When I received my German schedule it frightened me a bit. My publisher had scheduled ten straight days of promotion; she had included only one or two interviews or formal lunches a day—a far cry from what I had done on my last tour. She probably felt she was asking little, but she had scheduled a reading every night, as during my German tour in 1992. A reading a night may not sound like much, but it involved dressing by five-thirty to prepare, leaving the hotel about six o’clock, riding for an hour in a car to a bookstore. The reading would begin at seven-thirty and last forty-five or fifty minutes; questions from the audience would take up another half hour. Then I was expected to sign books (Europeans love signed books)—another forty-five minutes to an hour—and then drive back to the hotel. I would arrive there at ten-thirty or eleven, having had no dinner and too tired to eat—not that restaurants in rural hotels were open.
After three days of these five-hour ordeals, I feared another attack. I felt extremely enervated and weak, as I had after the first attack. The young women escorting me took me to a local clinic, by which I was pleasantly shocked. Large, airy, immaculate, beautifully furnished, and empty, it could not have been more different from American emergency rooms—although the ER in Fairview Hospital, Great Barrington, is often empty. In Germany, the doctor had to be telephoned at home. He arrived swiftly and greeted me with grace and charm; courtly as a Southern gentleman, he ushered me into the examining room. He did a few tests, then made a call summoning a senior doctor, who was equally gracious. After doing an echocardiogram, the two men together approached me very gently. Usually, they said, people who came to their clinic in the middle of the night citing chest pains had indigestion and were sent home. It was a rarity, but in my case, they were very sorry, they regretted deeply the necessity of telling me that I should sign myself into the hospital, as my heart was in terrible shape.
I said I knew it was bad and was planning to go home the next day. It was clear to me that if I continued to do promotion, I would die. I could not go through one more long night. The next day, I made a flurry of arrangements, feeling sorely disappointed with myself for letting the publishers down—letting myself down, for that matter. I had made one arrangement on my own, a speech at the college in Mainz. I’d been looking forward to it, but had to cancel that too.
I went home chastened and saw Edie almost immediately. When she asked why I had not told her I was going to Europe, I said I didn’t want her to tell me not to go. She didn’t have to advise me to keep my activities to a minimum. In the future I would listen to my body with even more attention.
The heart attack ended my days of delusion. I never again imagined that I would regain my old strength, my old body, my old energy. The extreme tiredness continued for months. Eventually, the quickness that had previously characterized my movements returned—for a year or so. Then other problems grew worse, and that energy faded. I no longer think in terms of recovery but only of small gains and getting through.
Although blood in my urine no longer panicked me, it led me to urge my urologist to remove the stent late in 1994. Knowing I was going south soon, he refused. In Florida, the bleeding became more serious, and I began to have pain during urination, so I had to fly up in March 1995 to have it removed. I had new and unpleasant urinary tract problems—an intense need to urinate just about every hour, and pain during urination. But Dr. Lowe seemed uninterested. This surprised me—he had been an extremely friendly doctor; he would stop in to visit me at St. Luke’s–Roosevelt even when I was there for reasons unconnected to his specialty. He seemed now to feel there was nothing more he could do for me.
While I was in New York, I had another endoscopy at Sloan-Kettering. It was my sixth and my last. When I came out of the anesthesia, Dr. Gerdes, with a big smile, informed me that my esophagus had healed. He was jubilant, and so was I, but I wondered why I still had the symptoms, still had difficulty swallowing. He explained that chemotherapy and/or radiation damages all the body’s soft tissues, and that my esophagus had probably lost its elasticity, its peristaltic power. He prescribed a pill to help it, to be taken a half hour before eating. I flew back to Florida pleased with myself for my one bit of recovery.
