Borrowed Time: An AIDS Memoir

by Paul Monette

  And the day would sweep us on because there was so much still to persevere in. Right after the Martin call was the IV dose, and all through that hour the two of us talked shorthand. Or we would hardly talk at all and just be together, unchallenged by any outside view, psychiatric or otherwise. If it wasn't exactly twenty-four-hour care we were giving him now, it was at least a twenty-four-hour situation. Yet I didn't mind the constant part, for the seamlessness of the day—doses and meals, the night walk, the weigh-in—became its own kind of walled city, magically protected.

  Thursday was my birthday, and I reluctantly agreed to celebrate it for everybody else's sake. Alfred took me out for lunch, then we headed to Culver City for a meeting. By the time I got home it was four-thirty, late for the afternoon dose. Joe and Vince, two dear friends who had just celebrated their fiftieth anniversary, were visiting at the time, and Roger seemed all right. The next hours were back-to-back with phone calls from our two families, the rote greetings, gifts to thank them for. Richard Ide came over for cake in the evening, and as he had the previous Christmas, he brought on Roger's orders several presents. Though feverish and wilted, Rog was clearly very pleased that we'd pulled together a bit of a party.

  And yet Richard says he knew that night that Roger was fading quickly. Winding down, as someone put it to me the other day about a friend who's entering the final spiral chamber. I can see it immediately in others now, but I couldn't in Rog. Richard says he finally noticed the scope of my denial. I remember that Jaimee called, and Roger begged off talking to her because he was visiting with Richard. In fact he was trying to tell Richard a story about his niece Lisa, and kept having to call to me in the next room to untangle the details. Richard knew then. I just untangled the details and went on talking to Jaimee.

  Cope called after that, and we decided in the absence of any specific symptoms to sit tight till we saw the results of the next day's blood tests. I told Jaimee and Cope the same thing, that I planned to spend all my time with him over the weekend and graph everything that happened, making sure he was properly hydrated. We all had credence still in the urgency of liquids, since dehydration involved its own disorientation. When I hugged Roger in bed that night I said, "You're my birthday present, okay? You're all I need." And he laughed and murmured, "My best best friend."

  Somehow we got over to UCLA on Friday for blood tests and an eye appointment. I insisted on a wheelchair because of all the walking, and I remember we had to see one of Kreiger's colleagues, since the doctor was out of town. The substitute was a man who treated us brusquely, as if this case were too hopeless for his time. Nothing new to report: Though the infection was still stable, Roger couldn't see the chart at all and was too feverish to care. We made an appointment for Tuesday, when Kreiger would be back and we could schedule laser surgery for the cataract.

  For the rest of the day and the evening I spent all the time with Rog, monitoring him and constantly asking how he was. Fine, he'd say. I wonder now if our very closeness kept me from seeing a pattern of dislocation and withdrawal. After all, it was so easy to leave things half said, having finished each other's sentences for years. The care system we had evolved was so entrenched in teamwork, every milk shake. I think that at the back of my mind I couldn't conceive of him in mortal danger because his weight was stable and he was eating well. Friday night, I remember, we talked about the discovery, just announced by National Geographic, of Columbus's landfall in the Caribbean. But I wonder now if I didn't carry the burden of the conversation for both of us, just as I must have done all week with the Plato.

  Friday night I was seized with the old guilt. "I feel so terrible, Rog," I said as we got him ready for bed, "that I made such a mess over Joel." He seemed surprised that it still troubled me, and he reached for my hand. "Paul, we got through all that. It's not important anymore."

  When I went to bed at three my panic had subsided, for we'd held to a neutral day and would have the whole weekend to rehydrate him and bring him back to strength. Weekend mornings he'd stay in bed later because Scott didn't come, and the nurse would let herself in and be out by nine. I went in when I heard her leave and asked him if he wanted to come and cuddle with me in bed for a while. I led him to the front bedroom, half asleep myself and telling him everything was going to be fine. We dozed for a half hour or so, till he abruptly sat up, and I woke and asked if he needed the urinal. I think he said yes, because I went and fetched it from the other bedroom. He stood up and held the bottle in his hand, poising his dick at the lip of it. But nothing came out.

