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 …”
“I do,” she said.
I don’t want to be defensively middle class about this, but it was a middle-class decision I made, nothing glorious, to try to go ahead and have AIDS, live with it, for a while. I felt the doom was bearable. Also I was not, am not, young. I am not being cut down before I have had a chance to live. Most important, I was not and am not alone. I am embarrassed to be ill and to be ill in this way, but no one yet has shown disgust or revulsion. I expected it. To the interns AIDS is medically boring now (and I did not have a recondite opportunistic infection, but the most common one), and outside the hospital it arouses, at least in New York, sympathy and curiosity. I do get the feeling I am a bit on show, or rather my death and moods are. But so what?
Barry, who is very able and very experienced, is surprised that I am not more depressed. He says cheerfully that I am much more upset than I realize. He credits some of the medicines with shielding me, my mood, and warns me that severe unhappiness is coming, but so far it hasn’t come. I have resisted it, I suppose. And my wife is with me every moment. I feel cut off from old age, it’s true, but that’s not like someone young feeling cut off from most of his or her possible life.
To be honest, the effort of writing, and then my age, and the oppressive suffocation of the illness itself, and my sad conviction of the important validity of my ideas (of what my work presents), and my hapless defense of that work had so tired me that I was relieved by the thought of death. But I also wanted to make a defiant gesture at AIDS. So it became a matter of contrary style. The disease and its coercions (like all coercions) were contemptible. I figured that later on I would make meek friends with it while it killed me, but not just yet. This performance startled Ellen, who assumed for a while that I would break down all at once. (I am not sure what I myself expected, but it happened quietly and almost secretly. Ellen would describe her own reaction differently.)
She left her husband for me. She walked out on everything. No one backed her but her children. We have had fifteen years together so far. Some of those years were quite tense, with public attacks that were a bit on the vicious side. Things hadn’t been all that smooth between me and her children or me and my daughter. Some of those years had been unbelievably hard. One of her sons had been very ill, and the public attacks hadn’t let up even while the boy was sick. That first night in the hospital she tried to make up her mind that it was all worth it, but such matters are hard to resolve when you’re alone. She tells me that she felt terrified and lost. She insists that she regrets nothing. This is her discipline and self-assertion when, openly or not, one is in her charge—what she can give you, the power to give, is the chosen motto of her personal constitution. She will be omnipresent because she has to be in order to comfort you within her standards of bestowing comfort. One keeps stumbling on the rocky ground of this half-hidden omnipotence, which is the governing element of any household she runs, any love affair she is in. It is half of every kiss she gives.
Ellen’s secularity is combined with a sense of miracle and of meaningful destiny. She absorbs bad news but it is advisable to offer her hope, a way out, a line of inquiry. She is incredibly self-willed, as I’ve said, incredibly full of getting-on-with-it. Yet there was nowhere to go. She indulged me, followed my uncertain lead. She cried when she learned that she was clear of the virus; she said it depressed her to be so separated from me. And I felt that if I had AIDS, she had the right, perhaps the duty, to leave me; my having that disease suspended all contracts and emotions—it was beyond sacrament and marriage. It represented a new state, in which, in a sense, we did not exist. What we were had been dissolved, as if by radiation or the action of an acid. Perhaps the sacrament remained, but it was between her and her beliefs now: care wasn’t, in my view, owed to me anymore. I wasn’t me, for one thing. And she had suffered enough.
As for me, I would find a way through. I had rarely been ill as a child or an adult, but when I was, it was always serious, nearly fatal. I have been given up by my doctors three times in my life and for a few minutes a fourth time. This time is more convincing but otherwise it is not an unfamiliar or unexplained territory.
I was a hypochondriac, but for a good reason—I could take no medicine, none at all, without extreme, perverse, or allergic reactions. Essentially I never got sick. I was gym-going, hike-taking, cautious, oversensitive to the quality of the air, to heat and cold, noise and odors, someone who felt tireder more quickly than most people because of all these knife-edge reactions, someone who was careful not to get sick, because my allergic reactions to medicines made almost any illness a drastic experience.
I had an extremely stable baseline of mood and of mind, of mental landscape. Well, that’s gone; it’s entirely gone. From the moment my oxygen intake fell to about fifty percent and the ambulance drivers arrived in our apartment with the gurney and the oxygen, from that moment and then in the hospital until now, I have not had even one moment of physical stability. I am filled off-and-on with surf noises as if I were a seashell, my blood seems to fizz and tingle. I have low and high fevers. For a day I had a kind of fever with chills and sweats but with body temperature below normal, at ninety-six degrees. I have choked and had trouble breathing. I have had pleuritis, or pleurisy, in my right lung, an inflammation of the thoracic cavity which feels like a burning stiffness of the muscles and which hurt like hell if I coughed, moved suddenly, or reached to pick something up.
And, of course, one can die at any moment or discover symptoms of some entirely new disease. My life has changed into this death, irreversibly.
But I don’t think the death sentence bothers me. I don’t see why it should more than before. I have had little trouble living with the death-warrant aspect of life until now. I never denied, never hysterically defined the reality of death, the presence and idea of it, the inevitability of it. I always knew I would die. I never felt invulnerable or immortal. I felt the presence and menace of death in bright sunlight and in the woods and in moments of danger in cars and planes. I felt it in others’ lives. Fear and rage toward death for me is focused on resisting death’s soft jaws at key moments, fighting back the interruption, the separation. In physical moments when I was younger, I had great surges of wild strength when in danger—mountain climbing, for instance—or threatened in a fight or by muggers in the city. In the old days I would put my childish or young strength at the service of people who were ill. I would lend them my willpower, too. Death scared me some, maybe even terrified me in a way, but at the same time I had no great fear of death.
As with other children, when I was very young, death was interesting—dead insects, dead birds, dead people. In a middle-class, upper-middle-class milieu, everything connected to real death was odd, I mean in relation to pretensions and statements, projects and language and pride. Death seemed softly adamant, an undoing, a rearrangement, a softly meddlesome and irresistible silence. It was something some boys I knew and I thought we ought to familiarize ourselves with. Early on, and also in adolescence, we had a particular, conscious will not to be controlled by fear of death—there were things we would rather die than do. To some extent this rebelliousness was controlled; to some extent, we could choose our dangers, but not always. All this may be common among the young during a war; I grew up during the Second World War, when confronting unnatural death became a sad routine. And a lot was dependent on locality, and social class, on the defense of the sexual