I had this year done something I’d long wanted to do: for years, I’d talked of painting in watercolors. I had bought paints and paper during one of Jamie’s visits and asked her to teach me. She claimed not to know how—she painted in oils (which did not prevent her from tossing off beautiful watercolor sketches when she sat down with the paints). I had tried it on my own, but I knew I was not handling the paints properly. So for Christmas 1993, Jamie had bought me paints, paper, brushes, a board and easel, and five lessons with her friend Ophrah. It had taken me the entire year to manage to take the five lessons, but I had very much enjoyed them.
Painting was—is—almost exactly the opposite of writing for me: I feel it to have no moral/political content (which I do not believe about anyone else’s painting); I like almost nothing I produce (I usually do like what I write), but—and this is rare for a perfectionist—I enjoy the process enormously anyway. Occasionally, I feel I am improving; I always feel I am learning: but it does not matter. It does not matter how well or ill I do. I have never felt that about writing, not even when I first started to write daily. I always judged myself by my writing and put tremendous weight upon it. Painting was easy, not a burden, since poor performance did not matter.
After returning from Florida, I saw Edie, who in an effort to treat my new urinary tract problems arranged for me to see a nephrologist she respected highly, Sheldon Glabman. (It was Dr. Glabman who later wakened me, mornings at Mount Sinai, with a hand on my forehead. I had liked him before that—he is an extremely cultivated man—but that endeared him to me.) He in turn sent me to a new urologist. He ordered another sonogram, which revealed my kidney stones but showed no cancer. The urologist gave me belladonna to ease the pain, but it did so only slightly and did not reduce the frequency of urination or the bleeding at all.
I had no sooner settled in in the Berkshires for the summer than I developed pain in my side and a slight fever. I had come to expect kidney infections on holidays, and sure enough, it arose over the July 4 weekend. Thankful that my daughter was with me and could drive me to New York—I did not want to take another horrible superexpensive ambulance ride—I went this time to Mount Sinai Hospital, my new doctor’s base.
Indeed, I had another kidney infection, and this time they had trouble dealing with it. After they got the infection under control, Dr. Glabman prescribed some medications that would, he hoped, dissolve the kidney stones. Why these had not been prescribed before, I do not know. He said it might take a year, but I should get rid of the stones and then have no more kidney infections.
My frequent hospital stays changed my behavior. Acting agreeable and docile was a thing of the past. On the other hand, perhaps I was never as patient and docile as I thought. Certainly Edie and Lucy thought of me as properly tough on doctors—Edie called me “feisty”—and I castigated more than a few nurses and doctors at St. Luke’s–Roosevelt. But I was probably more docile at S-K.
A young Indian doctor at St. Luke’s, a mere girl really, had been told to give me a TB test. It involved being stuck with a needle. The next day, she approached me with a flat metal board covered with needles, which she wanted to press into my arm. During this period, I was constantly being tested for pulmonary emboli, and I felt like a pincushion. I told her I didn’t want the second TB test. I didn’t like the look of the thing, and I’d been stuck enough. She insisted. I said that if I refused a treatment, that was that. She continued to insist, and I gave in, but I cried when she hurt me. If the young doctor had had any notion of what I had been through, she might have been a little sympathetic (like the guy who gave me the thoracentesis), but instead she reproached me. Weeping, I said I didn’t want to be hurt anymore, I wanted to die. She was shocked.
“How can you say something like that!” she scolded, this twenty-something twit.
She nodded at Rob, who was visiting me that day. “Look at you! You are a lucky woman! You have a son, and he comes to visit you! You should be grateful! A woman should be grateful to have a son! You should not say such things!”
The blast she got then blew her out into the hall. I never saw her again, but I heard about her dismay from Edie and Lucy, who wondered what had happened. When I told them what precipitated my explosion, they exchanged half-smiling glances.
