Borrowed Time: An AIDS Memoir
Page 22
"What? Is he home?"
"Saturday night, just after midnight."
I went totally blank. Then I groaned with frustration—no, annoyance—and said: "Oh Christ, how am I going to tell Roger?"
Cesar died on my black-tie birthday, within an hour of the poem and in the thick of the same thunderstorm. I don't recall any of the details after that, except that Dennis had had to go out of town, and by the time he landed in the Midwest there was a message summoning him back to San Francisco. I got off the phone as quickly as I could. As I walked across the restaurant, the seventeen years of friendship ended. I told Bob and Brenda, who were starting to look numb from all the ravages of war. We went home, I told Rog, he cried, I didn't. I never cried for Cesar.
But I tried to be there for Roger about it, because he took it hard. I remember him saying in the car one night, "Is he going back home to Uruguay?" It was the first time I ever thought of the separateness of the remains and how they could get lost again in Uruguay, the place from which Cesar had finally escaped. Bob and Brenda left on Tuesday, and I began a round of condolence phone-calls—to Dennis, to Jerry, to Diana Cobbold in Massachusetts. Dennis said he felt as if he'd lost a lover, then added that he'd have liked to pour the final urinal over the doctor's head. I reminded Jerry of a dinner party at his house five years earlier; he and I were the only two of the seven in attendance who didn't have AIDS yet. Diana, who'd introduced me and Cesar and was writing a novel about him, was as stupefied as I was. "He never had his great love," she said, and I thought: At least he had the beginning of it.
How sick was Roger that week? I don't know that I noticed anything very different. We were still struggling to hold his weight—he'd lost six or seven pounds now—and I kept taking comfort in the thought that there were people who'd lost sixty and eighty pounds. He managed to work that week too, but fewer and fewer hours. The symptoms—nausea, lassitude—remained stubbornly nonspecific. The AZT was on the way; it would be available within two weeks. If all you have to do is hold on, you let the details go.
Midweek I had a call from Chana. She was on her way out to a meeting, and there was no one to stay with Bruce. Could I please come over? She was frantic. It was only a block away and only for an hour, so I said yes, even though I hated giving up my late afternoon with Rog. As I trotted over to Hedges Place I didn't quite understand why someone had to be with Bruce all the time. Didn't he just sleep a lot, like Roger?
The air was eucalyptus sharp after the storm, the view from Bruce's terrace clear to Catalina. Alpha Betty Olson, a writer friend of his, had dropped by unexpectedly and said Bruce was in his bedroom and would be right out. She and I laughed to think how eagerly Bruce had always wanted the two of us to meet. "He gets his way eventually," she said. Then I raided the kitchen for nosh, because Bruce had a lot of friends who brought up very high-toned takeout.
Suddenly he appeared from the bedroom end of the house in a long robe, stamping in in a fury. He seemed to be mad at everything, but for a moment I couldn't take it in because he looked so awful, drained and thin and frail, much worse than when I'd seen him at the hospital two weeks before. He was angry at Chana for leaving for her meeting. Then he segued into a great rage against doctors, till he had to lie down on the sofa, exhausted by his own upheaval. Alpha Betty and I tried to engage him about one thing and another, but it was the sole occasion when he didn't want to hear about AZT or anything else positive, so I just shut up. And thought: Why am I here and taking all this abuse, when Roger's waiting at home and wants me there?
But something else was going on—something was slightly off center about this fit of anger, as if Bruce himself had gotten lost in the fire. I wondered if they were worried that he'd kill himself, and was that why he shouldn't be alone? Or was there some kind of viral static in the brain? Nothing scared me more than the brain. When I got up to leave, Bruce had calmed down, and he said, wearily but himself again, "I'm glad you came, Paulie. I'll be better next time." I never saw him after that.
Did things get worse and worse that week? I suppose they must have, but Cesar was dead and Bruce was in terrible shape, so worse compared to what? Roger's parents were the next hurdle. The night he called them in Chicago, I didn't want to be in the bedroom with him. Did I think he wanted the privacy, or was I afraid we'd be punished at last? I hovered in the hallway, dreading to hear the tears, always thrown when the stoic lost it. "I'm not getting better," he said, and then he started to cry.
