On my first visit, I was lying next to a heavyset man, older than I, who also had esophageal cancer. His doctor, a surgeon from New Jersey, had operated on him and he was left in horrible condition. He could swallow food, but it did not remain in his stomach. The loud-voiced, bullying doctor asked him questions, but his answers were vague. He kept saying, “My wife knows, my wife keeps track.” He was vague even about his medications. Finally, the doctor ordered the wife to come in and give him the information he needed. Deeply involved with her husband’s treatment, she had everything at the tip of her tongue: when he had pain and how long it had lasted, what he had eaten and when, and when it came back up. She knew about his bowel movements and urination, his medications and sleep patterns. The doctor declared that another operation was called for. The patient and his wife accepted this submissively.
Another time, a handsome man in his early forties lay sleeping in the end bed. A beautiful woman sat beside him silently, watching. She often bent forward to lean over him—perhaps he had moved, or an eyelid had fluttered. During the many hours I spent in the ward that day, no doctor approached them, and the devoted woman never moved. No words were necessary to demonstrate her love. She still stands in my memory as a kind of symbol, patience on a monument.
One afternoon, a nurse silently pushed in a young man in a wheelchair, with a basin in his lap. The nurses scurried to ready a bed for him, but for a few minutes he sat visible in the center of the room. No one saw him but Rob and me (the other patients’ curtains had all been drawn). I drew my breath in sharply at the sight of him: he was skeletally thin and as white as the albino boy in my first-grade class. He was bald—probably from chemotherapy—and his large, egg-shaped head was sickeningly white. As I watched, he opened his mouth and bent over the basin, spilling perhaps a pint of blood into a basin already half full of blood. He was young, in his twenties, probably, and dying. He was one of the most terrible sights I’d ever seen; his suffering—which I could not begin to fathom—was palpable, although he spoke no word and made no sound, past complaint.
In my many visits to Urgent Care, all the patients around me were men; I don’t know why. But I was glad for the exposure, because the difference between them and the women with whom I shared rooms upstairs was striking: men usually had women to care for them, whereas few of my roommates had men visit them, and none had a man taking care of her. Women were visited mainly by other women; women were the caretakers for patients of both sexes, although I never saw a woman take care of another woman in the detailed, careful way the wife of the man with esophageal cancer cared for him. Except for the boy in the wheelchair, all the men I saw in Urgent Care were accompanied by wives and sometimes sisters and daughters as well. An elderly Chinese man came with an entourage of women. When he was about to be discharged, two nurses patiently tried to instruct the women on how to take care of him once they got home. Through considerable language difficulty, they told her they could not keep him from getting up to go to the toilet—he was probably a proud man. One nurse talked with them for a long time, attempting to dredge up ways to salve his pride while keeping him off his feet.
A few of my roommates had husbands, but none took responsibility for their wives like my friend Barry. One man came every night with his dinner steaming and fragrant in a paper bag, and sat there eating, gazing at his wife. I was touched by this; I thought: How sweet; he’s used to eating with her and probably can’t bear eating without her. I went on thinking this and smiling at the man each time he entered the room, until the night her weak, weary voice protested:
“Lou, did you have to bring chili in here? You know it makes me sick to smell it. All these spicy dishes make me sick.” He said nothing; he finished eating. I wondered if his dinners made her sick every night. After they left, I thought: I wouldn’t be surprised. Because on the day she was to depart, she was smiling and happy. By the time he arrived, she had put on her street clothes and came out of the bathroom wearing a big smile and a brownish-blond wig.
“What do you think?” she asked, her eyes bright, eager for a compliment.
“Looks like hell,” he growled.
So much for sweetness, I thought. With someone like that around you, your chances of recovering were very low. I blessed myself again that a former lover who had left me had done so long enough ago that I was over it by the time I got sick. I knew that if we had still been together, I would have been deserted as soon as I was diagnosed, and that that would have crushed me, perhaps enough to affect my prognosis.
