Borrowed Time: An AIDS Memoir (30 page)

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.

Gradually we all released ourselves from the white-knuckle grip of the previous month. Bernice sat in the chair by the window day after day, knitting a pearl-white sweater for Rog, a sweater she later admitted to me she didn't care if he ever wore or liked; she was knitting to keep him alive. Meanwhile Al joked and flirted with the nurses, as easygoing as he must have been with a hundred different regulars at the H & H. He possessed a wonderful breeziness of spirit that was infectious, plus a gut respect for how hard people worked. And he didn't miss anybody. After a couple of weeks I realized he and Bernice had a chatting acquaintance with Lily, the black woman who swabbed the bathrooms, and Clarence, who did the heavy maintenance work in the corridors.

I was on nodding acquaintance with both, but Al would ask Lily every day about her grandchildren. Always a cheery hello and a bit of sly banter, no matter who came in to take Roger's temperature or deliver his tray. Roger and I were fairly skilled at endearing ourselves to the tenth-floor staff, but Al was a pro. Somehow he and Bernice helped rid the place of its awful strangeness. In the late afternoon they'd take their striding cardiovascular walks up and down the corridor, twenty lengths a mile, waving and greeting a multitude as they went.

When Roger had been on AZT a week, we were already buzzing to one another that it was working, as we watched him emerge from under water. The fear and labor went out of his breathing, and he talked merrily and tossed off puns. Even the looming IV equipment ceased to be so terrible, now that it was doing magic-bullet work. And despite the warnings of the doctor in charge of AZT that no one must know, since the drug wasn't licensed yet, I bragged to the nurses and anyone else who'd listen. One afternoon an IV nurse came in when Roger was dozing and demanded of me in a kind of spy whisper: "How did he get this drug?"

Her brother was an intern at Duke in North Carolina, and for several weeks he'd been telling her about the dramatic results, though he'd cautioned her that she probably wouldn't be seeing the drug at UCLA for at least half a year. Now she wanted to know everything about how we'd managed to spring it—a kindred spirit, clearly—so we took her through all the intricacies while she tapped the vein in Roger's arm. She pressed her beeper to tell them not to disturb her, she was in conference. This was the same woman who told a gathering of her colleagues that if they didn't like AIDS they'd better get out of medicine. She eventually came to work full time in the fourth-floor Immunology clinic. One of those remarkable people we'd meet occasionally along the way, who was passionately committed to facing the calamity, who wouldn't rest until she was part of the solution.

Jaimee flew in from Chicago for the weekend. We'd been reporting to her excitedly for days how much better Roger looked and felt, but of course she was stunned and upset by his gauntness. Yet the three days she was in town were wonderfully carefree. The two of them laughed their heads off, tracing the circuitous routes of their childhood: the trip to the Grand Canyon, where Jaimee was too young to ride a mule to the valley floor and fumed at the unfairness of it all; the visit to Disneyland in its opening summer, where they got to meet Walt himself on Main Street. "Like meeting Louis XIV at Versailles," as Rog used to say.

Late at night I'd take Jaimee back to the guesthouse at UCLA, where we'd sit over tea and unwind and strategize. Roger puffed with pride to see how seamlessly Jaimee and I got along. It gave him the greatest satisfaction, as if he'd struck a deeper chord in his family—for Jaimee was known as a guarded sort, highly selective about her loyalties. She remembers Roger getting out of bed to go across to the tenth-floor lounge, and fretting before he left the room, "Wait—is my hair brushed?" She couldn't believe it, the shy twinge of vanity about his bald spot, no matter that he looked half-starved. You prove you are still alive in the smallest gestures. Jaimee says she hadn't a clue how she looked herself that day. Like the rest of us, she threw oil clothes in the morning and ran unkempt to Roger's room.

He could feel he was getting stronger again. At last it began to excite him as much as it did us, as if the future had opened again. "You're the miracle man," as Charlene the nurse would tell him one night the following summer after surgery. The passing of the crisis, the giving back of time—people with AIDS will tell you about that tidal shift, how it happens over and over. Now Roger would need all the positive feelings he could muster, because right after Jaimee left, the doctors didn't like what the arterial blood numbers were showing. They ordered another bronchoscopy, a test we had come to dread as a no-win situation. Once again Al and Bernice and I had to wait out the procedure in the lounge, and this time no one pretended to read.

They must have given Rog a jot too much local anesthetic, because he didn't come out of it as smoothly as before. For the next three hours he couldn't talk at all, just a whispered croak, and I had to put my ear very close to his lips to figure out what he was trying to say. At one point he was pleading for something, and I strained to listen and had him repeat, till I finally made it out: "My... balls."

They were jammed up under him because his hospital gown had got twisted beneath him while they were maneuvering him for the test. With the oxygen mask on and the IV in his arm, he couldn't move to release the pressure. His parents and I laughed with relief as I loosened the gown and gently pulled his balls free. Then about a half hour later he croaked painfully, word by slow word, "Why is this happening to me?" He meant the frozen larynx that made him unable to talk, but Bernice burst into tears at the larger resonance of the question. "I don't know, Rog," I said. "I don't know why anything anymore."

Yes, they told us briskly later that night, he did have PCP again and would have to go through yet another course of Pentamidine. I know we all had a terrible sinking spell at the news, and I recall Roger gloomily announcing to people on the phone over the next few days: "I have three different diseases now." I was a wreck as I called around the country to find out just how bad a third bout of PCP could be, and Craig comforted me with the information that two people he knew had survived five rounds of it. As Peter Wolfe later explained, the PCP protozoa probably never went away entirely, and it wasn't yet understood what made it flare into full infection. The major advance they've made since then has to do with the prophylactic dose to keep the protozoa dormant. Many now receive a weekly dose of Pentamidine spray, inhaled directly into the lungs, which lowers the rate of repetition. But that wasn't available during our time in the war.

Since Roger would need to be in the hospital for another week, he asserted himself to get a change of venue, at least. One morning we moved him from 1020 to 1006, from a blue room to a peach room. I can still see that vinyl wallpaper in my sleep sometimes—the pulsating diamond pattern with a scroll border at the ceiling, blue or peach or beige. As a result of some benign bequest or other, Impressionist posters hung in each of the rooms. The Degas ballerinas that pirouetted all through the near-death experience had grown unbearably oppressive to Roger. In 1006 we settled for a placid Utrillo street scene.

By now, in spite of the constant stream of medications and the piggyback IV equipment, Roger was free for hours and getting antsy, so we'd go for strolls in the corridor. The other end of the floor, 10 West, was a world-class center for bone marrow transplants, whose patients all had complicated immunity problems and spent long periods in the hospital. We soon had nodding acquaintance with all of them and the masks they wore and their falling hair. In the evening we'd go down to the lounge, and I remember playing a game of checkers one night, a game neither of us had played in so long that we had to think hard to remember the rule of kings. Halfway through the game, though we were playing desultorily and nobody was winning, Roger pushed away from the table and said, "I don't want to play this anymore. It's too upsetting." I knew exactly what he meant. We were so drained and shaken still that even the automatic strategies of checkers were too demanding. We sat back talking till an old woman with a cane came in, accompanied by a doctor, and he quietly broke the news to her that her husband had Lou Gehrig's disease. We couldn't scramble out of there fast enough not to hear her shock and pain. The last thing she said as we fled was: "Doctor, we mustn't tell him."