"Do you have it, son?" his father asked gently.
It had always been on their minds, though they'd wished it away when they saw us in August. They told him how much they loved him and said they'd be out the next week. Once Roger had told Al and Bernice, it was my parents' turn. My brother and I agreed it would be better for him to break the news in person, so he and Brenda drove up to Boston three days after they got back from California. My mother said she'd suspected something was wrong ever since we left in August—not that Roger had looked sick, but when I'd call to check in on Saturday nights she'd ask where we were going, and I'd say, "Oh, we're just staying in tonight." Curious, the inadvertent clues you leave. My parents had lived our Saturday nights vicariously for years. Now they were generous and supportive, telling Roger he was like a son to them. By the end of the week we had both shaken families on our side.
Not seemingly such a big deal, unless you have heard all the stories from the other side. Craig's mother cut him off one night as he complained about the blood tests and the circular doctors' appointments: "Listen, this whole thing is your own fault. I don't really want to hear about it." That turns out to be rather mild, and at least it's honest. The real hell is the family sitting in green suburbia while the wasting son shuttles from friend to friend in a distant place, unembraced and disowned until the will is ready to be contested. And even that is to be preferred to the worst of all, being deported back to the flat earth of a rural fundamentalist family, who spit their hate with folded hands, transfigured by the justice of their bumper-sticker God.
Either the symptoms didn't seem to be getting worse, or they took second place to the drama of our parents' arrival on the moon. Saturday, November 17, was the Gay Community Center dinner at the Beverly Hilton, and I decided to go and host the table Roger had put together from his hospital bed the previous month. In the Hilton I ran into Rick Honeycutt, no longer impish and surferlike, looking tired and old as he told me he was off suramin. Eagerly I gushed about AZT, but he didn't want to hear about it. Several people came by the table and asked where Roger was, none of them having any idea that he had AIDS, and I said defiantly that he was doing fine and waiting for AZT. Nobody knew what the acronym meant, but they got the picture.
Charlie Milhaupt drove me home, and we went in to see Rog, who woke up in a smiling mood and said, "I just had a dream. There was this green liquid. And all I had to do was drink sixteen cups of it and I'd be fine."
The elixir dream. We laughed at the lovely fantasy of it and went to bed that night with nothing more on our minds for the week ahead than awaiting his parents' arrival and then the drug. We'd given both families a full measure of hope when we broke the news, for we had our pharmaceutical ace in the hole. But Sunday it was glaringly clear that we couldn't just sit and wait. The nausea was intensifying, the fevers were back and the fatigue had reached a stage where Roger could hardly get out of bed. We went over to UCLA for tests, and they admitted Roger, again just overnight, but by now we knew what a euphemism "overnight" could be.
And suddenly my memory is as blank as my calendar for almost the whole of the next two weeks. I remember only the bitter disappointment, to think that Al and Bernice would have to find us in the hospital. I know they arrived on Monday night, four days before Roger's forty-fourth birthday, by which point we knew he had hepatitis, of the type called NON-A/NON-B, noninfectious and probably drug-related. That would explain the nausea and lethargy, as well as the sunburned cast of Roger's face, which began to take on a dull gold flatness.
But the real point is that he nearly died that week—closer than he ever came in the whole nineteen months—and I don't even know when. You'd think the shadow of death would have your nerves screaming to imprint it. Richard Ide says he talked to Roger from Washington on Sunday night, soon after we checked in, and Roger was terrified and started to cry. "I love you, Richard," he said. And Richard knew in that instant that Roger was dying, that this was a call to say good-bye. Scrambling, Richard said he'd be on a plane and be in L.A. by Friday, so Roger had better hang on till then. Yet the fever point of the crisis had apparently passed by the time Richard landed on Friday night, so it must have been Tuesday or Wednesday Roger almost died.
