by Paul Monette
We were not big fans of future talk. Roger was adamant: Under no circumstances would he go through catheter surgery unless it was absolutely necessary. If the acyclovir was going to be short-term, he would steel himself to the needle sticks. Compared to the catheter’s invasion close to the heart, the discomfort of the bee stings was tolerable to him, though I would flinch if it took more than one stick to find a vein. The problem was, we saw Kreiger every week, then twice a week, and he kept saying the same thing. The infection was holding back again, but he didn’t dare withdraw the acyclovir. We tried not to plead about the trouble, expense and pain of the IV, and Kreiger certainly didn’t advocate the Hickman catheter implant, but he couldn’t in conscience stop the drug.
The vein situation grew more intractable as the days passed, especially when a new nurse came on, or one who had a lousy needle technique. One Saturday midnight the weekend nurse was clearly freaked about AIDS. She missed the vein a half-dozen times, till Roger was unhinged from the stress and discomfort. I pleaded with her to call someone else, but she finally slipped in a tiny butterfly needle, something she’d use for a baby. “This man don’t have any veins,” she said as Roger dozed through the IV, exhausted from the trauma.
Then we found out we’d used up all the nursing privileges covered by Roger’s insurance, and we’d have to start paying for the nurses ourselves. I think it amounted to a thousand or fifteen hundred a week, and now we seemed to be more and more assaulted by the system we’d bought into, and yet there was no way out of it. Sometimes there was a glitch, and nobody showed up. Then I’d be frantically on the phone, while various answering service drones informed me it wasn’t their problem, and why didn’t we go to the emergency room.
One mid-July night we had to. Cajoling and whining at the service did no good, and we were afraid if we missed a dose it might turn out to be the final branch that poked the eye. So we went to UCLA at 1 A.M. and didn’t get home till after five. And when Roger was finally sleeping in the cubicle at Emergency, the drug going in his arm, I took a walk around the campus—brisk and intense as the walk I took the day of the eye surgery, the same route even. But this time feeling utterly numb, just trying to get through the one night and sweat off some of the pounding anxiety.
It’s hard to describe the strange double nature of the house in July, for if all this arduous drama over the IV was constant, three times a day for an hour, we also put it aside in between, or what was the point of being home? The friends still came, we still stepped out for dinner. We went after the windows of time with renewed intensity, seeing by whatever light was left. Alas, Roger was realizing with a growing sense of fatalism that his sight wasn’t going to come back any more than it had, which wasn’t much. Not quite shadows, not quite blurred, but only vision enough to see at home, where everything was the same, where the furniture is so actual it furnishes one’s dreams.
We’d always have to be back by ten-thirty or eleven, when the night nurse would be coming by, so there was a Cinderella clock ticking behind every foray now. One night Kathy Hendrix had us to dinner with four or five friends, but it was difficult for Rog to separate so many voices, and his isolation tired him. After dinner Charlie passed around pictures of his new puppy. When they came to me I described each one to Rog and then passed it on, till everyone was sad and introspective, full of hollow dog remarks but thinking about blindness. We got home a bit late, or the nurse was early, and she had a tantrum at having been kept waiting. Roger shook off the Nurse Ratchit reprimand, but I was pissed, sick of the tyranny of their system. Besides, they couldn’t get the goddam drug in his veins. Yet I made no recommendation for the catheter implant, because I kept praying the need for the drug would be over soon.
On Sunday, July 20, there was a black-tie dinner at Sheldon’s house for all those who’d sponsored tables at the last Gay Center dinner. It was a thank-you party designed to get the ball rolling for the next fund-raiser. During the week or so before the twentieth we kept shying away from saying we’d come. The IV business was too intense, and we had no idea how Rog would feel. But Sheldon gave us the leeway to decide at the last minute, and when it turned out to be a beautiful day we decided we were in the mood for a midsummer jaunt. So I hauled out the tuxes. Roger couldn’t fit into his pants—his weight was steady at 147/148, and he had a belly now from all the rich food. So he had to wear my pants, and I was able to suck in my gut enough to wear his. Since his tux has a satin finish and mine is a wool worsted, we were very Mutt and Jeff in the fashion department. Yet there was something so giddy and promlike about the dressing up, even the running around passing the pants back and forth, that we drove to Bel-Air in a jocular mood.
