A Season in Hell (16 page)

By this time, all my veins were blown. I needed a port. (I kept remembering Roz fingering hers, saying, “At least I have my port,” as one might say, “At least I have my Star of David,” or my cross, or talisman, or eagle feather.) But I did not want a port, and the nurses discouraged me, saying they became infected and caused more problems than they were worth. Yet there were no veins left in my arms that could take an IV. (After a few days, four at most, a new site must be found for an IV. My veins had been used so often that they were flattened; the minute a needle entered them, they burst. The IV nurse had to puncture me again and again, searching for a vein that would hold. This situation has continued; I don’t know how long it takes veins to regenerate, but all my more recent hospitalizations have been terminated prematurely because my veins could no longer hold an IV.)

At S-K, they could not send me home, and even the doctors only halfheartedly urged a port on me. Finally, lacking an arm vein, they put the IV in my foot. But the veins in the feet are tiny and the needle hurts; also, because I could not keep my legs still, the needle kept popping out. Each time this happened they had to start a new IV. Nurses and doctors reprimanded me several times a day, urging me to keep my leg still. When I told them I couldn’t, they did not believe me. I have since found out that certain kidney problems can cause uncontrollable leg movements, but even the kind kidney specialist did not know about it when I thought to ask him. My constant movement was particularly damaging during dialysis. I underwent dialysis twice after I regained consciousness (or so I believe; the first time I was only half-conscious). During the second procedure, the leg movements had begun, and the exasperated technician said they had wrecked the treatment. However hard I tried, I could not keep my leg still. I found dialysis horrible, perhaps partly because of this, and I determined that if I had to undergo it for the rest of my life, I would kill myself. At that point, my life had little to recommend it anyway. Helpless, in agony from my esophagus, and unable to read or write or even think, I had little reason to welcome a future.

When the delighted kidney specialist appeared and told me that he had decided I did not require dialysis, I was tremendously relieved and in some way turned around. He gave me a reason, not to live, but at least not to die. I took a deep breath and began to think more positively. I asked the kids to resume daily delivery of the
New York Times
. But that led only to a fresh hell, as I discovered the next morning that I
could not read
. The letters shuddered under my eyes; I could not make them out. Appalled, I said nothing. My brain had been damaged, I decided. In a state of utter dread, I remembered my alternative: if I could no longer read or write, there was no question: I would kill myself. It did not occur to me to question my eyesight; after all, only two weeks before, I had read easily with my reading glasses.

Finally, I meekly brought up my difficulty with a doctor, who said eyes are sometimes affected by a coma. Indeed, an S-K eye doctor said I just needed a new prescription for reading glasses. Like my hearing, my eyesight had declined another level; I might be sixty-two years old, but my body was now five or ten years older. With the new glasses, purchased as swiftly as Isabelle could manage, I could read! No brain damage after all. But I could not concentrate well enough to do the Sunday crossword puzzle.

Perhaps a week or ten days after I was moved upstairs, the hospital sent around a physical therapist, who worked with me for about twenty minutes several times a week. She was young, efficient, and mechanical; she made no personal connection with her patients—not at least with me—and had no affect whatever. I am sure that to her I was just one more helpless elderly woman, but I have since met so many warm, devoted, caring physiotherapists that I wonder if she was in the wrong field. Still, she did her job. She urged me to walk holding on to a walker. Hating this, I preferred to walk alongside my wheelchair, supported by it, while my nurse or one of the kids (usually Jamie) pushed it down the hospital corridor. The corridor paralleled the outside of the building, dividing the bedrooms, which were on the outside wall, from the nurses’ stations and doctors’ rooms and the kitchen and toilets and other facilities in the windowless core of the building. There were shortcuts through the core, but we rarely took them. The walk around the perimeter was too long for me at first; when I tired, I would sit in the wheelchair and be pushed back.

One day, Rob showed up with a pair of purple-blue high-tops, and I burst out laughing. The style was appropriate for a three-year-old, I said, and since that was a little beyond my present skills in walking, the shoes would be something to grow into. He was right in his choice, though; I walked much better in those shoes than I did in slippers or the low-heeled pumps I had asked Isabelle to bring in for me. Grotesque as they are to my eye, I still wear them on days when I am going to do something tiring, like visit a museum.

Hooked up to an IV, I was being fed that way, since swallowing was intolerable. But the doctors began urging me to eat. I thought they were mad or callous. Did they have any idea how I felt? They explained that I could probably now go home, but not until I could maintain myself off the IV. That meant I had to eat. After a few days, I understood what they were saying. If they had couched it in reasonable terms from the beginning, instead of uttering it as a threat, I might have understood sooner. But perhaps not. My understanding was not great. By now, they had weaned me off Dilantin but were giving me phenobarbital, and the room often whirled around me as I sat there, largely because of this drug. I also took ulcer medications, and perhaps some others I don’t recall.

I wanted to go home, of course. But I could not get food down my gullet. It was entirely too painful. So I began to drink the enriched protein drinks that come in cans. These had been offered to me earlier, when I was starving after the radiation, but I loathed them too much to drink them. An American invention, they of course are loaded with sugar, typical of a nation that puts sugar in baby food, commercial salad dressing, and even toothpaste. I had strongly disliked sugar from my late teens and used it only in iced tea (which I rarely drank) and the vinegar in which I marinate cucumbers. But now I loaded a glass with ice, held my nose, and drank the damned stuff. I found the chocolate flavor the least plastic-tasting and could tolerate it if it was icy cold. I was a stick when I began, but I boasted to the doctors that I was gaining weight. The nurses who weighed me every couple of days confirmed this. I don’t recall what I weighed then, but it was too little for a person of my height and bone structure. When I got up to about 110, still very thin for me, they said I could go home. But this time I did not look forward to homecoming with joy, with faith that I was going to recover my strength and resume my old life. I wanted to go home because I was more comfortable there, and I had access to my things, and I hate hospital beds. But I had nothing else to look forward to.

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.