality, briefly below in this now lengthy account.
2. University or college in some ways radically increased my ability to panic. In the existential sense, college offered an expansion of life’s possibilities, but in the flesh-and-bone sense, it narrowed them. College threw me into cramped living quarters with people I had never met but whom I had no choice not only to endure but also to shower with, brush my teeth alongside and defecate not three feet from. After close to two decades of cohabiting exclusively with parents and dealing for the most part with my friends, this shift caused a fair amount of psychological friction. This is particularly true because it is something of an imperative to present oneself as poised and confident, even if one is in fact bilious, angst-ridden and actively decompensating. After four months with such a situation living with three other boys, I could not endure it and went back home in a state of mild depression.
By my 3rd or 4th week at university, round-the-clock anxiety and the addled half-sleep that comes with it had eaten so thoroughly into my defenses that a deep depression has set in, a depression that I hid from everyone as best I could. At home when I was anxious I could count on two places in which I was free to freak out as extravagantly as I wanted: my bedroom and my bathroom. But in the halls of academia it was almost impossible to find the solitude a real anxiety attack demands. Kierkegaard once claimed that anxiety is our “best teacher.” He was correct, to a point. By underscoring the tensions in our minds and goading us to action, anxiety does indeed teach us. But as the chronic sufferer discovers, and I was from time to time down the long decades, the best teacher is not anxiety itself but the ceaseless, lifelong effort to think clearly and act well in spite of it. In the case of dealing with BPD that thinking needs to be sharply focussed on getting the best cure to one's emotional dilemma.
1. One aspect of the five months in that immense psychiatric facility in Whitby Ontario in 1968 that I would like to comment on is the short visits with my psychiatrists during “their rounds.” It was like a visit with God and it was always impossible to really say much. I remember spending much of my time trying to get appointments for long sessions. I've had experience, since then and with psychiatrists elsewhere, in hospital psychiatric clinics/wards and the private practice facilities of psychiatrists who only see patients for short appointments usually of an hour or less. But in Whitby the sessions were usually for a minute or two at best. I never felt like the doctors or staff got to really know me; therefore, I didn't trust their judgment. I now see my psychiatrist, more than 40 years later, for short medication-management-type appointments. and a discussion of related issues, usually for periods of time from 20 minutes to an hour. It's not expensive even when I require more frequent visits due to the Australian health care system. I saw the same psychiatrist, a Dr. Ratcliffe, from 2001 to 2012. In April 2012 I began to see a new psychiatrist.
2. I want to make a few remarks here about deinstitutionalisation(see Wikipedia for an excellent overview of this subject) a process of replacing long-stay psychiatric hospitals with less isolated community mental health services for those diagnosed with mental disorder or developmental disability. I mention this because after 1968 I was never institutionalized again, although I did have one month in the psychiatric wing of a general hospital in 1980. Deinstitutionalisation can have two definitions. The first definition focuses on reducing the population size of mental institutions. This can be accomplished by releasing individuals from institutions, shortening the length of stays, and reducing both admissions and readmission. The second definition refers to removing institutional processes from mental hospitals that may create dependency, hopelessness, learned helplessness, and other maladaptive behaviours.
In many cases, the mass deinstitutionalisation of the mentally ill in the Western world from the 1960s onwards has translated into policies of "community release". Individuals who previously would have been in mental institutions are no longer supervised by health care workers. Many are left to their own devices in regards to maintaining their personal medication regimens. My experience of BPD after 1968 was in the context of this massive deinstitutionalization and working out my own treatment with the help of professionals of my choice.
3. In BPD episodes of depression occur alternately with manic or hypomanic episodes during which the mood becomes euphoric and labile, the capacity for deriving pleasure increases, behaviours aimed at deriving pleasure increase, energy and psychomotor activity, libido and self-esteem become elevated. Thus, the same domains are implicated in depression and mania, although the characteristic disturbance in emotional behavior within these syndromes appears opposite with respect to emotional valance. Thus the clinical manifestations of mood disorders would appear to implicate the cognitive, emotional and visceral functions.
4.2 Although the pharmaceuticalization of the post WW2 modern world had begun in earnest by the 1960s, it had not taken off that earnestly as medical and psychiatric applications to the behaviours and symptoms that I exhibited back then. The most successful treatment I received, though, was pharmaco-therapy and this continued to be the case for the next forty years.
