A Season in Hell (6 page)

The 5FU had no immediate effect on me, and my dread relaxed a bit. Not until the third day did they administer the cisplatin, following the same steps as before. (Cisplatin is hard on kidneys. My oncologist had said the process might improve my kidney function by thoroughly hydrating them, but this proved to be wishful thinking.) As the platinum entered my bloodstream, I sat alert, like someone being executed, waiting to feel the lethal charge: I had the sense that cisplatin was deadly and expected to feel its toxicity. But over the next days, I felt little except some twinges of nausea, which were quickly controlled by a new drug, Zofran. I began to relax. This business was not as bad as I had been led to think, I decided. So far it was nearly painless.

The patient is connected to the IV pole at all times, day and night, for six days or more; any clothing worn on the upper body has to be donned or removed around these tubes. I loathed wearing the loose, thin hospital gowns, which are humiliating and not very warm. The temperature at S-K is kept low, good for equipment, not patients. So after my first hospitalization, I designed a top with sleeves connected by Velcro strips, not seams, which could easily be donned or removed over the IV lines. My sister took the design to a seamstress, who made me tops from richly colored velours. I wore these throughout my hospitalizations—at least when I was conscious.

The IV pole is hooked up to a large plug in the wall, but the cable reaches far enough for a patient to go to the toilet or sit in a chair; one can disconnect it from the wall for several hours at a time and pull the IV pole down the hall to the kitchen, or take the elevator up to the roof lounge. The day I left, I saw several people, including a very young woman, standing outside the front door of the hospital, hooked up to their blue chemo boxes, smoking cigarettes.

Pleased at my relative well-being, I used the laptop I had bought especially for the hospital to write a few pages of the novel I was determined to finish before I died. But I had an unending stream of guests and so many telephone calls that I got little done. Rob bought me an answering machine to turn on when I wanted to get some sleep or was away from my bed.

A problem I face with every hospitalization is privacy. Private rooms are prohibitively expensive; at the modernized St. Luke’s–Roosevelt, for instance, fancy private rooms sit empty on every floor because they are priced so high. (At the time I was there, they cost $500 a day more than semiprivate rooms, which themselves cost around $2,000 a day before charges for medications or treatments. My health plan, Florida Blue Cross/Blue Shield, paid $80 of that.) At S-K, the system was entirely fair and sensible: the price difference was negligible, but private rooms, identical to two-bed rooms, if smaller, were reserved for those getting bone marrow transplants. Only when no such patient needs it is a private room available to others. But I did not object to sharing my
room
; what I minded was
television
. I craved silence, and I was often blasted by TV all day, and sometimes all night as well—some people
never
turn it off. Even if I complained and a nurse requested that it be turned off, roommates might keep it on while they (but not I) were sleeping. Most people refuse to use earphones. And in these enlightened days, nurses no longer order patients to do anything.

I am not a television hater on principle. Before my illness—and again now—I watch television on evenings when I eat dinner at home alone, and I enjoy a good movie or a drama from the BBC. But I cannot tolerate the intrusiveness of a TV running constantly, as is the case in some homes and ICUs. And for some reason, once I knew I had cancer, television repelled me. I couldn’t stand it and never turned it on, at home or in the hospital. During my illness, television felt like an instrument of oppression. My television-watching hospital roommates drove me to spend nights on the short, uncomfortable couches in floor guest lounges (ugly, uncomfortable places to sleep in, even in S-K), or harry the nurses to change my room, or threaten to leave the hospital entirely. The only roommate worse than a constant TV watcher is someone with Alzheimer’s who shouts or sings the same song or phrases for twenty-four hours a day—literally. I roomed with such a woman at St. Luke’s–Roosevelt, where men so disordered often held forth noisily in the hall outside my room all day long. However, I encountered no Alzheimer’s patients at S-K.

