One of my friends, prior to being discharged from a psychiatric hospital after an acute manic episode, was forced to attend a kind of group therapy session designed as a consciousness-raising effort, one that encouraged the soon-to-be ex-patients not to use, or allow to be used in their presence, words such as “squirrel,” “fruitcake,” “nut,” “wacko,” “bat,” or “loon.” Using these words, it was felt, would “perpetuate a lack of self-esteem and self-stigmatization.” My friend found the exercise patronizing and ridiculous. But was it? On the one hand, it was entirely laudable and professional, if rather excessively earnest, advice: the pain of hearing these words, in the wrong context or the wrong tone, is sharp; the memory of insensitivity and prejudice lasts for a long time. No doubt, too, allowing such language to go unchecked or uncorrected leads not only to personal pain, but contributes both directly and indirectly to discrimination in jobs, insurance, and society at large.
On the other hand, the assumption that rigidly rejecting words and phrases that have existed for centuries will have much impact on public attitudes is rather dubious. It gives an illusion of easy answers to impossibly difficult situations and ignores the powerful role of wit and irony as positive agents of self-notion and social change. Clearly there is a need for freedom, diversity, wit, and directness of language about abnormal mental states and behavior. Just as clearly, there is a profound need for a change in public perception about mental illness. The issue, of course, is one of context and emphasis. Science, for example, requires a highly precise language. Too frequently, the fears and misunderstandings of the public, the needs of science, the inanities of popularized psychology, and the goals of mental health advocacy get mixed together in a divisive confusion.
One of the best cases in point is the current confusion over the use of the increasingly popular term “bipolar disorder”—now firmly entrenched in the nomenclature of the Diagnostic and Statistical Manual (DSM-IV), the authoritative diagnostic system published by the American Psychiatric Association—instead of the historic term “manic-depressive illness.” Although I always think of myself as a manic-depressive, my official DSM-IV diagnosis is “bipolar I disorder; recurrent; severe with psychotic features; full interepisode recovery” (one of the many DSM-IV diagnostic criteria I have “fulfilled” along the way, and a personal favorite, is an “excessive involvement in pleasurable activities”). Obviously, as a clinician and researcher, I strongly believe that scientific and clinical studies, in order to be pursued with accuracy and reliability, must be based on the kind of precise language and explicit diagnostic criteria that make up the core of DSM-IV. No patient or family member is well served by elegant and expressive language if it is also imprecise and subjective. As a person and patient, however, I find the word “bipolar” strangely and powerfully offensive: it seems to me to obscure and minimize the illness it is supposed to represent. The description “manic-depressive,” on the other hand, seems to capture both the nature and the seriousness of the disease I have, rather than attempting to paper over the reality of the condition.
Most clinicians and many patients feel that “bipolar disorder” is less stigmatizing than “manic-depressive illness.” Perhaps so, but perhaps not. Certainly, patients who have suffered from the illness should have the right to choose whichever term they feel more comfortable with. But two questions arise: Is the term “bipolar” really a medically accurate one, and does changing the name of a condition actually lead to a greater acceptance of it? The answer to the first question, which concerns accuracy, is that “bipolar” is accurate in the sense that it indicates an individual has suffered from both mania (or mild forms of mania) and depression, unlike those individuals who have suffered from depression alone. But splitting mood disorders into bipolar and unipolar categories presupposes a distinction between depression and manic-depressive illness—both clinically and etiologically—that is not always clear, nor supported by science. Likewise, it perpetuates the notion that depression exists rather tidily segregated on its own pole, while mania clusters off neatly and discreetly on another. This polarization of two clinical states flies in the face of everything that we know about the cauldronous, fluctuating nature of manic-depressive illness; it ignores the question of whether mania is, ultimately, simply an extreme form of depression; and it minimizes the importance of mixed manic-and-depressive states, conditions that are common, extremely important clinically, and lie at the heart of many of the critical theoretical issues underlying this particular disease.