One roommate had a grown son who had been away—in Europe, I think—and had not seen her since before she fell ill. Now he came every afternoon to play cards and chat with her; he took an interest in her medical treatment and stayed to speak to the doctors and ask them questions. I, too, had a devoted son. Neither of these sons took responsibility for their mother’s care (I did not need this degree of help and probably would not have allowed it), but both were deeply involved and interested in all its details. I also knew—presciently—that if I did need help, my son would give it. At Urgent Care, I was a lucky woman. My children or friends or both sat outside waiting for me, and when they were allowed in, they sat by my side, silent, waiting, still. Rob always sat with me for hours, holding my hand. A lovely doctor in Urgent Care came upon us this way one day and was startled.
On my first visit to Urgent Care, I was diagnosed with thrush, a fungal disease that sometimes occurs when many white cells are killed off. It sounded trivial to me, but the doctors considered it serious and said I had to be hospitalized. It was serious, they said, because it indicates a low white cell count and it was blocking my internal organs—at least my throat, which was why I could not swallow. (In subsequent months, I was given a medication before and after chemotherapy, to prevent thrush from developing.) After a long wait, they admitted me to the hospital, though not to the eleventh floor, which had no free beds.
The nurses said it was not uncommon for patients to return to the hospital mid-month. But when that occurs, treatment is not a relatively easy one-week-in, three-weeks-out. As it turned out, I spent about three weeks in, one week out, almost every month. When first diagnosed, I had another dread besides that of dying. As I went from doctor to doctor, I saw hundreds of people in hospital waiting rooms, lab waiting rooms, doctors’ waiting rooms. They sat for hours, patient and silent, waiting, waiting. I was one of them, but never patient. Restless, impatient, I harried receptionists, clerks, whoever; I protested three-hour waits. (By the following year, I was shouting at doctors who made the mistake of appearing in their office when there was a long wait.) I felt that these patiently waiting people had stepped in the elephant dung. (There is a saying in academia about working in a low-status college: If you once step in the elephant dung, you will track it around behind you forever afterward; you can never get rid of it.)
The elephant dung this time was the condition of being sick: not suffering from a sickness, an occasional bout, but having a chronic condition of illness. For such people, illness was a way of life. Their days were centered around appointments with one doctor or another, picking up a new prescription and keeping records of side effects, trying the new herbal tonic a friend had recommended. Husbands and wives together made the sickness of one (or both) the focus of their lives. Sitting for hours in a waiting room was a common part of this kind of life, something to be endured tolerantly, something expected. If you were a cancer patient, the hospital and the doctors became your life, constituted your entire life, circumscribed all the conditions of your life. Beyond weeping that this was what one’s life had become, what was one to do?
My adamant determination that this not happen to me contributed to my bad temper at being kept waiting, but besides impatience, I suffered from a piercing need to escape. As a child, when faced with threats from other children, or disapproval from an elder, I would raise my head and eyebrows in the most supercilious manner I could manage and try to sail above it (successfully most of the time, I mu
st admit). So now I raised my head and set my mouth and vowed they would not get me, I would not become a professional patient, I would remain a human being, a thinker and writer who was temporarily ill. But in the end, there is no escape.
The day after I was readmitted to the hospital, I developed what are called mouth sores. Like many chemo patients, I would develop them every month. This sounds innocuous, but it is horrible. The chemicals in your blood kill all fast-growing tissues in the body. Besides cancer cells, they destroy the soft tissue in the mouth, throat, intestine, and bowel. Cuts in the inner wall of the mouth, the gums, and the tongue hurt when you try to eat or even talk. Two or three times a day, a nurse comes around and sprays your mouth with something—boric acid?—that calms the pulsing heat of the cuts. But the relief is short-lived. The sores lasted about two weeks, ruining most of my (supposed) out-of-hospital time. A seemingly minor problem, mouth sores are agonizing.
