Nothing Was the Same (7 page)

I think, until that moment—sitting in our car in front of our old house with its very small fish pond, watching the snow as it came down in great, beautiful flakes—I had not fully realized how wondrous laughter is, how fortunate we had been to have so much of it, so easily.

Christmas day was quiet and close. My mother was staying with us, and we had coffee and opened presents in front of the tree; the fireplace, now a source of mordant one-liners from Richard, had been cleaned and worked well. Richard gave me a pair of gold earrings from Newport, Rhode Island, with a note to wear them “in good times and in bad.” In the months, and then the years, to follow, I did exactly that. They became a bellwether of my moods and expectations: an amulet to act against bad days, a glyph of hope or delight during good ones. We had dinners with friends, and drove around our neighborhood looking at lighted Christmas trees in window bays, their joy up against the dark. It was a good Christmas, all things considered.

We saw in the new year with a finger of whiskey, shortbread, and a shiver of dread.

Ambinder had turned over Richard’s care to David Ettinger, a Hopkins specialist in lung cancer. He was to prove to be a very good doctor, open to the ideas of the scores of physicians and scientists we consulted from hospitals and laboratories across the country. Two of the scientists we consulted, Jim Watson of Cold Spring Harbor Laboratory and Bob Gallo, director of the Institute of Human Virology at the University of Maryland, had been friends of ours for many years. Jim contacted numerous scientists about their work, tracked down results from clinical trials that had not yet been published, invited me up to Cold Spring Harbor Laboratory to attend meetings on experimental cancer treatments, and introduced us to Judah Folkman at Harvard, whose treatment recommendations Richard and I believed prolonged Richard’s life by many months.

Bob Gallo, in addition to talking with scores of oncologists, gene therapists, and vaccine researchers, continued to grow—and to try to kill—Richard’s tumor cells in his own laboratory. He also introduced us to Jeff Schlom, a prominent cancer vaccine scientist at the National Cancer Institute, who together with his wife, Kathleen, was unbelievably helpful and kind to Richard and me; they became close friends, in a class by themselves.

The winter and spring of 2000 came and went and brought with them a generally quiet rhythm to our days. We spent our mornings and afternoons in the room across from our bedroom; it caught the best of the light coming into the house and became a room of our own, private and quiet and undisturbed. Richard worked on his laptop in a chair across from mine, and I read or wrote, did needlepoint, and watched the manuscript pages slowly accumulate for the book I was writing about exuberance—an odd topic, given what we were going through. Richard worked on scientific papers as well as on a short book,
Cancer Tales
, that he was writing about his experiences with lymphoma and lung
cancer
. In the evenings, we had dinner with friends or watched movies, or I would read and Richard would disappear into his study to work, often into the early hours of the morning.

Going to Hopkins for Richard’s appointments with Ettinger usually shattered the calm of our daily world. We were anxious driving there, anxious while we waited, and anxious, if not distraught, once Ettinger had spoken to us. We spent a great deal of time at the hospital. While Richard was getting his bloodwork and scans done, I worked on a needlepoint tapestry of entwining tulips that I cannot, now, bear to look at. Our time in the “infusion” room, where Richard received his chemotherapy, was better, and after a while, it did not seem so alien: Richard listened to Harry Potter books on tape and I read or did my needlework, we held hands, or we talked with other patients and their families.

Life unfolded, as it will. Richard continued to feel reasonably well during the spring of 2001, although his scans showed slow growth of the tumors in his lungs. At some point, it became clear that the chemotherapy was having no effect, so we pursued experimental treatment options. We spoke to a vaccine expert at Georgetown University, who said that Richard, because of his recent bone marrow transplant, was not eligible for the vaccine trial. If necessary, however, he said he would apply to the National Cancer Institute for a compassionate use waiver. The NCI research protocols made it absurdly difficult for Richard to participate, however: Could he give
truly
informed consent? This seemed to us to be on the other side of
Alice in Wonderland;
Richard was a physician and a scientist, he had a terminal illness, and he had conducted clinical studies for thirty years at the National Institutes of Health. If he couldn’t give informed consent, who could?