Still, it was a wearing business dealing with the crowd and the whole choreography of the event. We walked across the living room, Roger on my arm. I nodded to various people, and Roger didn’t, of course. Our brothers looked over at us soberly, but stunned and frightened too: There but for fortune … We made it out to the terrace; the dinner would be served there and the light was best. We stood by the wall where it looks out over an unbelievable view at sunset, Mount Baldy to Catalina. Roger smiled at me shyly. “Well, here we are.” Then Sheldon’s current friend came over and gave us an ostentatious greeting, with a stage kiss to Roger’s cheek that made me want to claw his eyes out, I was so afraid of the germs.
Friends appeared from every side to shore us up, however, and once we were seated for dinner the strangeness dissipated. Rand had arranged the seating carefully, so the people on either side of us were at ease as I told Roger where everything was on his candlelit plate. A full moon rose in the middle of dinner as if on cue, so luminous and close that even Rog could make it out against the dark of the summer sky. Rand and Eric Rofes, director of the Center, gave sober pep talks on the symbolic importance of the Center in a time of tragedy and backlash. The Burger Court had just announced its cruel ruling in Bowers v. Hardwick, in which the sodomy laws in Georgia were allowed to stand and no inherent right of privacy for homosexuals existed. The Constitution plainly did not include us. For days Roger had been talking passionately about the case, praising the stirring dissent of Justice Blackmun, and impatient to hear every word the papers printed on the subject.
When Rand spoke about AIDS I squeezed Roger’s hand under the table and happened to look over to the next table, where I caught the eye of a man who’d just been diagnosed with KS. We exchanged an ironic smile. When the full-moon dinner was over, Roger and I had to hurry to get home in time for the evening dose. Sheldon came over and chatted a bit before we left, awkwardly filling up space with banter about his date for the evening. We greeted him pleasantly enough, though by now he was high on my shit list. He’d told his father two months before, after the dehydration scare, that he’d check in and visit with Roger three times a week. I don’t know where he came up with that symmetrical number, but in any case he hadn’t been up to visit at all. Tonight was the last time but one that Rog ever saw him, however dimly. Yet the black-tie affair at Sheldon’s was a true high point of the summer, even if I had to put away our tuxes, with their proper pants, wondering if we’d still be around for the Center dinner in November.
Just after we got back from Greece in ’84 I’d bought a book of photographs by Eliot Porter, The Greek World. Porter had taken the first picture Roger and I ever bought together. His Greece book was full of magnificent light and eloquent shots of every totem shrine, but when I picked it up now, two years later, I began to read the text, an evocative historical essay by Peter Levi. I’d rattle off bits of it to Roger every few days, and sometimes a passage would send us back to the guidebooks and postcards. Then we’d talk again about the early morning in Delphi or the walk through Phaestos in Crete, the whole ruined palace all to ourselves.
From my reading in fits and starts I kept coming across references to Socrates being put to death in Athens, and commentators would refer to the event as if one already knew the whole story. But I didn’t. I vaguely remembered from
freshman philosophy at Yale that Socrates was thought to be some kind of heretic and was tried and executed for having a bad influence on the youth of Athens. Yet it made no sense to me now that a state as perfect as fifth-century Athens should kill off its wisest citizen. So I told Roger perhaps it was time we read some Plato.
One evening during the IV struggle, Kathy Hendrix dropped by after supper with Jill Halverson, for whom Roger had done the legal work for the Downtown Women’s Center residence. Jill gave Roger an update on the shakedown period that followed the May opening of the residence, designed for homeless women disabled by chronic mental illness. At first some of the women had slept on the floor instead of the beds because they were used to bedding down on the street. During one of his hospitalizations a card had arrived for Roger at UCLA, signed by all of Jill’s ladies. When she received a social service award in 1987, Jill accepted it
on behalf of the women of Skid Row and in memory of Roger Horwitz, who even while he was dying of AIDS volunteered his legal services so that women without a home might have one.