But what exactly does "almost" mean? It wasn't until the next summer that I could even admit how bad it had been during the days of late November. At the time, anything anyone said about dying, however veiled, I simply didn't hear. Because he couldn't die, not with the drug just a week away. For this was precisely what was so tantalizing in the rumors of AZT, that it was turning people around even from the verge of nothingness. I recall wanting everyone to let us alone with the hepatitis—no treatment for that but time, the doctors said. We would take care of the time. Just get us the fucking elixir.
Not that our deep-throat sources weren't moving heaven and earth to acquire it. Word was that thirteen or fourteen patients were on it now, but every single one was back east and close to the National Institutes of Health. Superpower threats had to be made to coax the drug to California, and even so the manufacturer had all the time in the world. Meanwhile I had to deal with a pugnacious, cocky little intern called Runyon, barely five foot seven, who wouldn't stop running tests because he wasn't satisfied with hepatitis.
I grew maddened with all of Runyon's probing, but he managed to convince Dennis Cope that they ought to go one step further. Now came the first spinal tap, the first bone marrow biopsy, both tests as awful to contemplate—much less undergo—as medieval tortures. I remember Roger curling up in fear of the marrow test, holding my hand as Runyon, utterly lacking in bedside manner, explained the procedure in ghoulish detail. Yet where would we be without Runyon, bless him, who wouldn't stop brooding over certain ambiguous numbers, and who finally figured it out: Roger's adrenal glands were failing. I don't even remember why that is fatal; I only know it's treatable. When you live on the moon, treatable gets to be the holiest word in the language.
How Runyon crowed with triumph! He was easily five foot nine by the end of the week. And within an hour of his diagnosis Roger was on medication—Florinef, a terrific little lilac pill, one a day for the rest of his life—that would do all the adrenal functioning that needed doing. It wasn't until a week or two later that reports began to filter in through the AIDS underground that four suramin patients out of a hundred had lost adrenal function. So it was just an unlucky side effect, that grim companion of healing.
As for the suramin—water under the bridge, which seemed more lethal with every report that came in—of course I anguished to think how much we had wasted On snake oil. There's a moment in Sunrise at Campobello when the Roosevelts have been tirelessly giving some vigorous treatment to Franklin—rubbing his legs for hours for the circulation—and the doctor tells them they've been doing precisely the wrong thing. The sinking feeling is indescribable as you reach the dead end and realize you can't even go back to the fork in the road where you took the wrong turn. I felt ridiculous and ashamed, I who had pushed suramin all summer as practically a miracle cure.
But if I was gullible, there were others who knew exactly what they were doing. Though UCLA quickly moved to dismantle its suramin study as soon as it became clear the drug was too toxic, several other suramin programs were still going full force, with hundreds of patients clamoring to get in. Within a few weeks this moral blurring to protect the experimental data began to seem criminal to me. There was one doctor who kept his patients on suramin through the winter, even when we knew how lethal the side effects were, and even as the patients died off one by one.
It is mostly myself that I can't remember that week, perhaps because my panic wasn't manifesting as anger or depression. It was all fear, pure as oxygen off a line. Al and Bernice were there, of course, and they tried very hard to defer to me. Roger and I would talk through the day's numbers every night with Cope, who would calm us down merely by talking about it all as an ongoing process. Now and then Al and Bernice would join us for that session, and once Bernice went into a state of suppressed rage—exploded later in the corridor—when I talked with Cope in front of Roger about the chances that some horror or another might develop. Bernice came from the school that didn't talk about the dire stuff in front of a sick person. In retrospect I agree—Roger didn't need more gloom and doom—but at the time I felt we had to go through the fire together, that all we had to squeak us through was the fact that we were one. I remember Cope taking me aside one night and saying carefully, "This is the most unstable I've ever seen Roger." Then he asked if Roger and I had ever talked about life support systems and a living will. Still I would not hear the knell of death in all this. I think I thought I could disbelieve it away.
In any case, I was a better combatant that week than I was an observer. Fifteen hours a day I'd either be on those interns and nurses like a rash or be plugged into my sources all over the country, wired for sound. Perhaps Roger is the better witness here. Most of what I know of the blackness came out of a long talk we had, late one night the following summer, when things were quiet. Those were the nights when I used to read Plato aloud, and Roger could barely see.