  "What's wrong?" I asked. "Go ahead." He seemed to be concentrating fiercely but also to be puzzled, and then suddenly he did the strangest thing. He cocked his head, bewildered and curiously intent, like a deer not quite sure if he's just heard danger. Then quickly he whipped the urinal bottle around behind him and started to defecate into it. "What are you doing?" I asked him frantically, shaken by the dislocation and irritated at being awakened. I took the bottle and tried to lead him down the hall to the bathroom, and he stumbled and fell to the floor, staring up at me, staring blind. "Get up!" I cried, trying to drag him to his feet. He looked stunned and oddly shell-shocked, and troubled at how upset I was.

  I was gnashing my teeth with fear, but after a moment I forced myself to be calm and began to talk gently. I helped him to his feet, cleaned him up and got him comfortable in bed. By now he was saying he was all right, he just wanted to sleep. So did I. All I wanted to do was sleep, and that's what I did for an hour. In that moment when I should have had us in the car on the way to the hospital, I couldn't cope anymore.

  I think I was in shell shock myself from then on, but you don't somehow notice the gaping hole in your own head. We had breakfast, and Roger seemed weary but otherwise himself. I'd placed a call to Dennis Cope as soon as I got up, but as it happened he had his own crisis that morning—broke his foot and had to come into the emergency room to have it put in a cast. The doctor who was on call for him didn't get back to us till midafternoon, and by then Roger and I had had a walk up Harold Way, and he took a call from Tony Smith in Boston. I greedily drank in the reassurance of hearing him laugh and talk with Tony. When the on-call doctor finally checked in, he listened to what I had to say but didn't feel I should rush Roger over to the hospital. As long as he seemed all right now, Cope would be in touch with us tomorrow, and surely Monday was soon enough for an examination.

  Then he read off the numbers from the previous day's blood tests, and the white blood count was 800. But that couldn't be. It had bottomed out just under 2,000 and was on its way up. Roger hadn't started back on AZT yet, so how could it have come down? The doctor had no answer; Roger wasn't his patient, and they tend to dump such disparities on the "weekend problem," when the labs are notoriously inaccurate and presumably staffed by chimpanzees.

  After the four o'clock dose Roger wanted to nap and told me to go to the gym. When I got back an hour later I found him feeling his way in the dining room in the dark, drenched with sweat, as if he didn't know where he was going. We changed his clothes and had dinner. The incontinence wasn't consistent at all, for he used the urinal bottle or the toilet the rest of Saturday. I was scared about the white blood count, however, and automatically put on a blue mask to protect him.

  Then the evening ended with a bold stroke of reassurance. After all those sweats I'd given him cursory sponge baths, but now I asked if he wanted to wash his hair. "Oh, what a good idea," he said happily, and we traipsed into the bathroom. I swathed him in towels to protect the catheter, and he knelt and bent over the tub while I shampooed him. There was something unimaginably secure in the ordinary rhythm. He was so refreshed afterwards, laughing as I bundled him dry, more animated than he'd been in days. When I had him back in bed in clean pajamas, we talked about the queer incident of the morning, shitting in the bottle. I apologized for yelling at him, and he said he hadn't been sure what to say in the wake of my panicked reaction. It's hard to explain how we normalized and explained it all away
, but the serenity and closeness of the night made all the earlier turmoil seem like a bad dream.

  At 10 P.M. Alfred dropped over for an hour. More than ever, I hated leaving Roger, with the two of us connecting so effortlessly. But Alfred and I had a script deadline, and I'd promised him a couple of hours over the weekend. "Go ahead," said Roger, "I'll be fine." Later, during the midnight dose, everything was peaceful as I gave him pills and made him drink lemonade. Then I watched over him till four, working on Predator while I sat by his bed.

  Sunday was bad from beginning to end, but all in a minor key. There was nothing so obviously off kilter as the incident with the urinal bottle, and I never had the experience of hearing him speak in non sequiturs. Most of the day was no more harrowing than being confined to the house, though he was fevered and sleepy and didn't talk much, mostly answering yes and no. But we went through the rigors of being up and about, as if I could keep things stable by fanatic adherence to our hard-won schedules. Trying to hold back the flood, making the beds as the missiles arrive. When Cope called midafternoon, we discussed the situation from various angles. Still he thought it would be all right to wait for the regular Monday noon appointment, especially since Roger wasn't running a very high fever that wouldn't break, like the one that sent us to the emergency room in June. I said I thought I was keeping Roger stable, and I don't remember what we said about the white count.

