“You don’t like people of spirit?”
“Not women,” he said calmly.
He wore a yarmulke, and I imagined his wife wore a wig or a kerchief and was forbidden to act on her own. But such a woman would be most unlikely to have read The Women’s Room. He also seemed too intelligent to have a meek, submissive wife. And aside from his humming and davening, he appeared too calm and contained and, somehow, amused, ironic, to oppress anyone. In the end, I found him a lovable man, intelligent and thoughtful. He was keenly aware of the limitations of medical knowledge and treated me with care.
My EEG showed considerable disturbance, but he was not sure whether this was brain damage or a result of the phenobarbital. I knew the drug helped me sleep, which I liked (having before my illness often suffered from insomnia), but I believed it caused the continual circulation of the world around me, which I wanted to stop. He drew up a schedule, graduating my dosage. I complained of having little feeling in my toes; he tested me, then said I had peripheral neuropathy, a common result of chemotherapy, and that it might get worse. It did.
On March 11, I saw the oncologist again. This was the visit during which he asked me why I could not walk. I felt he was just marking time with me until the tumor reappeared. He told me that when—if—it did, there was nothing more he could do for me. He prescribed pills for the arthritis but had no answer when I asked why it had come upon me just then. I felt unmoored in a sea of uncertainty. No one was taking care of my whole self. I felt that if no one saw me whole, no one could help me. Each doctor cared only about his specialty: the oncologist cared only about cancer, the neuro-oncologist only about nerve damage caused by cancer. I had not yet reached the point of doing something about this, taking my fate in my own hands.
I had been listening to the news on WNYC, following the events at Waco with a sinking heart, when I heard, on February 28, that the ATF and the FBI had surrounded the Branch Davidian compound. I cried out so loudly that the nurse came running into the room. In that instant, I knew that disaster was inevitable, that the impasse would end in some kind of fiery cataclysm—probably a shoot-out, with automatic weapons on both sides. For both sides were the same. I sympathize with those who blame the government for Waco, because it was totally unnecessary. The approach the government took was confrontational, seeking war, not negotiation. There was no need to surround the compound. Whatever was going on there could have been ended in a peaceable way. But the groups that blame the government think just like the government: it is showdown time, for all of them. Davidians, Christian militias, the government, all think alike, and the way they think—or rather feel, for very little logical reason informs their decisions—is what we have come to call macho: a mindless drive to impress with strength of muscle or firepower, a need to force an “enemy” to bow, a desperate need to prove one’s “manliness.” The ending of the Davidians was implicit that day and, for me, was never in question afterward, although it made me weep.
Barbara Greenberg came down from Boston to visit, and I asked her to promise me that if I was again in a dire condition, she would help me kill myself. She said she would in some hypothetical future, but definitely not now. She did not know, any more than anyone else, whether I would recover from my present state, but she had a more positive outlook than my doctors. I don’t know why in this period I fixated on suicide when I was with close friends. I never thought about it when I was alone, but when I was with intimates (not my children, though), I could speak of little else. It was as if I was trying to avoid my present state, a little after the fact.
The arthritis pills proved useless, so I made an appointment with a rheumatologist recommended by the oncologist. His office was near S-K, and I saw him the following week. All these visits were ordeals: the nurse would bundle me up, there was the rigmarole of hailing a cab, getting in and out of it, getting to the doctor’s office, undressing there while being supported by my nurse, then being dressed again and propped in a chair to hear the verdict. This examination was painful, because I had to lie nearly naked on a hard, narrow table to be X-rayed. The cold metal table pressed painfully into the now-protruding knobs of my spine. When the doctor announced that he would inject cortisone in my shoulder joint, I heard myself ask if it would hurt. Suddenly, I was aware that my entire physical disposition had changed. I had always been a stoic patient. For example, although I had had huge cavities as a young woman, I always refused Novocain, preferring the brief pain of the dental drill to the soreness and swelling of the anesthetic for the rest of the day. I had never shrunk from pain, never even thought about it. I had not feared pain.
But now I felt my body physically shrink away from the rheumatologist and his needle; I almost whimpered. My body bore a memory of pain that would be indelible.
I could not take ibuprofen, which helps many arthritis sufferers, because of its effect on the digestive system: mine now opened into ulcers at the slightest provocation. And the cortisone helped not at all. Even before he knew this, however, the rheumatologist prescribed steroids. I said I would not take them. He said I had to, they were the only medication that would help, that all his patients took them and got better. I refused and left. Later, I told the oncologist that the rheumatologist he recommended was a drug pusher and should be stopped.
Isabelle found me an acupuncturist. Elizabeth Call was a lovely young woman, and I was amazed by her demonstrations of the connections among body parts. She would push a finger in my torso near the belly and ask, “Does that hurt?” It did. Then, with one hand, she would press a spot on my foot and, with the other, press the spot near my belly again. “Now does it hurt?” It did not. Such connections seem to exist all over the body; the torso seems most profoundly related to the feet. I know various religions and medical systems use this connection symbolically, but I ponder its nonreligious meaning. Why the feet? After all, the way humans use feet is one of the latest adaptations our bodies made. That we put our entire weight on two feet, walking upright, is not a five-million-year-old development, like, say, the reptile brain, but more like a three-and-a-half-million-year-old one. So why should feet bear such significance? It’s interesting. Still, the acupuncture did not relieve the arthritis at all, which disappointed me greatly. Thinking it might be a painless way out, I agreed to a course of treatment, because I wanted it to work; I would give it a chance.