"Oh, Paul," he said, "I had to fight so hard to keep from going under."
He remembers his father joking and his mother giving him foot massages. They'd stay with him all day long, from breakfast till dinnertime, and I would come over in the afternoon and begin my dogged work as an intern without portfolio. Then at seven his parents would leave, and I'd stay till after midnight. Roger remembers us all trying to talk normally—talking mostly over his head, but including him too, as if we were four around a table. How he would cling to that ordinariness, he said, as he held on minute by minute.
It is such a curious business, how not to be alone. In one way Roger was very far from us for days, tucked half in a ball as he dealt with the waves of nausea, the difficult breathing, the general air of being under water. He couldn't even separate the hepatitis symptoms from the adrenal failure, let alone the underlying viral symptoms: they hit him like an earthquake, a typhoon, an eclipse, all at the same time. He counted how long he could hold out by how clearly he was following the conversation from the real world—Al and Bernice and I gabbing inanely about everyone we knew—versus the hospital world of trays and vital signs.
The countdown to AZT was five days, four days, and I would tell him what new shred of evidence I'd heard about the drug. We kept talking to Rog and getting little answers, a weary yes or no, or just a nod on the pillow. We were all so close and so alert, like a troop of sentries. I've never before experienced the feeling of having to physically keep Death away, as if he would actually come in the door if I let down my guard for an instant.
And sometimes you win. Jaimee remembers Roger's birthday as a happy occasion, friends dropping by with presents and Richard Ide in from Washington. Jaimee herself had sent a huge box of food to fatten Roger up, and I unpacked it all over the bed as Roger laughed with her on the phone to Chicago. Of course she couldn't see how bad he looked from his ordeal. Richard recalls being shocked at how thin and battered he was. But mostly I remember—so did Roger—his father telling people for days after, chuckling with a kind of delirious relief, "I really thought we lost him there for a while."
Everything didn't get better right away. He wouldn't be home till mid-December, and he had another infection still to battle. Arsenals of medication had to be consumed. But by then we were all strong, and we weren't going to lose. For on Tuesday the twenty-sixth, two days before Thanksgiving, the elixir arrived. Roger was
put on an IV dose of AZT every four hours, the first person west of the Mississippi. We were very grand from that day on, I dare say, or I was anyway. I felt as if we had won the Nobel Prize for our work in immunology. The whole AIDS underground cocked its ear to the tenth floor at UCLA, as a hundred skeptical doctors wandered in and out to get the scoop on the latest magic bullet. Just call us Command Central.
The one note in my journal is for Thanksgiving night, three-thirty in the morning, a lush Somerset Maugham rain beating against the windows: "R Day 3 on Compound S. I massage him and he says wonderful things about me." This was blackmail, actually. I was not half so patient as Roger's mother about giving massages—she'd knead his feet for a half hour. I'd get tired after five minutes, bored more than anything, since the massage would always put him to sleep. But then he'd stir and complain, "Don't stop." That night I said, "I'll keep doing it if you tell me how much you love me." So I got him to purr endearments at me—"I love you so much, you're my best friend"—while I worked his muscles. If he was quiet too long I'd tap him and say, "More." Notice that no one looks over his shoulder to see who might sneak in. Everyone's getting exactly what he wants. And I marked the holiday thus, a pilgrim's prayer in a new world, repeated over and over: Thank-you for Compound S.
O bountiful land.
By December 1, Roger's third week in the hospital, his weight had dropped to 130. It was the most emaciated he ever got: only ten or fifteen pounds below his normal weight, yet his face was so thin you could see the skull beneath. He was exhausted and shell-shocked from the punishment of the previous month, but on the other hand, the hepatitis symptoms were subsiding. He could eat again, and the tenth floor is terrific if you want a lot of food. You can à la carte the high-caloric stuff till it fills the tray, and they'll whip up a milk shake on five minutes' notice. Roger's father chimed in with me as we coaxed Roger to snack between meals. On top of which we had him on three cans of nutritional supplement daily. Every night I'd wheel in the upright scale for the weigh-in, and steadily the pounds crept back.