Strange doctors who led processions to my bedside, expecting obedient submission to orders to examine me publicly en masse, got short shrift. But the doctors I most often reprimanded were overbearing men who bullied or were rude toward my roommates, often poor women on Medicaid. I intervened because the women accepted this treatment in silent passivity (as poor women usually do). Doctors are especially detestable to poor women of color, and I derived great pleasure from challenging this. Once, at Mount Sinai, eight men (professional visitors: they were too old to be students) stood around the bed of my roommate, a beautiful black woman in her thirties, regarding her poor carved-up body (she had had so many operations that she looked as if she’d been used for experiments). The headman told her she needed another operation. When I loudly warned her not to believe him, to get a second opinion, a young doctor in the entourage snickered. She had a parade of physicians—the same one rarely returned twice. Another day, a doctor said her pain (which she had complained about for days but that no one had treated) was in her head, and he asked how old she was. When she told him, he said, “Well, you’re too young for menopause, but you’re still imagining things. How is your mental health?” She looked at him in bewilderment.
I exploded. “What!” I cried. “Are you saying you think menopausal women are crazy? Is that what you’re implying? Are you really so stupid and inexperienced that you believe that?”
Doctor or no, he no doubt believed exactly that. He glanced at me in deep unease, even fear, and rushed from the room. (I had just validated his assumption.) My roommate turned to me a face smiling with gratitude. The next day, she spoke up to a doctor who was treating her superciliously.
I had been working all this while on My Summer with George, and while I was in the hospital in July 1995, I revised it, finishing the revision the day after I left. I went back to the Berkshires as soon as I could. Again, I was weak and needed help with carrying and lifting; again, I slowly grew stronger.
In New York, on an evening late in September, after my daughter and I had seen the play Ecstasy off Broadway, we walked to the corner for a cab, and I suddenly found myself lying on the sidewalk, on my back. People all around were alarmed, and helpful, especially the women, but thank heavens I had Jamie to see me home. The next day, I was all right but uneasy. I called Dr. Lieberman, the Sloan-Kettering neurologist, for an appointment. He ordered an MRI, which showed I had brain damage from the chemotherapy. Luckily, the damage was to my cerebellum, not to the cognitive portions of the brain, but it was irreversible, he said, and nothing could alleviate it.
I worried for a while, fearing that I might fall down when I was out alone, hating the thought that I might need a keeper to be with me at all times. But I have fallen only once since then. This marked the beginning of a severe deterioration in my walking ability: I am often dizzy and walk into walls; I often feel I will fall, and sometimes I do collapse. I need to sit down or rest briefly when I stand or walk. But I have not again blacked out during a fall.
I had no further health crises that year, although my urinary tract problems remained.
In January 1996, I flew down to Florida. Perhaps I was more ambitious than usual, or more energetic, but I have less help in Florida than anywhere else, and things are hard for me there. In any case, I realized after a time that my back was particularly painful. I ignored this, thinking each day that I had been too vigorous in swimming the day before, that I should not have carried that half-bushel of oranges up to the apartment. In late February, I flew to England to deliver the Oxford Amnesty Lecture at the Sheldonian Theatre, thrilled to speak in that historic hall. I spent some days in London seeing publishers. I stayed at my favorite British hotel, the Connaught, which is beautiful and luxurious, with a great dining room. In addition to its exquisite meals at lunch and dinner, it manages to deliver a perfect three-minute soft-boiled egg every morning—which as far as I am concerned is the real test of a hotel dining room.
By late March, I realized that the back pain had been particularly bad for a very long time, and I consulted my Florida doctor, who sent me for X-rays and a bone scan. I had suffered another compression fracture. The doctor sent me for physical therapy, but I was already being treated by an expert in craniosacral therapy, who managed to keep my pain tolerable; the supplementary traditional physiotherapy did not seem to have any added effect.
