An Unquiet Mind

  Not having children of my own is the single most intolerable regret of my life. I do, however, and very fortunately, have two nephews and a niece—each wonderful and quite remarkable in his or her own way—and I enjoy, beyond description, my relationships with them. Being an aunt is an extraordinarily pleasurable sort of thing, especially if your nephews and niece are reflective, independent, thoughtful, droll, smart, and imaginative people. It is impossible not to find their company delightful. My nephews, whose interests, like those of their father, have leaned toward the study of mathematics and economics, are quiet, witty, freethinking, gentle souled, and charming young men. My niece, considerably younger, is now eleven and, having already won a national writing award, is very determined to become a writer. One often finds her curled up in a chair, scribbling away, asking about words or people, tending to her many and various animals, or leaping mouth first into a family discussion to defend her point of view. She is fiery, sensitive, original, and disconcertingly able to hold her own against a very vociferously articulate pack of older brothers, parents, and sundry other adults. I cannot imagine the awful gap that would exist in my life without these three children.

  Now and again, despite my strong commitment to the scientific efforts that are being made to track down the genes for manic-depressive illness, I have concerns about what finding the genes might actually mean. Clearly, if better and earlier diagnosis and more specific, less troublesome treatments result from the ongoing genetic research, then the benefits to individuals who have manic-depressive illness, to their families, and to society will be extraordinary. It is, in fact, only a matter of time until these benefits will be available. But what are the dangers in prenatal diagnostic testing? Will prospective parents choose to abort fetuses that carry the genes for manic-depressive illness, even though it is a treatable disease? (Interestingly, a recent study done at Johns Hopkins, which asked manic-depressive patients and their spouses whether or not they would abort an affected fetus, found that very few said that they would.) Do we risk making the world a blander, more homogenized place if we get rid of the genes for manic-depressive illness—an admittedly impossibly complicated scientific problem? What are the risks to the risk takers, those restless individuals who join with others in society to propel the arts, business, politics, and science? Are manic-depressives, like spotted owls and clouded leopards, in danger of becoming an “endangered species”?

  These are very difficult ethical issues, particularly because manic-depressive illness can confer advantages on both the individual and society. The disease, in both its severe and less severe forms, appears to convey its advantages not only through its relationship to the artistic temperament and imagination, but through its influence on many eminent scientists, as well as business, religious, military, and political leaders. Subtler effects—such as those on personality, thinking style, and energy—are also involved because it is a common illness with a wide range of temperamental, behavioral, and cognitive expression. The situation is yet further complicated by the fact that additional genetic, biochemical, and environmental factors (such as exposure to prolonged or significant changes in light, pronounced sleep reduction, childbirth, drug or alcohol use) may be at least in part responsible for both the illness and the cognitive and temperamental characteristics associated with great achievement. These scientific and ethical issues are real ones; fortunately, they are being actively considered by the federal government’s Genome Project and other groups of scientists and ethicists. But they are immensely troubling problems and will remain so for many years to come.

  Science remains quite remarkable in its ability to raise new problems even as it solves old ones. It moves quickly, often beautifully, and as it moves it brings high expectations in its wake.

  Sitting on one of the hard, uncomfortable chairs that are so characteristic of medical conferences, I was semi-oblivious to the world. My mind was on hold after having been lulled into a mild hypnotic state by the click, click, click of the changing of slides in a carousel. My eyes were open, but my brain was swaying gently in its hammock, tucked away in the far back reaches of my skull. It was dark and stuffy in the room, but beautiful and snowing outside. A group of my colleagues and I were in the Colorado Rockies, and anyone with any sense at all was skiing; yet there were more than a hundred doctors in the room, and the slides were going click, click, click. I caught myself thinking, for the hundredth time, that being crazy doesn’t necessarily mean being stupid, and what on earth was I doing indoors instead of being out on the slopes? Suddenly, my ears perked up. A flat, numbingly objective voice was mumbling something about giving an “update on structural brain abnormalities in bipolar illness.” My structurally abnormal brain came to attention, and a chill shot down my spine. The mumbling continued: “In the bipolar patients we have studied, there is a significantly increased number of small areas of focal signal hyperintensities [areas of increased water concentration] suggestive of abnormal tissue. These are what neurologists sometimes refer to as ‘unidentified bright objects,’ or UBOs.” The audience laughed appreciatively.

  I, who could ill afford any more loss of brain tissue—God knows what little chunks of gray matter had crossed the River Styx after my nearly lethal lithium overdose—laughed with somewhat less than total enthusiasm. The speaker went on, “The medical significance of these UBOs is unclear, but we know that they are associated with other conditions, such as Alzheimer’s, multiple sclerosis, and multi-infarct dementias.” I was right; I should have gone skiing. Against my better judgment, I pointed my head in the direction of the screen. The slides were riveting, and, as always, I was captivated by the unbelievable detail of the structure of the brain that was revealed by the newest versions of MRI techniques. There is a beauty and an intuitive appeal to the brain-scanning methods, especially the high-resolution MRI pictures and the gorgeous multicolored scans from the PET studies. With PET, for example, a depressed brain will show up in cold, brain-inactive deep blues, dark purples, and hunter greens; the same brain when hypomanic, however, is lit up like a Christmas tree, with vivid patches of bright reds and yellows and oranges. Never has the color and structure of science so completely captured the cold inward deadness of depression or the vibrant, active engagement of mania.

