Missing Saturn

People go mad in idiosyncratic ways. Perhaps it was not surprising that, as a meteorologist’s daughter, I found myself, in that glorious illusion of high summer days, gliding, flying, now and again lurching through cloud banks and ethers, past stars, and across fields of ice crystals. Even now, I can see in my mind’s rather peculiar eye an extraordinary shattering and shifting of light; inconstant but ravishing colors laid out across miles of circling rings; and the almost imperceptible, somehow surprisingly pallid, moons of this Catherine wheel of a planet. I remember singing “Fly Me to the Moons” as I swept past those of Saturn, and thinking myself terribly funny. I saw and experienced that which had been only dreams, or fitful fragments of aspiration.

Was it real? Well, of course not, not in any meaningful sense of the word “real.” But did it stay with me? Absolutely. Long after my psychosis cleared, and the medications took hold, it became part of what one remembers forever, surrounded by an almost Proustian melancholy. Long since that extended voyage of my mind and soul, Saturn and its icy rings took on an elegiac beauty, and I don’t see Saturn’s image now without feeling an acute sadness at its being so far away from me, so unobtainable in so many ways. The intensity, glory, and absolute assuredness of my mind’s flight made it very difficult for me to believe, once I was better, that the illness was one I should willingly give up. Even though I was a clinician and a scientist, and even though I could read the research literature and see the inevitable, bleak consequences of not taking lithium, I for many years after my initial diagnosis was reluctant to take my medications as prescribed. Why was I so unwilling? Why did it take having to go through more episodes of mania, followed by long suicidal depressions, before I would take lithium in a medically sensible way?

Some of my reluctance, no doubt, stemmed from a fundamental denial that what I had was a real disease. This is a common reaction that follows, rather counter-intuitively, in the wake of early episodes of manic-depressive illness. Moods are such an essential part of the substance of life, of one’s notion of oneself, that even psychotic extremes in mood and behavior somehow can be seen as temporary, even understandable, reactions to what life has dealt. In my case, I had a horrible sense of loss for who I had been and where I had been. It was difficult to give up the high flights of mind and mood, even though the depressions that inevitably followed nearly cost me my life.

My family and friends expected that I would welcome being “normal,” be appreciative of lithium, and take in stride having normal energy and sleep. But if you have had stars at your feet and the rings of planets through your hands, are used to sleeping only four or five hours a night and now sleep eight, are used to staying up all night for days and weeks in a row and now cannot, it is a very real adjustment to blend into a three-piece-suit schedule, which, while comfortable to many, is new, restrictive, seemingly less productive, and maddeningly less intoxicating. People say, when I complain of being less lively, less energetic, less high-spirited, “Well, now you’re just like the rest of us,” meaning, among other things, to be reassuring. But I compare myself with my former self, not with others. Not only that, I tend to compare my current self with the best I have been, which is when I have been mildly manic. When I am my present “normal” self, I am far removed from when I have been my liveliest, most productive, most intense, most outgoing and effervescent. In short, for myself, I am a hard act to follow.

And I miss Saturn very much.

My war with lithium began not long after I started taking it. I was first prescribed lithium in the fall of 1974; by the early spring of 1975, against medical advice, I had stopped taking it. Once my initial mania had cleared and I had recovered from the terrible depression that followed in its wake, an army of reasons had gathered in my mind to form a strong line of resistance to taking medication. Some of the reasons were psychological in nature. Others were related to the side effects that I experienced from the high blood levels of lithium that were required, at least initially, to keep my illness in check. (In 1974 the standard medical practice was to maintain patients at considerably higher blood levels of lithium than is now the case. I have been taking a lower dose of lithium for many years, and virtually all of the problems I experienced earlier in the course of my treatment have disappeared.) The side effects I had for the first ten years were very difficult to handle. In a small minority of patients, including myself, the therapeutic level of lithium, the level at which it works, is perilously close to the toxic level.

There was never any question that lithium worked very well for me—my form of manic-depressive illness is a textbook case of the clinical features related to good lithium response: I have grandiose and expansive manias, a strong family history of manic-depressive illness, and my manias precede my depressions, rather than the other way around—but the drug strongly affected my mental life. I found myself beholden to medication that also caused severe nausea and vomiting many times a month—I often slept on my bathroom floor with a pillow under my head and my warm, woolen St. Andrews gown tucked over me—when, because of changes in salt levels, diet, exercise, or hormones, my lithium level would get too high. I have been violently ill more places than I choose to remember, and quite embarrassingly so in public places ranging from lecture halls and restaurants to the National Gallery in London. (All of this changed very much for the better when I switched to a time-released preparation of lithium.) When I got particularly toxic I would start trembling, become ataxic and walk into walls, and my speech would become slurred; this resulted not only in several trips to the emergency room, where I would get intravenous drips to deal with the toxicity, but, much more mortifying, make me appear as though I were on illicit drugs or had had far too much to drink.