At the end of that week, the coven met at my house. I had the dinner catered by the same woman who’d prepared the food the disastrous night of the fire, and I managed to sit up at the table for most of the meal, if not to eat it. But after dinner, as we sat in my study, I reproached my friends. They were all sitting on the couch with me, touching me. I was crying. It is the only time I remember crying, at home or in hospital, in the post-coma period. I don’t recall giving them the details of my physical debility; perhaps I did, but I probably didn’t need to: they could see with their own eyes the wrinkled shell of a person, frail and shriveled and unable to sit up, walk, stand from a sitting position, or even sit down unaided; unable to use one arm or do much with either hand; unable to eat solid food or concentrate or find a peaceful, still space in any room. I blamed my condition on them.
“You kept me alive!” I raged. “What for! Why did you do it? Look at me now!”
By now they were crying too.
“Oh, bubby, we want you alive,” Esther wept.
Carol kept hugging me, tears on her cheeks.
“You know what we did? We made the same mistake people always make, Marilyn,” said Gloria. “We did what we wanted, assuming that’s what you’d want, never thinking what you might want. We’re sorry. But you know, we could always feel you present. I thought you didn’t want to go.” Gloria is always rational, always able to see the other person’s position. Blubbering, I hugged them and apologized for blaming them for what was, after all, not utterly in their control. They had no doubt helped to keep me alive, but divine as they are, they are not divinities. My kids were just as responsible, but I
never uttered a word of blame to them. I guess I was taking things out on the tough ones.
I told them I wanted to die, and they were appalled. Carol, especially, could not understand this then—although I think she does now. I asked them to kill me if I got sick again, and they turned a little green. They did not want to talk about this, and I did not pursue the subject.
During this period, I had thoughts and impressions, but my second brain, the one that is always conscious of what the first one is doing, was not working well. I had had a second brain since about the age of four, and at brief moments before that. It kept track of what I said and did and felt; it remembered, it paid attention and sent me messages that I had just sounded angry, or that what I was saying was offending someone, or that I had been crying a lot lately. I have referred earlier to this self-consciousness; I believe that much behavior and speech and emotion is largely unselfconscious—transient and without larger meaning to the self. I also think that people who were exposed to the ideas of Freud have a greater degree of this self-consciousness than those who were not. If you have aged relatives or friends, you perhaps have noted how direct and unselfconscious their behavior is.
I realize now that I considered suicide daily during this period. I had considered it several times in my life—in my childhood and again in my late twenties. For about a year—until I became tough—it was the only way I could imagine to get out of a hellish marriage. The sense of lacking alternatives that oppressed me then oppressed me now, and in the months after waking from the coma, I had to make a choice literally daily about whether I wanted to continue living a life that was essentially unbearable. When life is unbearable, one needs to own the alternative of not living. The idea of dying puts life in perspective, provides a needed balance. Killing oneself is so extreme an act that continuing to live seems easier. But knowing there is a way out helps you stay sane and enables you to face each day as a positive choice.
I made no move to kill myself—I did not at that time have the means to encompass suicide—nor did I think about finding any. Suicide was just there, in the back of my mind, as a talisman, a safety valve, a last resort. It may be a basic human way of surviving: I think of the various Beckett characters who say, “I won’t go on, I can’t go on, I’ll go on.”
My negotiations with myself continued until I was stronger and no longer needed the alternative of death to make life seem a positive course. I probably upset people with my talk, but it was necessary to me.
In mid-March, my calendar becomes crowded, mainly with doctors’ appointments, but also with visits by friends and business associates—my publisher, Jim Silberman; my accountant, Arthur Greene; and my investment counselor, Bill Reik. The business of life was resuming after nearly a year. Sometime near the end of March, I began the final revision of Our Father. My hands could not type, and I could not sit erect, so Isabelle sat at the computer, across from me, typing in the corrections and changes I read out to her from copy I’d edited with a pencil as I leaned back on the couch. It went slowly. I found I had omitted an entire chapter when I sent the manuscript to Jim; I had written the chapter in the hospital, on my laptop, and never transferred it to my hard disk. I found it ironic that I had written a novel in which a man lies in a coma, hovering between life and death, an experience I had not had when I conceived the story. It is not the first time that my writing foreshadowed an event or an object in my life.
By early April, the acupuncturist, realizing she was not helping me, said I should stop the treatments. I would have continued, on the off-chance of an eventual effect, and I was grateful for her honesty and responsibility. Michael, my physiotherapist, brought in an electrical acupuncture machine and gave me a treatment. It relieved me a little, but very little. Michael said he could help me regain the use of my arm and hands by forcibly breaking down the adhesions that were paralyzing me. The problem was it would be painful. “Do it,” I said.