  We sat out on the terrace, going through mail. The flier had arrived from Florida Orange Growers, from which Roger would always order a bushel of grapefruit for my parents for Christmas. I remember us talking about that and me filling out the order, "Love, Roger." Rand Schrader dropped by to visit, since I'd told him the previous night that Rog wasn't up to the regular Sunday breakfast. Rand knew right away that things had taken an ominous turn. Roger was barely there, he says, confused and no longer able to have a real conversation. "It was like we were talking about him in front of him, instead of him engaging with us."

  But when you are backed in a corner, you look for any sign of light at all. He was able to come to the table for supper, however wilted. I know we had chicken, because I remember it was my proof of how functional he was, that he could eat it. I also remember the leftovers in the fridge after he died, mocking me with all my rituals of feeding. I spoon-fed him a bowl of applesauce for dessert. Then we had a last walk up Harold Way, where he leaned on my arm but still managed a hundred yards uphill, with the misty view out over the city lights that only I could see.

  When he wet the bed later I changed the sheets, maddened now, as if I thought he was doing it deliberately. As I put down plastic under the sheets he asked what I was doing, then shrugged and looked sheepish. Jaimee called, and I told her it had been a difficult day. I was worried about the white blood count and what would happen tomorrow... but Jaimee, he's all right. I don't think it's anything dangerous."

  And Roger perked up beside me in bed and shook his head: "No, of course it isn't." So it wasn't—not yet. However horrible what would come in the next two days would be, he was feeling peaceful enough just then, taken care of and going along, no pain or fear. That turned out to be all we could give him, but we brought him that far. I gave him the night IV and stayed up again until four, watching him sleep peacefully, waking him every hour or so to give him water and change his sweat-soaked shirt. Perhaps because I have always worked by midnight oil, I never believe that anything truly bad can happen on the night watch.

  Scott strode into my room at nine and woke me. "You have to get Roger to the hospital," he said. I was blurred with sleep and tried to explain we had an appointment at noon. "He's rigid," Scott said. "His temp's 103, and he can't talk to me." So I ran in, pounding with adrenaline now, and talked softly to Rog, coaxing him to respond. He seemed to relax and murmured "All right" when I said we were off to the hospital. Scott was furious because the morning nurse had obviously ignored the problem, leaving Roger to lie in fouled pajamas. I remember that as Scott brought him downstairs to the car, Roger was walking on his own but seemed wooden and stiff.

  Then as we drove over to UCLA, me patting and reassuring him, the fever began to break, and he started to sweat. At a light in Beverly Hills I took his temp with a throwaway thermometer. It was down to 100. He seemed more focused, and we began to talk. As we arrived in the emergency room parking lot I told him I'd go get a wheelchair, and he said, "That's not necessary." But I got one anyway, put a mask on him, and wheeled him in to the registration desk. The nurse droned through a list of questions, asking what was wrong, and I said, "He's had a high fever, and he's a little incoherent."

  "I am not," piped up Rog with a certain stubborn pride. I smiled at his tenacity. It was the last full sentence I ever heard him speak.

  We waited in an examining room for Cope. Roger's temp continued to hover toward normal, and I gave him an Ensure to sip through a straw, certain that whatever crisis had erupted this morning had passed. But then, when Cope came in, in a wheelchair of his own, Roger couldn't answer most of his questions. When's your birthday, Roger? "November twenty-second," he replied, and my heart leaped with triumph. But then he was silent when Cope asked, "Who. am I, Roger?" I could see Rog straining to answer, trying to focus, and when the next question came, the intercom in the hall announced some neutral business, paging a doctor, perhaps. Roger, struggling to speak, began to parrot what the intercom said.