One evening, after a riding lesson in Malibu during which I twice fell off my horse into the poles of a jump, I was pulled over to the side of the road by the police. They put me through an impressively thorough roadside neurological exam—I walked a not very straight line; was not able to make my fingertip reach my nose; and was hopelessly bad at getting my fingertips to tap against my thumb; God only knows what the pupils of my eyes were doing when a police officer blared a light into them—and until I got out my bottles of medication, gave the officers the name and telephone number of my psychiatrist, and agreed to whatever blood tests they wanted to order, the police refused to believe that I was not on drugs or hadn’t been drinking.

Not long after that incident, shortly after I learned to ski, I was on a very tall mountain somewhere in Utah and unaware that high altitude coupled with rigorous exercise can raise lithium levels. I became completely disoriented and totally incapable of navigating my way down the mountain. Fortunately, a colleague of mine who knew I was taking lithium, and who was himself an expert on its medical uses, became concerned when I didn’t catch up with him at the time we had arranged to meet. He concluded that I might have become toxic from it, sent the ski patrol after me, and I came down the mountain safely, although rather more horizontally than I would have liked.

Nausea and vomiting and occasional toxicity, while upsetting and embarrassing at times, were far less important to me than lithium’s effect on my ability to read, comprehend, and remember what I read. In rare instances, lithium causes problems of visual accommodation, which can, in turn, lead to a form of blurred vision. It also can impair concentration and attention span and affect memory. Reading, which had been at the heart of my intellectual and emotional existence, was suddenly beyond my grasp. I was used to reading three or four books a week; now it was impossible. I did not read a serious work of literature or nonfiction, cover to cover, for more than ten years. The frustration and pain of this were immeasurable. I threw books against the wall in a blind fury and sailed medical journals across my office in a rage. I could read journal articles better than books, because they were short; but it was with great difficulty, and I had to read the same lines repeatedly and take copious notes before I could comprehend the meaning. Even so, what I read often disappeared from my mind like snow on a hot pavement. I took up needlepoint as a diversion and made countless cushions and firescreens in a futile attempt to fill the hours I had previously filled with reading.

Poetry, thank God, remained within my grasp, and, having always loved it, I now fell upon it with a passion that is hard to describe. I found that children’s books, which, in addition to being shorter than books written for adults, also had larger print, were relatively accessible to me, and I read over and over again the classics of childhood—Peter Pan, Mary Poppins, Charlotte’s Web, Huckleberry Finn, the Oz books, Doctor Dolittle—that had once, so many years earlier, opened up such unforgettable worlds to me. Now they gave me a second chance, a second wind of pleasure and beauty. But of all the children’s books, I returned most often to The Wind in the Willows. I found myself occasionally totally overwhelmed by it. Once, I remember, I broke down entirely at a particular passage describing Mole and his house. I cried and cried and could not stop.

Recently, I pulled down my copy of The Wind in the Willows, which had remained on the bookshelf unopened once I had regained my ability to read, and tried to track down what it was that had created such a shattering reaction. After a brief search I found the passage I had been looking for. Mole, who had been away from his underground home for a very long time exploring the world of light and adventure with his friend Ratty, one winter evening is walking along and suddenly and powerfully, with “recollection in fullest flood,” smells his old home. Desperate to revisit it, he struggles to persuade the Rat to accompany him:

“Please stop, Ratty!” pleaded the poor Mole, in anguish of heart. “You don’t understand! It’s my home, my old home! I’ve just come across the smell of it, and it’s close by here, really quite close. And I must go to it, I must, I must! O, come back, Ratty! Please, please come back!”

The Rat, initially preoccupied and reluctant to take the time to do so, finally does visit Mole in his home. Later, after Christmas carols and a nightcap of mulled ale in front of the fire, Mole reflects on how much he has missed the warmth and security of what he once had known, all of those “friendly things which had long been unconsciously a part of him.” At this point in my rereading, I remembered exactly, and with visceral force, what I had felt reading it not long after I had started taking lithium: I missed my home, my mind, my life of books and “friendly things,” my world where most things were in their place, and where nothing awful could come in to wreck havoc. Now I had no choice but to live in the broken world that my mind had forced upon me. I longed for the days that I had known before madness and medication had insinuated their way into every aspect of my existence.