4.3 Sometimes I returned to incapacitating symptoms; sometimes I simply exhibited impetuosity or lack of emotional restraint; at other times my moods were expansive, euphoric, hypomanic. Perhaps, as some of the BPD literature suggests, I was affected sporadically by the extremes of a psychomotor retardation and agitation which is characteristic of this illness. Combinatory, lateral, uneven, unusually sensitized thinking, particular sensitivity to energy levels and a state of increased awareness were all part of my experience in these five years. It is difficult to describe these five years in retrospect given the often bizarre and chaotic nature of the experience. Given, too, a coextensive-coexisting general context of normality and the inevitable routine and quotidian nature of life that went on inspite of everything, inspite of the emotional problems-- makes the description of the details of these experiences, after forty years, difficult.
F. BACK ON THE OUTSIDE
1. In the years December 1968 to December 1977 the symptoms of my BPD were sub-threshold, non-existent or not as extreme. I coped and my behaviour did not require or even suggest medical intervention. During these years I experienced my first successes professionally and my energy levels seemed to increase slowly from 1969 to 1972 to pursue my jobs in the teaching world and in the Baha’i communities. In some ways this period 1972 to 1978 was a manic period with a tremendous outpouring of activity. Then in December 1977 it all crashed down into depression and the kinds of symptoms I had had in 1967 that took me into four psychiatric hospitals.
2. The 30 month period from 12/'77 to 5/'80, as I say above, was my next major episode which contained an episode of mania in May 1980. It also contained periods of depression exaccerbated by the stelazine treatment. That first episode which included mania had lasted off-and-on from October 1963 to December 1968, a little more than five years. This second major episodic-period only lasted half the length of time that the first had lasted, but this was only due to the lithium treatment that put an end to my symptoms quick-smart. Without the lithium which I began to take in the first week of May 1980—who knows what the BPD symptoms would have been?
3. The sixth leading cause of disability and lost years of healthy life for people aged 15-44 years in the developed world is BPD. I lost only fifteen months of employment due to hospitalization. They were in the periods: 6/68 to 12/68 and 5/80 to 12/80, although I experienced much more time of varying degrees of decreased functioning in my various places of work.
4. Taking an early retirement at the age of 55 and going on a disability support pension at 57 until I was 65 could be said to add another ten years onto that one year of unemployment due to BPD. If I wanted to make a fully comprehensive statement of the effects of BPD on the total years of my unemployment, that would come to eleven years.
5. In early December 1968 I had left the mental hospital in Whitby Ontario on a mild sedative. I think it was called valergan; but I’m not sure; I have forgotten its name after some 45 years. In the nine years from 1968 to 1977 I tried: exercise, diet, giving up smoking, sex, radiesthetics and hair analysis, jogging and play therapy, among a range of treatments to prevent or alleviate any incipient symptoms reoccurring.
A. FROM MY FIRST EPISODE OF BPD IN 1963 TO THE END OF MY FIRST INSTITUTIONALIZED CARE IN 1968:
1. The episode in 1963 continued in a complex series of forms up to and including 1968, as I have outlined above. This episode was not diagnosed as either MD or BPD in those years. This episode, part of my first phase of BPD as I see it in retrospect, did not receive any professional psychiatric diagnosis until June of 1968. From June 1968 to November of that year I received institutional care in: the Frobisher Bay, now Iqaluit, General Hospital; the Verdun Psychiatric Hospital in Montreal; the Scarborough General Hospital in a Toronto suburb and the Whitby Psychiatric Hospital about a 30 minute drive from Toronto. The story of those years from 1963 to 1968 and those four psychiatric units and hospitals were my years of university study and the first year of full employment. The story of these years is long, stony and tortuous and I will not write the account of these five years in any more detail since no medical diagnosis was given to me in writing or verbally. In 1970, while living in Picton, I attended an interview with a psychiatrist in Kingston Ontario who informed me that the diagnosis of my condition which he had received by letter from the Whitby Psychiatric Hospital was: that I had had “a mild schizo-affective disorder.” But I do not recall receiving any statement while in Whitby.
