Stories in life are chaotic in the absence of narrative order. And so I tell my story here as briefly as possible to help establish, for me, a sense of order. I tell of these events, as a storyteller, my experience of life, to some extent without sequence or discernible causality. Life has an element of mystery no matter how much knowledge and understanding we bring to the problem. I claim that chaos narratives are incompatible with writing or with telling. Those who are truly living a chaos cannot tell of it in words except in the most bizarre fashion. The chaos that I describe in the distant past is told here in a story-form. I now reflect on that experience retrospectively. Lived chaos makes reflection, and consequently story-telling, impossible when one is in the midst of the experience. Telling, and even more so writing, it seems, is a way of taking control, creating order, thus keeping that once experienced chaos at bay.
2. Enter: Lithium
Lithium is, arguably, the central pivot in this whole story. I have been on lithium now for twenty-seven years, about half of the total time I have experienced this significantly/partially genetic disorder. My mood swings, now in 2007, take place, for the most part, late in the evening and after midnight with the death wish still part of the experience, but none of the intensity that my mood swings had for many years, at least until 2001 when fluvoxamine was added to my medication package. The symptoms that affect my daily working capacity are fatigue and psychological weariness, sometimes after a night of light sleeping, tossing and turning and/or sometimes late at night after many hours of intellectual activity. Dryness of the mouth and short term memory loss also seem to affect my daily life as a result of (a) lithium treatment and (b), in the case of memory loss, perhaps due to the eight ECT treatments I had as far back as the late 1960s. My current psychiatrist who specializes in treating people with bi-polar disorder, has been providing his professional advice for the last five years, after a series of psychiatrists I have had going back to 1968.3
It seemed appropriate to outline this detailed statement for several purposes since the issue of the nature of my problem and what I have called manic-depression/bi-polar disorder is a complex one, varies from person to person and has been of concern over the sixty years that I have had to deal with its symptoms in my personal and working life-as have others involved with me. It is difficult to characterize my condition and it is for this reason that I have written what some may find to be a somewhat long statement for both my satisfaction and use by others. I hope the account below, in both long and short term contexts, will explain adequately my reasons for not wanting to work in any employment position or participate in any demanding social context. This account may also provide those interested with some useful information for dealing with their particular problems.
3. Manic-Depression: Long-term 1947-2001
There seems to be a process, one of immense variability, that I have experienced on a daily basis for some 60 years. The details, the symptoms, the behaviour, varies from year to year, with the decades, with the days. I cross from some normal behavioural constellation to an abnormal, intense one. The abnormal extreme position varies, as I say, from year to year in content, texture, tone and intensity. In 1946 it was characterized by uncontrollable early childhood behaviour. My mother had to deal with these aberrations. I think the diagnosis of bi-polarism at that early stage of my life is a remote possibility given a statistical average of 1% of manic-depressives having the disorder in childhood. Looking back to my childhood I did have some behavioural abnormalities, but their association with bi-polarism is, I think, unlikely in retrospect.
At the moment my bi-polarism is characterized by a mild tedium vitae attitude and behaviour as I have come to call it--late at night. Due to the above "process" over the last sixty years, due to the part of the process which occurs in varying degrees in various accentuated forms, it has often been difficult to define just where I was at any one time along that 'normal-abnormal' continuum. This was true at both the depressive end and the hypomanic end of the spectrum. It is difficult, therefore, to actually name the number of times when I have had major manic-depressive episodes, perhaps as many as eight, certainly as few as four, in my whole life, from the first episode--which was probably not an episode--in 1946 to the last brief episode in 1990 when I went off my lithium for between one and three months. Defining an episode is not easy for me to do; indeed, the concept of episode is only useful in some respects. In other ways it over-simplifies a complex set of behaviours and has value when trying to describe the experience in writing.
