Kitabı oxu: «This Wild Darkness: The Story of My Death»

SPRING 1993

I have AIDS. I am surprised that I do. I have not been exposed since 1977, which is to say that my experiences, my adventures in homosexuality took place largely in the 1960s and ’70s, and back then I relied on time and abstinence to indicate my degree of freedom from infection and to protect others and myself.

At first, shadows and doubts of various kinds disturbed my sleep, but later I felt more certainty of safety. Before AIDS was identified, I thought five years without noticeable infection would indicate that one was without disease. When AIDS was first identified, five years was held to indicate safety. That changed. Twenty years now is considered a distance in time that might indicate safety, but a slight number of AIDS cases are anomalous; that is, the delay in illness is not explicable within the assumed rules, even under the most careful, cynical investigation. It doesn’t matter much. I have AIDS. I have had Pneumocystis carinii pneumonia, which almost killed me. Unlikely or not, blood test, T-cell count, the fact that it was Pneumocystis means I have AIDS and must die.

There it is. At the time I was told, I didn’t even believe I had pneumonia. I thought it was literary exhaustion, and age, and bad flu-bronchitis—the death-urgency brought on by finishing a book, what I called the Venice book, Profane Friendship. When the piece of journalism I was working on, a piece about the Academy Awards for The New Yorker, was done and scheduled to go to press, I went to see my doctor, Barry Hartman. I wasn’t that familiar with him yet that I easily called him Barry. He was my new internist, a specialist in infectious diseases. He had taken over the practice of the doctor I’d had before. He looked at the X rays and at how thin I was and said it might be AIDS and Pneumocystis, and I pooh-poohed him. Because of my wife, Ellen Schwamm, I agreed to the HIV test, but I refused to go to the hospital. And Barry said he might be wrong.

He said he would telephone with the test results. I said he shouldn’t worry about it. I wasn’t tense.

I went home, went to bed, took the general-spectrum antibiotic Barry had prescribed, and in bed went through the Academy Awards piece with the fact-checker on the phone. And I suffered with flu-bronchitis and fever but not with foreboding. I had some nervousness about the test, since you never know what surprises God has up His sleeve, destiny’s sleeve. But not much. It had been a very long time. I didn’t even have that lapsed awareness one can get when sick, You goddamned fool, why did you stay up so late? I didn’t have that kind of contrition.

But by the next evening I was so much worse that I could not find a balance point in the gusts of unpleasant sensation. I don’t remember feeling panicky, but I felt so sick I was uneasy about death (from illness, at least) for the first time in my life. Ellen was treating me with an unyielding attention and a kind of sweetness, without any noticeable flicker of independence or irony. She had never once been like that with me, even sexually. You’d have to know her to know how rare any state other than autonomy is for her. It was strange how the illness kept getting heavier and more settled by the hour, with a kind of muffled rapidity. Again and again, it thudded to a level of horrendousness, consolidated that, and then thuddingly sank to a worse level still. Nothing was stopping the process of strangulation. I kept putting on a front for Ellen, or trying to, until, in a kind of extreme inward silence, nothing was working. The weird, choked dizziness didn’t moderate or waver; I found I could not breathe at all, even sitting up.

I gave in. I said we’d better get to the hospital. The ambulance people came, and I whispered to them that I could not walk or sit up. Or breathe. They went down for a gurney and oxygen. Breathing through a tube in my nose and motionless and sheeted on a gurney, I was wheeled through our apartment and into the elevator and across the lobby, past the doorman, onto the sidewalk, into the air briefly, and then into the ambulance. This is how my life ended. And my dying began.

When Barry said I had AIDS, I said I didn’t believe him. He said, “Believe me.” At that instant, I was having such difficulty breathing that I hardly cared. I was embarrassed and shamed that the people who cared for me in the hospital would have to take special precautions to protect themselves. Then, as the fever went down, I suppose my pride and sense of competition took over. When someone from Social Services showed up to offer counsel, I found that bothersome, although the counselor was a very fine person, warm and intelligent. I suppose I was competitive with or antagonistic toward the assumption that now my death would be harder than other deaths, harder to bear, and that the sentence to such death and suffering was unbearable. I didn’t find it so. I didn’t want to find it so.