Kathy told a story that night about a friend of hers at the Times who’d gone to Cabo San Lucas for her honeymoon, staying in an old hotel that was built along a cliff face hollowed by caves. As she and her husband slept, a creature that turned out to be a sort of equatorial raccoon crept through a crevice into their room. Kathy told the story in wonderful slapstick detail—“Honey, where’s all the fruit that was in this bowl?” In the middle of the night they woke up to find the creature curled at the foot of the bed, asleep. They about died. Roger grinned expectantly throughout the telling, then at the end started to laugh—but I mean he laughed till he gasped and the tears streamed down his cheeks. He rocked in his chair for a full minute, holding his side where the shingles were. For a moment I was worried he might hurt himself from the strain, but it’s hard to stop a man who’s been through so much pain from laughing. Days later he’d suddenly think about the raccoon on the bed and start whinnying with laughter again.
Still he was on and off AZT, his white count followed closely so there was never a repeat of the tenth-floor isolation. The calls and inquiries about the drug had never ceased, and now they only intensified as it was bruited that the FDA would soon relax controls and permit wider testing. All the other antivirals were a bust next to AZT. There was hope that if the drug was given soon enough, before breakthrough to full-blown symptoms, the side effects to the blood would not be so severe. Ten men I know are on it now and cruising along just fine, no breakthrough at all. The rage is still unquenchable when I think if the drug had been on line a year earlier, then Roger would be cruising along as well, even now. The “what ifs” do not go away. Of course I knew to be grateful that he got AZT at all, just as he and I both were certain it brought him back and was giving him time. But the longer I watch the government do nothing, the months thrown away with the lives of my friends, the more I see it didn’t have to happen. The drug was there on the shelf in ’83 when they finally pinned the virus down, but nobody bothered.
We’d reached the end of the line on the IV issue. Gently but insistently Cope and Kreiger both came down on the side of the catheter, and finally Roger couldn’t take the needle sticks anymore. Everyone was united in saying he’d have no problem with it—there were cancer patients who’d had catheters in for three and four years. We’d be glad of the independence, they said, and now there was no reason we couldn’t take over the IV from the nurses. It all made sense, and I was convinced. It was only when we had to make the appointment for the “procedure” that Roger admitted to me why he’d been reluctant for so long.
“It’s the beginning of the end. I know,” he said with a certain anguished resignation. I recall being startled and leaping to reassure him. Again I wish we could’ve had the talk about how it felt, the dread of the end beginning, but something blocked me from seeing it that way. I believed in the catheter the way I believed in AZT, with missionary zeal, if only because the needle pain was going to stop at last. Roger must have seen the whole intrusive procedure as a moon appendage that would never go away, but that was the only time he ever said as much.
It was scheduled for Friday, August 1, and happily Jaimee and Michael decided to fly in from Chicago for a couple of days before. If Roger wasn’t quite so perky as he was when his parents visited in June, he still looked terrific—no, that’s an exaggeration. But he was up to his weight; his color was good; he was mobile and alert. Besides which, he was proud of having legal work to do every day, and he spoke with Jaimee and Michael as if there was all manner of things to talk about besides AIDS.
While he was napping Jaimee went out and bought him a yellow sweater. I’m sure he was able to see that color when he opened the package, unless it’s just the joy of the moment I’m remembering. Maybe we told him the color. Sheldon drove over to say hello to his sister but begged off going to dinner, finally coming to the City Restaurant for coffee because Michael insisted. The dinner was clumsy, with Sheldon talking about the bank and never addressing a remark to Roger, and Jaimee and me on either side of Rog, helping him through the intricacies of the meal.
Families do not always come together neatly in a tragedy. By now Roger and I had given up on getting any emotional support from Sheldon, but that night for the first time I realized how gray and frail Sheldon was looking. He’d always possessed an exuberant vitality, especially on the playing fields of power. Now in his mid-fifties, twelve years older than Roger, he seemed like an old man as he sipped his decaf. Was he sick? Was he pre? I didn’t even want to think about it. But I only grew more suspicious when, a few weeks later, he went away to a health spa for a couple of weeks of rest. He wasn’t the resting type, and all the while he was gone he left no number where we could reach him. He would call in, cheerful and upbeat, but the calls were always brief.