Since 1990 I have generally had little difficulty knowing where I was in this process, this swing of mood and feelings. The great intensities had gone by 1990. Total acceptance of the necessity of taking lithium was a critical variable in this process and it took a decade to achieve(1980-1990). At the hypomanic end of the continuum over the years there were experiences like the following: violent emotional instability and oscillation, abrupt changes and a sudden change in a large number of intellectual assumptions, elation, high energy. Mental balance, a psychological coherence between intellect and emotion and a rational reaction to the outside world all seemed to blow away, over a few hours to a few days, as I was plunged in a sea of what could be variously described as: emotional heat, intense awareness, sensitivity, sleeplessness, voluble talking, racing mental activity, fear, excessive and clearly irrational paranoia--and in 1968 virtually total incoherence at times--at one end of the spectrum; or intense depression, melancholia, an inner sense of despair and a desire to commit suicide4 at the other end. The latter I experienced from 1963 to 1965, off and on; the former from 1964 to 1990, on several occasions.
The longest 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 hypomania was from June to November 1968. This episode was also given the name of schizo-affective disorder with the adjective mild placed at the front of the term. The episodes of hypomania in 1978, 1979, 1980 and 1990 were treated quickly with medication, although the 1978 episode, beginning in January, seemed to last for at least three or four months and had a mostly depressive component. It was treated with stelazine and the side effects were horrific. I wanted to get under the bedclothes every night after getting home from work due to paranoia and depressive symptoms. Only the 1980 episode required hospitalization in this case for one month.
I had some experience of this variously characterized illness in childhood as far back as about 1947 at the age of 2 and then onward through early, middle and late childhood into the puberty cusp of 12 or 13 I manifested symptoms which, in retrospect, seem to me examples of a lack of control of my emotions, a far too intense activity threshold and activity with what could be called mild bi-polar symptoms. It was not until much later in life, though, that I began to see these behavioural aberrations in childhood, at puberty and during adolescence as possibly having a link with my future mental illness. It was not until I was 19 in 1963 that any characteristics of this illness became quite clearly apparent in my day-to-day life. They did not receive the required medical attention and the diagnosis of schizo-affective disorder, bi-polarism and/or depression did not take place—medically. I was just given lots of advice from religious to common-sensical varying from diet to exercise. And after several months or several years the emotional aberrations disappeared, at least for a time.
My episodes over the years seemed to exhibit quite separate and distinct tendencies and patterns; hypomania was always characterized by elation and depression was always characterized by varying degrees of very low moods. In the 1978 episode, elation and depression followed each other alternatively within a two to three month period. Clearly, in the episodes in the late '70s, fear, paranoia and the extremes of depression seemed to be much less than those of the 1960s.
This account above has none of the fine detail that I could include like: (a) mental and mostly auditory hallucinations, (b) specific fears and paranoias, (c) electroconvulsive therapy, (d) psychiatric analysis and diagnosis, (e) the many years of dealing with suicidal thoughts and the death wish, (f) experiences in and out of half a dozen hospitals, unnumbered doctors’ clinics and the advice from more people than I care to think of, (g) adjusting to medications that varied from ones which put me to sleep to ones which made me high; (h) the affects of these swings on my employment, my relationships and my attitude to life; and (i) the periods in my life when the manifestations of the disorder were few and far between. Many of the situations, looking back, were humorous and the contexts absurd. And there was much else but, as I indicate, I hesitate to go into more detail. My aim here is to make a short, clinical statement, to put the facts on paper. Perhaps later I will go into the kind of detail some readers have already asked for. And so--I want to make this statement as short as possible but as detailed as I can to give a longitudinal perspective.
There are a variety of manic-depressive profiles, different typicalities, from person to person. It is bipolar because both ends of the spectrum, the moods, were experienced over the period 1947 to 2007, 60 years. Thanks to lithium most of the extremes were treated at the age of 35 in 1980. It took another ten years, until 1990 as I say above, for me to fully accept the lithium treatment. From time to time in the 1980s I tried to live without the lithium, to ‘go it alone’, as they say colloquially. Such, in as brief a way as possible, is the summary of my experience over the years. I have written more extensively of this in my autobiography which is readily available on the internet if anyone is interested. I would like, now, to focus on my more recent experience of the last decade and a half, 1991-2007, and especially the last half dozen years, 2001-2007.
