A Season in Hell

by Marilyn French

  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 ac
hed 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.

  Another bad thing about all hospitals is the food, which is not only tasteless but poor in quality. Cooking for so massive a number of people may inevitably cause tastelessness, but I do not understand why hospitals buy unhealthful foods. The importance of nourishment to health is a matter of common knowledge, so why do trained dietitians continue to buy Jell-O, plastic-like ice creams and desserts, cheap, gluey white bread, the castoffs of the vegetable markets, tasteless, tough cuts of meat? Then they cook the food into oblivion, removing any nourishment it might have had. This seems to be true in all hospitals.

  As it turned out, for me it did not matter how good or bad the food was: I could not eat. The kids and my friends brought me good soups from home or a restaurant, casseroles I could heat in the hospital microwave, lovely pastries, whatever I said I felt I could eat. Carol trekked across the city to a bakery that sold madeleines (which I could and did eat); Jamie prepared a casserole of macaroni and cheese the way I had made it for them when they were children. Rob was always searching out a soup or pastry I could get down. But I could not eat much, and as time went on, I could not eat at all. The smell of the chemicals on that floor has never left my body’s memory, and since my chemo treatments, I have never been able to eat in a hospital, any hospital.

  Chemotherapy has profound and lasting negative psychological effects on many people. I feel upset each time I pass Memorial Sloan-Kettering Hospital on York Avenue. Some people become nauseated passing the hospital where they were treated. My oncologist told me about a patient who became nauseated each time he laid eyes on his oncologist. One summer, on holiday, walking along a Paris street, he experienced sudden extreme nausea. Turning to his wife in bewilderment, he asked why he should feel this here now. Then, glancing back down the street, he recognized a man who had passed him a few seconds earlier, whom he had not noted then—his oncologist.

  On Monday, August 10, a week after entering, I was released from the hospital. My assistant, Isabelle de Cordier, fetched me and carried home my laptop and the bags of stuff I had somehow accumulated in six days. Go home, live normally, the doctors said. I was high: I had survived chemotherapy without serious damage! I had been through it and survived. I was home. I went upstairs and showered (hospital showers are ugly, uncomfortable, and unpleasant) and put on fresh clothes.

  But once the euphoria of being home had passed, I did not feel well. I tried to work. I had written a little over a chapter during my hospital stay; I had another five chapters to write to finish the first draft of the book. But I could not write; nothing came. My children came to make dinner for me that evening and gathered around me when they saw how weak I was. They scolded: I was not drinking enough, I was dehydrated, I wasn’t eating. But I couldn’t drink or eat: I could barely swallow, I didn’t know why. Was I having a psychological reaction, after six days of not eating? With the kids hovering beside me, I sat at the kitchen table, concentrating, trying to get water down. But it did not want to go. After another day of this, I called my oncologist, who told me to come in to Urgent Care. From there, on Thursday, I was sent back to the hospital.

  Urgent Care, S-K’s emergency ward, open only to S-K patients, was to become familiar to me over the next months, as I suffered from one or another “side effect.” The day of my diagnosis, my oncologist had mentioned some side effects of chemo, and new chemo patients get an information packet containing a statement about patient rights and printed cards listing the possible side effects of each chemical—a perfunctory way of meeting doctors’ obligations. But nothing can prepare you for what is to come. The simple phrases—mouth sores, mild nausea, diarrhea, loss of hearing, neuropathy, possible hair loss, temporary decrease in blood cell counts, and others—cannot convey the physical reality of what happens to your body. Nor does anyone inform you that these effects are often permanent. If you live, you live damaged.

  Still, what would we do if they told us the horrible truth? That cancer treatments damage the body less only than cancer itself, and that much of the damage is lasting, every oncologist knows. Simply to treat cancer means they must violate the primary tenet of their code: First, do no harm. But the harm varies hugely from patient to patient and with kinds of cancer. Radiation of the breast, say, affects the body less severely than radiation of the esophagus (which hits the spine and heart). I think the age of the patient is also pertinent: judging by my friends and acquaintances (among whom breast cancer is epidemic), treatment of breast cancer is nowadays tremendously successful in older women (and men), less so in younger ones.

  S-K’s Urgent Care is not like emergency rooms in other hospitals: because it is limited to S-K patients, it is smaller and less chaotic than most ERs. No one can enter it from the street. Patients are admitted and cared for with dispatch, as a rule. But like other emergency rooms, it offers little privacy.

  I have spent time in five different ERs but have never seen one that in the least resembled the TV version in degree of privacy and space or in noisily catastrophic events. I have never heard doors exploding open or seen a team of people frantically pushing in a trolley. When serious emergencies do occur, every care is taken to keep them quiet. And the governing ethos of the ER is not, as in television presentations, a matter of dominance—the brilliant doctor performing brilliantly, the noisy rebel upsetting the routine, the urgency of new cases mustering the entire staff. ERs are quiet and feel calm, if busy, whatever the reality. The main characteristics of ER nurses and aides are cooperation and amiability. The doctors vary in degree of indifference and disinterest (although in a small hospital like Fairview, the ER doctors tend to be lovely). Moreover, there are usually only one or two doctors in an ER, which is mainly peopled by nurses and orderlies.

  In Mount Sinai’s ER, when I was there, the central figure was a black male nurse who was especially solicitous of his patients and seemingly connected in a friendly way to every other nurse and orderly in the room. Beds were lined up against two walls, facing each other, with a walkway about a bed’s length wide between them. I was in that ER for hours, and because it was so crowded, I lost my cubicle whenever I was sent to X-ray or other labs. I was left in the walkway between the beds then, and I could see the activity at both rows of bedsides. Curtains were rarely drawn. At one point, a guard moved through the room, quietly asking all guests to leave. Later, I asked the nurse why that had been done. Were there visiting hours in the ER? I had never seen that before. No, he replied, but they had had an extremely urgent case at the other end of the room and needed to keep all extraneous people out, needed to concentrate on the patient. The room was not that large, and I had been there during the time this case was treated, yet I had not been aware of it.

  At S-K, each patie
nt, when summoned, is placed in a bed in a narrow cubicle formed by pink curtains. You can always hear (and, when the curtains are left open, see) what is going on with the three or four patients near you. The S-K hospital hierarchy is naked in this miniature world. Any white male you see (you see few) is a doctor (I never saw a female doctor in Urgent Care); any white female is a nurse. Black females are rare at S-K (I encountered only one black nurse in my visits there), but black men are common, walking in and out collecting wastes and delivering supplies.

  The nurses in S-K’s Urgent Care are even more spectacular than the chemotherapy nurses. They are not permitted to diagnose, but of course they do, silently; like nurses in other emergency wards, they know who needs care quickly and do what they are permitted to do. They perform the many required procedures with swift efficiency and intelligence. You may wait a long time for a doctor, but you feel safe once you are in the nurses’ hands.

  One or two of the doctors I saw in Urgent Care during the six months I used it were pleasant people who treated patients like human beings, but most were peremptory and dismissive. I also saw doctors who were not S-K attendings but men with private practices elsewhere and privileges at S-K, who cared only for their own patients. They made the S-K doctors look like models of knowledge and professionalism. Almost all of these visiting doctors were horrifying to watch and listen to, loud, bullying, arrogant, and impatient. I found this unforgivable, considering that their patients were not only sick but frightened by whatever crisis had brought them in.