An Unquiet Mind: A Memoir of Moods and Madness (12 page)

A few months ago I asked my psychiatrist for a copy of my medical records. When I read over them, it was a very disconcerting experience. By March of 1975, six months after starting lithium, I had stopped taking it. Within weeks I became manic and then severely depressed. Later that year I resumed my lithium. As I read through my doctor’s notes for the time, I was appalled to find a continuation of the pattern:

Part of my stubbornness can be put down to human nature. It is hard for anyone with an illness, chronic or acute, to take medications absolutely as prescribed. Once the symptoms of an illness improve or go away, it becomes even more difficult. In my case, once I felt well again I had neither the desire nor incentive to continue taking my medication. I didn’t want to take it to begin with; the side effects were hard for me to adjust to; I missed my highs; and, once I felt normal again, it was very easy for me to deny that I had an illness that would come back. Somehow I was convinced that I was an exception to the extensive research literature, which clearly showed not only that manic-depressive illness comes back, but that it often comes back in a more severe and frequent form.

It was not that I ever thought lithium was an ineffective drug. Far from it. The evidence for its efficacy and safety was compelling. Not only that, I knew it worked for me. It certainly was not that I had any moral arguments
against psychiatric medications. On the contrary. I had, and have, no tolerance for those individuals—especially psychiatrists and psychologists—who oppose using medications for psychiatric illnesses; those clinicians who somehow draw a distinction between the suffering and treatability of “medical illnesses” such as Hodgkin’s disease or breast cancer, and psychiatric illnesses such as depression, manic-depression, or schizophrenia. I believe, without doubt, that manic-depressive illness is a medical illness; I also believe that, with rare exception, it is malpractice to treat it without medication. All of these beliefs aside, however, I still somehow thought that I ought to be able to carry on without drugs, that I ought to be able to continue to do things my own way.

My psychiatrist, who took all of these complaints very seriously—existential qualms, side effects, matters of value from my upbringing—never wavered in his conviction that I needed to take lithium. He refused, thank God, to get drawn into my convoluted and impassioned web of reasoning about why I should try, just one more time, to survive without taking medication. He always kept the basic choice in perspective: The issue was not whether lithium was a problematic drug; it was not whether I missed my highs; it was not whether taking medication was consistent with some idealized notion of my family background. The underlying issue was whether or not I would choose to use lithium only intermittently, and thereby ensure a return of my manias and depressions. The choice, as he saw it—and as is now painfully clear to me—was between madness and sanity, and between life and death. My manias were occurring more frequently and, increasingly,
were becoming more “mixed” in nature (that is, my predominantly euphoric episodes, those I thought of as my “white manias,” were becoming more and more overlaid with agitated depressions); my depressions were getting worse and far more suicidal. Few medical treatments, as he pointed out, are free of side effects, and, all things considered, lithium causes fewer adverse reactions than most. Certainly, it was a vast improvement on the brutal and ineffectual treatments that preceded it—chains, bloodletting, wet packs, asylums, and ice picks through the lobes—and although the anticonvulsant medications now work very effectively, and often with fewer side effects, for many people who have manic-depressive illness, lithium remains an extremely effective drug. I knew all of this, although it was with less conviction than I have now.

In fact, underneath it all, I was actually secretly terrified that lithium might
not
work: What if I took it, and I still got sick? If, on the other hand, I didn’t take it, I wouldn’t have to see my worst fears realized. My psychiatrist very early on saw this terror in my soul, and there is one brief observation in his medical notes that captured this paralyzing fear completely:
Patient sees medication as a promise of a cure, and a means of suicide if it doesn’t work. She fears that by taking it she will risk her last resort
.

Y
ears later, I was in a hotel ballroom packed with more than a thousand psychiatrists, many of them in a feeding frenzy; free food and drinks, however abysmal, have a way of bringing doctors out of the woodwork and up to the troughs. Journalists
and other writers often discuss the August migration of psychiatrists, but there is a different kind of herding behavior in May—the peak month for suicide, one might note—when fifteen thousand shrinks of all stripes attend the annual meeting of the American Psychiatric Association. Several of my colleagues and I were to give talks about recent advances in the diagnosis, pathophysiology, and treatment of manic-depressive illness. I was, of course, pleased that the disease I suffered from drew such a large crowd; it was in one of its vogue years, but I also knew that it was inevitable, in other years, that this role would be captured, in turn, by obsessive-compulsive disorder or multiple-personality disorder or panic disorder, or whatever other illness caught the fancy of the field, promised a new breakthrough treatment, had the most colorful PET (positron emission tomography) scan images, had been central to a particularly nasty and expensive lawsuit, or was becoming more readily reimbursable by insurance companies.

I was scheduled to speak about psychological and medical aspects of lithium treatment, so, as was often the case, I started off with a quote from “a patient with manic-depressive illness.” I read it as if it had been written by someone else, although it was my own experience being recounted.

The truth of the clinical situation hit a responsive chord, for it is an unusual psychiatrist who has not had to deal with the subtle, and not so subtle, resistance to treatment shown by many patients with manic-depressive illness. The final sentence, “The war had just begun,” brought a roar of laughter. The humor, however, was a bit more in the recounting than in the actual living through it. Unfortunately, this resistance to taking lithium is played out in the lives of tens of thousands of patients every year. Almost always it leads to a recurrence of the illness; not uncommonly it results in tragedy. I was to see this, a few years after my own struggles with lithium, in a patient of mine. He became a particularly painful reminder to me of the high costs of defiance.

