Nothing Was the Same (2 page)

Moods are contagious; they spread from those afflicted to those who are not. It is rare for even an experienced clinician to remain unaffected by a manic or depressed patient. For those who do not have the protective cloak of professional training, or who are personally involved, it is next to impossible to maintain equanimity. Moods are too insinuating, too persuasive: despair begets despair; suspicion and anger give rise to paranoia and rage. Concerned disengagement is the Holy Grail at such times, but obtaining and holding on to such a state is difficult; to remain impervious to provocation flies against all odds and is scarcely reasonable to expect from human nature.

In the early years of Richard’s and my relationship my moods still lurched about. I was not manic or depressed in the same full-blown manner I had been when first treated for my illness—lithium saw to that—but now and again I would be swept up by a light mania, high-flying and captivating, which would then spend itself downward into a short but dangerous, often highly irritable period of depression. Brevity in itself buys no protection. Graham Greene observed that a Mediterranean storm may be over in a few hours, but while it lasts, it is savage enough to drown a shipful of men. Such is the ferocity of moods. I could live with my mercurial moods, but it was not clear that someone else could, or should.

Richard, new not only to love but to the day-to-day realities of the illness that came with that love, brought unique strengths to the situation. He was clinically and scientifically knowledgeable about manic depression, and well aware of its genetic basis; he was not inclined to attribute to character what he knew to be disease. He was curious by nature, in the habit of careful observation, and he possessed a charitable slant on odd behavior. He was able to make me laugh in the midst of truly awful situations, and he loved me in a way I never questioned.

Once, during a fierce argument about something that seemed consequential at the time but that I cannot remember now, I picked up a small, fine-porcelain rabbit, a gift from my aunt, and hurled it against a wall in our bedroom. The rabbit, which had gone by the name of Snowball, shattered into tiny pieces of white, unrecognizable except for the better part of one ear, flecked with pink, and a tiny paw. Out of the corner of my eye I saw Richard, who had a stunned look on his face. Then he smiled. Seeking to avoid provoking me further, he turned his back to me and struggled to little avail to keep from laughing. The harder he tried, the more impossible it was for him not to laugh; I could see his shoulders shaking. “Too much lithium,” he said, after a long pause. “Your aim is off.”

It was hopeless. I tried to keep from laughing for as long as I could, but, in the end, the two of us fell to the floor in fits of laughter. My rage was no match for Richard’s wit. The next evening, when Richard came home from work, he gave me a small package; in it was a white ceramic rabbit, purchased at a local garden shop. Richard had written a note and tied it around the rabbit’s neck: “In memory of Snowball,” it read. “Who also went to pieces.” “Snowflake,” as we christened her, sits on my desk even now, unthrown.

Richard brought science, as well as humor, to bear on my problem with moods. He kept fastidious notes on everything he could measure: he rated and charted my moods against my serum lithium levels; my moods against my menstrual cycle; my moods and lithium levels against the seasons of the year; my thyroid lab values against the dosages of my lithium and thyroid medication. During one particularly turbulent period, he made morning and evening ratings of my moods and recorded them on a chart that eventually filled up with red and green and black dots. I clearly had become a project to him, one that was useful in figuring out patterns in my illness, as well as creating enough interest to keep his mind engaged. It built sufficient distance between him and my moods to help tame the beast.

On several occasions, Richard went with me to see my psychiatrist. He went to learn and, on occasion, to present his perspective on things; he did not go in order to second-guess my doctor’s reasoning. He respected my psychiatrist’s clinical acumen, and I never heard him suggest a change in medication or treatment plan. He did ask my doctor for suggestions on how best to handle my depression and agitation.

