By Amy Hoffman
Duke University Press Copyright © 1997 Amy Hoffman
All rights reserved.
Living with AIDS
I hated myself during the era of Michael's sickness. I pushed myself into the middle of it, and then I not only resented him and his needs and his crazy demands, but I also became jealous of anyone else who took care of him, who stopped in for a visit even. I wanted to be better than all of them.
And I was worse. People would say, "You're wonderful to do so much for him," and I'd feel they'd exposed my hypocrisy. For example, Fran called me last night. She and Stephanie miss Michael and often talk about him.
I don't. And I don't miss him.
They want to get together with me so we can all talk about him. Fran said she drives by his building and looks up at his window. The lights are on; there's a new tenant. Actually, I knew that. I've driven by his building and seen those lights, too. My theory is that it's the guy who lived in the tiny studio next door, Frank or something. Mike had a one-bedroom. It's okay, Frank deserves to move up in the world, a sweet, bubbleheaded young thing who worked out a lot at the gym so that when we were clearing all the junk out of Mike's apartment he was able to be very helpful lugging boxes of papers and bags of trash down the stairs.
Frank wanted to help me carry the air conditioner, which I had forced Michael to buy during the summer's heat wave —I took him shopping at Lechmere for it. Imagine that—Michael in the appliance department, walking slowly down the aisles as though every step pained him, and of course it did, his neuropathy, but also he ached with disapproval of all that stuff. It worked out, we bought the thing, but only because the salesman was Italian. At one time Mike had lived in Italy; he spent his years there adoring the Italians—their dark sexiness, their emotionalism, their anarchist politics. The salesman was a middle-aged Sicilian who unbuttoned his shirt to show us the scar from his heart surgery. He couldn't take the heat either.
I didn't want help from Frank or anyone else. I wanted to carry the air conditioner down the stairs with superhuman strength. By the time I got it out to the car I was faint, and I had to rest for a moment on the front stoop of the building, head between my knees, as Mike himself must often have done. I haven't unloaded it yet either. It's in the back seat, but I'm not worried; it's too fucking big to steal, and it's only April. The heat's still on.
Frank even let us into his place to use the phone. For all I know, he isn't bubbleheaded at all. I think I heard something about medical school. Maybe he thought that if he was nice to us he'd have a better shot at Mike's one-bedroom apartment, not that we had any particular clout with the landlady. I'm sure Mike refused to have anything to do with Frank the whole time they were neighbors, as nice as Frank was, sticking his head out the door all the time and offering help, and Mike would have gotten all pissy about our inviting him in and allowing him to get involved with Mike's personal boxes. He would have sulked in the corner like a ghost, refusing even to say hello, and I would have had to chatter away to Frank so he wouldn't feel completely unwelcome. Mike would have disapproved righteously of Frank, and after Frank left he would have abused him for spending his time on something as trendy, vain, and politically irrelevant as working out at the gym, not to mention going to medical school. When the reality under all Mike's sulking would have been that it was he, not I, who wanted him there.
Frank was too cute. He was a distraction.
I knew Michael the same way I know just about everyone I'm close to in my life: he and I worked together at Gay Community News years ago. It was quite a time —the late seventies, no AIDS. None. I was the managing editor and Mike was the office manager, and here's a story: once we got a student intern from the University of California. Scott —I still see his byline in the gay press from time to time. He wrote us a card, and then one day he showed up in the office.
Shoulder-length blond hair, bright blue eyes, muscles, a tan. A real California surfer. I'd learned enough about gay men by then to think immediately when he walked in: "This is trouble." The office would be buzzing for weeks with all kinds of intrigue, rivalry, drama, no one getting any work done—when they were supposed to be training the kid, not seducing him. Sure enough, soon there was Scott, sitting on Mike's lap. But later, Mike told me angrily to keep Scott away from him, away from his desk, away from his whole side of the office. He didn't want to know he was around. He demanded I send him back to California. Like it wasn't a free country, and Scott couldn't be an intern and a flirt if that was what he wanted. Mike denounced him: he was a distraction. So, it wasn't only the HIV that brought out that desire and fury in him.
I can hear Michael say it, in that deep voice of his, which people always, always asked about if he called me at work, even straight men. I could've put money on it: "Who is that guy with the sexy voice?" It was remarkable. If they only knew. Michael, in his rags. He patched his clothes himself, but not neatly, since he didn't believe in that. On his favorite shirts the thread was stronger than the fabric, so it frayed rather than mended them, and the colors never matched. A seamstress he wasn't, but he was terrifically proud of his lousy work. Often he didn't bathe, and he didn't do much laundry, either. This was before he got sick. It had nothing to do with weakness or fatigue. Cleanliness, sanitation—he believed these were bourgeois affectations. It was a political position. The native Americans, I used to want to point out to him, were bathing daily when the Europeans thought immersion would kill you. He was interested in anthropology and of course in deferring to the leadership of indigenous peoples. But I didn't want to be rude, and I could think of no way of acknowledging his body odor with humor or tact; rude was a word of his, he used it a lot.