4. Manic-Depression: Short-term 1991-2007
In the eight years 1991 to 1999 I finished my life of full-time employment, began my obsession with writing and experienced, at last after a decade a full-acceptance of my lithium treatment. In 2001, after two years of early retirement, my supervising psychiatrist in Tasmania suggested I go onto fluvoxamine in addition to the lithium treatment. Fluvoxamine is an anti-depressant. The fluvoxamine removed the blacknesses I had continued to experience at night, from late in the evening until early morning when I was awake or partially awake. The death-wish has always been associated with these blacknesses. With the fluvoxamine, gradually the blacknesses, the nightly depressions, disappeared or virtually so with only residues of a lower mood remained. The death wish remained as did sleeping problems, but in a much milder form. Like so many things in life, the death wish and mood swings have varying degrees of intensity and coping is the key question—and one not easily described and/or answered.
Frequent urination, periodic nausea and memory problems related, in part and perhaps, to the shock treatments I had back in the 1960s, were new problems by the year 2001. But the dark and debilitating feelings, I had experienced for so many years, were at last removed, if not totally at least virtually. After sixty years of bi-polar disorder and/or manifestations of bi-polar disorder in varying degrees of intensity, with periodic totally-debilitating episodes, most of the worst symptoms seem at last, at least in the last six years, to have been treated and removed. The anger seemed, at last, to have disappeared, little by little, year after year, the anger episodes had finally gone by the time I was in my early sixties. Irritability, it seems to me looking back over nearly 45 years of periodic outbursts of anger or what some call ‘intermittent explosive disorder,’ triggered my anger. Irritability in people who have bipolar disorder is a biologically driven symptom of hypomania or mania. The sexual urges still remained.
In April 2007 I switched from lithium to sodium valproate as my main medication due to the creatinin levels in my blood which had been too high for too long—for about a year. These creatinin levels were indicators that readers of this document can read about in the bi-polar literature to see just how the kidneys are affected. This kidney difficulty could have led to serious health problems had I not gone on to the new medication. As I write this revision of my story I have been on the sodium valproate for one month without serious or even minor problems.
5. Other Physical Difficulties:
Five years ago in 2002 I was diagnosed with chronic obstructive pulmonary disease(COPD) or emphysema which gives me a shortage of breath when I exert myself even mildly. Many millions of people have died from this illness in the last several decades; there are various statistics. My form of COPD is not a serious one. It probably originated in my smoking on average one package of cigarettes every day from the age of 20 to 50. I did suffer from a mild RSI which I have since treated with exercise, thus lessening the effects. These two conditions exacerbated the remaining bi-polar symptoms by making it difficult to engage in an activity for more than short periods of time. The memory problem also contributes, as you can appreciate, to many practical problems in day-to-day life. I mention these things because, although my bi-polar disorder is largely treated, there is a constellation of physical and psychological difficulties remaining. I do not want to emphasize these problems, though, because such descriptions detract from the central theme of this account. Their relevance is indirect.
For the most part in community life I rarely talk about my bi-polar disorder and most people who know me have no idea of my medical history or the difficulties I have lived under physically. I have for many years regarded these difficulties as part of my own spiritual battles that I must face. And they are difficulties that have largely slipped into a low gear in the last several years and do not trouble me significantly. I should mention that a spiritual attitude which has been part of my belief system since the 1950s has helped me more than I can appreciate. This is especially true of the attitude to tests and difficulties in life which the founder of my religion says are often "like fire and vengeance but inwardly light and mercy."
In the last decade or two there has developed in psychiatry what has been variously called a Recovery Model for treatment and care. This model puts the onus on the person with the disorder to work out what is his or her best way to cope, to survive, in society given the conditions of their illness. Such an individual must work out the techniques and strategies for day-to-day living. With each individual the disorder is idiosyncratic; individual consumers of mental health services must work out what is best for them in terms of these services and in terms of what activities are appropriate for them within their coping capacity in life’s day-to-day spectrum with help from specialists as they think necessary. this, too, is a complex question but I don’t want to dwell on it here unduly. It is my hope that my story may help others work out their own particular regimen of treatment programs and daily coping tools.
