1993
FEBRUARY–APRIL
I WAS RELEASED FROM Sloan-Kettering for the last time on February 4, 1993. I have returned since only for day treatments—endoscopies, which I needed often in the years following my treatment—or to consult my neurologist or oncologist.
I went home. The children hired the same nurses who had tended me in the hospital—Ursula, Gay, and Yvonne. In hospital, I loved Ursula best; outspoken and forceful, she cared for me almost affectionately. But she behaved differently in my house, perhaps put off by a penthouse duplex with terraces overlooking Central Park. For whatever reason, she became sullen and opportunistic, attitudes that intensified gradually as I needed her less. Ursula, originally from Guyana, was married, with a teenage son and a younger daughter, but she never spoke of her husband, and rarely of her son. I had the feeling she had given up on them, but her daughter was central in her life. The girl was bright and talented, and Ursula was as ambitious for her as she was for herself. Like the other nurses, she was a student working toward an R.N. degree, and between chores, she pored over her texts. She was very intelligent and made high grades.
Gay, too, was from Guyana, but she had a very different nature. A late child in a large family, she was taken in after her parents died by siblings who treated her like a slave. She was not allowed to leave for school in the morning until she had put in several hours of work; her life was made hard in every possible way. Younger than my other nurses, she was a meek woman, whose pious servility I at first disliked. But as she came to trust me and tell me her story, I began to understand her manner and grew to like her very much.
Gay was married to a young man she regarded as her savior: loving her, he had “saved” her from her sister’s brutality and meanness. That alone made him her hero. Then he brought her to the United States and “allowed” her to attend nursing school. Her husband, however, was not essentially different from her sister, except that he used love rather than cruelty to enforce his will. Since she worked as a home nursing aide, she often had to spend evenings away, but he refused to eat if she did not prepare his meal for him. If she had to stay out late she had to prepare his dinner early in the morning, before work and her classes; and she could never go on a trip. He was helpless, incapable of using a dustcloth or a vacuum or running a washing machine, so in addition to working eight hours a day for me or another patient, going to school, and studying, she had to do everything in the house, walking long blocks (he of course took the car; conveniently, she could not drive) carrying heavy loads to the laundromat and from the supermarket.
There were other problems, but when I suggested she could solve them by negotiating with him, she demurred ever so sweetly. She loved him so much, she said, she didn’t like to upset him: he just couldn’t do this or that. I forbore to point out that she had exchanged one dictator for another. I knew she would discover this in time, when his behavior grew even more oppressive—as such behavior always does when unchecked.
It was Gay who had been supposed to be with me the night I fell out of bed, and for some reason, every time I fell down (as I did several times in the early months: one minute I’d be standing, the next I’d be on the floor), Gay was caring for me. This upset her horribly. Once, she cried out near tears, “You always fall when I’m with you!” as if some doom attended our connection.
Yvonne became my favorite. She was the one the kids had first approached, who had mustered the others to take care of me. An energetic person, enterprising and confident, she had been with me the first night after I left the SCU, a terrible night, she said. Unconscious, I was restless and in pain, constantly tossing and turning, and she had had to change my sheets and clean me up six times during the night. I had little memory of her in the hospital, because she was on duty mainly at night. She usually took night duty at my house, too (although she and Ursula sometimes switched shifts). She would prepare me for bed—standing beside me at the sink (lest I fall down), squeezing the toothpaste out of the tube for me (I could not even do that!)—and be there in the night. The nurses slept in my room on a fold-out bed. I was not supposed to get up without their help but was to call them—and keep calling them until they woke (which I was reluctant to do until my first fall).
Every night, when Yvonne came into my room, I would ask her what she’d done all day, and what her father-in-law had made for dinner, and how her little girl was, and what her husband was doing. I was interested in the lives of all three women who tended me, but Gay’s stories distressed me and Ursula’s rare references to her domestic life crackled with concealed bitterness and rage. Only her daughter and nursing made her happy—and getting good grades.
