My indifferent manner continued to cause anxiety in the instructors. I did not care. Doing the job they did, they should have known more about the condition of the people they were dealing with, should have been more sensitive to it even if no one had bothered to inform them beforehand. But in truth, none of the patients seemed in the least upset by their tactlessness—except me.
In the end, after sitting through the entire miserable performance, I asked for a demonstration of head coverings and was told they knew nothing about them. I had sat through this grotesquerie for nothing! The only good thing to come out of the session was the bag of makeup I was later able to distribute to Cary and Isabel, Barbara and Jamie, and any other visitor who wanted it.
Again, the drugs caused me no immediate pain, but when the six days were up, the doctors refused to discharge me. They said my white count was too low. They asked me about bowel movements. When I told them I had had none for five days, they acted as if this was an extremely serious problem—yet they offered me no help with it; I started to worry and drank the prune juice Jamie had brought me. Two days later, the doctors let me go home. (Throughout chemotherapy, I suffered from excretory problems, moving regularly and swiftly between diarrhea and severe constipation, with no modulation between states. Drinking prune juice was touchy, because the constipation might be on the verge of becoming diarrhea, which prune juice exacerbated.)
Home again on Monday, September 7, Labor Day, I poured bath oil in the tub, tuned the radio to WNCN (still a classical music station in those days), and luxuriated. Rob and Barbara came and made me a pot of delicious chicken soup, which I was able to eat. But a few hours later, I had a painful gastric attack, took several doses of Mylanta over a period of hours, and suffered explosions of diarrhea. I woke from sleep, choking and coughing up blood. Calling the emergency number, I was told to phone again the next day. I continued to bring up blood, and that afternoon the doctors told me to come in to Urgent Care.
Again, Rob took me to the hospital. The Urgent Care doctor—not the sweet one this time—acted as if something very serious had occurred but would not tell me what. He put an oxygen tube in my nose, at which I wept behind the pink curtains, drawn after they left. This was it, I thought, the beginning of helplessness and indignity, the most horrid part of dying.
I lay there for hours, listening to conversations between doctors and their patients, struck once more by behavior I had noticed in my roommates. Most people do not question their doctors but simply accept what they say. Doctors propose horrendous things, and people just nod. This shocked me, since my automatic response when a doctor ordered something, even something relatively innocuous—a bone scan, an X-ray, a CT scan—was to ask why it was necessary and what information it would provide. Once informed, I rarely challenged an order.
When a doctor said to a man in the next bed, “I’m going to have to operate again—we’ll try to put a tube between your esophagus and your stomach. Let’s get your wife in here again to set up a date,” the man simply said, “Yes, Doctor.” In other hospitals, I heard doctors tell patients they would have to remove a kidney, or perform some painful procedure. But even the woman told that her kidney needed to be removed did not question the need, did not ask, Why do you need to do this, what will you discover? Will this help the pain? Will this help heal me? Will I die if you don’t do it? She never asked, How will I fare with one kidney?
Patients simply nod. Men and women are equally passive in this situation, and so pervasive is this behavior that doctors unfamiliar with me often bristled when I questioned the purpose of a test or procedure, as if I were trying to balk or challenge them. They were used to passive obedience.
I do not think this passivity makes an important difference in the quality of medical care, because most of us (including me) are too ignorant to know if the explanation we are given makes sense or is true. (Why do I need a fourth chest X-ray in four days? To make sure the pneumonia is completely gone. Oh, okay. You already took blood twice today, why again? Oh, a different test. Okay.) But it does contribute to the arrogance and high-handedness of doctors. Unquestioned, they proceed like hollow gods. The great majority of my doctors, male and female, were informative, respectful, and kind. I can count on the fingers of one hand—well, two hands, but I’ve dealt with literally hundreds of doctors in the past five years—doctors who attended me even briefly who were surly or nasty or indifferent or arrogant. I found incompetence to be even rarer. Ignorance, however, is everywhere, and bless the doctor who admits it, because all doctors are ignorant.
But my reputation preceded me in my hospital stays; most of my doctors knew I was a writer, knew I had a certain repute: I was treated as a person of status. The situation for people without status was very different. With each new stay in a hospital, whatever hospital, I was again shocked by some doctor attending a roommate, or by one occasionally assigned temporarily, very briefly, to me.
On this day, the Urgent Care doctors were aloof and uncommunicative, verging on rude. On this day, as on many other days, I said nothing. I was sent upstairs, to what I discovered was the “heart” floor (there were heart monitors at each bed). It was dark by the time I got upstairs. A large staff of young, inexperienced doctors (who were often as brusque as their betters) was always on duty at night and on weekends. Two young doctors hooked me up to a machine that was new to me. These guys were sweet and humorous. When I asked what they were doing, they said pleasantly that they were hooking me up to a heart monitor. Why? I asked. They said I had had a heart attack. “What?” I cried. I asked them if they had compared today’s EKG with the one from my admission earlier in the month. S-K keeps tons of records (my S-K file is literally almost five feet high now), but doctors rarely read old records, and more often than not, the pertinent document is missing. They had not found my earlier EKG.