He took particularly seriously the importance of sleep in maintaining my mood stability. This was in part because he had studied and written extensively about the biology of sleep, but in larger part because he had observed firsthand what happened when I worked too late and slept too little. Mild mania had a way of feathering in, gently and imperceptibly, when I stayed up past midnight. Unless brought down by medication, which Richard first had to convince me to take, my high moods and proliferating enthusiasms quickly escalated into a serious clinical problem. Whenever I traveled to England or Scotland, or was many time zones away from home, I knew it was only a matter of time until Richard would call and ask me, “Are you asleep yet?” Nearly always wide awake, I would say, “Of course I’m asleep. You woke me up.” He would laugh and say, “Go to sleep.” Then, an hour or so later he would call again and we would make our way through a variation of the same conversation. It was nimbly done for the most part—neither badgering nor sharp-edged—and it made a critical difference in my getting better.

Yet, with all of this, he and I found my illness immensely difficult at times. For good cause, I had lived alone rather than have to deal with someone else’s reactions to it. At times there was no facile way to handle the realities of my disease. One evening when we were talking in his study, Richard asked me about the symptoms of neuroleptic malignant syndrome, a rare but potentially lethal reaction to antipsychotic medications. I thought at first that he was bringing it up in the context of a book he was writing for general psychiatrists—it was a syndrome he had studied and written about—but there was something about his use of words, “Were you to experience this” rather than “When patients experience this,” that put me on edge. Glancing around his office, I saw his black doctor’s bag in the corner of the room, sitting on top of a file cabinet. It seemed odd, although I had never thought about it before. Why did he have his doctor’s bag in his home study instead of at the office we rented together to see patients?

I asked him if I could see what he kept inside his bag. He was uncomfortable with the idea and only reluctantly took it down for me to open. There was not much inside—prescription pads, his stethoscope, a blood pressure cuff, a reflex hammer—but after rummaging around for a while, I found at the bottom of the bag what I think I knew I would find. Beneath the instruments of his practice lay a syringe and a vial of antipsychotic medication.

I didn’t have to ask. It was for me, in case I became manic. Seeing the syringe triggered memories of being forcibly medicated after I first had become psychotic years earlier. I felt trapped and, more fundamentally, betrayed. Turning around, I saw Richard, who, like me, looked as though he had nowhere to run. He was a husband but also a doctor, and he had to handle, as best he could, an illness he thought was unlikely to recur but might. It was a dreary illness, and both of us had had our fill.

After a long silence, he spoke with an unnerving calm. “Kay,” he said. “I don’t know what to do.” He was silent for a long while. “Medicine is imperfect.” He paused again. “I am imperfect,” he said. “You are imperfect.” He looked tired and sad as he sat down at his desk. Neither of us said anything for a long time, caught in the cold realities of the choices we had. Then he added very quietly, “Love is imperfect.” It was the most true, most chilling thing I had heard about dealing with the uncertainties of an illness such as mine. Richard was doing the best he could; we both were. Love was imperfect, but it was what we had.

Things changed radically for us, for me, that evening. I had to take it on faith that Richard’s intentions were good and his judgment sound. He never gave me lasting cause to think otherwise.

Over time, Richard and I discovered what it took for my mind to thrive and for madness to be kept at bay. It was hard-fought-for knowledge for both of us, imperfect and ferociously protected. My brain, as Richard explained it to himself and to me, was a delicate ecosystem, a pond of subtle alkalinities, which was kept alive through a finely honed mix of lithium and love and sleep, or, as he imagined it, “water grasses and dragon-flies, and a snail or two to tidy up.” Like Snoopy, whom he adored, he constantly rearranged his mental world, and mine, to make life more interesting.

From time to time, as the mood would take him, Richard would add new elements to my mental pond. Perhaps we should put in a koi someday, he said once, apropos of nothing, before we went to sleep. What did I think about adding a water bear, he asked on another occasion. Perhaps the koi and the water bear would hit it off, or perhaps the koi would eat the water bear. One didn’t know. We would have to think about it. Sleep and medication, love and work—all in exquisite proportion—were the koi and dragonflies of my mind. Richard tended this pond with a blend of science and whimsy, and, for as long as he was alive, kept it hale and safe.