But Yvonne had been praised all her life. She was a loved child, and to those who are given, more is given: children lucky enough to be loved usually grow up into loving—and loved—adults. She was a lighthearted person, very smart and ambitious; her family was prominent in Haiti, but she had left, fearing the secret military force that had succeeded the Tontons Macoutes. In college in Haiti, she had majored in economics, but her highly intelligent Haitian husband, whom she had married in the United States, had persuaded her to give up the idea of an academic career for one in nursing. I didn’t know whether she was realistic in looking up to her husband’s intellect as she did, but his role in forging her future seemed suspect to me. Nursing is much harder work than teaching economics and has less prestige—but it pays better, at least at first. On the other hand, as a nonwhite foreigner, it is possible that Yvonne would have encountered severe barriers in an exalted academic field, and her husband may have known that.
She had had a child about five years before, and her husband was totally enamored of the little girl. Yvonne, too, adored her daughter, but she was jealous of her husband’s affection for the child. In speaking of this, she was very funny—not the least guilt-ridden about her jealousy (as most middle-class white American women would be) nor at all resentful of her daughter because her father gave her more love than he gave Yvonne (as many women would be). But as a result of his behavior, she adamantly, steadfastly refused to have another child. Like Ursula’s and Gay’s husbands, Yvonne’s husband would not help around the house. (I often say that the only creature in the entire animal kingdom who can’t take care of himself is the human male.) Yvonne worked harder than he: he was a welfare officer of some sort and worked an eight-hour day; she worked an eight-hour day (or night), went to school, studied, and did the housework and cooking and child care. When she complained, her husband sent for his father in Haiti. A wonderful cook and a meticulous housekeeper (as was Yvonne), who loved Yvonne and his grandchild and being with them, he made their lives a pleasure. Like Gay, Yvonne held nothing against her husband and was on the whole a happy woman.
Bright and ambitious, like Ursula, Yvonne worked hard and made good grades at school. Her tales of her busy days, the delicious and (to me) unusual meals her father-in-law cooked each night, and her adorable daughter’s doings calmed me as I faced going to sleep. Filled with joy and humor, like Yvonne herself, her stories were so ordinary, so quotidian, that they made me forget my situation.
My situation was grim. I remained on phenobarbital and was not able to stop taking it for fear of inducing the brain seizures it had been prescribed to control. The drug made me drowsy all day long, and dizzy as well: the room where I sat was frequently in motion. I still could not eat, but lived on Ensure with lots of ice, chilled watermelon, and Italian ices. I drank aloe vera, water, and herbal tea. I longed for carbonated drinks like seltzer or ginger ale, but they touched off agonizing currents in my esophagus. I thought then it was because of the ulcerations, but the ulcerations are gone now, and carbonated drinks still cause me extreme pain. Nor could I move alone, because of my weak muscles and dizziness; I needed help to do anything.
Beyond that, I was in a state of grief. This was a nonspecific emotion: I was grieving for myself, for what had happened to me. I had been traumatized by the events of the last months, althou
gh that word never entered my mind. Nor did I think about what was going on in my life (most unusual for me). I simply grieved.
A week after my release, a physical therapist came to me, sent by the hospital. Michael was militantly cheerful and personally seductive; he employed charm to keep his patients, especially elderly women. But I did not dislike him: his style was more agreeable than the mechanical style of the therapist in the hospital. He started me on exercises to help me regain muscle strength and enlisted Gay (who usually chose day duty, since she had to be home at night to feed her helpless mate) to make sure I did them twice every day, morning and night, with the number of repetitions he had ordered. He liked to give orders and tried to set up a hierarchy of command from him to Gay to me. Gay was of course compliant in this—as she would be in any tyranny. (Sad to say, the gentle Gays of the world can easily become dictators’ minions.) But I found it absurd. I did the exercises faithfully because I wanted to get stronger, not because Michael had ordered them or because Gay was counting. But I did them only once a day, in the morning. My noncomplicity in the emotions of the pecking order quickly ended Michael’s efforts at establishing a little kingdom in my house; I never had to frown, much less complain about it.