On Friday morning Jaimee and Michael took Roger over to UCLA to check in, but they had to leave for the airport at noon, and the surgery was late. We had a meeting with Dr. Ahn, the surgeon, who apologized for the tardiness. It was difficult on a Friday to get the one operating room that was fitted out for isolation. I don’t remember much about that afternoon, keep mixing it up with the duplicate operation six weeks later. I know it didn’t take long, and remember we had a quiet evening on the tenth floor after we called the families to say it had all gone swimmingly.
The catheter was a length of flexible white tubing, about eighteen inches long, with a two-pronged end so there were two ports for insertion of a needle. Between doses the tubing was coiled and taped to his skin, beside the dressing that covered the tube’s entry into the chest, a nest of stitches around it. Charlene, one of our regular nurses, showed me the elaborate protocol for cleaning a port before inserting a needle. Six swabs with alcohol, six with Betadine, using a circular motion with each swab. I watched her do it and realized I had to learn it all, and it seemed ten times as complicated as the eye medicine, the chance of infection so close to the heart frightening.
Roger’s demeanor was pretty flat that night, and Charlene observed laconically, “Roger, this is the most wimbly I’ve ever seen you.” I registered the solecism—wimbly—with all the dispassion of a writer, Bill Safire jotting a note for his language column. That’s when she told him, “Hey, you’re the miracle man,” as if to say he had to keep going. When the tenth floor grew quiet, I massaged Rog and watched a documentary about Winnie Mandela on PBS. For a whole hour I sat riveted, my eyes smarting with tears as she spoke of her children being taken away from her, the years and years of separation from her husband, her growing politicization. They take your life away whether you fight or not, so you might as well fight. Fuck Bowers v. Hardwick.
Roger was in just overnight, and we came home and moved to restore the island of the summer. The wimbly feeling of frailty passed soon enough, though Roger never quite got over his squeamishness about the catheter. I’d tell him the whole thing would seem a lot less strange if he could just see how it worked. Somehow the
mechanics of the system, watching it function like clockwork, got me past the alien part. I immediately began to study the nurses’ technique, hopeful that I could take over at least one of the daily doses. The pool bedroom was piled waist-high with cartons of supplies and equipment, the IV pole beside the nightstand. IV procedure through a catheter involves dozens of steps and a lot of English, from mixing the medicine with sterile water to constructing the hypodermic to preparation of the port.
Then once the needle is in, you have to monitor the flow, a drip about every four seconds so the drug goes in over a full hour. The nurses were good enough at it to be able to do their paperwork while the drip went in, while I would usually watch it like a hawk for the whole hour. But I learned my lesson well, and by August 10 I was able to do the late-night dose myself, without supervision. Two days later I took over at 4 P.M. as well as midnight, so we only needed a nurse in the morning. The 8 A.M. nurse would change the dressing too—another three dozen steps of protocol, which I didn’t want to get into—and I took care of the rest, thus reducing our nursing bill from nine hundred a week to fifteen hundred a month.
But our staffing changes were more extensive than just the nursing department. Stan was proving to be out of his depth when it came to the arcana of legal correspondence, and I found myself retyping his letters late at night, so Roger finally let him go. Happily, we had an old friend, Fred Sackett, who’d been trying to think of a way to help us. Fred was between executive jobs and contemplating a move back east. In the meantime he volunteered to work at the same slave wage as Stan, and early in August he began to come by twice a week. Fred was so vastly overqualified it was funny, but he made an enormous difference to the texture of Roger’s life. They quickly sorted through great tangles of files and bank accounts that I just couldn’t handle. Roger looked eagerly forward to spending time with Fred. They were about the same age, and Fred was from West Virginia, with a rolling drawl of humor dry as country dust. He kept Roger’s irony up.