Fortunately, our friend Jeff Schlom, who is chief of the tumor immunology lab at the NCI, offered to help Richard with the inordinately complicated application procedure. In the meantime, Richard and Ettinger consulted with Judah Folkman and decided to try his treatment protocol, which was designed to limit the growth of the blood supply to tumors. There were, we were discovering, many options on the cusp of viability. Richard noted wryly that he loved being on the cutting edge of science, even if he turned out to be that edge.

Richard went through the standard treatments for lung cancer and then the experimental ones. He lived a year longer than had been predicted for his type of disease, a year that was a gift of science and the hard work of people who did everything they could to save Richard’s life. But the tumors in his lungs grew; they grew erratically, sometimes not for weeks or months, but they grew.

Science and medicine cannot be pushed beyond a certain point. Richard lived longer than initially expected because of the remarkable scientific times in which we live. He died because there are limits to knowledge. We knew these limits well—we saw them every day in studying and treating schizophrenia and depressive illnesses—and we were generally philosophical about them, Richard more so than I. Both of us, in our clinical teaching, had often quoted Sir William Osler, the first physician in chief at Johns Hopkins. “In seeking absolute truth we aim at the unattainable,” Osler had said, but we must be content with “broken portions.” I wanted the unattainable. I wanted Richard to live. I understood the concept of broken portions, but I wasn’t resigned to it.

The first daffodils came. We drove to the Tidal Basin early in the mornings and took in the cherry blossoms and, on occasion, drove to Theodore Roosevelt Island. Life was often normal, although in some ways more wonderful, as we knew that it was not at all normal. We continued our long drives through Rock Creek Park, usually taking Pumpkin, our basset hound, along and listening to the songs of Stephen Foster and Paul Robeson. These were small, shared passions—the park, the beauty of Washington, Foster and Robeson—and they gave a sustaining happiness to our days.

That spring, Richard was honored by his colleagues on three different occasions, and each was a source of great pleasure for him. Although the tributes were triggered by his likely death, he did not find them melancholic events. On the contrary, he could not have enjoyed them more. The first, a scientific meeting on schizophrenia, was dedicated to him by the psychiatrists working in Veterans Administration hospitals across the country. In their remarks, his colleagues described him as a “towering” figure in psychiatry, science, and medicine. He reveled in the “towering.”

To a person, they acknowledged him for his pioneering contributions to understanding the brain and schizophrenia, for improving the treatment of schizophrenia and other psychotic illnesses, and for his generosity as a teacher of young doctors and scientists. At a dinner in his honor, the director of the National Institute of Mental Health, now provost at Harvard, talked about Richard’s groundbreaking work in psychiatry. Then he said, to great laughter, that Richard’s good papers had been published in
Science
, his rejects in
Nature
. Richard loved every minute of the conference, as he loved an equally generous and warm day of tributes from his colleagues at Columbia University in New York, where he held a faculty appointment and had collaborated with many of the physicians and scientists.

The National Institutes of Health paid him the unusual tribute of hosting an all-day scientific symposium in his honor, followed by a dinner at the Army-Navy Club. Many of the world’s most distinguished neuroscientists talked about Richard’s influence on their work. They talked, as well, about his grace and formidable energy, his generosity as a mentor, and his scientific creativity. Richard was deeply moved by these tributes. I rarely saw him cry during the years I knew him, but at one point during the remarks I saw tears that he could not hold back. Respect from one’s peers is not for sale, and Richard, of all people, knew this.

Richard wrote in
Cancer Tales
that those days of recognition from his colleagues helped him get through his illness and face the prospect of death. He knew that he was loved; he knew he had made a difference. He believed that everyone has an obligation to give back in life, particularly those who have had advantages. Listening to the heartfelt appreciation of so many of the scientists he had trained or worked with made him believe that he had given back as best he could. He did not write or talk much about death, but during this time of tributes he did:

Many people think about death every day. Call me shallow—many have—but it is a rare day when I concern myself with my own death. Long ago, I decided that if I paid my debts I would not worry about death. As I was growing up, it occurred to me that I had been very fortunate—I had been given a great deal and owed a large debt. I had been healthy, born and raised in the United States, was well-educated, privileged to go to medical school and finish my training. By the time I was thirty-three years old and developed Hodgkin’s disease, I believed I had performed a sufficient number of good deeds that I had paid back my debts—I might even be even. Being successfully treated for Hodgkin’s left me in the hole again. So I spent the next few years getting myself on the right side of the ledger. Certainly there were many times I did things that hurt others or committed sins of omission, but by my accounting I stayed ahead and feel I am still ahead. For me, not being in debt means I do not have to be concerned about death.