6. My Wife’s Illness:
My wife Christine, now 60 years of age, also has not been well for many years--since we moved from Tasmania north of Capricorn in Australia’s Northern Territory in 1982 some 25 years ago. Although she, too, has a long history of different kinds of problems which I won’t go into here, it is the more recent ones that I mention below and that affect our life-style in more ways than one. The doctors do not know what the cause or causes of her physical problems is/are, but they are problems that have made life difficult for her and our life together. Her symptoms have included: dizziness, nausea, back-ear-and-eye ache, headache, among some two dozen or more maladies that I have put down on paper to try and monitor on a daily basis and try and find some pattern. Sometimes, with the aid of steroids or some new drug, or some alternative medical treatment, she seems to recover for a time, but her symptoms eventually return, sometimes mildly and sometimes not-so-mildly. At present she seems to be going through one of her best periods of symptom absence.
Perhaps the one advantage my wife’s ill-health, if there is any at all, is that it allows me to focus on her problems, to talk about her problems, when the subject of health and fitness comes up in our personal and community life as it so often does and has. This keeps the focus off of my own disability and I can talk about exercise and diet this avoiding the reference to my own disability. Consequently, people have little idea of the physical problems I face and much more of an idea of hers. I don’t mind this for I am not particularly interested in talking about my disability. After 60 years it has become somewhat tedious in the telling and the thinking.
It is well known that people with bi-polar disorder are disinclined to talk about their problem in public. Such a situation has the disadvantage that people have little idea of the battles I face in my personal life and, in the end in life, we all face our battles alone—hopefully with a little help from our friends as the inimitable Joe Cocker used to sing over forty years ago. This lack of public admission or opening-up can also have disadvantages. I have a core of friends with whom I can share a broad range of intimacies. Mostly, though, these friends do not tend to inquire and I do not tend to expose these battles any more except to a limited extent. I have little need to ‘dump’ on people, as we used to say, not after 60 years anyway. On occasion and with encouragement I do.
7. Creativity and Writing:
When I finally came to accept lithium without any mental reservations by the early 1990s; when I began, too, to see the end of my teaching career on the horizon and when there was a coincidental reduction in sexual frustrations due to taking up **********, I began to write poetry a great deal. One could say I was obsessed; my wife certainly would use that word and I have come to accept that word as a realistic description of my behaviour, especially now that I am retired and devote all of my waking hours when possible to reading and writing. The drive to create never seems to leave me and other activities, domestic and social, serve to provide a useful backdrop and alternative to the constant demand. the demand is relentless, obsessive, compulsive, disinhibited, but, on the whole a relaxed and energtic activity: emotion recollected in tranquillity as Wordsworth once put it. Since the early 1990s until this year, 2007, perhaps a total of some 15 years. the output has surprised me. Fame and fortune, though, have not come my way. This does not really concern me for the act of writing is enough of a motivator. The fluvoxamine, since 2001, has enabled me to work after 11 pm and into 2 to 3 am without the black moods. If I wake up at 4, 5 or 6, say, a degree of emotional blackness/worry is present but the transition to sodium valproate seems smooth.
8. Concluding Statement:
This brief and general account summarizes both the long history of this illness and where I am at present in what has been a life-long battle. I think it is important to state, in conclusion, that I possess a clinical disorder, a bio-chemical, perhaps even an electro-chemical, imbalance having to do with brain chemistry. The transmission of messages in my brain is simply or not-so-simply overactive, not smooth. With increasing diagnostic skills and knowledge and depending on what study you read, some five per cent of the population suffers from this illness. The extremes of this illness have been largely treated by lithium carbonate, sodium valproate and fluvoxamine. This has been my package; there are of course, as I have said, other packages of medication. A residue of symptoms remains which I have described briefly above. The other factors that describe my personal situation I have also outlined and need to be taken into consideration as well to provide a thorough overview of my present context. This overview will help others in various ways, ways I have also outlined above.
I have gone into the detail I have above because I wanted to give readers some idea of the extent of this illness and its subtle and not-so-subtle affects. I really feel quite and quietly exhausted from the battle with this illness and would prefer to continue to live my everyday life quietly and in ways that my health allows. In 1999 I gave up full-time work; in 2003 part-time work and in 2005 most of my volunteer work, except for some Baha’i work largely involving writing. In the years 1999 to 2005 I took part in a wide range of volunteer activities from holding a radio program, to singing in a small choir, to teaching in a school for seniors here in George Town, to organizing a series of public meetings. Now short bursts at writing are about as much as I want to handle, with other short bursts in the form of public meetings and various kinds of social activities which continue to give some variation to my life.