Richard’s acceptance of me was deep, but it was not entire. At times he was enraged when I was ill; at others, he was bewildered or coolly distant. He was not, however, fundamentally judgmental. He conceptualized my illness as unbidden, painful, and something I tried hard to master. He believed manic depression to be a complex interaction of disease and self and did not reduce its complexity beyond what was necessary to try to understand it.

“Diseases or disorders have their own character,” he wrote to me after a particularly difficult time, “but they are present in a character. They do not take place outside of a being. Tuberculosis is only a bacterium unless it is in someone’s lungs. Similarly, a person’s character takes on the character of a disease. In your case things are even more complicated than with tuberculosis, because the disease is in your genes—thus you have never been without it and never will be. It is laced into you like a strand in a bowl of angel hair [pasta]. One does not fall in love with a gene but with all that is in the bowl, all that ever happened to it, and all that it affected.”

He described in his letter the debilitating treatment he had undergone years earlier for Hodgkin’s disease, an aggressive combination of radiation and chemotherapy that had cured him of his disease but at considerable cost. “We all long to be some whole we thought we were in the past, the self we were before becoming ill,” he wrote. “The diseases and the magic bullets have left their traces or scars but they are not a part of me in the way yours are. All the more so because yours are integral to your personality. Because of this I am luckier than you; I can love a manic-depressive in a way you cannot love a Hodgkin’s disease.”

Richard’s arms broke many falls for me. There were times, especially early on, when I would be hit by despair that had no good reason and gave no quarter and all hope would bleed out of me. “In the midst of seemingly unbelievable happiness with you, London, life, I find myself awful and dark and full of bleak thoughts and feelings,” I wrote to him when I was living in England. “It came on as I suppose it always does, with a sense of tiredness, then the long deep clouds and finally just despair and Why again? What’s the point? One’s born just to die; feeling good is unreal and only to mock and haunt one when ill. And for a brief while I thought, I have Richard, and if he were here he would hold me and make love to me, make me a cup of tea, give me a pill to let me sleep through the hard rough part. There are moments when you provide a minute of sweetness and belief, and then the blackness comes again. I shall be done for one of these times. No matter what I do, this illness will always bring me to my knees. I accumulate sorrow and grief inside, which only wait until the next time to come out again, to remind me how always tides go out once in.”

These times of reemergent depression were hard when they came, but our life together was far from grim. On the contrary. I was well and in high spirits most of the years I knew Richard. We had more fun than we knew what to do with. We worked together, saw patients in consultation, and collaborated on many papers and professional projects. We each in our different ways had a chaotic mind and we found a calming quality in the company of each other.

Richard often told me that my acceptance of and love for him created a world of stillness and constancy he had never known. This, given my temperament, I found astonishing. I suggested one day that surely he was being ironic, but he said he wasn’t. Perhaps, I asked, I was soothing only in comparison with his unfortunate marriage or other fraught relationships he had had? No, he said; there may be an element of truth in that, but not much. Possibly I acted as a stimulant does, in a paradoxical manner, to bring order to his desultory mind? No, he said, you create a quiet world for me. “Your stillness is a sanctuary,” he once wrote to me. “The passion may in time turn me to mush and is extremely attractive. However, it is the capacity for understanding or accepting that is most important. This acceptance is the amalgamating force that makes me love you.” It is strange, I think now, that love could soothe and draw together such different souls, and provide for them such hope, such happiness.

We complemented each other well. Richard was a reserved man, not someone who reached out emotionally to his colleagues as much as he and they would have liked. I think our relationship allowed him to know others in ways he had not, and once he got used to the idea, he liked it. “There is a loving of you that seems to ooze out to others,” he wrote to me early in his thawing. “Putting my arm around a scientist in my laboratory yesterday—it was a natural unnatural act. [Maybe] it is just latent, having been there all along, waiting for the right stimulus to set it free.” Although his first moves into a more emotional world were tentative—as he put it, “I find reaching out begins to dissipate with time and I start to revert to my regular tendencies of coolness”—he found that experiencing life more intensely was reward in its own right and that life could be found outside of a laboratory.