Nothing Was the Same Nothing Was the Same Read online

  Many wish to believe that the odd is not so odd, the bizarre not so bizarre, and there is little changing of minds once they are set. There are only so many ways to understand the strange and disordered. The Greeks imagined gods to explain what they themselves could not. It is human nature to invent reasons for why the mind shatters, hope plummets, or the will to live dies. Scientific explanations are complicated and, for many, less humanly satisfying than visionary or religious ones. They are also less interesting than explanations based on planetary misalignment, toxins, or childhoods gone awry. There is a disturbing gap between what scientists and doctors know about mental illness and what most people believe.

  Some expressed resentment that I had had the advantage of financial security and supportive friends, colleagues, and family: What right did I have to complain? I could not possibly understand the real pain of mental illness. One colleague, hard-edged and drunk, in front of several of our junior colleagues, snapped that she thought because I had had a “privileged” upbringing, I had “no right” to write about the pain of bipolar illness; it was presumptuous. I found this outrageous. It seemed beyond the pale to have to explain to a professor of psychiatry that the pain of bipolar illness, like the pain of cancer, does not discriminate on the basis of “privilege.”

  At the end of the day, only Richard could make me feel less awful about the vitriol that came my way. Put the letters aside, he would say. Ignore the ugliness. If you must reread them, put them away for a week or so. He believed, from his own experience of having received stinging critiques on scientific papers, that criticism never seemed as bad on subsequent reading. Often he would call friends of ours and suggest that a group of us go out to dinner, knowing that warmth and laughter and shared tales of scathing reviews or wicked comments would lessen the hurt.

  After a particularly difficult time, Richard planned a long weekend for us on the Eastern Shore, thinking that the Chesapeake Bay, which I had loved since childhood, might pull me out of my discouragement and gloom. He insisted that we do nothing but eat, sleep, walk, and make love. No talk of work or illness, no obsessing over the rightness or wrongness of decisions made. No dwelling on hostile letters.

  I fell in love with Richard all over again that weekend and, as he knew I would, fell back in love with life. One afternoon, he went out for a drive and came back with a large cottonwood swan under each arm. Decoys, a male and a female, they had been carved by craftsmen on the Eastern Shore; they were beautiful. And, as Richard pointed out, swans mate for life.

  Despite the occasional criticism and second-guessing, most people were kind in ways I could not have imagined. Acts of cruelty or criticism have been far outweighed by innumerable acts of warmth and generosity. For every discomfort about the loss of privacy or fear of personal or professional reprisal, there has been a countervailing relief in the honesty.

  More than anything, I have been impressed by what people survive: the pain, the injustices of a health-care system that makes no pretense of fairness toward those with mental illness, financial ruin, violence, and most devastating, the suicide of a child, husband or wife, or parent. Everywhere I have gone, I have seen the wreckage left by mental illness and the resilience, inventiveness, and generosity of those who contend with it.

  This mixture of devastation and bounty is most obvious in students who struggle with mental illness. I had been particularly eager to reach out to young people with my book, in part because the student years represent the age of greatest risk—the average age of onset of bipolar illness is eighteen or so—and in part because I, at that age, felt so alone with the uncertainty and terror of my own manic-depressive illness. For students who are depressed or who have other mental illnesses, the contrast between how they feel and the energy and high spirits they observe in their fellow students is razor-sharp.

  Colleges and universities are incapable of handling the number of students with psychiatric disorders. Usually, administrative awareness of the problem is short-lived and ineffectual, stirred only by campus violence or the suicide of a student. Once the immediate crisis is past, there is little of a constructive nature put into place. On every campus at which I have spoken, students described to me not only the pain and the hopelessness they felt from their psychiatric illnesses, but also the lack of understanding they felt from their professors and college administrators; the lack of adequate health insurance; their fears about being asked to go on medical leave and not being allowed to return to campus; and how aware they are that their behavior is frightening and disruptive to their roommates (and the guilt they feel and are made to feel as a result of this). Always, I am struck by how far-reaching depression’s presence is: a secretary or a department chairman; a football player; the university president or a trustee; a music student, a premed; a business student in suit and tie—anyone might be affected.

  When I talk to students, so many of whom have tried to kill themselves, I usually ask them, Did you talk with your parents about this? Few say they have. They invariably ask me, Do you worry about getting sick again? How have you stayed well?, and I tell them, Yes, of course I worry. I worry every day. But it is good to worry. I tell them that it is hard to get well and that it is hard to stay well, but that it can be done. I find myself using Richard’s words: Take your medication. Learn about your illness. Question your doctor. Watch your sleep. Use common sense about recreational drugs and alcohol. Reach out to others. I tell them that bipolar illness is a bad illness to get, but that now is a great time to get it. Science is moving fast, and public understanding is better than it has ever been; they are lucky to have been diagnosed and treated early.

  I have been deeply touched by the courage of these students, struggling as they do to study and to compete, to love, and to stay alive. I admire how they have played the hard, unpredictable cards they have been dealt. They take less for granted and appreciate life more than do so many others of their age. I have enjoyed and learned from my time talking with these students over meals, in seminars, after lectures and before. There is a magic in being trusted with the stories of their lives, and if I had nothing but those days and evenings in their company, I would rest content and have little qualm about having made public my private nightmares and weaknesses.