2. While in these four psychiatric facilities I received many treatments. It is not my intention to go into detail regarding these treatments after the passing now of more than 40 years. I remember, though, being on a first generation antipsychotic medication: chlorpromazine(largactyl), a phenothiazine, for some time and ten years later, in 1978, I was prescribed another phenothiazine alled trifluoperazine (stelazine). In May of 1980 I went on a mood stabilizer lithium(also called an anti-mania drug) and in May 2007 lithium was replaced by another mood stabilizer, sodium valproate (epilim or valpro: NAVAL). Generally, throughout this statement, I try not to get into fine detail in relation to the individual drugs I have taken over the years, their various names, brands, quantities, types, the associated chemistry and the extensive literature now available on each of them on the internet.
3. I did receive a great deal of advice and types of treatment: (a) more exercise and prayer, (b) a better diet and sex, (c) drug therapy, 8 ECTs and other types of therapy from talk to art and manual activities. I do write of these six months in these several facilities in my memoirs in much more detail than I do here. To write of it here would result in prolixity.
4. Mark Twain once said that if he wrote all the things about his life it would (a) bore people to death and (b) would be enough to build a mountain. This is also true of this account and I try, as far as possible, to be succinct.
5. In June or July of 1968, though, one member of a battery of doctors, psychologists, psychiatrists and other care givers who were then providing my treatment program in Montreal Canada at the Verdun Psychiatric Hospital took a personal interest in my case. He was the first attending psychiatrist in my life about whom I remember anything at all. He was a Baha’i, a religion that had its origins in Iran in 1844; he was one of perhaps 4000 Baha’is in Canada at the time and perhaps its only psychiatrist. He was himself at the outset of his own career in psychiatry. I had been serendipitously institutionalized here after the onset in late May of 1968 of an episode of BPD which was given no name at the time, although colloquially I recall it being said I had become “bushed” or, as they say in Australia, “gone tropo.”
6. I had been working with the Inuit at the time in Canada’s high Arctic as a grade three classroom teacher. Looking back it seems highly fortuitous that this first institutionalized care that I received was, in part, from a psychiatrist who shared the same belief system as I did, the Baha’i Faith. I remember him taking me out into the community to meet some of the Montreal Baha’is and their friends. Such an exercise, I assume, he felt was a normalizing experience.
7. I appreciate, as I say above, the interest, care and assistance shown by a long series of individuals, particularly the relatives and friends in my life, who over the years and as far back as 1963. In that year what I now see as the first clear episode of MD or BPD began to manifest itself. The professional work of those doctors and the personal assistance of those family members and friends has been invaluable and I want readers to appreciate the primacy I give to the work of these special people for their help and support, their saving me from what in any previous age and time period would have been a horrific, virtually end-of-normal-life experience. I want, too, to particularly emphasise the personal care-givers in my consanguineal and affinal families, that is my family of birth and marriage, especially my mother, my first wife and my second wife. These three people were there to help inspite of the difficulties they experienced as a result of their care-giving attitudes and supporting activities. They were absolutely critical and significant others in that wider social context of family, friends and doctors over the years.
8. I sojourned in these first five years, in that first episode from 1963 to 1968, in a public and private world that was new to me, at least up to September 1968 I felt a certain normality that was rarely in question. From time to time and beginning arguably on 29 May 1968 I sojourned in a place no less strange to me than if I had been among an exotic jungle tribe in Africa. It is the duty of some cultural anthropologists to report on their exotic travels and field trips, whether among the indigenous peoples of this earth’s Antipodes or to equally remote recesses of human experience among other culturally diverse groups. The account I write here, though, is not so much anthropological; it does not give an emphasis to the eccentricities, the absurd and the bizarre which SAD, P, D, MD and BPD accounts often do; it does not attempt to make a comprehensive statement of my experience. I leave this for my autobiography/memoirs and readers can find the story buried there in occasional references among the 2600 pages much of which is now on the internet in different forms, short and long, paragraphs here and pages there.
B. SOME GENERAL COMMENTS ON THIS FIVE YEAR PERIOD(1963-1968)
1. As I say above, I came insensibly over several decades--and then only at some distant and abstract level--to associate the extremes of my BPD somewhat with the role of shamans among tribal, third world and animistic communities, people who relate their myths and their meanings by means of emotionally laden quasi-ecstatic visions. On the personal level, I discovered in myself unexpected patience, humility and hope. I learned to treat life as the most precious of gifts, infinitely vulnerable and precarious, to be infinitely prized and cherished. I had not become a shaman or a saint, though; I still suffered; I was still impatient; I did not always appreciate life; I still got depressed. I had journeyed with my body, although I don’t think with my soul, into an underworld and come back, more times than I care to tell and certainly more times than I tell of here. But I have survived and lived to tell the story. This is not always the case for people with SAD, D, MD or BPD.