Michael often smelled, and I, bourgeois that I am, never liked to touch him. He wasn't a touchy person —I'm not either—so maybe he didn't notice. Occasionally, when we were leaving each other, we'd stand side-by-side, and he'd give me an awkward squeeze around the shoulders, but usually I just waved foolishly at him, fluttering my fingers. His answering wave was dignified—a quick jerk of his open hand to the side. "See ya." In that voice.
One evening, when he was on the respirator, he made me lie down in bed with him. I didn't understand what he wanted at first. And of course he couldn't talk. He had to write everything on a yellow pad on a clipboard that was labeled "Respiratory Crisis Communication Aid Device" or something insane like that, although it was nothing but the most ordinary of clipboards, worn away and cracked along the bottom. By the end of the day it had become such a strain that his penmanship was all shaky, and he was writing one line on top of another. He couldn't see straight. I was proposing all sorts of things — "Do you want some water? A painkiller? Should I get the nurse?" — and finally he grappled my head down to his chest, and I lay there stiffly, the intensive care nurses peering at us through the door, until his arms around me relaxed in sleep. They all thought I was his wife anyway. It happened one other time after that, the night I stayed over at his house, but he didn't have to force me then. He wanted comfort, as anyone would, and I thought, "I had set my limit at this, but we're way past the world of reasonable limits now," so I tried my best to lie beside him calmly and generously.
Frank. Michael resented encountering healthy, vigorous, sexy men. They aroused him, yet toward the end, the last six months or so, even before that, he had lost the emotional and physical strength for arousal. It would make him furious: he never lost the energy for that. He felt they were rude, parading around in front of him. The beach in Provincetown made him literally sick. He shouldn't have been out there in the hot sun, but he insisted, when anyone would have known what it would be like. There are places back in the dunes, when the tide comes up, where I've happened upon flocks of men floating naked on inflatable toys in the warm tidepools. It's like a porno movie, only not grainy or sordid, but sunwashed and kind of sweet. Mike had some fantasy of what would happen to him back there, and it overrode what little good sense he had.
Here's another fantasy of Mike's: Pointing out a guy rolling down the street, he told me he wanted to find a boyfriend in a wheelchair.
With such a person he wouldn't have had to feel ugly or emaciated. He would take care of him.
Michael was brilliant, no question, spoke three or four languages, played the piano by ear, but what an idiot he was. He thought he was taking care of himself so well he was ready to move on to others. He never shook that fetish for the paternal role. Finding a young man on the street and reforming him. Advising, providing, fucking him up the ass until the boy spoiled it all by ripping him off or getting drunk and hitting him over the head. Michael never figured out what all of us who appeared around him were doing there. Why he needed us. At least, he never acknowledged it, never thanked anyone. Quite the opposite.
I tried to think daily about Maimonedes. In Hebrew school we wrote in blue notebooks with a picture of him in his turban on the cover. Hundreds of years ago he was a doctor in Spain, and the Jews are still proud of him. He wrote that there was a ladder of charity with eight rungs. At the bottom rung, you ask me for something; I give it to you. Nu? It's good enough for most people, but the righteous work their way up to the higher rungs, where the interactions are unsolicited and anonymous. At the top, giver and receiver have no knowledge of one another. The ego of the giver, her desire for the indebtedness, the enthrallment, of the receiver, never enters in. I agree with Maimonedes about this; he knew that gratefulness would not keep us taking care of one another. The recipient of your gift doesn't want what you've given, or wants more, or doesn't recognize that you've given anything at all.
Michael didn't thank me, or anyone. He might talk enthusiastically about one friend to another, but never directly to that person. Like the time he refused to speak to Jenifer in the car on the way home from their weekend in the country. She took him to visit a lesbian writer well-known in certain radical circles with whom Jenifer, notoriously nonmonogamous, was having an affair. The affair included the writer's lover, also. To everyone else Mike raved about this visit, speaking in an especially sycophantic way about the writer's home and her attentions to him, so that anyone hearing him felt she couldn't possibly give him anything nearly as precious as what Jenifer had given. And Jenifer had genuinely wanted him there. She invited him without second thoughts, without regrets, at least until he turned on her. So it's true that I, at least, could never have given him anything like that. If I were Jenifer, I would've resented his presence, the demands on my attention taking me away from my exciting new lovers. Jenifer herself heard none of Mike's ravings about their trip. She thought he was angry at her, and she was hurt. She could think of no reason for it. And maybe he was.
He did say one thing to me the night I stayed at his apartment. It was his last night at home before the final time he went into the hospital. I didn't want to stay over, but I had to. Others had already taken their turns cheerfully. I didn't want to sleep at his place. I didn't want to cover myself with his scratchy pilled blankets and clammy sheets. I didn't want to use his filthy bathroom in the morning, or his coffee cups. But he couldn't stay in his apartment alone—we had all agreed about that — and there was no place else for him to go. Not that he wanted to leave. Didn't see the need. The view from his bedroom window of sky and the trees of the Fenway was one of his final pleasures.