  Students have reached out to me and to their fellow students with generosity and ideas. Medical students at the University of California, San Francisco, for instance, who themselves suffer from depression or bipolar illness, set up a support group for other medical students and house staff with similar problems. To my great pleasure they named their group the Redfield Club and asked me to give a lecture in memory of a popular professor of anatomy who had taken his own life. After my talk, they presented me with a first-edition copy of Robert Lowell’s Life Studies. It was a profoundly thoughtful gift and, by no coincidence, contained several poems I had used in teaching over the years. “My mind’s not right,” Lowell had written in one of them. “I hear my ill-spirit sob in each blood cell, / as if my hand were at its throat… / I myself am hell.” I keep the book from the medical students on my desk, reminded of Lowell’s hell and theirs. I am reminded even more of the good that some can seize from pain.

  Most of my discussions have been with undergraduate, graduate, or medical students, but, because mood disorders often hit those much younger, I have spoken as well to hundreds of children and young adolescents with depression or bipolar illness. They experience the same pain and have the same fears as those who are older, but, because the illness is usually more severe in the very young, and because they cannot understand as much about their illness as those who are older, they have a particularly hard time of it.

  One afternoon, I went to a high school in Northern Virginia to give the commencement address. The school, which specializes in teaching students with severe mental illness, had a graduating class of nine. The auditorium was ratty—a far cry from those in the elite private schools that hold such sway in the Washington area—and it was decorated with a decidedly
non-traditional triumphal arc of black balloons. Each child had been to hell in his or her own way, and each had stayed in hell far longer than anyone should have to. Theirs was not a world of math tutors, lacrosse practice, and cello lessons. It was, instead, a world of pain, hospitals, psychosis, suicide attempts, and medication. It was also a world of grit, gallows humor, and little taken for granted. They were gutsy and admirable. The small band of graduating students marched to the stage to receive their diplomas, crosswise and out of step, to a scratchy tape recording of “Pomp and Circumstance.” I can count on one hand the number of times I have had to fight hard to keep from crying in a public setting. This was one of them. Mental illness is pernicious in the young. Courage in the face of it is remarkable.

  I was keenly aware of this when I talked with a group of children and adolescents in Colorado several years ago. They ranged in age from seven to seventeen and all suffered from bipolar illness. We talked about what it was like to struggle with depression and mania and to have to take medications with unpleasant side effects, how hard it was to concentrate and to study, and how it was nearly impossible to make friends and family understand. These were things they knew too well, too young. But we talked of hope, as well, and how one could live a good life with the illness. It was hard, but it could be done. I answered their questions as best I could. Then, as I was leaving, a young boy, perhaps seven or eight years old, came up to me and put his hand in mine. He looked up at me and asked, “Are you really okay?”

  I put my arms around him and felt him sobbing against me. “Yes, I am,” I said to him. “I really am. You will be, too.” He looked doubtful. I reached into my handbag, pulled out my key chain, and removed the plastic Bugs Bunny charm I had carried for years. I told him it was my extra-lucky charm because it had not just one rabbit’s foot, but four. A small smile appeared. I gave him the key fob and assured him that Bugs Bunny would bring him the same good luck he had brought me.

  I hoped that this would be true, but the world and his illness being the way they are, I was not sure that luck would carry him as far as would be fair.

  Six months after I first discussed my manic-depressive illness in public, Richard and I spent our wedding anniversary in Rome, where he was giving a medical talk and, as part of a bicentennial lecture series about John Keats, I was speaking at the American Academy in Rome. We had several days together of aimless wandering and evenings with friends and, on our anniversary, a romantic dinner on the rooftop of the Hotel Hassler, where we were staying. It was a sweet lull in the wheeling days that had become our lives. Late one afternoon, after a long walk by myself through the Borghese Gardens, I returned to our room, where Richard had been working on a paper. It was evident he had been up to something.

  “I got you some flowers,” he said.

  I looked around the room and saw nothing.

  “But first you have to find them.”

  His smile was broad, his mind afoot. I looked around the room again but still could see no flowers. The only place left was the bathroom, so I opened the door. Richard had outdone himself. The bathtub was filled with floating blossoms of white and pink and lavender. It was a stunningly beautiful sight. I looked at the flowers more closely; they looked suspiciously familiar.

  They were. The day before, the staff of the Keats-Shelley House had kindly sent me a beautiful bouquet of roses and lilacs to thank me for my lecture. Richard, while I was out on my walk, had removed the flowers from the vase, cut their stems, and set them a-sail on the water. It was low-cost and very Richard.

  He said eagerly, “Keep looking. You’ll need to get down on your knees for this.” Feeling mildly ridiculous, and wheezing because I’m allergic to roses, I got down on my hands and knees to explore the blossoms as they drifted in the bathtub. My hands were wet and cold and my knees soon sore, but I kept at it and finally discovered, attached by a paper clip and a rubber band to the stem of one of the roses, a pill bottle with a note inside: “Check the bed.” It was a hunt. Richard was in his element.