My first roommate during this first course of chemo was a sweet, mild woman who said she could not use earphones to watch television because chemotherapy had damaged her hearing. I didn’t know how earphones would impinge on damaged hearing, and I thought then that she was an anomaly. (But hearing
is
usually damaged by chemo.) Luckily, she did not watch constantly, and a doctor offered me the use of the doctors’ lounge, a narrow room with a single bed (usually unmade) and a long wooden table surrounded by wooden chairs. I used this room on several occasions but had trouble concentrating there. This is not unusual for me: I have trouble working anywhere but my own space. It was easier for me to write in bed than in the doctors’ lounge; maybe beds are interchangeable enough to fool my literary psyche-blockers.

This roommate had had several months of chemotherapy and had severe problems. I wasn’t sure whether her cancer was advanced or if her problems resulted from the chemo. I was dismayed—no,
shocked
—to find myself turning away from her and her problems: I disapproved of myself. It has always been a point of pride for me to confront the harsh or unpleasant, refusing to turn away from the ugly or uncomfortable. Yet now I was becoming the kind of person I scorned, someone who preferred smug complacency and comfort to acknowledging the pain in the world. But I didn’t want to know what was happening to this woman; I didn’t know what to expect from chemo, and she made me fear for myself. She seemed to be alone in the world except for a loving sister, who visited her faithfully every day and took her home after a couple of days.

The beautiful young woman who arrived next did not watch television at all—a blessing for me, not her: she was simply too depressed. Only twenty-nine, she had developed breast cancer a few years before and had a mastectomy, but now the cancer had recurred and was in her spine, liver, and stomach. She often called the nurses, to whisper that she was in pain and ask for medication. Suspecting that she was dying, I asked the nurses, who murmured that she was very sick. One hinted that she didn’t have long. Since nurses are honor bound not to discuss their patients, the fact that they answered me indicated how distressed they were. They were very kind to her, but she, locked in terror and sorrow and pain, was hardly aware of them (or me).

I was so appalled by her family’s treatment of her that when they visited, I tried to concentrate on writing or reading so as not to overhear. But it was impossible not to eavesdrop on her life to some degree—she was only a few feet away from me. The first night, her husband, a policeman, brought his cop friends to visit her. They were sweet and hearty but uncomfortable, and they left quickly. Her husband walked out with them, returning only long afterward.

The man—short, dark, well-built, handsome—spoke little; words were wrenched from him. When they were alone, he was very involved with her, not lovingly but in a power struggle. He kept trying to pin her down, to force her to say definitely if she was really going to make him go for psychotherapy or divorce him when she got home, as she had apparently threatened. She equivocated. I couldn’t tell if she feared to say what she wanted or if she didn’t know; perhaps she suspected she would not be going home. But she was clearly trying to pressure him.

After a while, the details filled in. The night she asked him to take her back to the hospital, he beat her up. She wanted him to express remorse; but he never did; he wanted to shrug it off, forget it. He was profoundly involved with his wife, but as a service: he was concerned not with her, but with his fate, his comfort. Though he did not want to go for therapy, he also did not want her to leave him. His wife was extremely important to him, but only as a means to his well-being, not in herself. It did not seem to have dawned on him that she would soon be leaving him permanently. He had to have been totally locked in himself not to recognize that she was dying.

She had two sisters, or foster sisters, who visited frequently and probably thought they were doing good. But they were busily, noisily cheerful—a common response to illness. People mean well and do not see how distancing insistent cheeriness is, how it denies another’s reality, denies a sick person the space or right to be sick and in pain. She tolerated or ignored them, asking often for her mother, who was really her foster mother. The sisters made excuses for the woman’s absence. It was a long trip for her, one said; the other scolded the patient for expecting so much. One day she burst into tears, crying that she needed her mother, wanted her. And finally, she appeared, a tired middle-aged woman, indifferent and uninterested, even annoyed, talking constantly about how busy and overworked she was, especially now that she was tending the sick woman’s son. The young woman was reduced to whining for a little love, but she did not get it. And when one day the husband brought in the little boy, a child of about eight, she barely spoke to him, completing the hellish family dynamic.

