My oncologist visited me only once during this time, at the very end. He did not seek out my children when he left, but they spotted him and ran after him as he walked toward the elevators. When they caught up, he was pleasant enough but told them little. He explained that the doctors were not sure what had happened to me. Possibly, he suggested, I had had an allergic reaction to the antibiotic. Rob blamed the medical establishment for that, but the oncologist shrugged. One out of 250,000 people was allergic to cephalosporins, he said. How could they predict? By the time I was told this, the figure was one out of 400,000. I do not know which, if either, is correct.
But in conversations since, he has explained to me that reactions like mine simply do not occur in cases of allergy. Allergies may cause a rash, swelling of the mouth or other organs, and some life-threatening symptoms, but not brain seizures, which I was having constantly. He now hypothesizes that whatever caused the brain seizures also killed any cancer left in me: in other words, he is suggesting that the coma on which for a long time I blamed my subsequent problems was actually responsible for my survival of cancer. Since he did not describe the nature of what could have caused the seizures, I cannot quite understand the logic of this, but I assume there is some. Moreover, he said, people don’t survive comas like mine: I was on advanced life support, without which I would have died. People who suffer such brain seizures do not as a rule recover. Everything is a mystery.
On the twelfth day of my coma, early in the morning, a nurse called the children to say I had shown slight improvement; my eyelids had flickered. I might be starting to wake up. Excited, they tore over to the hospital, but I was dead as a stone. During the next day or two, they could see I was still having brain seizures. I think they lost heart. Then one day, I heard their voices. My eyes were closed; I could not open them: perhaps they were glued shut by oozing matter. I could not see the children, but I heard them, and I said, “Hi, kids.” They crowed hellos. I wondered why they were so happy.
The fragmented memories I retain come from this period: waking up hearing the children, seeing Gloria standing by my bed and hearing her question, the sense that there was something in my throat (it was the respirator tube), seeing Beth Sapery enter the room, the doctors and their morning interrogations. Reading over the children’s note saying I thought Renny Griffith was “Daniel,” I was confounded: I don’t know any Daniel. Nor do I know any John in charge of the James Joyce Quarterly, nor any man by that name important in the Joyce Society. Jamie insisted I had seen John Lennon in the great beyond, but she was the one who had stood for hours in front of the Dakota, grieving for him, not I. I do remember “seeing my own mind,” as I told Carol. It had to do with levels of consciousness.
My friends believed I was “conscious” when they came to see me after I awoke from the coma, yet I have no memory of these visits. My only memories are the fragments I included in the previous chapter, all that is left of about a week’s events after I “regained consciousness.” I hypothesized that there are two levels of consciousness—consciousness and self-consciousness—and that without the second, there is no memory. We are conscious in infancy and young childhood, yet we remember only a couple of vital moments, if anything, because we are not conscious of ourselves as separate people, as people watching ourselves act, hearing ourselves speak. Only when one is self-conscious is there reliable memory; this is not to say we don’t forget—forget far more than we remember—but the forgotten time is not a dark hole, as it was for me in the intervals between my few memories. And sometimes the right clues can summon up a forgotten item. But I am sure that nothing will bring back my dark lost time.
At some moment as I moved between unconsciousness—although I was not formally comatose anymore, I cannot call my state mere sleep—and consciousness, I saw the inside of the top of my brain and understood that I was moving from one state to another and that the second state involved self-consciousness. I saw these states as if they had material being. It was an extraordinary sensation, one that aroused wonder in me even as I felt it, and for a second or two after I awoke, I remembered it. I retain some kind of visual trace memory of it still, but it is fading.
Another event I do not remember is a visit by Bella Abzug on the same day the coven (and others) visited. Apparently, I said, “Hello Bella!” with great pleasure but did not even greet my coven sisters. They reproach me for that to this day. They laugh, but they bring it up so often, and so reprovingly, that I know I committed a major sin. But what can I do? I have told them that they are family, and family doesn’t warrant a special hello, whereas Bella was a guest, and did. I have told them that Bella was a major figure from my younger years, when I followed her exploits in the newspapers, silently cheering her on, whereas I did not know about them until I was older. But whatever I say cuts no ice with these unforgiving dames, who insist that I betrayed my preference for Bella over them—although I love them profoundly. They enjoy torturing me with it. Bella, of course, knows nothing about it.