  There is a wonderful kind of excitement in modern neuroscience, a romantic, moon-walk sense of exploring and setting out for new frontiers. The science is elegant, the scientists dismayingly young, and the pace of discovery absolutely staggering. Like the molecular biologists, the brain-scanners are generally well aware of the extraordinary frontiers they are crossing, and it would take a mind that is on empty, or a heart made of stone, to be unmoved by their collective ventures and enthusiasms.

  I was, in spite of myself, caught up by the science, wondering whether these hyperintensities were the cause or the effect of illness, whether they became more pronounced over time, where in the brain they localized, whether they were related to the problems in spatial orientation and facial recognition that I and many other manic-depressives experience, and whether children who were at risk for manic-depressive illness, because one or both of their parents had the disease, would show these brain abnormalities even before they became ill. The clinical side of my mind began to mull about the visual advantages of these and other imaging findings in convincing some of my more literary and skeptical patients that (a) there is a brain, (b) their moods are related to their brains, and (c) there may be specific brain-damaging effects of going off their medications. These speculations kept me distracted for a while, as changing gears from the personal side of having manic-depressive illness to the professional role of studying and treating it often does. But, invariably, the personal interest and concerns returned.

  When I got back to Johns Hopkins, where I was now teaching, I buttonholed neurology colleagues and grilled my associates who were doing the MRI studies. I scurried off to the library to read up on what was known; it is, after all, one thing to believe intellectually
that this disease is in your brain; it is quite another thing to actually see it. Even the titles of some of the articles were a bit ungluing: “Basal Ganglia Volumes and White Matter Hyperintensities in Patients with Bipolar Disorder,” “Structural Brain Abnormalities in Bipolar Affective Disorder: Ventricular Enlargement and Focal Signal Hyperintensities,” “Subcortical Abnormalities Detected in Bipolar Affective Disorders, Using Magnetic Resonance Imaging”; on and on they went. I sat down to read. One study found that “Of the 32 scans of the patients with bipolar disorder, 11 (34.4%) showed hyperintensities, while only one scan (3.2%) from the normal comparison group contained such abnormalities.”

  After an inward snort about “normal comparison group,” I read on and found that, as usual in new fields of clinical medicine, there were far more questions than answers, and it was unclear what any of these findings really meant: they could be due to problems in measurement, they could be explained by dietary or treatment history, they could be due to something totally unrelated to manic-depressive illness; there could be any number of other explanations. The odds were very strong, however, that the UBOs meant something. In a strange way, though, after reading through a long series of studies, I ended up more reassured and less frightened. The very fact that the science was moving so quickly had a way of generating hope, and, if the changes in the brain structure did turn out to be meaningful, I was glad that first-class researchers were studying them. Without science, there would be no such hope. No hope at all.

  And, whatever else, it certainly gave new meaning to the concept of losing one’s mind.

  Clinical Privileges

  There is no easy way to tell other people that you have manic-depressive illness; if there is, I haven’t found it. So despite the fact that most people that I have told have been very understanding—some remarkably so—I remain haunted by those occasions when the response was unkind, condescending, or lacking in even a semblance of empathy. The thought of discussing my illness in a more public forum has been, until quite recently, almost inconceivable. Much of this reluctance has been for professional reasons, but some has resulted from the cruelty, intentional or otherwise, that I have now and again experienced from colleagues or friends that I have chosen to confide in. It is what I have come to think of, not without bitterness, as the Mouseheart factor.

  Mouseheart, a former colleague of mine in Los Angeles, was also, I thought, a friend. A soft-spoken psychoanalyst, he was someone I was in the habit of getting together with for a morning coffee. Less frequently, but enjoyably, we would go out for a long lunch and talk about our work and our lives. After some time, I began to feel the usual discomfort I tend to experience whenever a certain level of friendship or intimacy has been reached in a relationship and I have not mentioned my illness. It is, after all, not just an illness, but something that affects every aspect of my life: my moods, my temperament, my work, and my reactions to almost everything that comes my way. Not talking about manic-depressive illness, if only to discuss it once, generally consigns a friendship to a certain inevitable level of superficiality. With an inward sigh, I decided to go ahead and tell him.