But the question also arises whether, ultimately, the destigmatization of mental illness comes about from merely a change in the language or, instead, from aggressive public education efforts; from successful treatments, such as lithium, the anticonvulsants, antidepressants, and antipsychotics; from treatments that are not only successful, but somehow also catch the imagination of the public and media (Prozac’s influence on public opinion and knowledge about depression, for example); from discovery of the underlying genetic or other biological causes of mental illness; from brain-imaging techniques, such as PET and MRI (magnetic resonance imaging) scans, that visually communicate the location and concrete existence of these disorders; from the development of blood tests that will ultimately give medical credibility to psychiatric diseases; or from legislative actions, such as the Americans with Disabilities Act, and the obtainment of parity with other medical conditions under whatever health-reform system is put into place. Attitudes about mental illness are changing, however glacially, and it is in large measure due to a combination of these things—successful treatment, advocacy, and legislation.
The major mental health advocacy groups are made up primarily of patients, family members, and mental health professionals. They have been particularly effective in educating the public, the media, and the state and national governments. Although very different in styles and goals, these groups have provided direct support for tens of thousands of individual patients and their families; have raised the level of medical care in their communities by insisting upon competence and respect through, in effect, boycotting those psychiatrists and psychologists who do not provide both; and have agitated, badgered, and cajoled members of Congress (many of whom themselves suffer from mood disorders or have mental illness in their families) into increasing money for research, proposing parity for psychiatric illnesses, and passing legislation that bans job and insurance discrimination against the mentally ill. These groups—and the scientists and clinicians who make treatment possible—have made life easier for all of us who have psychiatric illnesses, whether we call ourselves mad or write letters of protest to those who do. Because of them, we now have the luxury of being able to debate the fine points of language about our own and the human condition.
The Troubled Helix
Seated in a chair, with quick access to escape through the back door of the conference room, Jim Watson was twitching, peering, scanning, squinting, and yawning. His fingers, linked together on the top of his head, were tapping restlessly, and he alternately was paying avid, if fleeting, attention to the data being presented, snatching a look at his New York Times, and drifting off into his own version of planetary wanderings. Jim is not good at looking interested when he is bored, and it was impossible to know if he really was thinking about the science at hand—the genetics and molecular biology of manic-depressive illness—or was instead mulling about politics, gossip, love, potential financial donors for Cold Spring Harbor Laboratory, architecture, tennis, or whatever other heated and passionate enthusiasm occupied his mind and heart at the moment. An intense and exceedingly blunt man, he is not someone who tends to bring out the dispassionate side of people. For myself, I find him fascinating and very wonderful. Jim is genuinely independent and, in an increasingly bland world, a true zebra among horses. While it could be argued that it is relatively easy to be independent and unpredictable if you have won the Nobel Prize for your contributions to discovering the structure of life, it is also clear that the same under
lying temperament—intense, competitive, imaginative, and iconoclastic—helped propel his initial pursuit for the structure of DNA.
Jim’s palpably high energy level is also very appealing; his pace, whether intellectual or physical, can be exhausting, and trying to keep up with him, in discussions across the dinner table or walking the grounds of Cold Spring Harbor, is no mean task. His wife maintains she can tell whether or not Jim is in the house simply by the amount of energy she feels in the air. But however interesting he is as a person, Jim is first and foremost a scientific leader: director until only very recently of one of the foremost molecular biology laboratories in the world, Cold Spring Harbor Laboratory, and the first director of the National Center for Human Genome Research. In the past few years, he has turned his interest toward the search for the genes responsible for manic-depressive illness.