Soon after this, I was moved to a private room upstairs, with round-the-clock nurses the children had hired. It was on my second or third night upstairs that I fell out of bed. At this time, I was still not conscious, or at least I have no memory of days or nights, remembering only moments. After I was moved upstairs, the regular morning visits began in which the doctors asked me where I was and what year it was. I didn’t really care about the date but I remember giving the question of where I was great thought. I knew, with certainty, that I was north, that is, north of my apartment, perhaps in the Bronx or White Plains. I finally answered Yonkers. I don’t know what symbolic value north has for me (Memorial Sloan-Kettering was actually south of my then apartment) or why I thought I’d gone in that direction. At least I didn’t think I’d gone west.
Rob recalls me lying there silent, refusing to answer the doctors; he thought I was unwilling to admit I didn’t know. He was probably right. But even after I was able to answer, he remained worried about me. Jamie and Barbara, who are both optimists as a rule, simply assumed I would be all right. But Rob, more pessimistic, was gripped by a new anxiety. The doctors had warned that I might have suffered brain damage during the seizures. They had warned that if I did wake up, if I did not have cancer of the brain, I might be an idiot, or might not be able to speak: nothing could be predicted. Each day after the doctors left, following their interrogation, the children would again explain to me where I was and what year it was. My inability the next day to remember these things suggested that my brain had indeed been damaged. Thus, Barbara’s cheer when I announced that Clinton was President. Rob continued to worry for months, even after I slowly regained old abilities. Not until April, when I began to revise Our Father for the final time, was he sure that I would recover completely. (In fact, I do not believe I recovered completely, but I think what I lost was brain speed, not depth. It is probably difficult, though, to assess one’s own loss of intellect.)
I did not hold on to much. They told me I’d been in a coma. Sometimes I understood that. Finally, I asked them to bring in a calendar, a big one, and mark the days I’d been comatose. Maybe visual evidence would impress it on my brain. They pasted a calendar to my tray table, but each time I glanced at it, it seemed new to me. It remained incomprehensible for a long time. Even after I could retain the words and could parrot, “I was in a coma for about two weeks,” I did not comprehend what I said. Nor do I know how to explain my lack of comprehension. I knew the facts, but I had no experience of them. I was like a child who learns a multiplication table by rote; I could say 49-56-63 without having any notion of what actually constituted 49 or 56 or 63 of anything, or what their relation was to 7.
I did not think much about this; I noted it and waited for it to pass. I did not feel anything. I did not want to feel. I was afraid I would go to pieces. For my situation was dismal. I was helpless; like a tiny infant, I could not hold my head upright on my shoulders. I could not sit up by myself; each time I tried, a nurse would run over
and pull me up. She would have to do this every half hour or so, because I kept sliding down, having no muscles to hold myself erect in the bed. Not only could I not get out of bed, but I could not lower myself to the toilet: a nurse had to sit me down and help me up. The bewilderment I felt about this humiliation (no one explained), and the quiet hysteria building in me from fear and confusion, converged into rage about the most utter helplessness I had ever felt. I had hated being a child because I hated being dependent; now I was more dependent than a three-year-old, and I did not understand why. The kids probably explained to me that muscles atrophy when they are not used, that Charlotte had urged the nurses to move my arms and legs while I was comatose, but I was hooked up to too many lines and connections to make moving my limbs feasible. Besides, of course, everyone expected me to die. But if an explanation was given, it did not sink in; I could not hold on to it, either.
Beyond that, my esophagus was a mass of ulcerations, and even drinking water caused me agonizing pain. I had a constant hard itching across my back, which frequent back rubs by the nurses did not relieve. Between the pain, the helplessness, and the lack of any other ability, my soul was in despair, but I did not allow myself to feel that. Though despair lay under everything, I never let it erupt into my surface life. What I did was sleep, as much as I could. I did not really want to see people or talk; I wanted to escape.
I was so sunk inward that I did not even think about my children. It was clear that they didn’t go to work—they were at the hospital every day—but I never asked how they were surviving or whether their jobs were in danger. Nor did it occur to me to ask how they had paid for the ambulance, or who was paying the nurses—although the money would have had to come from them. Jamie, who worked for Outward Bound, told me recently that she really did not function in this period, and because she wasn’t working, she just kept taking money out of the bank. In time, of course, she must have run out. I imagine the same happened to Rob, who held two jobs, working with language and computers at (then) Bell Labs and teaching linguistics at NYU. Barbara, who was going to school, had part-time jobs, but these could not keep them afloat. None of them ever complained or indicated to me in any way that they had problems. And somehow they survived, without any help from me.
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 loath
ed 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.
A Season in Hell Page 12