I also take on the inevitable and necessary domestic activities in my home and my wife has become the most critical person in the social interaction scene. These activities and this interaction are all within my capacity for short time periods. Short periods of activity are also necessitated by my chronic obstructive pulmonary disease, but that is a separate issue which I do not want to overemphasize or even emphasize here.
In two years I will be 65 and will go off the Australian Disability Support Pension(ADSP) and onto the Australian Old Age Pension(AOAP). I have not worked in full-time employment for eight years for reasons associated with this illness. I have been on this ADSP for six years. Although I have been treated for the worst side-affects of manic-depressive illness, I have little energy, enthusiasm or capacity for full-time employment or demanding social and community activity that entails many hours of interaction. It is for this reason I have been granted the ADSP. My short-term memory loss often feels like the beginning of a dementia condition, although I had a memory test administered in 2001 at the Ann Street Medical Services clinic in George Town and the test did not indicate the beginnings of dementia or even serious memory problems. My wife, though, who knows me well and experiences the affects of this memory loss, has been very concerned and often frustrated by the behaviour associated with my memory loss for several years now. All of this adds to my present incapacity although, again, I do not want to give emphasis to this memory problem because it is really a peripheral, and perhaps unrelated, aspect of the bi-polar disorder.
I trust the above outline provides an adequate information base for you to evaluate my situation. I apologize for going on at such length. I know from experience that some readers tire when required to read long essays, but I felt it was essential to place my illness in context, so to speak. I know there are many, indeed millions, who have problems far worse than my own. But this is my story, my disability, briefly stated. I could say much more and I do in my autobiography/memoirs for anyone who is interested in reading my story. I look forward to hearing from anyone in the weeks, months and years ahead should my experience be relevant to theirs and should they want to discuss these issues further.
23 April 2007
No of Words: 5420
My wife, Chris, has suffered from different disorders most of our married life, although the first seven years, from 1976 to 1982 were relatively troubled free.
2 Readers interested in this story in a series of segments can go to the NAMI site, the National Alliance on Mental Illness>Consumers Section>Posting 18/7/06.
3 In 1968 I was diagnosed by a psychiatrist with a ‘mild’ schizo-affective disorder.
4 The death wish, a rare experience until I was about 35, has been a common occurrence in the last 28 years and requires its own description and analysis.
6Symptoms exhibited in childhood and adolescence are largely not described here, although I could go back to the age of two for manifestations of bi-polarism in my relationship with my mother. I discuss this complex question in my memoirs but not here.
6 The affects on my two marriages were a too extensive demand for sex and a tendency to anger; the affect on my employment was, again, the anger and desire for greater stimulation/satisfaction and in life in general a drive to succeed, to achieve. The periods 0-18 and 25-34 had a low incidence of visible symptoms and, although euphoria was rare, feelings of an enhanced emotional-sensory state were common. This, in summary, covers part of a lifetime of experience & attitude.
8 Interested readers should go to the internet site HealthyPlace.com Forums. The bi-polar section at that site has a 22 part outline under "My Story" which places my experience of bi-polar disorder in a larger autobiographical context of several hundred pages. Readers may find this an excellent site for relevant information of a number of disorders, mental and otherwise.
9 My sexual proclivities and their manifestations over these same 60 years are themselves a separate story. With 90% of marriages where one partner is bi-polar ending in divorce and some 20% of sufferers ending in suicide. I feel lucky to have survived and in the same marital relationship for over 30 years. Perhaps I will go into the sexual, marital and suicidal aspects of my life at a later date.
9 For the last 8 years, 1999 to 2007, I do academic work for an average of 8 hours a day and some exercise, relaxation program is essential for my mental balance and the continuity of my persistence. I do not go into the detail of this exercise and its various forms either in recent years or in the last sixty years.
10 I have a file of detailed notes on doctors’ visits, various treatments for various problems and background information. It is a file I opened in 1999 on my retirement to assist me in treating myself for particular medical problems that arise. But I have not commented on them here. The focus in this short account is on my bi-polar problem and some ancillary difficulties.
11 As I write these words I have just gone off lithium and onto sodium valproate.
12 This quotation is from the writings of Bahá’u’lláh and the assistance I have got from the religion He started is a separate story unto itself.
That’s all folks!