  We were in an oceanfront restaurant in Malibu at the time, so—after a brief rundown on my manias, depressions, and suicide attempt—I fixed my eye on a distant pile of rocks out in the ocean and waited for his response. It was a long, cold wait. Finally, I saw tears running down his face, and, although I remember thinking at the time that it was an extreme response—particularly since I had tried to present my manias in as lighthearted a way as possible, and my depressions with some dispassion—I thought it was touching that he felt so strongly about what I had been through. Then Mouseheart, wiping away his tears, told me that he just couldn’t believe it. He was, he said, “deeply disappointed.” He had thought I was so wonderful, so strong: How could I have attempted suicide? What had I been thinking? It was such an act of cowardice, so selfish.

  I realized, to my horror, that he was serious. I was absolutely transfixed. His pain at hearing that I had manic-depressive illness was, it would seem, far worse than mine at actually having it. For a few minutes, I felt like Typhoid Mary. Then I felt betrayed, deeply embarrassed, and utterly exposed. His solicitude, of course, knew no bounds. Had I really been psychotic? If so, he asked in his soft voice, with seemingly infinite concern, did I really think, under the circumstances, that I was going to be able to handle the stresses of academic life? I pointed out to him, through clenched teeth, that I had in fact handled those particular stresses for many years, and, indeed, if truth be told, I was considerably younger than he was and had, in fact, published considerably more. I don’t really remember much of the rest of the lunch, except that it was an ordeal, and that at some point, with sarcasm that managed to pass him by, I told him that he ought not to worry, that manic-depressive illness wasn’t contagious (although he could have benefited from a bit of mania, given his rather dreary, obsessive, and humorless view of the world). He squirmed in his seat and averted his eyes.

  A boxed bouquet of a dozen long-stemmed red roses arrived at my clinic the next morning; an abject note of apology was tucked in at the top. It was a nice thought, I suppose, but it didn’t begin to salve the wound inflicted by what I knew had been a candid response on his part: he was normal, I was not, and—in those most killing of words—he was “deeply disappointed.”

  There are many reasons why I have been reluctant to be open about having manic-depressive illness; some of the reasons are personal, many are professional. The personal issues revolve, to a large extent, around issues of family privacy—especially because the illness under consideration is a genetic one—as well as a general belief that personal matters should be kept personal. Too, I have been very concerned, perhaps unduly so, with how knowing that I have manic-depressive illness will affect peoples perception of who I am and what I do. There is a thin line between what is considered zany and what is thought to be—a ghastly but damning word—“inappropriate,” and only a sliverish gap exists between being thought intense, or a bit volatile, and being dismissively labeled “unstable.” And, for whatever reasons of personal vanity, I dread the fact that my suicide attempt and depressions will be seen by some as acts of weakness or as “neurotic.” Somehow, I don’t mind the thought of being seen as intermittently psychotic nearly as much as I mind being pigeonholed as weak and neurotic. Finally, I am deeply wary that by speaking publicly or writing about such intensely private aspects of my life, I will return to them one day and find them bleached of meaning and feeling. By putting myself in the position of speaking too freely and too often, I am concerned that the experiences will become remote, inaccessible, and far distant, behind me; I fear that the experiences will become those of someone else rather than my own.

  My major concerns about discussing my illness, however, have tended to be professional in nature. Early in my career, these concerns were centered on fears that the California Board of Medical Examiners would not grant me a license if it knew about my manic-depression. As time went by, I became less afraid of such administrative actions—primarily because I had worked out such an elaborate system of clinical safeguards, had told my close colleagues, and had discussed ad nauseam with my psychiatrist every conceivable contingency and how best to mitigate it—but I became increasingly concerned that my professional anonymity in teaching and research, such as it was, would be compromised. At UCLA, for example, I lectured and supervised large numbers of psychiatric residents and psychology interns in the clinic I directed; at Johns Hopkins I teach residents and medical students on the inpatient wards and in the outpatient mood disorders clinic. I cringe at the thought that these residents and interns may, in deference to what they perceive to be my feelings, not say what they really think or not ask the questions that they otherwise should and would ask.

  Many of these concerns carry over into my research and writing. I have written extensively in medical and scientific journals about manic-depressive illness. Will my work now be seen by my
colleagues as somehow biased because of my illness? It is a discomforting thought, although one of the advantages of science is that one’s work, ultimately, is either replicated or it is not. Biases, because of this, tend to be minimized over time. I worry, however, about my colleagues’ reactions once I am open about my illness: if, for example, I am attending a scientific meeting and ask a question, or challenge a speaker, will my question be treated as though it is coming from someone who has studied and treated mood disorders for many years, or will it instead be seen as a highly subjective, idiosyncratic view of someone who has a personal ax to grind? It is an awful prospect, giving up one’s cloak of academic objectivity. But, of course, my work has been tremendously colored by my emotions and my experiences. They have deeply affected my teaching, my advocacy work, my clinical practice, and what I have chosen to study: manic-depressive illness in general and, more specifically, suicide, psychosis, psychological aspects of the disease and its treatment, lithium noncompliance, positive features of mania and cyclothymia, and the importance of psychotherapy.