I informed them that I had not had a heart attack. (In those days, I thought I knew what a heart attack was like.) I said it had felt more like an ulcer attack to me. (When, in 1994, I did have a heart attack, I also thought it was an ulcer attack. So much for my astuteness. In my defense, I did not argue with the diagnosis the second time.) They stared at me, then at each other—with a wild surmise (precisely). It could be that, they agreed in some excitement. That might explain things, they said. What things? Well, the fact that my heart was beating strongly and steadily. They gave me an ulcer medication, and when, two days later, I demanded to be sent home, they let me go. I still take the medication they gave me then.
The day I left the hospital, mouth sores had developed again. In August, they had appeared eleven days after the chemo started, and lasted thirteen days. In September, they began on the tenth day after the start of chemo, but began to ease ten days later. That I recorded these sores on my calendar this way suggests how large they loomed in my life, how painful they were, and how I dreaded them.
People continued to be assiduous in their attentions to me. Perhaps it was from duty, but they blessedly made it feel like affection. Carol visited me almost every day during my September hospital stay, often late at night, after visiting hours were over. S-K is relaxed about visiting hours, and no one ever tried to stop her. Carol was anchoring or reporting on the eleven o’clock news on NBC in those days and could not get away before midnight. She would show up at twelve-thirty, and the nursing staff would go into a frenzy. Female voices shrieked in joy: “Carol Jenkins! Carol Jenkins!” I became a minor celebrity in several New York hospitals because of her visits, for Carol is one of the most beloved women in the city, as anyone will discover who walks with her down city streets.
Rob, Barbara, and Jamie came constantly. Barbara was so attentive and loving that my nurses thought I had two daughters. Esther and Charlotte, Linsey Abrams and Ann Volks, were also faithful visitors. Every day I was in the hospital, two or three people came to see me, and when I got home, someone stayed with me every night. They did this because I asked them to; it was a measure of my desperation that I did so. It was in
credibly hard for me to ask anyone to do something for me, but during this period I did. By now, my white count sometimes dipped quite low after chemo, and I often ran a fever. When this happened, I would call Urgent Care and usually be told to come in. I was afraid that I might have to go there in the middle of the night, and I shrank from having to go alone. My old independent self was not even a memory. The new me dreaded trying to find a cab and riding across town alone, then lying in Urgent Care with no one outside waiting to hear how I was. But neither did I want to call people late at night, especially Rob, who lived in Staten Island and had a long journey into the city. That he always came without complaint did not mitigate my unhappiness.
The word went out among New York’s feminists, and several women, like Catherine Stimpson (not a close friend, just a generous-hearted one), called to offer themselves for night duty. Remembering how feminist historians had rallied around the historian Joan Kelly and her husband during her protracted siege of illness, I felt grateful on entirely new grounds for this great movement and its wonderful members. I recalled how nineteenth-century women always gathered like ministering angels to a sick one in their midst.
Barbara and Rob stayed with me on Friday night and again prepared a lovely dinner. But I could barely eat, and that night I had the first in a series of nightmares about poisoned environments: Rob and Barbara and I were in a gambling casino (an apt metaphor for the hospital, I decided) that was sinking into toxic mud that surrounded it. Throughout the rest of the dream I made frantic efforts to escape from this treacherous building with my children. I awoke, then drifted into a heavy, poisoned sleep. Yet I woke in the morning feeling refreshed and energetic, free of pain except for my poor cut-up mouth. Just feeling good was bliss after days of weakness, probably from my low white count. I sat in my bed drinking tea and gazing out at Central Park and a gorgeous sunny day, and a happiness more intense than any I had felt when I was healthy poured over my body like sunshine. An old friend, Herb Weiss, had called earlier in the week, offering to take me for a drive in “the country.” I decided to phone him that day.
I was eager to see where Herb’s “country” was: I wondered if he knew some secret back road to a rural paradise near New York City. Herb took me along the west coast of the Hudson, on the Palisades Parkway. And indeed, it was country. That Saturday drive was a treat. Still somewhat weak, I just sat back and relaxed, letting the light and the green of the trees and grass in the soft September day play on my eyes, my face. That drive affected me deeply. Before falling ill, I took great pleasure in walking city streets, observing the movements of life everywhere around me. But my illness had estranged me from the world. Each time I left the hospital, I would stare from the cab at familiar streets, busy as always with people following their usual course, but the sight did not cheer me. People, noise, activity—nothing dislodged my sense of disconnection, of being ill; nothing erased the hundreds of sick and dying people still visible behind my eyes. The concerns of normal people were not my concerns: my concerns were suffering and dying. When I got home I would lie on a couch in my study and read or listen to music, trying to blot out bad memories.
But in the rural atmosphere of Palisades Park, people were hiking. Herb and I agreed that since they were walking for the sheer pleasure of it, they were probably European. Americans, especially New Yorkers, exercise for goals other than pleasure—they run or bike, often against a stopwatch, working up an aerobic sweat. The hikers looked European—they wore dresses or trousers and hats, not sweats or spandex—and they proceeded in couples or small groups in a smiling, leisurely way along paths resembling the mountain paths they were probably used to. For just so do people walk in the Alps outside Geneva, walk and, when they pass you, bob their heads, murmuring, “M’sieur, ’dame.” (It is true, they are stiffer-mannered there.) Herb parked the car, and we got out and walked a little, not far; my muscles were weak. But while we walked, I felt part of the world again—not a patient, but a woman taking pleasure walking in the mountains on a friend’s arm. I, too, was part of the greenness and the soft day; whatever my eventual fate, I was alive now. I felt like a person, not a sick body.