Ellen says that when we were first told, on a Monday, she sat in the one chair in the hospital room. To prove that she is actually remembering in the Brodkey mode, according to Brodkey theories and method, she says that Barry leaned against the windowsill with his arms folded while he told us. And that the weather was warm. And that I was strangely jovial and reasonable. She says I was heroic and completely in charge, and that I surprised her by agreeing agreeably to being treated for Pneumocystis rather than asking for sedation and being allowed to die. I remember Barry propping himself with one arm on the sill and then refolding his arms and saying, “You have AIDS,” and holding his pose and staring at me.

Yet these first moments in which I consciously felt the reality of having AIDS are hazy, slippery, and return to me in different coverings. I was in New York Hospital, and in a private room—itself a sign of possibly having AIDS-related tuberculosis, to go from the emergency room to a private room—and still hardly able to breathe even with oxygen, and I had a high fever, and I was drugged, though not as heavily as later. I was breathing oxygen through a tube from a tank and I was attached to an IV. I wasn’t in a condition of vanity and yet I was—I was worried about Ellen’s opinion of me. I suppose this is a male way of worrying about her feelings, her reactions, without quite worrying about her.

The fever moved in acid waves. Some sort of final castration, real helplessness, felt very close. I could see nothing to do about it. A display of manner, a touch of William Powell, of Huckleberry Finn with the bed as the raft, was like a broken piece of salvage to me.

I heard Ellen say something to Barry, ask him something about what was going to happen, and he said that after the Pneumocystis cleared up I had the possibility of a few years of life.

And I said, “But it will be embarrassing.” The stigma. Incontinence. (Would I have to wear a diaper?) Blindness. He said the good years were quite good, were livable.

In the confused, muddled velocities of my mind was an editorial sense that this was wrong, that this was an ill-judged element in the story of my life. I felt too conceited to have this death. I was illogical, fevered, but my mind still moved as if it were a rational mind—the mind, everyone’s mind, is forever unstill, is a continuous restlessness like light, even in sleep, when the light is inside and not outside the skull. I took inside me the first stirrings of acknowledgment of AIDS, not with the arching consciousness with which I try to write fiction—I didn’t feel that isolation—but with a different sense of aloneness. And maybe I felt the wretchedness in Ellen. Maybe I was sensitive to what I had, so to speak, done to her now.

Part of what is basic in my life is how I show off for her. Somehow, sadly, that evening I was getting it wrong. I was wheezing too much, and Ellen kept indicating that I shouldn’t try to talk unnecessarily. She was scared shitless. She was deep into her bravery tactic—almost trembling with it. Only in a memory which resurrects the fever, in that full memory, do I see her, strong-eyed, polite-voiced, and feel her leaning over me as if to protect me with her small frame. She said to me later that she had had the conviction that it was over for us, both of us—that she, too, must be infected, all things considered. Nothing for us, of us, would survive this devastation. But she said nothing of it then. She is often indirect; she frequently lies to me because I bully her in a lot of ways; she is quick, tactically quick.

She says she thought then that we would die together, both of us—commit suicide simultaneously—in a few months, when everything was in order. But she didn’t want me to leave her now, not this abruptly. Most of us who know Ellen know her as a fine-boned tyrant who looks a bit like a small Garbo. Her hair is gray, and she has never had a face-lift. She is of interest physically still—neatly formed and stylized, like the stopper of an expensive perfume bottle. She is incredibly willful, and she is my human credential. People think she is good-looking and trustworthy and sensible, whatever they think of me. It seemed clear from how Barry and the harried nurses acted that they saw her in that way. They all trusted her judgment and her will, not mine.

I remember not wanting to be an exploitative fool in her eyes by asking her to nurse me through a terminal disease, and one with a sexual stigma. I wondered if she would despise me. I knew a woman once who’d had a good marriage, unmistakably so, within limits, and whose husband, a clever banker, fell ill and impressed everyone with how hard he fought to be himself again, to get well again. That woman once said in my hearing, “I wish he would give up.” His struggle went on for so long, and so dominated everything, that it was killing her. And he was hardly alive except as a will to struggle.

