A Season in Hell (15 page)

Most of us know at least one such story. We also know others—especially with the advances in technology—of people who were kept alive by machines way past the point of humanity. But we have means now to detect when someone is brain dead—which they did not have in the days when Tracy tended her child. And it seems to me that this is what’s crucial.

My dear Barbara M. recently suffered a similar situation with her mother, Ruth. During an operation for a problem of the digestive system, the surgeon found cancer and took tissue for biopsies. Ruth’s doctors, being human, were uncertain: five of them seemed to feel there was little hope; the oncologist urged chemotherapy; the nurses, whom the McKechnie children placed trust in (because they had developed a relationship with Ruth), also seemed to oppose it. But no one made open suggestions or spoke directly to the problem—Ruth’s children had to depend on innuendo and facial expression. Chemotherapy was started. But Barbara, uncertain about what to do, sank into an anxious depression, having, on the one hand, an ardent desire that her mother recover and, on the other, a fervent desire to protect her from pain. And Ruth was in great pain. The doctors put her on high doses of painkillers, which rendered her unconscious.

When Barbara asked my opinion, I could not urge her to pull the plug, despite her mother’s pain and the humiliation and indignity of her bodily state. I had become unsure. Barbara remained in a state of high anxiety for days, until she learned that Ruth had cancer throughout her body—her liver, bones, and pancreas—and that her surgeon placed her chances for recovering even from the original surgery at ten to fifteen percent. Only then, and with extreme grief, were her children able to make a decision to stop the chemotherapy. When the doctors told them that all of Ruth’s systems were failing, they stopped the respirator and the intravenous feeding—everything but the morphine. The doctors said she would live only an hour or two, but Ruth clung to life. Two days after they removed the respirator, after a three-week ordeal, she died.

My children faced even greater confusion, for all the doctors were convinced I would die, yet none could say with certainty what was wrong with me or that whatever it was was lethal. And in fact, I was not riddled with cancer; I did not have cancer of the brain, as some doctors assumed. I was not doomed to death; it only seemed so.

Unsure about what was wrong with me, the doctors debated my treatment among themselves. The newest and youngest member of the gastrointestinal group, David Ilson, urged giving me dialysis. There were sufficient medical reasons against this, but in time perhaps they felt there was nothing to lose. I had no personal relation with any of the doctors who treated me (my primary oncologist was not one of them), nor did any of them later speak with me regarding the coma, but these physicians were as dedicated and careful as one could wish. I remember one older man, a nephrologist or urologist, who came to my room a few weeks after I woke up to tell me he was recommending that I not continue dialysis. Since I had decided that if I had to continue it, I would end my life, I was greatly relieved: he had, essentially, given me back my life (however temporarily). But what moved me about him, what I remember still, was his delight at the fact that I did not need this miserable treatment, that I would be freed of it. And in fact, the dialysis had turned the trick. Soon after my first treatment, I began to wake up. I had been in a coma for twelve days.

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.