Richard’s views on death were not my own—death to me is unimaginable and horrifying—but he gave me an enviable slant on it.

R
AINING
S
TARS

Richard and I were given a long Indian summer before he died, a year beyond what we had banked on. After the round of tributes from his colleagues, Richard suggested a vacation in California. We had no talks to give or schedule to keep; we could relax, spend time with family and friends, and enjoy what we had. We could worry later about what was to come. It was a perfect interlude. Richard, who was still in reasonable health, sat on the deck of our family house in Pacific Palisades and worked on his laptop, or slept in the sun. In the mornings, I walked to the bluffs overlooking the Pacific or down to the ocean; in the afternoons I sat on the deck next to Richard and read.

Everywhere there were the defining scents and colors of Southern California: sweet jasmine, pungent eucalyptus; bougainvillea vines with their hooked thorns and papery blossoms of tangerine and fuchsia. The jarring blue hibiscus. Richard particularly loved the camphor trees, as I did the eucalyptus, so we drove the streets of the Palisades with the car windows open, inhaling and happy. On one of our daily drives, Richard mentioned that camphor had been used centuries earlier to treat mania. He insisted we stop to gather some leaves: “Just in case,” he said with a smile. I told him that camphor sounded better to me than an injection of the antipsychotic he carried in his black bag, so I gathered up an armful of glossy leaves. We put these in a basket to ward off madness and, as he pointed out, from that point onward not only madness, but also moths kept their distance. We saw friends and family, visited with colleagues at UCLA, and at night drove up the twisting streets into the hills behind our house and looked out on the lights of Los Angeles and the unfurling of moonlight over Santa Monica Bay. We made time stop for a while, and knew how lucky we were.

I fashioned a peace with California during that trip with Richard, one that was long past due. Los Angeles had always nettled me: I loved it, I disavowed it, I tried to put it behind me. I came of age in Los Angeles and, in that sense, it would always be my city: I first knew desire there, and madness; first made love and fell in love. Los Angeles was my original city of passion and disappointment: it was where my mind cracked and where, twenty years after the fact, I still felt a cringing shame for things I had said or done when manic. But it was also where I had first heard Schumann’s piano works and Beethoven’s
Missa Solemnis;
had, on a summer day, watched the first moon landing; first read Yeats and Lowell and Darwin. Nothing about Los Angeles was straightforward to me.

Great chunks of my life—great frightening, marvelous chunks of my life—were tangled in the passing of Southern California’s strange nonseasons. Washington would be my first home and my last, but California was the fitful, bewildering center. Only Big Sur remained uncomplicated to me. I loved it without reservation, and sought it out time and again because it was wild and beautiful, and because it could settle me in ways that no other place or person could. Even when I went mad in Big Sur, it was an ecstatic madness, an astonishingly beautiful voyage of my mind to Saturn and its rings and moons, and to distant stars. I walked off my unrest along the seacoast of the Big Sur: away, alone, and unbeholden. It was where I went for desolate beauty and for the belief that here, always, I would be at home. Southern California I kept at bay.

Now, with Richard gravely ill, my fractiousness with California seemed a waste of time and energy, not to say indulgent. Richard was dying, it was our last trip together to California, and nothing else was important. I had wasted enough of my life thinking about despair and insanity. It was not California that was wanting, it was me. Robert Frost wrote that when those who withhold themselves from the land yield to it, they find salvation in the surrender. This was true for me. I took a different view of the West Coast, more generous and circumspect; old discontents slipped away.

Richard did not need to surrender. He did not take on unnecessary battles in life, and this gave to him a strength in character I did not have. We loved our long days in California; we took them in and kept them close, wrapped our life in the June sun and the odd scents and surreal colors of the land around us. Richard had a way of giving back to me important things I had lost along the way.