And then, lying in that room, I saw it differently: after all, death—and AIDS—are a commonplace. “Big deal,” I said. That didn’t lighten anyone’s face. “Jesus Christ,” I said. “What a mess.” Barry said something about tranquilizers and counseling to help with the shock and despair, and natural grief. “I’m OK,” I said, and went on grandly, “Look, it’s only death. It’s not like losing your hair or all your money. I don’t have to live with this.”

I wanted to make them laugh. I wanted them to admire me, it’s true, but I also wanted Ellen to stop that inward shaking, and I was afraid to say, “Christ, what have I done?” or “Look what’s happened to me” or “It’s all my fault.” I have an odd cowardice toward grief. I would just as soon suffer without it. The two of them were watching me, ready to sympathize and comfort. Ellen turned to Barry, who was disapproving. Or worried. “We can help when the despair hits; we have drugs,” he told her.

I was only thinly and artificially conscious anyway. I suppose I had made up my mind to try not to be humiliated, and that involved my not being pitiable to these two people, the only two people I would see with any regularity for the next eight weeks. And, you see, a traumatized child, as I was once, long ago, and one who recovers, as I did, has a wall between him and pain and despair, between him and grief, between himself and beshitting himself. That’s the measure for me—handling the whole weight of my life in relation to polite bowels. The rest is madness, rage, humiliation.

Again, the fevered cresting memory pulls me back in, to that moment when I think it was that the future had suddenly vanished for me, had become a soft, deadened wall. Back there at the beginning, the end, when Barry told me flat-out that I had AIDS, I didn’t feel it, although I also saw that denial was futile. Barry was not even remotely real to me at that point. He was merely a conductor, a lightning rod of medical error. I still didn’t believe he was a good doctor; that would come later. The framework of the self wasn’t changed by the words, the general feeling of its being my body and its having been my body all my life didn’t dissolve, as it would in a few days. I had no sense of gestating my death.

Ellen says that she hung back and expected me to be violent psychically, and to want death immediately once I had accepted the diagnosis. Well, that was true. But I was also afraid of death, of my own final silence.

And I was ashamed toward her, and angry at her. She does not steadily believe that I love her—it is one of her least endearing traits to expect proof at unreasonable intervals. And what is love? My measure of it is that I should have died to spare her. Her measure is for us to be together longer.

I thought I could feel myself being suffocated second by second. What was strange was that all sense of presence, all sense of poetry and style, all sense of idea left me. It was gone, with not one trace, one flicker remaining. I had a pale sense of the lost strength it would take to think or feel a metaphor, and of how distant it was from me. Everything was suffocation and the sentence of death, the termite-like democracy and chemical gusts of malaise and heat, of twisting fever, and the lazy but busy simmering of the disease in me. Everything outside me was Ellen’s breath and the color of the walls in the dim light and was the hospital noises and the television set on its wall mount and a ticking slide of the moments.

And nothing was a phrase or seed of speech, nothing carried illumination in it, nothing spoke of meaning, of anything beyond breath. Attentive to nothing but breath, perhaps in my dying I was alive in a real and complete way, a human way, for the first time after ten or fifteen years of hard work. I lay awake in an almost bright amusement. Did you ever, as a child, play alone in a large cardboard box that a refrigerator came in? Or work alone in a large room? Or at night, when everyone else was asleep? Whatever I say now applies to feelings inside such a box, the box I’m in. No one can possibly know the power of feeling I project inside my carton.

For the next two weeks, the world and all other issues would be omitted. We were two people alone in a hospital room. We allowed no visitors. We had two weeks of near-silence with each other and my increasing helplessness. I tended to tangle the IV and misplace the oxygen tube. As I started to say earlier, I could feel no sensible interest in the future. The moments became extraordinarily dimensionless—not without value but flat and a great deal emptier. When you learn you’re fatally ill, time becomes very confusing, perhaps uninteresting, pedestrian. But my not caring if I lived or died hurt Ellen. And I was grateful that I could indulge my cowardice toward death in terms of living for her.

I remember her arriving back at the hospital that first night after four horrible hours at home, in our apartment alone, racked by waking nightmare. She arrived soon after it got light and had a bed for herself moved into my hospital room.

She said, in an averted way, “I want more time with you.”

And I said, from within my flattened world, “You’re nuts. It isn’t that much fun to live. Now. And you know it.” I sighed. “But if that’s what you want …”