Because the scientific understanding of manic-depressive illness is so ultimately beholden to the field of molecular biology, it is a world in which I have spent an increasing amount of time. It is an exotic world, one developed around an odd assortment of plants and animals—maize, fruit flies, yeast, worms, mice, humans, puffer fish—and it contains a somewhat strange, rapidly evolving, and occasionally quite poetic language system filled with marvelous terms like “orphan clones,” “plasmids,” and “high-density cosmids”; “triple helices,” “untethered DNA,” and “kamikaze reagents”; “chromosome walking,” “gene hunters,” and “gene mappers.” It is a field clearly in pursuit of the most fundamental of understandings, a search for the biological equivalent of quarks and leptons.
The meeting where Watson was peering and twitching and yawning was focused specifically on the genetic basis of manic-depressive illness, with the intent of bringing together clinical psychiatrists, geneticists, and molecular biologists, all of whom are in one way or another actively engaged in the search for the genes responsible for manic-depressive illness, to share information about their research methods, findings, and the pedigrees of the affected families whose genetic material is being analyzed. Pedigree after pedigree was being projected onto the screen, some with relatively few ill family members, others containing large numbers of squares and circles that had been completely blackened in, indicating men or women who suffered from manic-depressive illness. Half-blackened circles and squares depicted depressive illness, and an s, cross, or slash flagged those individuals who had committed suicide. Each of these black or half-black symbols represented a life with periods of terrible suffering, yet, ironically, the more of these darkened squares and circles in a particular family, the “better” (that is, the more genetically informative and useful) the pedigree was considered to be. It seemed very likely, when I looked around the room, that among these scientists, and somewhere within these pedigrees, the location of the gene or genes responsible for manic-depressive illness was going to be found. It was a very exciting thought, because once the genes are located, early and far more accurate diagnosis is likely to follow; so, too, is more specific, safer, less problematic, and more effective treatment.
The slides went off, the curtains were pulled back, and I looked out beyond Jim Watson, past the apple trees, and remembered a trip I had taken, years ago, down the Mississippi. Mogens Schou, a Danish psychiatrist who, more than anyone, is responsible for the introduction of lithium as a treatment for manic-depressive illness, and I had decided to skip a day’s sessions of the American Psychiatric Association’s annual meeting and take advantage of being in New Orleans. The best way to do this, we decided, was to take a boat ride down the Mississippi River. It was a gorgeous day, and, after having discussed a wide variety of topics, Mogens turned to me and asked me point-blank, Why are you really studying mood disorders? I must have looked as taken aback and uncomfortable as I felt, because, changing tack, he said, “Well, why don’t I tell you why I study mood disorders?” He proceeded to tell me about all of the depression and manic-depressive illness in his family, how devastating it had been, and how, because of this, years ago, he had been desperately searching the medical literature for any new, experimental treatments. When John Cade’s article about the use of lithium in acute mania first appeared in 1949, in an obscure Australian medical journal, Mogens pounced on it and began almost immediately the rigorous clinical trials necessary to establish the efficacy and safety of the drug. He talked with ease about his family history of mental illness and emphasized that it had been this strongly personal motivation that had driven virtually all of his research. He made it clear to me that he suspected my involvement in clinical research about manic-depressive illness was likewise personally motivated.
Feeling a bit trapped, but also relieved, I decided to be honest about my own and my family’s history, and soon the two of us were drawing our pedigrees on the backs of table napkins. I was amazed at how many of my squares and circles were darkened, or darkened with a question mark placed underneath (I knew, for instance, that my great-uncle had spent virtually all of his adult life in an asylum, but I didn’t know what his diagnosis had been). Manic-depressive illness occurred repeatedly, throughout the three generations I had knowledge of, on my father’s side of the family; asterisks, representing suicide attempts, showed up like a starfield. My mother’s side of the family, in comparison, was squeaky clean. It would not have taken a very astute observer of human nature to figure out that my parents are terribly different, but here was one very concrete example of their differences—and, quite literally, in black and white. Mogens, who had been sketching out his own family tree, took one look over my shoulder at the number of affected members in mine and promptly, laughingly, conceded the “battle of the black boxes.” He noted that the circle representing me was solid black and had an asterisk next to it—how remarkable to be able to reduce one’s suicide attempt to a simple symbol!—so we talked for a long time about my illness, lithium, its side effects, and my suicide attempt.