  Out in the hall, Cope told me they would run the usual battery of tests—bone marrow, spinal tap, x-ray. He suspected it was either cryptococcal meningitis or the AIDS virus in the brain, and the one was treatable and the other not. I said I would stay with Roger till the tests began, then I would go back to the house and pack him a bag and meet him on the tenth floor when they admitted him in the late afternoon. I stayed by him through the x-ray procedure, talking and holding his hand in the glaring hallways. When they brought him back to the ER for the spinal tap, I told him I'd be back in a few hours. He said "Okay," or perhaps just murmured yes; I don't think he could talk whole words by then. But I didn't realize, and I still don't know why I left.

  I went home and stared at his bed, where the sheets still swirled with the shape of his sleep. Then I stripped and jumped in the pool, though it was freezing cold in late October. I made calls to various sources in the underground to check out the central nervous system, pulling together anecdotes about meningitis. I took a nightmare nap, packed an automatic bag and got up there about five, when they were just putting him to bed in room 1010.

  He was clearly miserably sick when I walked in, but I'm sure he could still answer me yes and no, because I had no sense of his speech center having been affected. I got him to drink another Ensure and ordered him dinner. Then two interns came in and stood by the side of the bed and announced he had cryptococcal meningitis. They would begin treatment right away with amphotericin B. Rog didn't answer them—didn't move—and I dismissed them and told him how lucky we were it was treatable. As if I had no other choice but driving forward into the teeth of the gale. I remember feeding him soup, and him looking up at my face with a kind of stillness in his own, yet full of an indescribable yearning. I don't know how dim his sight was then, or how locked the muscles of his face, but I felt him looking at me with a heartbreaking immediacy. He dutifully ate all the soup, then quietly vomited it up.

  Cope came in in his wheelchair and went over the diagnosis again. Now Roger's eyes were wide with terror, and he could barely respond with a murmur. Cope promised him we'd bring him through it and was at once forceful and infinitely kind, after his fashion. Then he spoke to me quietly at the foot of the bed, saying, "Paul, I think this is worth fighting because the quality of life he has at home is worth it. But it wouldn't be the worst thing if this were the one that took him."

  I stared at him, unable to hear it, and made him declare again that the medication would restore him. Then, as we waited for the pharmacy to send it up, I made phone calls to the families, especially to Al and Bernice, informing them that Dr. Cope th
ought they should fly out. I didn't know they'd asked him to alert them months before if the end was near. Though Sheldon tried to put them off till later in the week, they called me back to say they'd be on a plane in the morning.

  Amphotericin B is administered with Benadryl in order to avoid convulsions, the most serious possible side effect. It was about nine or ten when they started the drug in his veins, and I sat by the bed as nurses streamed in and out. A half hour into the slow drip, the nurse monitoring the IV walked out, saying she'd be right back, and a couple of minutes later Roger began to shake. I gripped him by the shoulders as he was jolted by what felt like waves of electric shock, staring at me horror-struck. Though Cope would tell me later, trying to ease the torture of my memory, that "mentation" is all blurred during convulsions, I saw that Roger knew the horror.

  I kept waiting for the nurse to come back. Why didn't I press the call button? Did I think the horror was supposed to happen, another thing to endure? We had stood in the fire so long that burning was second nature now. I sat there frozen, holding him for endless minutes, trying not to cry as I told him I was with him. Here I am, Rog—but with all the cheer and exultation drained away. When the nurse returned she looked at him in dismay: "How long has this been going on?" Then she ordered an emergency shot of morphine to counteract the horror. When at last he fell into a deep sleep they all told me to go home, saying they would try another dose of the ampho in a few hours. I was so ragged I could barely walk. So I left him there with no way of knowing how near it was, or maybe not brave enough to know.

  I went home and called Jim Corty, Sam and Craig, who all reassured me the ampho would kick in. They were full of cases that had shaken the stranglehold on the nervous system, and the convulsions were to be expected. He'd come back; they swore it. I sat at the desk unable to sleep, working numbly on Predator for an hour or so. I called UCLA at two and again at three. They said they were having trouble keeping his fever under control, but otherwise he was stable. You force yourself not to think about the pain, where it hurt this time and how bad. I cursed myself for not having a private nurse with him and ordered one for the morning. But that was all: I went to bed certain he'd be responding to the drug within a few hours. I would not see the dying.