by Paul Monette
Yet it’s still very difficult to accept that men of our tribe succeeded in obtaining these elixirs, however worthless, while the rest on the moon were clamoring. Long before Roger got sick there was a persistent AIDS rumor about one of the major players in the fast lane, a zillionaire I’d trailed through the club scene in New York while researching a script in ’83. He supposedly went to Europe every other month to have his blood replaced. It’s hard to separate such exotica from the monkey-gland youth search that has always landed the well-heeled in the clinics of Zurich. The seductive twist to this tale had it that the man regained his health completely after a year of very dicey symptoms. I know we can’t all go to Switzerland; the mind reels at the cost of that private room. I’d just feel a whole lot better if I knew for sure exactly what it was I couldn’t afford.
Roger struggled through one drug study for four months till it almost killed him, another that gave him nine months’ grace. They were closed systems that asked for anonymity, that wouldn’t have been able to expand their resources no matter how loud people banged on the door. We came into the research wing of the nightmare at the earliest stage, with the merest handful on the lifeboat. But once inside, we pleaded for everybody. Why was it taking so long? If they had it here in this room, how could they keep it from those who had no other hope? What business was it of the FDA’s?
Our own power source was a man with impeccable connections across the board, from Sacramento to Washington. He also had status as an academic insider in the UC system, such that his calls were returned the same day by everyone from the president on down. He and Roger had known one another since Roger was a kid, and there was never any question but that his full clout was at our disposal. Behind the high fence of experimental drug research he was tireless and unfailing, a mover of mountains.
And he understood that Roger and I were not going to wait; if we had to go over to France to get started on something, we would. In hindsight I wonder if perhaps we were precipitous. What they call the “honeymoon” after the first infection—when a person with AIDS will often feel better than he has in months—could well have gone on for a year or more. Nothing said Roger had to be on an experimental therapy within eight weeks of his hospitalization or else. Indeed, now I see how innocent we were about just how uncertain experiments can be. Bred as we were to literature, perhaps we leaped too quickly to happy endings. But every clock was ticking like a bomb. Having watched so many die without a chance, we couldn’t let it slide. Death was close as the wall of this room, so what did we have to lose? Besides, courage doesn’t precede action. The action releases it, like endorphins in a marathon runner.
I’d think sometimes how radically altered Paris would look when we got there, filtered as everything was now through the gauze of mortality. Over and over I’d picture the bullet holes in the stone walls on the Île de la Cité, where Resistance fighters were gunned down in the street. Here and there, beside the scar in the stone where a bullet had struck and ricocheted, was a small marble plaque: Ici tombe Jacques Vassal le 12 juillet 1944. Here one man had fallen on a particular summer’s day. If life was pocked like the walls of Paris now, at least it would be Paris, and Madeleine would be there. We wouldn’t have to live in the barracks.
Then our power broker put us in touch with a researcher at UCLA who had access to an experiment about to start in Immunology—a different drug from HPA-23, as good and perhaps even better. I’d be on the phone to Craig at every juncture, feeding him data, because he had two high-placed friends as well, one a distinguished immunologist in Houston, the other a doctor in Stockholm. For a while I couldn’t be sure if we were talking about one drug or four, but I was beginning to grasp the notion of what “antiviral” signified. All the great breakthroughs in the antibiotic department were marshaled against bacterial agents. There had never been a magic bullet for viruses, and AIDS had come along just as some small progress was being made. Or as my Ferrari doctor was wont to tell me, AIDS would prove in the end to be a great boon to medicine.
Mid-April was also the first international AIDS conference in Atlanta, the most public feature of which was Health and Human Services’ Margaret Heckler, announcing that the Reagan government was going to do something at last, now that the disease was a threat to “the general population.” The conference added precious little new to the body of evidence. It was split along French and American lines, the prima donnas still squabbling about who invented HIV. Priorities, please: there were royalties to be protected.