2. Mine was a drama which can be described from several perspectives: a psychotic episode, a psycho-neurological, a psycho-pharmacological, a schizo-affective problem. In 1968 the first psychiatric diagnosis, some five years after the beginning of my first episode, resulted in my suffering, my illness, having at last a label, a medical diagnosis, a name attached to it: a mild-schizo-affective disorder, for which I use the acronym SAD in what has become a somewhat long account.
3. This mild SAD, the diagnosis I received in late 1968, I could narrate as a drama in religious or spiritual terms, and describe it as a purgatorial dark night. The experience was both a pain in the neck and a gift of the gods, I can now say in retrospect as I write this account more than 40 years later. Whatever it was and however I interpret its meaning in my life, it has unquestionably been a key part of my life. But it was not all my life. I do not define all my life in terms of this disorder. This account is of that part, that small but important part. It is the centre of my chaos narrative as some students of autobiography call such accounts.
4. Stories in life, all peoples’ stories, have a chaotic and confusing aspect at a certain level of analysis, a problematique as some social scientists call the story of one’s life, especially in the absence of some kind of narrative order, an order imposed or simply narrated in a simple fashion. Even with some order, imposed or not imposed on one’s experience, one’s life is still a problematique. I tell my own story here as briefly as possible to help establish, for me, some of that sense of order. I tell of these events, as a storyteller might, of my experience of life, but it is a story not packaged for the media. It has been packaged, though, in several written forms for the internet at some 100 sites from 2004 to 2012. I try as I get older to use soft words and hard arguments both in my writing and in my speech. This is a good goal for people with BPD. Softness, tact, kindness and gentleness are often absent from the behaviour and speech of sufferers from BPD. This has certainly been true of me in the half century trajectory of my experience of BPD. These qualities are still absent at crucial times, but so is this true of billions of others who do not have BPD.
5. At some of the postings of my story, my experience, on the internet there is only a brief statement and at other sites the statement is as long as this one. As in life, so on the internet: not everything a man knows can be disclosed; not everything that can be disclosed is timely and not every timely utterance is suited to the ears of the hearer. This definition of tact from the writings of Baha’u’llah is most apt here. I have used this 90,000 word statement or parts of it for other purposes. Without sequence, without narrative form, without analysis of some kind and some attempt to frame a discernible causality, one’s story remains a bit of a jumble to say the least.
6. Of course, not everyone looks at their life experience this way. We are a highly diverse species and not everyone is inclined to write an account like mine, if they write their account at all. In my experience over all these decades with this illness, I am inclined to the view that very few ever write their story in even an abbreviated form. We are a highly diverse species, as I say above, and we see, experience and understand things in so many different ways. Life has an element of mystery, of jumble, no matter how much knowledge and understanding we bring to our problems and whether we write an account of our life or whether we don’t. There is so much, too, of the practical that one needs to learn to implement if one has BPD. The old English proverbs are pertinent here: “A full cup must be carried steadily;” and “A Smooth sea never made a skilled mariner.”
7. And so, as I say, this story is what could be called my chaos narrative. Certainly studies in autobiography and biography, as I say above, are now classifying this very popular genre into many sub-types. Autobiography and its several forms of life narrative, memoirs and diary, inter alia, is arguably the most popular genre of the last several hundred years. One sub-category of the genre of life-writing is the chaos narrative. It is written after the excesses of the chaos have gone; the experience of the extremes of the chaos are incompatible with the writing or the telling. To put this another way, it is difficult to write the story while in the midst of some of the more extreme parts of the experience.
8. People like the famous dancer Nijinski, among others, have placed their experience in a written context during their suffering. But I could no more have written anything when in the summer of 1968 I was placed in a locked and padded room to protect myself from myself; or in the winter of 1978 living in Ballarat, an old gold-mining town in Australia, when I hid under the sheets of my bed on getting home from work feeling, as I did, a sense of acute paranoia every day. The paranoia was not experienced all the time but certainly enough of the day to make the day one that was difficult to cope with in my ordinary employment and family situation. As I say, some write in the midst of their chaos, but this is not the case with me in this account.