That same day, I had an appointment with my oncologist at S-K. Getting there was a major enterprise: Ursula and Isabelle put on their coats, scarves, and hats, bundled me up in a warm coat and the rest, assisted me into the elevator; I waited indoors, in the lobby, where I could be warm and sit down, while Isabelle and the doorman went outdoors and hailed a cab. When it arrived, I started outside. Isabelle opened the cab door, and she and Ursula helped me inside it. At the hospital, a doorman opened the cab door; Isabelle paid the driver and then helped me out, while Ursula went indoors and fetched a wheelchair. She wheeled me into the elevator and up to the fourth floor, Isabelle trailing alongside. I felt like a crone of ninety or more, slumped over in my seat (I still could not sit up straight), utterly helpless.
Although I had said nothing about it, and had concealed it even from myself, I was in a fury, and it all came pouring out onto my oncologist during that first visit. I was furious with him, quite apart from my condition. Upset by his negativity about the disappearance of the tumor, I was appalled that he had not visited me once during the times when I was hospitalized with fever, had come only once when I was in the coma, and then had not sought out my children. He had never once visited me during the four weeks after I woke from the coma; Bruce Minsky did, as did the sweet urologist whose name I did not know. I did not see why I should regard him as “my” doctor. That we had to wait quite a while before they wheeled me into his office only stoked my anger. By the time he entered, I was beside myself.
“I don’t know what I’m doing here!” I said, in a low, furious voice. “I should be seeing Dr. Kevorkian, not you!”
He turned swiftly to his nurse. “Call Psychiatry!” he cried in alarm.
“Why did you bother keeping me alive to leave me in this shape?” I continued.
But he was not about to deal with this crazy woman—as I suppose he saw it. He didn’t know me, had never known me, and was not interested in knowing me. He had his nurse usher me out of his office to another waiting room, to see a psychiatrist.
The psychiatrist, a woman in her late fifties or early sixties, was no more interested in me than he was. She asked me a few perfunctory questions, which I answered with equal shortness and considerable quiet rage.
“You’ll have to come back,” she said coldly.
“The hell I will,” I said with equal coldness. “You can’t help me.”
This first visit to S-K after my release marked a change in me as a patient. I was no doubt unfair to the oncologist (but not to the bored, superior psychiatrist) in blaming him for my state, but I had good reason to be furious with a medical establishment that had rendered me utterly helpless without ever trying to offer any explanation for the coma or my present state, any prognosis for my recovery, or any overview of my condition. It was after all, I thought then, the treatment they gave me that had caused my coma—iatrogenic, it had almost killed me. A simple apology would have been nice; an explanation of things would have been better. But I suppose they would have seen an apology as a possible admission of guilt, grounds for a lawsuit. Still, a doctor with even rudimentary empathy would have understood my terror and rage at the trauma of coma and of waking helpless. My oncologist’s terrified cry for “Psychiatry” only increased my contempt for him. Perhaps he feared I would attack him—how, given my physical weakness, I have no idea. The man was so out of things that on my next visit, he asked me why I couldn’t walk.
“You tell me!” I exploded. “Aren’t you the doctor?”
I never forgave him for any of these things, perhaps because I never told him why I was angry with him. I would not make that mistake with other doctors. My future dealings with the medical establishment were of another order of control and suspicion.
My daily routine in these months was as follows: A nurse would wake me about eleven, help me up to wash, then help me get back in bed and drink the tea she had brought me. Before the coma, I had drunk orange juice in the morning, but my throat could not tolerate acidic drinks now. Sometimes she brought me icy aloe vera, which was calming.