Diarrhea kept him up all night. He wouldn't call for help, but I would wake when I heard him crashing around. His body wasn't telling him anything anymore, and when he would finally realize what was happening, he wasn't strong or quick enough to get himself across the narrow hall to the toilet. He refused to use the adult diapers we had bought or the bedside commode we had ordered. Maybe he associated the commode with intensive care. Although there, he'd insisted on the commode; the nurses wanted him to stay in bed and use a bedpan, but they didn't always come when he called. So he'd struggle up to find the toilet, and when they finally arrived they'd find him collapsed on the floor. Eventually they tied him to the bed, and I had to get the chaplain to intercede. Mike promised to behave after that, and they brought in the commode as a reward. I spent the night I stayed at his apartment cleaning off his bum when he didn't make it, mopping shit off the floor, and helping him in and out of the bathtub. After each episode, he'd doze off briefly, then it would start all over: I'd hear something, Michael standing in the bedroom doorway, moaning, shit spewing from his behind as from a monster in a Boschian Hell. The mop, the bath. Toward morning, he told me it was the best night he'd had in months. "This is how I live," he said. "No one knows what I go through. The others didn't help me clean. They didn't wake up." He asked me to lie down beside him until he fell asleep. "Your presence is a comfort," he said. "I'd say it was your aura, if I believed in things like that." He laughed his low laugh.
"Thanks," I said. It was the only time I felt that I was doing right after all—after all my doubts, all his complaints. I cherish it, although it's not pure. I know the others helped, and without my petty discomforts and resentments. He didn't have to deny them.
A million times I tried to analyze my jealousy. I had vowed to take care of him, and I fulfilled that vow. With the virus, you make a choice. When someone gets sick, you're either in or out. That's it. No middle ground. I visited Mike at Gay Community News when he first started getting the fevers—he was still working there after twelve years, unlike me, he never quit — and I took his hand and told him he could call on me any time. It was an impulse, sitting together in this dark little cave of an office he'd constructed for himself at the back of the building, but I was serious, although he didn't take me seriously at the time. He wasn't really paying attention — his fever was going up. I once heard a show on National Public Radio about kidney donors. When the doctors called the potential donors, they responded instantly: "Okay. Sure." Or else: "Nope." Astounded, the doctors asked them didn't they want to think it over? They said "What for?" That's exactly how it happened to me. There's nothing to think over when you're confronted with a decision like that: yes, you do it; no, you don't.
Later, Mike asked me to be his healthcare proxy, to make decisions in case he couldn't, and we went to his doctor to discuss it. I showed the doctor a chart that I'd sent away for from the American Medical Association that listed catastrophes across the top —"in a persistent vegetative state," "brain damage and terminal illness," "brain damage and no terminal illness," etc. —and treatments down the side— "cardiopulmonary resuscitation," "mechanical breathing," "chemotherapy," etc. I thought the doctor would find me an exceptionally well-prepared and thoughtful proxy, but he looked at the chart impatiently. "You can't possibly anticipate every eventuality. It's more important to talk about this together, so you understand how Mike thinks."
That'll be the day.
Obediently, I tried bringing it up a few times, but Mike wouldn't let me steer our conversations in that direction. We often talked long and deeply, but about topics that Michael introduced. These were wide-ranging, but dying wasn't among them. Age, yes. Loss of youth and beauty, yes. Infirmity, yes. But not the persistent vegetative state. In the end, Mike left me twisting in the wind.
Because he didn't want to bother anyone. That was how he thought. I would check on him each day or two, but rarely did he call me without any prompting, unless something had set him off and made him feel exceptionally lonely. He'd tell me he longed for a lover. He'd sigh and flutter his hand over his chest, although of course he pushed away any potential lovers. And they did appear, until nearly the end. Peter was one. Mike banished him from his life, keeping only a huge blob of a cactus plant, spiny and hideous, that Peter had given him. There was also the New Yorker who wanted to take him on romantic weekends to the Cape. Maybe they were too old for him, too close to his own terrible age, which was old enough, yet also so young and unfair. But he also spurned a boy who latched onto him at the newspaper. The boy gave him a blowjob, and then, seeing the stars in the boy's eyes, Mike said he'd only been interested in the sex. He surrounded himself with women like me and a few mumbling men with untended beards. They were gay, but they lacked that gay grace, instead shlepping their bodies around like they were taking out the garbage.
Then came Timo — a straight boy with long hair and an Asian girlfriend—Michael's last, his greatest distraction. (Continues...)
Excerpted from Hospital Time by Amy Hoffman. Copyright © 1997 Amy Hoffman. Excerpted by permission of Duke University Press.
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