An Unquiet Mind: A Memoir of Moods and Madness (20 page)

Sometimes, in the midst of one of my dreadful, destructive upheavals of mood, I feel Richard’s quietness nearby and am reminded of Byron’s wonderful description of the rainbow that sits “Like Hope upon a death-bed” on the verge of a wild, rushing cataract; yet, “while all around is torn / By the distracted waters,” the rainbow stays serene:

But if love is not the cure, it certainly can act as a very strong medicine. As John Donne has written, it is not so pure and abstract as one might once have thought and wished, but it does endure, and it does grow.

Part Four
AN UNQUIET MIND

N
ot long before I left Los Angeles for Washington, I received the most vituperative and unpleasant letter that anyone has ever written me. It came not from a colleague or a patient, but from a woman who, having seen an announcement of a lecture I was to give, was outraged that I had used the word “madness” in the title of my talk. I was, she wrote, insensitive and crass and very clearly had no idea at all what it was like to suffer from something as awful as manic-depressive illness. I was just one more doctor who was climbing my way up the academic ranks by walking over the bodies of the mentally ill. I was shaken by the ferocity of the letter, resented it, but did end up thinking long and hard about the language of madness.

In the language that is used to discuss and describe mental illness, many different things—descriptiveness, banality, clinical precision, and stigma—intersect to create confusion, misunderstanding, and a gradual bleaching out of traditional words and phrases. It is no longer clear what place words such as “mad,” “daft,” “crazy,”
“cracked,” or “certifiable” should have in a society increasingly sensitive to the feelings and rights of those who are mentally ill. Should, for example, expressive, often humorous, language—phrases such as “taking the fast trip to Squirrel City,” being a “few apples short of a picnic,” “off the wall,” “around the bend,” or “losing the bubble” (a British submariner’s term for madness)—be held hostage to the fads and fashions of “correct” or “acceptable” language?

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.

S
eated 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 underlying 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.