My urinary tract problems were growing ever more severe, and when I returned to New York, I again saw the new urologist. He performed a cystoscopy and found my bladder full of blood, but no sign of cancer. The next step was a CT scan, and, because I was staying in my Massachusetts house, I arranged to have it done at a hospital in Canaan, Connecticut. But the doctor had not specified whether iodine was to be injected to provide contrast in the X-ray, and the technician was afraid to proceed. Not wholly trusting the urologist (who had messed up arrangements for several previous appointments), I had the technician call Edie, who absolutely forbade the use of iodine. I went home. There was no CT scan, and no further tests were done. They—Edie; the nephrologist, Dr. Glabman; and the new urologist—had ruled out cancer to their satisfaction. Edie did not want me to have iodine (which harms the kidneys and, in my case, could be fatal), so a CT scan would be of minimal use. They concluded finally that my urinary tract had been damaged by chemotherapy, that there was nothing to be done, and I would simply have to live with the consequences. This was becoming the standard answer to all my problems.
Indeed, that is the diagnosis of most of my present medical complaints. Happily, the medication to dissolve kidney stones was effective and within three months had eradicated them, as a new sonogram and X-ray showed. Once they were gone, Edie made sure I was sterile (by prescribing a final course of antibiotics and testing the urine again to make sure it was infection-free). Once sterile and free of kidney stones, I had a chance of remaining free of infection. I have not had a kidney infection since and have not spent a night (although I have spent days) in the hospital in a year and a half. Consequently, I have not suffered periods of regressive enervation. I am grateful for the respite but do not consider that this means I am “better” or will recover. My walking grows steadily worse as the neuropathy progresses up my feet; the dizziness from my brain damage probably has a similar prognosis, since the effects of toxins and of radiation continue in the body for the rest of one’s life.
With concentration, I can walk straight. When, distracted, I fail to concentrate on walking or standing—as happens at large parties, for instance—I become weak and dizzy and feel I will fall down. I dread that someday I may not be able to walk unaided, but that is not predictable, and I refuse to spend good years of life thinking about wretched things that may not happen. Regular Feldenkrais and craniosacral therapy for my back and arm problems enable me to stand a wee bit straighter than I did and to move my arms a bit more widely. I even have moments without pain. My heart has improved a tiny bit, as has my kidney function. The latter things have happened automatically; they are signs of the body’s miraculous ability to heal itself.
CONCLUSION:
SPRING 1997
AFTER ALL THE UPS and downs of 1992, 1993, 1994, and 1995, after the heart-clutching terrors, the flashes of exaltation when I thought I was recovering, and the inevitable disappointments that followed, I reached a plateau of serenity. Years of pain, dread, and severe illness smoothed out into a quiet state of mild impairment. Nineteen ninety-six was the first year since my diagnosis in 1992 in which I was not hospitalized. Since each hospitalization had cast me back into enervation and mu
scle weakness, I could now stop this regression and work on growing steadily stronger. Of course, I did not know at the beginning of the year what it would prove to be like, and there were many episodes of sudden bleeding, or sharp pain that made me clutch in fear.
At present, I feel relatively well. My back aches almost constantly but not severely, except when it is tired; a regimen of medications and a low-protein diet have kept my kidneys quiet; the urinary tract problems remain, and I am bothered every hour and never get a full night’s sleep, but now that I know they do not indicate cancer, they do not worry me.
A few months ago, I read Reynolds Price’s memoir of his ordeal with cancer, A Whole New Life (1995). Price had cancer of the spine and received considerable radiation. As a result, he is now a paraplegic. He writes that severe spinal injury almost always damages the nerves controlling bladder function. Most para- and quadriplegics have trouble emptying their bladders; they often lose control of their urination and develop urinary tract infections. For months, I believed that my urinary problems, which did not begin until 1995, were a late result of radiation. Price had another problem I share: he calls it “storms” in the nerves of his back and legs, resembling an immense amplification of the pins-and-needles sensation. I have had what I always called “hard pins-and-needles” across my midriff and back since I awoke from the coma. It can be very strong and unpleasant, and arrives suddenly when I stretch an arm farther than it wants to go or move my torso quickly. My craniosacral therapist, Susan Trider, told me several years ago that as she worked over my body she felt a strange prickling sensation—although I had never told her I suffered from it. Her efforts paid off, and the sensation is much reduced now.
A Season in Hell Page 19