  After a prolonged search of our exceedingly large bed, I found a small red box. It was from a jeweler in Rome and inside, on silk, was an antique gold ring. Underneath one of the pillows was a note. “Thank you for the happiest year of my life,” Richard had scratched in his dyslexic hand. “I know that talking and writing about your illness has been hard. I am very proud of you—not only as your husband, but as your colleague.”

  The next morning, Richard dipped my new ring into the waters of the Trevi Fountain and then slipped it onto my finger, next to my wedding band. It would be with me when he could not, he said; it would lessen the hurt from the cool silences or sharp remarks that might come my way. After we returned to Washington and criticism did lay me low, Richard was wry and loyal and he brought me back again. When things went well, his joy was undiluted, and we hung the moon.

  We laughed and made love through those Italian days, and thought our happiness imperishable. It was a time of such closeness that even now I cast into those memories for assurance. I had Richard, we had each other, and it was enough.

  Time sped by without our believing that it could end. Love pushed back our fears that his or my illness might come back, that one of us might die. It was a blithe time, and it did not last.

  PART TWO

  LAST CHAMPAGNE

  Medical etiquette called for a

  physician to call for two glasses

  of champagne and to drink them

  silently with his patient when that

  patient was a medical man who

  had just passed any hope of

  recovery. The meaning of the

  champagne was understood: the

  need of awkward words obviated.

  —RICHARD DAVENPORT-HINES

  BROKEN PORTIONS

  Richard was thirty-three years old when he was diagnosed with stage IVB Hodgkin’s disease. This, in 1973, was a death sentence. A large tumor in his chest was growing rapidly; the cancer had already spread to his spleen, liver, and bones. Two vertebrae had disintegrated from the malignancy in his spine. There was nothing to be done, Richard said, except to read carefully through his life-insurance policies, write up the experiments he had been working on, and think of a way to say goodbye to his three-year-old daughter and his twin sons, born only months earlier.

  Richard’s colleagues insisted he fly out to the West Coast for a consultation with Henry Kaplan, the Stanford oncologist who had pioneered a radically aggressive treatment for Hodgkin’s disease. Over the next two years, Richard received massive doses of radiation and chemotherapy, which saved his life. He attributed this stay of death to the fearlessness and the restless brilliance of his physician. Kaplan’s “secular miracle,” as Richard put it, lost no wonder for him because it came from a doctor rather than an ancient faith or prayers. On the contrary, it intensified his childhood belief that science could do incomprehensible things.

  Richard caught the morning side of a fast-breaking wave in medical science, and he remained indebted to clinical scientists, especially Henry Kaplan, for the rest of his life. He regarded the nearly thirty years of life he had after his diagnosis of Hodgkin’s disease as a gift neither deserved nor undeserved, but an astonishing feat of medicine. He did not believe that the seeds of death left in him by the radiation were unjust. He knew what he owed to science, and he had an unassailable gratitude toward his doctors. Nothing changed those basic beliefs.

  Richard stayed well for twenty years. The second ten of these were ours, a decade of health that lulled us into believing that his past medical problems were truly past, not the determinant of our future. The next decade, however, defined more by illness than by health, established that the arrangement between his life and his death was a darker one. Kaplan’s treatment for Hodgkin’s disease had been brilliant but imperfect, as science at its frontiers so often is. Radiation, which cured Richard of his first cancer, was to come back three times: twice nearly to kill him and the third time to succeed.


  We knew such delayed damage was possible. Leukemias and other late-occurring cancers were not uncommon in patients treated with radiation; more recently, doctors had observed that a disturbing number of the Hodgkin’s patients who had been treated with high-dose radiation were also dying of “silent” heart disease. Because Richard had been a part of the early Stanford clinical trials, our internist ordered a cardiac stress test; it had to be stopped. The year before we got married, Richard was treated at Johns Hopkins for a 99.9 percent blockage in his left anterior descending artery, a vessel subtly referred to by cardiologists as the “widow maker.” Four hospitalizations later, Richard’s heart was again hale and fit and, for a handful of years, he had an easy health. We were more wary than we had been before but thought, without thinking well, that we had paid our dues for his earlier survival of Hodgkin’s.

  It was never to be that easy. In the summer of 1999, fast and without warning, Richard got very sick. His weight plummeted and he found it hard to breathe. He no longer was the alert, intensely curious man I had fallen in love with; rather, he was dull and disinterested. I scarcely recognized him. Richard was fading away quickly, melting like the Wicked Witch, someone for whom, when he was well, Richard maintained a strong affection.

  The scans ordered by our internist revealed tumors in Richard’s liver, rectal wall, and lungs. No one tried to minimize this medical reality, although, in an unthinking moment of whistling past the graveyard, I mumbled something about the advances being made by our colleagues in oncology. This seemed improbable even as I said it. Richard looked at me incredulously: there was little hope against tumors strewn archipelago-like, so far and wide throughout his body. Richard and I were optimists by nature, but not insensate.