But the nadir of this second hospital stay concerned television. I was again fortunate in my roommate, who willingly used earphones when she watched TV and did not watch it constantly. I knew that the Republican National Convention was occurring that week in Houston (though I did not watch TV, I had the New York Times delivered every day, and Isabelle brought me The Nation) and that Pat Buchanan was to give the keynote address. Fervently hoping that my roommate would not want to watch it, I was relieved when she fell asleep early that evening. But I was not to escape—a man down the hall was determined to watch it and force everyone on the corridor to hear it. He tuned his set so loud that it blasted the hall. I begged the nurse to ask him to turn it down; she grimaced, saying other people, too, were complaining, but the man absolutely refused to reduce the volume.
For me, Buchanan’s speech was symbolic. In my vulnerable state, I had no defense against it; it fit right in with my mood of despair. The speaker’s words, his tone, epitomized everything about my country and the world that made me receptive to death, made me feel on occasion no regret about leaving this world. So do impersonal events collude in our lives and our death.
I had expected to remain in hospital for a couple of days, but they kept me for eleven, until Sunday, August 23. In tearful frustration, I realized that in only seven days I had to return, for another course of chemo. Seeing my dismay, the kids offered to take me to the country for the week. We drove up to the Berkshires on the day I was released, and I breathed more easily, as I always do there. But I was weak and enervated from being so long in bed without eating. There were no hikes in the mountains this time; I had only the luxury of lying on a chaise on my screened porch with the kids, surrounded by the fragrant garden, watching hummingbirds fight in the bee balm and the delphiniums, the orioles, the finches, robins, hawks, blue jays, and sparrows play.
The morning after we arrived, I was combing my hair in front of my bathroom mirror, and a huge clump fell out into my hand. In wonder, I touched the back of my head, and another huge clump appeared in my hand.
Losing my hair was the one side effect I had anticipated. I had shrugged it off. So what, I thought. I told my friends, I can handle that; it’s nothing. So little do we know ourselves! For when it happened, I burst into tears; I found it horrible. I felt like a leper, as if my limbs were shriveling and dropping off. Within a few days I was completely bald. I stared at myself in sorrow. In my youth, women would stop me on the street to ask what shampoo I used to get such shiny hair. We were too poor to buy shampoo, and my mother had us use Ivory Flakes, but I never confessed that to anyone. Now I realized I had taken pride in my hair, it had been a source of vanity, even though it had lost its sheen long ago. I walked around the house bald, but I covered my head when I went into public.
One magical thing happened during the month. It was so remarkable that I recorded it in my laptop journal. The night I was readmitted to the hospital, I was restless, unable to sleep. Words from a Rilke poem kept running through my head: words spoken in an afterlife by a little boy who has died, to his living parents. In the translation I know (Randall Jarrell’s, I think), he says: “Here everyone is like a just-poured drink / But the ones who drink us I still haven’t yet seen.” The thought was transformed in my mind into a repetitive “Here everyone is just a body broken,” and I consciously appended, “and the ones who treat us see us that way.” In the hospital, brokenness had become the dominant factor of every patient’s existence.
I found this idea comforting, which was odd, since I had spent most of my life high-handedly ignoring my body, demanding that it do what I willed it to. Yet it was somehow a relief to be reduced to mere body, as if I were a baby again, not responsible for anything, my body cared for and watched over and monitored. This was the full human-merely-human state; I could not pretend to more, hope for more. I watched skinny-legged men speed down the corridor pushing their IV poles, their hospital robes flapping behind them, their skin whiter than if they were already dead. A permanent if not constant feature of the hospital was the sound of women weeping. I would often hear a woman crying softly in a room down the hall, and a nurse would pass my door, her eyes wet.