By the beginning of May we had the four drugs straight in our minds. Besides HPA-23 you had suramin, foscarnet and isopinosine—I know these words now the way I know Alka-Seltzer and Bufferin. Suramin, which had been around for decades, was the breakthrough drug that first successfully treated sleeping sickness. There were extraordinary accounts, more vivid with every telling, of the Lazarus waking of thousands of slumbering victims when suramin was introduced in the twenties. Like suramin and HPA-23, foscarnet was an antiviral. It was being tested in a hospital in Stockholm, where Craig’s doctor friend happened to be affiliated. They had four patients on it in Sweden—four in the whole world, that is—and it seemed even more of a gamble than Paris. They hadn’t even set aside the barracks yet in Stockholm.
Though isoprinosine was being touted as an “immune booster,” right from the start several doctors we talked with discounted it as junk. As one of them said about a later cure-of-the-day: “You might as well drink your shampoo.” Nevertheless, isoprinosine was available over the border in Mexico, and already there was a pony system set up to go fetch it in Tijuana. Suramin sounded to be the most promising of the lot, but in truth the promise was based on almost no hard data at all. More to the point, suramin was the drug whose efficacy trials were set to go at UCLA.
I’ve here collapsed a process that took eight weeks between knowing nothing and Roger’s getting his first dose, because the struggle for the drug gave us a great surge of purpose that colored everything else. Any news about any drug could cut through my blackest despair. Also, there was a sea change in our perspective as we heard the tale of the ragged band gathered outside the high walls, shouting and pelting stones. We came to understand just how deaf the collective Reagan ear had been in the first four years of the calamity.
And if the government was stone-deaf, the press was mute. The media are convinced in 1987 that they’re doing a great job reporting the AIDS story, and there’s no denying they’ve grasped the horror. But for four years they let the bureaucracies get away with passive genocide, dismissing a no-win problem perceived as affecting only an underclass or two. It was often remarked acidly in West Hollywood that if AIDS had struck boy scouts first rather than gay men, or St. Louis rather than Kinshasa, it would have been covered like nuclear war.
In September ’83, Cesar was circa case two thousand. By March ’85, Roger was number nine thousand, give or take. In addition, there had to be one or two hundred thousand others suffering symptoms of AIDS-Related Complex (ARC)—diagnosed or not, people who just felt awful and kept getting sick. So the lucky few dozen who had a shot at suramin were the first to receive the slightest therapeutic glimpse of daylight. To be sure, hundreds in California were self-medicating with isoprinosine, and there were the restless travelers like Tom Kiwan. KS was being bombarded with chemo: Cesar went on vinblastine starting in January, and had already started to lose his hair. Even the rage for macrobiotic had begun, though many felt it wasn’t high-caloric enough for a disease that tended to waste people.
But for all that flurry, I can’t say strongly enough what a quantum leap the antivirals were—the possibility at last of treating the underlying condition. And here was a free ticket. I think we both felt a quickening of pride to be pioneers, and of course we thought the drug would work. One night in the middle of the intelligence gathering and string pulling, Roger and I sat with chairs drawn up to the stereo speaker, huddling to listen to a static-ridden tape. A few days earlier Craig had flipped on his journali
st’s Sony while talking to his research friend from Houston. The man discussed each of the four drugs, and though he continually stressed that none was a certain answer, Roger and I could not mistake the suppressed intensity of his eagerness to see them tested. Hunched like a couple of Poles or Czechs listening to Voice of America, Roger and I exchanged a wondering smile.
But the roller coaster didn’t go away, even if I finally had something positive to occupy my afternoons between spurts of humorless script dialogue. And we did begin to open our lives again to friends and evenings out. No event was simply itself anymore, of course. But I look back at some of those evenings now, and to a camera eye they’re almost the same as before the war. People didn’t have to know it was AIDS to be there for us, with all their blissful sameness. On Friday, April 12, an actress friend with serious medical problems of her own, which wobbled her muscles and made it hard for her to walk, called and announced she was bringing over dinner. “I only make one dinner,” she said. “Curry. So that’s what you’re getting.”