A doctor visited her a few times and vaguely discussed possible treatments, including a bone marrow transplant. She placed her hope in the transplant, mentioning it to each visitor at every visit. But he did not arrange for treatment; he dillydallied, as my doctors had until I prodded them. I conjectured that her doctor was reluctant to subject her to so painful a treatment when she had little chance of surviving it, that he was really waiting for her to die. But maybe I was making this all up. In any case, she was still in that bed when I left the hospital. I never saw her again.

No one in her world seemed strong enough to console the poor soul; she had to face death alone. Observing her with profound sympathy and identification—I, too, had felt myself an unloved child (but now I was loved!)—I considered my situation nowhere near as sad. I could face death with some equanimity: I was sixty-one years old and had had a rich, satisfying life, if also one of intense suffering. But I believed that some of my suffering was caused by my own intensity, my fierceness and volatility; I had made everything hard for myself. Yet I had also, slowly and stumblingly, created the life I wanted. I had known what I wanted when I was ten, known it with a clarity and passion that I felt could not and would not be thwarted, although I had gone off track and for nearly two decades lived a false life.

But I never forgot my path, never completely deserted it. I craved knowledge of all sorts—of literature, philosophy, history, art, music,
life
. I wanted to feel easy with that knowledge, and write out of it and my principles and taste. I hoped to be published but never expected to make much money from my writing (just enough to live on, I dreamed, not knowing then how rare even that was). I wanted to travel all over the world, to have all sorts of sexual experiences with all sorts of people, and to have cultured sophisticates for friends. I imagined an elite who lived on a higher cultural plane than others, whose conversation was lofty, who had innate good taste, grace, and dignity. It never occurred to me to ask also that they be decent human beings. I wanted a town house on Manhattan’s East Side, with a black front door and a brass door knocker. And I had realized all my desires to some degree. Still, I had not had enough; I wanted more; I could never have enough. I had not yet been to Japan, or to South America….

Oscar Wilde said that there were two tragedies: not getting what you want, or getting it, which was worse. But I am happy I got what I wanted, despite the ironic character of fulfillment.

At fifteen, I had no desire for husband or children. I got them, as it were, by default, like any good girl of the forties. Yet now my children were my greatest satisfaction, my greatest pleasure, my greatest love. And they were grown. I grieved over not seeing or touching them again, not knowing what would happen to them, but not over leaving them helpless and vulnerable in a world in which no one would ever love them as I did—like my poor neighbor. If I lived longer, about all I could give them was my pleasure in their existence. It was ironic, I thought, that two things I never thought to want when I was young—children and good friends—were two of the three essential elements in my life, the third being my work. The unwished for, the unexpected, turned out to be the greatest blessing. Pure luck.

Pondering again the randomness of fate and the sadness of that poor woman’s lot, I ached to talk to her, to help her in some way—but how? Who did I think I was, that I could help? No one could help a woman who had never been loved and was now dying. Like my own mother, she was beyond consolation. Still, I knew that it sometimes helped simply to listen to people—I’ve done a huge amount of listening in my life. So I did try several times to start a conversation. But I could not penetrate the isolation her sorrow cast around her.

On the other hand, if I was in some ways more fortunate, in other ways we were the same, she and I. Death is death, we both faced it (she a little more closely) alone, as everyone does. I, too, longed for my mother to come and comfort me, yet I knew that alive, she would have been unlikely to offer me comfort. My mother was steeped in the suffering of her childhood; she saw any illness or pain of mine as an act of willful aggression against her, causing her, who felt she had already suffered more than any other human being on earth, even more agony. Sliding into the bitter self-pity that (it seems) mothers can always provoke, I decided it was just as well my mother was dead, so she did not have to deal with my illness and I did not have to clutter up my heart with rage against her. Still, night after night, lying there unable to sleep, I tried to reach her, calling on her silently wherever she was. I could not feel her: she had turned her face away from me.