During the next nights, though, I had more toxic dreams. Several centered on a friend who was going through a disastrous time. Her entire life had collapsed: while she was suffering from the inflammation of a long-standing psychological problem resulting from childhood victimization, the political situation in her country changed, causing her to lose her job. Her brilliant career vanished; without an income, she had to sell her house and, in the situation, accept a price far below what she had paid for it. In addition, her lover broke up with her. She was far away and I could do nothing to help her, but I was sick with worry for her. She was a frequent figure in my dreams throughout this period.
I was hospitalized for most of the first half of September, but during the second half, I felt fairly strong and free of pain, except for the mouth sores. I was able to stay out of the hospital. I am staggered by the realization that many people work through their chemotherapy. There was no month that I was strong enough to have held down a job with regular hours. The most I was able to do when I felt good was to write; I never even cooked. But my personal regimen included doing two things religiously: visualizing, and seeking pleasure in the moment.
To visualize, I used a tape Barbara M. had brought me; designed for cancer patients, it was narrated by a sweet-voiced man. It took some sifting to find this tape; Barbara and others had brought me several. Listening to them, I discovered that I was supersensitive about speech. I could not bear sharp or flat voices, unmusical voices, or Long Island accents; bad grammar or mispronunciations made me toss a tape out immediately. Militant imagery—frequent references to making war against cancer, attacking it, destroying it—also upset me. So did New Age music. The tape I ended up using had one war image and some New Age music (now, when I hear the pentatonic scale as used in New Age music, I feel literally nauseated), but the accent was cultured, most of the images agreeable, and the man’s voice a caress.
I needed the tape; I could not achieve the state I thought necessary without it, mainly because I cannot fully relax without help. And to reach the intense pitch of concentration required for visualization, one has to be fully relaxed (or so I believed). Once you are relaxed, the voice instructs you (first) to visualize your body fighting the cancer (the one military reference) and (second) to see yourself healthy. I could not bear to think in terms of fighting (strange, when I’ve been such a fighter all my life), because the thing I was supposed to fight was part of myself. So I visualized my white cells surrounding the cancer in an embrace and shrinking it, not in hate but as part of a natural process, transforming the cancer into something benign. Then I imagined—felt, really, so deeply was I immersed in these visions—a radiant blue light inside my body, emitting magical radiation that cleansed and healed everything it touched. I stayed with this for a long time, longer than the tape directed, and would have preferred to remain even longer, but guides are insistent. Like the audio aids in museums, they deny you any freedom: on to the next picture!
The next step was to see yourself in a place you love and feel good in, healthy and active. I put myself in various spots—a small boat in the Mediterranean, standing beside a man I loved, looking forward to our landing spot in Tunis or Hydra or Alexandria; alone, in Greece, at the temple of Sounion or in Delphi, stooping to drink from the Pierian Spring; or in the old walled city of Jerusalem, where I had had semimystical experiences. But no matter where I imagined myself, I always ended in my Berkshire house, lying on the chaise on my porch, surrounded by the gardens. I would force myself to rise and walk across the lawn to the pool, then step into its charmed, warm water to swim with strength and pleasure. But this part was harder to see.
The tape ended soon after this, and I often fell asleep before it finished. I believed it did not matter if I slept through part of it; I thought it entered my unconscious mind and was just as efficacious. I u
sed this tape twice every day, afternoon and night, at home and during hospital stays.
I actively sought pleasure in every day, a habit I had always believed in but rarely pursued. Even on days when I was weakened by fever or in pain, I would seek some source of satisfaction. When I was in bed, I luxuriated in the sight of the park from my bed; when I could eat, I would enjoy some delicious food. I was always elated by a stimulating discussion with a friend (something that occurs frequently in my life), when I was strong enough to have one; or a visit from someone I loved, or listening to music I loved. Rob had bought me a portable CD player to take to the hospital; Charlotte had brought me a foot-high box of Mozart CDs, which Carol complemented with an album of Billie Holiday CDs. I was absorbed in the books I read (if not, I did not read them). And sometimes a feeling of rapturous well-being would simply rise up and embrace me. I cultivated this sensation, something I had not known one could do. But until I became too ill, I had at least one experience of bliss every day.
Linsey Abrams gave me one of the books that enchanted me that month: Diana Souhami’s biography of Gertrude Stein and Alice Toklas, which also sketched the lives of other expatriate women in France in the twenties. Most of them had private means and lived with great style, which is to say they lived for pleasure. Some wealthy women in America did the same—Herb and I had seen the remains of Grecian columns on a platform along the Hudson that once figured in the social world of such a group; and the less affluent Edna St. Vincent Millay built a charming garden at Steepletop, which functioned as a salon.
A Season in Hell Page 7