Roger was very tired from the week at work, but we had a lovely evening with this lady, who’d always been wise about how to bear the sting of critics. Once we saw her do a Beckett play, a monologue in a rocking chair, that was a tour de force of concentration. In the summer of ’84 she’d performed a monologue of her own, Conjure Woman, sitting on the edge of a stool, gesturing like a dancer. She still managed to act though she could barely walk, and thus she passed the test of those whom I would listen to at all these days.
After she left, Roger and I were in the bedroom watching the news, when a friend called to say the designer Angelo Donghia had died that day of AIDS. I’d never met Donghia, but it struck me even then that here was a secret that didn’t go public till he was gone. How closed off had he been at the end, I wondered. The shock of the sudden deaths is still disorienting, especially among the celebrated. It’s like they’re snatched out of a chorus line with a hook.
And the obituaries are telegraphed instantly through the underground. Part of this is prurience, of course, but more it’s the need to say out loud what the press and the wary so often blur: died of pneumonia … leaves a sister and a Persian cat, Meow.
Because Roger was lying right beside me I couldn’t not tell him about Donghia, though I quickly learned there was no need to drum-roll the names of those we didn’t know. We had enough of our own. Roger was always visibly pained to hear about anyone dying. He wondered now with bitter dryness if Donghia had made it the full three years.
Yet in spite of the late bulletin, I note in my journal that we ended the evening by floating the notion of being grateful for a good day. Before he turned out the light, Roger said with quiet amazement: “I’m really looking forward to tomorrow.” As if it were any old Friday night, with all the bourgeois pleasures waiting on the morrow, from Koontz Hardware to the County Museum.
Saturday night Kathy Hendrix had a send-off party for her friend Camille, who was heading for a year in London to write a novel. It was to be our first occasion since the hospital bigger than two or three people. Somehow we had to balance our trepidation against the need not to build a prison around us. As it happened I had to leave Roger off at the door to Kathy’s building in Westwood, because it’s surrounded by fraternities, and the parking’s insane. I ended up having to park the car five minutes away, and I ran back to Kathy’s in a fevered panic, horrified that Roger was moving through that crowd defenseless. What if somebody kissed him?
I never quite recovered my equilibrium, especially when I saw there were thirty-five people milling about. Roger sat on the sofa and chatted with Jill Halverson, director of the Downtown Women’s Center, whom some of us call Saint Jill, though she is far too wry and irreverent for beatification. Roger was doing the legal work for the resident hotel that Jill was renovating for the women of the street. Meanwhile I wished Camille good luck with her novel, trying to push away the thought that we wouldn’t be here when she returned the following spring. She spoke of the flat she’d be living in near the Thames, and it was as if I kept drawing a black curtain over every green and civilized English memory. Ten months before, Roger and I had wandered in St. James’s Park on the blooming day before the Trooping of the Color. That was the end of England; nothing to speak of there anymore.
I bumped around the party, hovering over Rog, not knowing how to talk to people who knew me before the verdict. I felt as if they expected me to be voluble, firing off one-liners, and I couldn’t deliver. For his part Roger was easy, without any self-consciousness, choosing to talk to those with whom he could start in midsentence. If he seemed a trifle subdued compared to before the war, it was brushed aside by the pleasure people took in seeing him again. Indeed, a friend who was outside the secret recalls that Roger seemed fully recovered that night, such that the friend dismissed any lingering worry over AIDS.
I tended to be happiest on the way home from such events, rather than at them. I’d be so thrilled that we’d brought it off, and then it was such a comfort to talk to Rog about whom we’d seen. Whenever Cesar was down, we’d always say we couldn’t wait for parties we gave to be over. At midnight Cesar would murmur about the guests who had settled in: “Don’t they understand we have to analyze all of this?”