Rules for the Gracious Acceptance of Lithium into Your Life

1.     Clear out the medicine cabinet before guests arrive for dinner or new lovers stay the night.

2.     Remember to put the lithium back into the cabinet the next day.

3.     Don’t be too embarrassed by your lack of coordination or your inability to do well the sports you once did with ease.

4.     Learn to laugh about spilling coffee, having the palsied signature of an eighty-year-old, and being unable to put on cuff links in less than ten minutes.

5.     Smile when people joke about how they think they “need to be on lithium.”

6.     Nod intelligently, and with conviction, when your physician explains to you the many advantages of lithium in leveling out the chaos in your life.

7.     Be patient when waiting for this leveling off. Very patient. Reread the Book of Job. Continue being patient. Contemplate the similarity between the phrases “being patient” and “being a patient.”

8.     Try not to let the fact that you can’t read without effort annoy you. Be philosophical. Even if you could read, you probably wouldn’t remember most of it anyway.

9.     Accommodate to a certain lack of enthusiasm and bounce that you once had. Try not to think about all the wild nights you once had. Probably best not to have had those nights anyway.

10. Always keep in perspective how much better you are. Everyone else certainly points it out often enough, and, annoyingly enough, it’s probably true.

11. Be appreciative. Don’t even consider stopping your lithium.

12. When you do stop, get manic, get depressed, expect to hear two basic themes from your family, friends, and healers:

·         But you were doing so much better, I just don’t understand it.

·         I told you this would happen.

13. Restock your medicine cabinet.

Psychological issues ultimately proved far more important than side effects in my prolonged resistance to lithium. I simply did not want to believe that I needed to take medication. I had become addicted to my high moods; I had become dependent upon their intensity, euphoria, assuredness, and their infectious ability to induce high moods and enthusiasms in other people. Like gamblers who sacrifice everything for the fleeting but ecstatic moments of winning, or cocaine addicts who risk their families, careers, and lives for brief interludes of high energy and mood, I found my milder manic states powerfully inebriating and very conducive to productivity. I couldn’t give them up. More fundamentally, I genuinely believed—courtesy of strong-willed parents, my own stubbornness, and a WASP military upbringing—that I ought to be able to handle whatever difficulties came my way without having to rely upon crutches such as medication.

I was not the only one who felt this way. When I became ill, my sister was adamant that I should not take lithium and was disgusted that I did. In an odd reversion to the Puritan upbringing she had raged against, she made it clear that she thought I should “weather it through” my depressions and manias, and that my soul would wither if I chose to dampen the intensity and pain of my experiences by using medication. The combination of her worsening moods with mine, along with the dangerous seductiveness of her views about medication, made it very difficult for me to maintain a relationship with her. One evening, now many years ago, she tore into me for “capitulating to Organized Medicine” by “lithiumizing away my feelings.” My personality, she said, had dried up, the fire was going out, and I was but a shell of my former self. This hit an utterly raw nerve in me, as I imagine she knew it would, but it simply enraged the man I was going out with at the time. He had seen me very ill indeed and saw nothing of value to preserve in such insanity. He tried to deflect the situation with wit—“Your sister may be just a shell of her former self,” he said, “but her shell is as much or more than I can handle”—but my sister then took off after him, leaving me sick inside, and doubtful, yet again, about my decision to take lithium.

I could not afford to be too near someone representing, as she did, the temptations residing in my unmedicated mind; the voice of upbringing that said one should be able to handle everything by oneself; the catnip allure of recapturing lost moods and ecstasies. I was beginning, but just beginning, to understand that not only my mind but also my life was at stake. I had not been brought up to submit without a fight, however. I really believed all of the things I had been taught about weathering it through, self-reliance, and not imposing your problems on other people. But looking back over the wreckage brought about by this kind of blind stupidity and pride, I now wonder, What on earth could I have been thinking? I also had been taught to think for myself: Why, then, didn’t I question these rigid, irrelevant notions of self-reliance? Why didn’t I see how absurd my defiance really was?

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.

Years 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 endless questioning finally ended. My psychiatrist looked at me, there was no uncertainty in his voice. “Manic-depressive illness.” I admired his bluntness. I wished him locusts on his lands and a pox upon his house. Silent, unbelievable rage. I smiled pleasantly. He smiled back. The war had just begun.

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.

The 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.

We all move uneasily within our restraints.