One afternoon he and I sat on a bench overlooking the Pacific, lizardlike in the sun, talking about not much of anything important, only small and binding things. After a while he said, in an even voice, “We should talk about the funeral.” I tried to keep my voice steady, which was impossible.

“Yes, of course,” I said.

Richard’s suggestion was not entirely out of the blue, although in the sun and the quiet it felt that way. Earlier in the day, we had been to see Clarke Oler, an Episcopal priest who had been the rector of my church when I lived in Los Angeles. I had known and been close to Clarke for twenty-five years, and Richard was particularly fond of him. He had officiated at the religious service for our marriage at St. Alban’s Episcopal Church in Westwood, held some time after our civil ceremony in the Shenandoah Valley. We had turned to him to talk about the things we would have to do in the months to come. We talked specifically, at Richard’s request, about possible music and readings for his funeral.
Later
, as Richard and I sat on the bench overlooking the ocean, on an impossibly beautiful day, we continued our discussion of hymns and pallbearers and the ancient rites of final passage. No amount of God’s sun could take the chill from what we were doing.

We went as far as we could and then, thankfully, Richard said, “Enough of this. Let’s go shop for your birthday.” He suggested a store on San Vincente Boulevard we had been to before and, once there, asked to speak with the jewelry designer. “She likes moonstones and aquamarines,” he told her. “She’s a bit like them: moody and lovely. More moonstone than aquamarine.” He smiled his wonderful smile and caught the designer in his net of charm. And me, as always, all over again. He then traced out the design of the bracelet he wanted for me, one he must have been planning for a while. It was to be alternating cabochon aquamarines and moonstones, strung together by delicate links of gold. He wanted the aquamarines to be oval and the moonstones round; it was to be one of a kind.

The bracelet arrived in Washington several weeks later, a strikingly beautiful strand of mutable gray and pale blue stones. It was indeed moody, and it was stunning. Richard tried to fasten the bracelet on my wrist but could not; the clasp was too fine and his hand shook too much. So we christened it instead, continuing Richard’s tradition of dipping newly gotten jewelry in Italian fountains, gin fizzes, or the North Sea. This time he dipped it in a shot of Dalwhinnie, a single-malt whiskey we were partial to. “For us,” he said, christening the bracelet. “For you. For love.” I could not put the bracelet on then, or ever, without the help of someone else. It was an elegant string of stones, brought into existence by love, but it was not easy to wear. It was our life.

Our last summer was a good one. We returned from Los Angeles to find our garden lit up with a wild proliferation of fireflies at night and the Washington skies lit up with summer thunderstorms reminiscent of the
Dies Irae
from Verdi’s
Requiem
. Richard was able to eat steak and corn and peach cobbler, which gave us the illusion of greater health than he had, and we had long evenings of laughter and friendship. Those summer nights with our friends were the moon and the stars to both of us; they will be with me until I cease to remember anything. Our conversations leapt everywhere: from the misbegotten love affairs of our colleagues to scandals in science, from stem cell research to Thomas Aquinas. We talked about the elegance of the universe and how we thought the world would end. We talked on and on through the summer nights, taking in more wine than others would have said was good for us, and spoke of Rome and politics, of our families, and of sundry microbes, any of which would cause a thinking person to pray for a competence the government did not possess. These evenings of friendship were unrivaled times, tinged by the overhanging apprehension of Richard’s mortality. It was fierce and gentle friendship, and it made our way to his death more navigable, less lonely.

There was a fine-tuning of Richard’s and my temperaments during the years we lived with his heart disease, lymphoma, and lung cancer. Before, our differences had triggered sporadic tension; now our basic natures served us better. Our sensibilities and quirks evolved into something more shared and complex, more mingled. The intensity of my moods and periodic flares ebbed with time and with the seriousness of circumstance. Richard’s reserved ways changed into something more intense, outward, and nuanced. He became more responsive to the feelings of others, and held his emotions less close to his chest. He had always been physically affectionate with me, but now he sought me even more. When I came into a room, after even a short absence, he held on to me in a way I had not known him to do before. Just to feel. To sense. To draw upon.

Later, when he no longer had the strength to take a bath, he reached out to take in the world beyond him in newer ways. He would ask, after I had bathed, to breathe in the scents on my arms and my neck, to take in the smell of the honeysuckle or moss rose, lime blossom salts or eucalyptus. He had never done this before, and indeed had laughed at my many bottles and jars. Kay’s Excess of Scents, he would say to our friends: Why have one bottle when you can have seven?