T
he UCLA emergency room was alive with residents, interns, and medical students; it was also, rather strangely, very much alive with illness and death. People were moving quickly, with the kind of brisk self-assurance that high intelligence, good training, and demanding circumstances tend to breed; and, despite the unfortunate reason for my having been called down to the ER—one of my patients had been admitted acutely psychotic—I found myself unavoidably caught up in the exhilarating pace and chaotic rhythm. Then came an absolutely blood-curdling scream from one of the examining rooms—a scream of terror and undeniable madness—and I ran down the corridor: past the nurses, past a medical resident dictating notes for a patient’s chart, and past a surgical resident poring over the
PDR
with a cup of coffee in one
hand, a hemostat clamped and dangling from the short sleeve of his green scrub suit, and a stethoscope draped around his neck.

I opened the door to the room where the screams had begun, and my heart sank. The first person I saw was the psychiatry resident on call, whom I knew; he smiled sympathetically. Then I saw my patient, strapped down on a gurney, in four-point leather restraints. He was lying spread-eagle on his back, each wrist and ankle bound in a leather cuff, with an additional leather restraining strap across his chest. I felt sick to my stomach. Despite the restraints, I also felt scared. A year before this same patient had held a knife to my throat during a psychotherapy session in my office. I had called the police at that time, and he had been involuntarily committed to one of the locked wards at UCLA’s Neuropsychiatric Institute. Seventy-two hours later, in the impressively blind wisdom of the American justice system, he had been released back into the community. And to my care. I noted with some irony that the three police officers who were standing by the gurney, two of whom had their hands resting on their guns, evidently thought he represented a “threat to himself or others” even if the judge hadn’t.

He screamed again. It was a truly primitive and frightening sound, in part because he himself was so frightened, and in part because he was very tall, very big, and completely psychotic. I put my hand on his shoulder and could feel his whole body shaking out of control. I had never seen such fear in anyone’s eyes, nor such visceral agitation and psychological pain. Delirious mania is many things, and all of them are awful beyond description. The resident had given him a massive
injection of an antipsychotic medication, but the drug had not yet taken hold. He was delusional, paranoid, largely incoherent, and experiencing both visual and auditory hallucinations. He reminded me of films I had seen of horses trapped in fires with their eyes wild with fear and their bodies paralyzed in terror. I tightened my hand on his shoulder, shook him gently, and said, “It’s Dr. Jamison. You’ve been given some Haldol; we’re going to take you up to the ward. You’re going to be all right.” I caught his eye for a moment. Then he screamed again. “You’ll be fine. I know you don’t believe it now, but you will be well again.” I looked over at the three thick volumes of his medical records lying on the table nearby, thought about his countless hospitalizations, and wondered about the truthfulness of my remarks.

That he would get well again, I had no doubt. How long it would last was another question. Lithium worked remarkably well for him, but once his hallucinations and abject terror stopped, he would quit taking it. Neither the resident nor I needed to see the results of the lithium blood level that had been drawn on his admission to the emergency room. There would be no lithium in his blood. The result had been mania. Suicidal depression would inevitably follow, as would the indescribable pain and disruptiveness to his life and to the lives of the members of his family. The severity of his depressions was a black mirror image of the dangerousness of his manias. In short, he had a particularly bad, although not uncommon, form of the illness; lithium worked well, but he wouldn’t take it. In many ways, it seemed to me, as I stood there next to him in the emergency room, that all of the time, effort, and
emotional energy that I and the others put into treating him were to little or no avail.

Gradually the Haldol began to take effect. The screaming stopped, and the frantic straining against his restraints died down. He was both less frightened and less frightening; after a while he said to me, in a slowed and slurred voice, “Don’t leave me, Dr. Jamison. Please, please don’t leave me.” I assured him I would stay with him until he got to the ward. I knew that I was the one constant throughout all of his hospitalizations, court appearances, family meetings, and black depressions. As his psychotherapist for years, I had been privy to his dreams and fears, hopeful and then ruined relationships, grandiose and then shattered plans for the future. I had seen his remarkable resilience, personal courage, and wit; I liked and respected him enormously. But I also had been increasingly frustrated by his repeated refusals to take medication. I could, from my own experience, understand his concerns about taking lithium, but only up to a point; past that point, I was finding it very difficult to watch him go through such predictable, painful, and unnecessary recurrences of his illness.

No amount of psychotherapy, education, persuasion, or coercion worked; no contracts worked out by the medical and nursing staff worked; family therapy didn’t help; no tallying up of the hospitalizations, broken relationships, financial disasters, lost jobs, imprisonments, squanderings of a good, creative, and educated mind worked. Nothing I or anyone else could think of worked. Over the years, I asked several of my colleagues to see him in consultation, but they, like me, could find no way to reach him, no chink in the tightly riveted armor of his resistance. I spent hours talking to my own
psychiatrist about him, in part to seek his clinical advice, and in part to make sure that my own history of stopping and starting lithium was not playing some sort of unconscious, unacknowledged role. His attacks of mania and depression became more frequent and severe. No breakthrough ever came; no happy ending ever materialized. There was simply nothing that medicine or psychology could bring to bear that would make him take his medication long enough to stay well. Lithium worked, but he would not take it; our relationship worked, but not well enough. He had a terrible disease and it eventually cost him his life—as it does tens of thousands of people every year. There were limits on what any of us could do for him, and it tore me apart inside.