Talking with Mogens was extremely helpful, in part because he aggressively encouraged me to use my own experiences in my research, writing, and teaching, and in part because it was very important to me to be able to talk with a senior professor who not only had some knowledge of what I had been through, but who had used his own experiences to make a profound difference in the lives of hundreds of thousands of people. Including my own. No matter what struggles I had had with lithium, it was painfully clear to me that without it I would have been long dead or on the back wards of a state hospital. I was one of many who owed their lives to the black circles and squares in Schou’s family tree.
The fact that manic-depressive illness is a genetic disease brings with it, not surprisingly, very complicated and often difficult emotions. At one extreme is the terrible shame and guilt one can be made to feel. Many years ago, when I was living in Los Angeles, I went to a physician recommended to me by a colleague. After examining me, and after finding out that I had been on lithium for many years, he asked me an extended series of questions about my psychiatric history. He also asked me whether or not I planned to have children. Having generally been treated with intelligence and compassion by my various doctors up to that point, I had no reason to be anything but direct about my extensive history of mania and depression, although I also made it clear that I was, in the vernacular, a “good lithium responder.” I told him that I very much wanted to have children, which immediately led to his asking me what I planned to do about taking lithium during pregnancy. I started to tell him that it seemed obvious to me that the dangers of my illness far outweighed any potential problems that lithium might cause a developing fetus, and that I therefore would choose to stay on lithium. Before I finished, however, he broke in to ask me if I knew that manic-depressive illness was a genetic disease. Stifling for the moment an urge to remind him that I had spent my entire professional life studying manic-depressive illness and that, in any event, I wasn’t entirely stupid, I said, “Yes, of course.” At that point, in an icy and imperious voice that I can hear to this day, he stated—as though
it were God’s truth, which he no doubt felt that it was—“You shouldn’t have children. You have manic-depressive illness.”
I felt sick, unbelievably and utterly sick, and deeply humiliated. Determined to resist being provoked into what would, without question, be interpreted as irrational behavior, I asked him if his concerns about my having children stemmed from the fact that, because of my illness, he thought I would be an inadequate mother or simply that he thought it was best to avoid bringing another manic-depressive into the world. Ignoring or missing my sarcasm, he replied, “Both.” I asked him to leave the room, put on the rest of my clothes, knocked on his office door, told him to go to hell, and left. I walked across the street to my car, sat down, shaking, and sobbed until I was exhausted. Brutality takes many forms, and what he had done was not only brutal but unprofessional and uninformed. It did the kind of lasting damage that only something that cuts so quick and deep to the heart can do.
Oddly enough, it had never occurred to me not to have children simply because I had manic-depressive illness. Even in my blackest depressions, I never regretted having been born. It is true that I had wanted to die, but that is peculiarly different from regretting having been born. Overwhelmingly, I was enormously glad to have been born, grateful for life, and I couldn’t imagine not wanting to pass on life to someone else. All things considered, I had had a marvelous—albeit turbulent and occasionally awful—existence. Of course, I had had serious concerns: How could one not? Would I, for example, be able to take care of my children properly? What would happen to them if I got severely depressed? Much more frightening still, what would happen to them if I got manic, if my judgment became impaired, if I became violent or uncontrollable? How would it be to have to watch my own children struggle with depression, hopelessness, despair, or insanity if they themselves became ill? Would I watch them too hawkishly for symptoms or mistake their normal reactions to life as signs of illness? All of these were things I had thought about a thousand times, but never, not once, had I questioned having children. And despite the cold-bloodedness of the doctor who examined me and who told me I shouldn’t, I would have delighted in having a houseful of children, as David and I once had planned. But it just didn’t work out that way: David died, and Richard—the only man since David’s death that I wanted to have children with—already had three from a previous marriage.