I could not relax that night. At last, unthinking, unaware of what I was doing, I told myself to have pleasant dreams—as my mother did every night of my childhood as I went to bed. “Good night, Marilyn, pleasant dreams,” I said to myself as she always said, and at that moment I felt her presence. She did care that I was sick, she had noticed. She had turned her attention away from herself and toward me, for a brief time, at least. I could sense her horror at my broken body and my pain, and she smoothed my brow with her hand, something she had done once in life, when I came out of surgery. I asked her to make me feel better and to stay with me until I was well. Then I was able to sleep.
She never appeared to me again, but it was all right. I knew she knew and cared.
1992
SEPTEMBER
A WEEK LATER, ON THE last day of August, I returned to S-K for my second course of chemo. This time, I was given a private room, and I managed to get more writing done. I was surprised one day by a visit from my sister, Isabel, and my niece, Cary, who live on Long Island. I had earlier signed up for a small event for female cancer patients—a demonstration of makeup; the flyer promised that experts would teach us how to tie scarves to create an attractive head covering. I would have canceled, but Isabel and Cary were interested in going with me.
Twenty or so women attended the demonstration, held in the penthouse waiting room. One of them I had seen frequently on my various wheelchair journeys around the hospital—to the X-ray department, the audio department (for a hearing test), and other test sites. Each time I saw her, I imagined that she was on the verge of dying. Always in a wheelchair, she was pushed not by an orderly, as I was, but by a woman I took to be her daughter. Several men often accompanied them, the woman’s sons, perhaps, or her brothers (none seemed to relate to her as a husband). All looked to be from a foreign culture. The woman looked old but could have been younger than I; she seemed disconnected. I imagined she did not speak English. What most struck me about her was her color, a bluish-grayish yellow, the cyanotic color of a corpse. I was sympathetic to her and her family, because she looked so sick and so out of it; but the whole family seemed dazed, never looking directly at anyone. I invented a scenario in which all had come here from some alien place—Albania or Uzbekistan—and were living in terror in this foreign land while their mother received medical care.
The makeup demonstration was probably financed by a group of cosmetic companies, two or three of which had contributed most of the large bagful of cosmetics we were each given. Two young women did the work. Judging from their spiels, they were saleswomen. A young man seemed to be in charge, but he said and did little. The women were young, shallow, and criminally ignorant: they had been trained only to spot and deal with troublemakers (like me). They had no training whatever in the effects of cancer on the human body.
We patients, in various stages of illness, sat around a long rectangular table.
I sat across from the cyanotic woman, whom I was surprised to see at something like this. Maybe she wasn’t as sick as I imagined. But she did look and act like a corpse, her face livid, expressionless, and she unspeaking. Yet she participated, slowly and confusedly trying to follow directions. She must have understood English to some degree, but she needed help in following the directions. She never spoke or looked at the other patients or the women instructing us, or at me, who, directly opposite her, looked at her frequently. Indeed, most of the women focused their eyes fixedly on their mirrors, as if they dreaded meeting another person’s gaze. I wondered whether the problem was that they could not bear finding their images reflected in another’s eyes; isolated with their mirrors, perhaps they could idealize themselves. Most women know how to do that, if only for its calming effects.
The instructors’ superficiality and fake sophistication would have irritated me even if I’d been well, but when a skinny, highly made-up young woman announced dramatically that “Eyebrows are in this year, ladies!” I was appalled. Such a statement was ludicrous in any case, but many around that table had lost their eyebrows along with their hair. I said nothing, but glared in disapproval. Both instructors immediately approached and began to lavish attention on me, hardly what I wanted. They also attended to the other trouble spot—the woman across from me. She was a problem not because she said or did anything, or looked angry, as I did, but because she was so out of things. Purring patronizingly, they removed the cosmetics from her bag and showed her what was what. She never visually or verbally acknowledged them, but she did seem pleased, patting her face ineptly with cream or blusher or eye shadow. One instructor finally took over and helped her apply foundation, eye makeup, blusher, lipstick. During the hour and a half of the demonstration, she never uttered a word.
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