Richard kept his essential privacy; he had been and would remain a private man. But he reached out more to other people. Acquaintances and colleagues saw the warmer side of him that I and a few others had always known. And now, when he reached out for me, vulnerable, I was glad that I could bring to him a calmer self. I was someone he could put his faith in, and it gave me pleasure. For so long, for so many years, I had needed him, leaned upon his love and judgment. Through him, I had rediscovered some semblance of my true North, and now he drew upon his gift to me. There was fairness in all of this.

The summer drew to a close in quiet ways. Richard felt well enough to work hard on his science and to see patients. I wrote and worked at Hopkins and looked after him. The tumor in his right lung grew.

In early September, the Pentagon and the World Trade Center were attacked. I was on an early-morning flight to Atlanta for meetings at the Carter Center; it took off forty minutes before the first hijacked airplane flew into the World Trade Center and landed twenty minutes after American Airlines Flight 77 had crashed into the west side of the Pentagon. By the time I arrived at the Carter Center, it was ringed by Secret Service cars dispatched to protect President and Mrs. Carter.

The telephone lines to Washington were choked, and it was late in the day before I could reach Richard. When at last we were able to talk, he described the eerie sight of hundreds of Washingtonians walking as fast as they could up Connecticut Avenue, briefcases in hand, talking into their cell phones and looking unmoored. I felt panicked at being so far away from him and from Washington, but I could not get back. No planes were flying, buses and trains along the eastern seaboard were moribund, and all rental cars and trucks had been taken within hours of Atlanta’s airport having been shut down. My only option was to rent a limousine, but even that would not be possible for two days. So I settled into obsessively watching CNN and trying to keep in touch with Richard.

The evening after the attacks, a few of us had a quiet dinner with President and Mrs. Carter. They were calm, philosophical, and tough. They spoke from their unique perspective on America about its strengths: the vastness of its lands, the inventiveness and resilience of its people. The weeks to come were to be shot through with the kind of straightforward patriotism they embodied that evening, a good and necessary thing. It was not yet the time for overdone and alienating nationalism.

The trip from Atlanta to Washington was unnerving. Flags were at half-mast everywhere, from Georgia to the Carolinas. The radio reported incessantly on the efforts to recover bodies in New York and Washington and described the fighter jets streaking over both cities; it rendered the grapplings of a nation in shock. I found it difficult to shake the images of an airplane slamming into the walls of the Pentagon. My father, a career military officer, had been posted there for many years. The walls could not have been ripped open. The building was unassailable. There were so many dead.

In Washington, Secret Service cars tore up and down Connecticut Avenue and, more ominously, patrolled Rock Creek Park and the National Zoo. Antiaircraft batteries were installed near the Washington Monument, and machine guns were everywhere one looked at National Airport. There was the near-constant sound of F-16’s flying overhead on their combat patrols. It was an intense time, but a good one as well. Our neighborhood restaurants were packed at night with Washingtonians seeking closer contact with one another. Richard and I went out with friends almost every night. People, even strangers, were gentler for a while. The city was vulnerable. We all were.

In the days and weeks following September 11, Richard became medically practical. He put together a medical kit for the house that contained antibiotics, antivirals, and epinephrine. He divided up reading for the two of us to do: he took anthrax and plague for himself; I was assigned smallpox and botulism. (When I made murmurings that I wanted plague, he laughed and said, “Fair’s fair. You got to choose the movie last weekend.”) We both read up on the psychiatric complications of antibiotics and antiviral medications, which were not inconsiderable.

The city of government pulled together its people and its agencies. Richard, who had conducted a large study with the Department of Defense to evaluate early treatment intervention in major psychiatric illnesses, was asked by colleagues at the Pentagon to help draw up guidelines for dealing with the psychological and psychiatric consequences of mass violence. At the end of October, on a beautiful fall morning, we drove to Airlie House in Virginia for a meeting put together by the departments of Defense, Health and Human Services, and Justice to frame the response of the federal government to the psychiatric casualties of large-scale terrorist attacks.