After that, the major part of his hour with me was devoted to exercises to increase my strength, followed by a short period—all I could stand—of “torture time,” as I called it. Michael would bend a joint as far as he could; you could hear the cracking of the adhesion. Once the agonizing pain subsided, I could move the joint a bit more than before. This had to be done with each of the three finger joints, the wrist joints forward and backward, and elbow and shoulder joints in several directions. Michael worked on only a couple of joints a session; it took months to cover the entire affected area. He also gave me exercises to maintain flexibility. By May, I could move my arm and hands, although I continued exercises and heat treatments with a Hydrocollator almost until the end of the year. It had been painful, but by August I was fairly normal again, and I’d done it without steroids.
Michael began taking me out for walks once or twice a week. We’d stroll down Central Park West—he liked to pass the El Dorado, hoping to catch a glimpse of Michael J. Fox, who lived there. We never covered more than ten blocks: five down, five back, short numbered blocks. For some reason, walking across town was harder for me: I think there may have been a slight incline going west. The long block to Columbus was the equivalent of three of the short ones; then we would go down a block, then return. I preferred walking along the park, where there were benches in case I tired (as I usually did).
The kids took me up and down Central Park West whenever they came, insisting I put on my purple high-tops, making sure I was dressed warmly, handing me my cane. I felt like an old lady out on a leash; God knows there were lots of old ladies being pushed in wheelchairs, usually by a home care worker, up and down the same street. But I gritted my teeth and went. Besides, I was happy when I was with my children, no matter what we were doing. On April 17, Jamie had come and made me dinner; she stayed overnight and the next day walked me to Columbus Avenue, where we had brunch in a restaurant. I have this Sunday circled on my calendar; it was my first time out without a nurse, my first walk without Michael, and my first meal in a restaurant since my return from the hospital. The only disappointment was that the Bloody Mary burned my throat and had to be forsaken, but even so, I was thrilled. Perhaps I would get better.
The nurses claimed I would.
1993
SPRING–SUMMER
DURING THIS PERIOD, NO doctor even touched on the possibilities for my recovery; I was starved for an informed optimistic opinion. My children and my friends were encouraging, but hope offered by friends signified only goodwill. My three nurses were not as informed as doctors, but they were informed enough. They would do. I could believe them. Perhaps they did not fully understand the nature of esophageal cancer, but they had tended people awakening from comas. All three had done home nursing for many years to finance their education, and all three were generous. With each new accomplishment—a steadier gait, the ability to get up or sit down without their help (using my hands to support myself) or to sit erect in a chair for ten minutes—one of them would crow, “Look at you! You’re doing great!” Then she would tell me about a patient—always younger than I (but some in comas for longer)—who did not manage that for four months or six, while I had done it in only two months or three. They usually compared me to younger men. They gave me hope and the will to go on doing exercises, no matter how painful or frustrating they might be. I bless them still. Michael, too, praised me continually, stating that women my age simply gave up and became invalids. This sounded like a stereotype, and I doubted it. But I could not challenge it.
The nurses assured me—and for months, I needed regular reassurance—that I would get better, that I did not have to remain a helpless lump for the rest of my days. It was their utter assurance that recovery was within the realm of possibility for someone like me that strengthened me. When they proclaimed (always with great authority) that I would recover, I would ask how long it would take. There the brows wrinkled, the hems and haws began. Well, this one took a year, that one a year plus, another guy took three years, she thought, though she did not work for him that long. But
I was doing so well that who knew? Maybe even less than a year!
In fact, if nothing further had happened to me, I imagine it would have taken several years to recover from my injuries. In 1995, Jamie, crossing the street near her house, was hit by a cab speeding around the corner and hurled many yards. Unconscious, she came down on her back on the hard pavement. Luckily, it was deep winter and she was wearing a heavy coat and hat, and the only damage done was severed cartilage in her left knee. She required a transplant of cartilage from elsewhere in her leg to help repair the tear. She wore a leg brace and used crutches for months afterward and required almost a full year of physical therapy to regain ninety percent of her leg movement. If a torn cartilage takes a year, how long does a destroyed body take? But I did not yet know how destroyed my body was.
At the end of March, I had a CT scan of my throat and chest, which revealed no sign of cancer. My oncologist was unmoved in his pessimism, and I accepted that I would not live long, that the cancer was almost certain to recur. So I did not look forward. I did not think about the future. I made no plans. I held no hopes. I was a cripple with almost no physical powers, unsure that my mental powers were intact. All I could do was wait.
But looking back made me trembly and teary; looking back meant recalling the coma, and everything in me, mind and emotion, shrank from that. So I did not look back, either. I lived completely in the moment, which unfortunately was not wonderful. The ability to find bliss in the moment, which I had so carefully cultivated the year before, had vanished.
It is hard to describe my mental state in these months. I was not comatose, yet not in a state of mind that I recognize as fully conscious. I was flattened, insulated, numbed. Little penetrated my deadheadedness. I wanted mainly to sleep: I didn’t care what I ate or wore or saw. Even listening to music merely filled time. I was not inside myself.
A Season in Hell Page 14