8.1 Those who are living in the midst of bipolar episodes are now telling of their experiences more and more in recent years as they come-out and as BPD becomes more a part of public knowledge. Their stories are often bizarre, but in this crazy world sometimes their stories are only one of many kinds of traumatic, bizarre and extreme forms of suffering that the world is drowning in at present. The chaos that I describe in the distant past is told here in the relative and retrospective tranquillity of the present. Living in the midst of chaos, to emphasize this point for a final time, makes reflection, and consequently any attempt at narrative for oneself or others, difficult if not impossible.
8.2 Telling and, even more so, writing is a way of taking control and creating order, thus giving an account of what was once experienced as chaos, but now has a framework of meaning. To some extent, as a famous psychiatrist Dr Victor Frankel once put it, suffering ceases to be suffering, the moment it finds a meaning. That is partly true and even if it is entirely true it is not always seen that way by the sufferers. But Frankel’s words apply to me in a significant way and this is partly why I write this account here. Without one of the main strands of medicine, though, namely orthodox psychiatry behind me and its pharmacological strand I don’t feel I would even be here to tell my story.
9. The longest intense D(depression) I had was in 1963 and 1964 with perhaps two six month periods from June to November and July to December, respectively. The longest episode of some combination package that came to be labelled a mild schizo-affective state, a combination or alternation of mania and depression among other symptoms, was a part of my life from June to November 1968. This episode also resulted in the medical characterization of my illness, as I say, a SAD with the adjective mild placed at the front of the term. The episodes of H in 1977 to 1980 and 1990 were treated more quickly with medication, although the 1977/8 episode, beginning in December/January, seemed to last for at least three or four months and had a mostly depressive component. It was treated with trifluoperazine, under its brand name stelazine, another anti-psychotic medication and the side effects were horrific. Only the 1980 episode required hospitalization in this case for one month in May of 1980.
10.1 This narrative, this account, tries to give voice to what is complex and, in some ways, very difficult to understand. I do not want to glorify this experience, but I do want to describe its tortuous, debilitating and life-threatening pathology. I do want to tell of what is, in many ways, a normal reaction to both difficult external circumstances and bio-chemical factors inherent in my body physiology. The project of writing about this life-long trauma is difficult and riddled with paradoxes and contradictions, but it has been indispensable to take on the act of writing even as it has been incomplete and impossible to fully understand. The repercussions still continue to evolve even in the process of describing its history in my life.
10.2 The society we live in is chronically traumatized and there is a need for narrative forms that accommodate this reality. This personal story is but one of these forms. I try to present the unpresentable in as thorough and complicated a manner that does as much justice to the pathology as possible.
11. In 1968 when I was on the inside of a giant mental hospital it had many similarities to the setting in One Flew Over The Cuckoo’s Nest – either the book or the movie. It is hard to imagine, but those huge warehouses of misery and human suffering still exist in thousands of places around the world. In my experience many of those with mental health issues are tender souls who tend toward intense emotions, great empathy for others, powerful creativity and a unique way of seeing the world. Lots of tribal or agrarian societies don’t stigmatize, drug or hospitalize people with a different view of reality; instead, they have an exalted and revered status. Seen as shamans, seers and even visionaries, the people who experience reality in a new or unique way have a special place in those cultures, instead of receiving the fear, approbation and shunning Western societies often give their mentally ill people.
In the United States and in other so-called “first-world” countries, the treatment or the lack of treatment of the mentally ill has often resulted in the worst possible outcomes. Instead of confining the mentally ill in huge state hospital facilities many governments closed those facilities, and believe me, some of them needed to be closed. But then they often failed to fund the neighborhood-based halfway houses and mental health treatment facilities that the mentally ill population needed so desperately. The result? We now house most of our mentally ill Americans in two places: on our streets as homeless people, or in our jails. As just one example of this shameless ignorance and neglect, the Los Angeles County Jail now houses America’s largest institutionalized mentally-ill population.
As a result of this massive national failure in many countries, we all suffer. The vast majority of America’s mentally ill have no place to go, no safe haven, no treatment options, no ability to seek care or counseling. Medications to treat depression sell better than any other drug. Increasingly, even though only a tiny fraction of the mentally ill population is potentially violent, we all experience the mounting incidence of injuries, suicides and mass shootings that could have been averted by a working and effective system to help, identify and treat mentally ill people.
For the rest of this account beyond the 1970s to the present, to 2014, readers are advised to go to Part 2 of "my chaos narrative" which is found here at Bahá'í Library online.