I would read the first section of the New York Times while I had my drink. Afterward, I did my exercises (which became more complicated and lengthy as time went on); the nurse watched, helping me count. Bathing was fraught, for both me and my nurse. I was so fragile and so bony and weak that getting into the tub was a major production. The nurse would draw the bath, then help me to step into it, holding on to me as well as she could. Sitting down was the most terrifying part, as she could not get a good purchase on me from outside the tub, and I had little control over my leg muscles. When it started to grow back, in March, I had to wash my hair in the tub, as standing under a shower was still too dangerous—I might fall at any moment, and the nurse could not get into my stall shower with me. I would wash it in the tub water and Gay (or Ursula) would rinse it with clean water poured from a pitcher.
The nurse helped me to dress. The first step was a light massage of most of my body, using a scented lotion or cream she heated in a basin of hot water beforehand. I thought this was designed primarily to make me feel better; I did not realize how wrinkled and dry my body was: I barely looked at it. The nurse would take from my closet whatever I pointed to, or sometimes she would pull out something that appealed to her. As I had when I was undergoing chemo, I wore pants and a sweater every day, but my clothes swam on me, which made dressing disheartening.
Then I would make my way proudly downstairs by myself—going up and down stairs (holding on to the banister) was the one thing I could always manage, for some reason—and lie on the couch in my study, gazing out at the park, and finish the newspaper. When I was not reading the paper, I was sleeping. I did not read anything else, nor did I write. I slept a great deal. I was always tired from the drugs and the whirling of the room. After the first month, I would move from room to room with a cane, practicing walking. I’d gaze out the window, examining the snowed-in cars or the bare branches of the trees or, later, the beginnings of buds. But nothing I saw aroused any emotion. The nurses were right behind me, or at my elbow, ready to grab me if I started to fall. But no care really could prevent it when it happened: I just went down. For some reason, I always fell in the bathroom, with its tile floor (most of the apartment was carpeted). And during the time I had nurses, I always fell when Gay was with me. I doubt there was any significance to that; after the nurses were gone, I still fell, usually in the morning and in the bathroom.
Lunch was usually an iced chocolate Ensure, with ice-cold watermelon or an Italian ice. After lunch I would usually nap. Guests came in the afternoons and early evenings. When I had no guests and was awake, I listened to Mozart on the CD player the kids had bought me, or to WNYC. I still could not tolerate television. Dinner was the same as lunch, I th
ink—I have little recall of meals during this period. I know I suggested a few things—scrambled or boiled eggs and various soups, for instance—only to discover I could not get them down.
Michael came three times a week; other practitioners also visited, including a doctor sent by Gloria, who had helped her change her diet after her bout with breast cancer. Sandra McLanahan, an M.D. who prescribes only natural medicines, suggested I follow a modified macrobiotic diet and prescribed, among other things, a tea of comfrey and chamomile to be drunk every other day. This proved to be the most calming and quieting drink I had ever taken.
One morning soon after I arrived home, I awoke to a new horror: I could barely move my left arm or either of my hands. Overnight, I had developed arthritis. I could no longer pour myself a glass of water, something I had been able to do for only a little over a week. It was too much. I nearly collapsed, feeling like someone who had fought off the onslaught of the ocean and managed to swim in close to shore, then was overwhelmed by a sudden giant wave. Helplessness heaped on helplessness. When I spoke to friends of the arthritis, I nearly cried.
In early March, guests’ names begin to appear on my calendar: I’d had appointments with visitors before that but had not asked Isabelle to record their names. The children, whose names are not noted, were with me much of the time. I went out only to doctors’ offices. During my first angry visit, the oncologist had told Isabelle to make another appointment for me a month hence. I had asked him to stop the phenobarbital, so he told me to have an EEG to check for brain damage, and to see a neuro-oncologist at S-K.
I had the EEG the next week and saw the neurologist two weeks later. At first, this man struck me as bordering on crazy, because as he read my records (from a then four-foot-high file), he continually hummed under his breath and occasionally davened.
He said, “Oh, you’re a writer. Doctors hate writers; they always say horrible things about us.” He told me his wife knew my work, and asked if I would autograph a book next time I came. I said I would. He said he thought I was a person of spirit—was that true? I said I hoped so. He said, “I was afraid of that.”
A Season in Hell Page 13