On Tuesday the sixteenth I had an appointment with my dentist in Santa Monica. I left Roger at home, having convinced him to work mornings in the study, then have lunch and a rest before going in to the office. I didn’t want to go out at all when he was home, and the whole idea of dentistry seemed as vain now as rhinoplasty. I don’t know if I thought the next part through in advance, but I don’t think so. I was sitting in the hygienist’s chair, and this perky round woman came in and prepped her table for the cleaning. I said, “I think you should know that I’ve been exposed to the AIDS virus.”
She backed away in abject horror and ran from the room. There was a spate of frantic whispering in the hall, and then the receptionist came in and asked me to move to the main examining room. After a minute Dr. Kurtzman himself came in, obviously shaken but rigorously professional. He expressed genuine sympathy that I had two friends who were down with AIDS, then began the process, awkward for him as much as me, of donning gloves and mask. I couldn’t tell him one of the two was Roger, who’d been his patient longer than I and took far better care of his teeth.
This was three months before dentists in L.A. reached a consensus that they had to protect themselves generally, because who knew who was gay or sharing needles. I should have been grateful for Kurtzman’s conscientious handling of the situation, but at the time I was staring up at his white isolation mask, which seemed to clinch that I was as much on the moon as Roger. In some contorted way I wonder if the incident didn’t reassure me, make it easier to believe Roger and I were in this thing together. In any case I haven’t been back to the dentist since, though a molar has cracked in half. Roger wouldn’t be returning either, he who never missed a six-month checkup. You get to a point where you don’t seek out elective procedures anymore: if it’s not busted don’t fix it. Meanwhile I cried so brokenly driving home from Santa Monica that I had to pull over till the storm passed.
I had an abrupt call mid-April from Joel, to say that he and Leo were moving to New Mexico. They’d had enough of L.A., and besides, Leo was on permanent disability from the Feds and didn’t have to work anymore. I was at a point where I’d fly off the handle at anything. Joel’s call left me seething for days, because it didn’t seem fair that he and Leo should get a paid retirement while Roger and I had to keep on working. Which didn’t make a lot of sense, since Rog wanted to work and was exultant to be back. I was the one who’d had enough, who longed sometimes to cash in and do nothing, waiting for dusk on the final mountain. When I hung up from Joel I felt an enormous relief that I wouldn’t have to talk to him anymore. It was still an insupportable business to hear about someone else’s AIDS and have to pretend to be well and strong.
We had a bad scare in April. One morning we were u
p early to go over to UCLA for a checkup with Dennis Cope—I think we saw him every other week at first. Roger came out of the bathroom and said he’d had a moment of temporary blindness in one eye, almost as if a bright light had been flashed in it. We’d only heard an anecdote or two about the blindness that came in the wake of cytomegalovirus retinitis, the ravaging eye infection everyone trembled at the mention of. We knew it by its initials—CMV—and though the virus can invade any number of organs, including the brain, if you said CMV to a gay man then, you were talking about going blind. There was no treatment for it in ’85.
Cope reassured us a couple of hours later that it was probably just a sudden shift in blood pressure, not significant otherwise, but he made an appointment for Roger to see Allan Kreiger, an eye surgeon at Jules Stein. Kreiger examined Roger in turn and found nothing except what are called “cotton-wool patches” in the retina. These often appeared in AIDS patients who’d come through a bout of pneumocystis, but as far as the doctors could determine, the patches remained inert. Once we had got past the crisis, I pictured the patches like puffs of cloud in the retinal sky. But I’d held my breath, heart hammering, when Kreiger focused his lens to peer into Roger’s eyes.
Kreiger is as temperamentally unobtrusive as Cope, a spare eloquence underlying his measured tone. I think it was the cello he played in his extracurricular hours. Roger, who’d played the viola in high school, responded to his refined and cerebral nature. They also had a mutual friend, with political views to the right of Genghis Khan, and they traded a laugh over him. A doctor’s appointment can become quite giddy when the news is good. It’s as if for a moment you are no longer exiled—no longer one of them. The day we first met Kreiger we were as sharp-eyed as anyone, 20/20 and holding.
