by Paul Monette
I don’t know in any case how much was a manifestation of dementia caused by viral invasion of the brain, since there wasn’t anything dramatic about it. He was fully coherent, if spending a fair amount of the day sleeping, but this was also the time when he was getting the greatest pleasure listening to various tapes friends had brought him. Sometime during those last weeks he listened to Julius Caesar straight through. He hadn’t read the play since tenth grade and was thrilled by its eloquent tightening web, talking it over enthusiastically with Richard Ide, our resident Shakespearean. He chortled through The Importance of Being Earnest, which Marjorie brought him, and was spellbound by a tape the photographer Holly Wright had made of the “Overture” to Swann’s Way in French. It was impossible for me to focus on the diminishing of his mind, with him talking about literature with such evident delight and lucidity.
And yet I was manic and busy and didn’t pay close attention. Saturday the eleventh I went out and took care of a groaning board of errands. I happened to pass a new postmodern minimall with a restaurant opening called Beau Thai. I could hardly wait to get home to tell Rog, who loved the idiot puns of California signage. But when I related it to him as I served him lunch, he made me repeat it and didn’t get much of a laugh over it. Win some lose some, I thought. Then when Richard dropped by an hour later, Roger asked me to tell him the Beau Thai pun. And when I did, Roger commented, “Can you believe I didn’t get that?” It was the one moment when he seemed to have a conscious sense of something not being quite right, but none of us really picked up on it or knew what to do with it. How do you factor in the missing of a single pun? That night we finished the Crito and launched into the Phaedo, Plato’s dialogue about the spiritual life and the immortality of the soul.
Sunday afternoon the twelfth, Susan and Robbert brought over a birthday cake for me, since they would be swamped at school on Thursday, my actual forty-first. I recall we sat out on the front terrace in clear October light, and Robbert and Susan asked Roger a list of questions about a loft space they were thinking of buying. They’d never owned property before and wanted advice about how to talk to a banker. Roger was utterly in his element as he laid out a set of options for them, promising to make contact with our banker in West Hollywood. He was logical and patient, tuned to them alone, totally absorbed.
That night he said to me while we were puttering in his room, “You know, you’re the most beautiful man.” I grinned: “You mean physically?” He nodded with mock gravity: “Oh, yes, I always thought so.” I’ve never seen anyone do that, spending all his endearments and giving voice to the best he knew in people. Over and over I’d hear from friends who talked to him in the last weeks—how they would call to try to stumble something out, and Roger would turn it around and want to help them with their problems. Each time he lobbed one of his encomiums to me I was so stirred and touched I didn’t stop to think it was any sort of final testament. On the contrary, at such moments he could hardly have been more alive.
In the early years he was never as impulsive as I about saying he loved me, whereas I would spend those coins like a profligate, having waited all my life to speak such things out loud. Once in the summer of ’80 I was in New Orleans researching a script, and he tried to tell me on the phone one night how empty he felt without me. I wasn’t very patient, apparently, replying, “I’m probably not the one to talk to about it, Rog, because I just miss you.” When I read his ’80 journal after he died, I found a note to me at the bottom of that day’s entry:
Paul—the important thing to say is this: with you it’s been the best—the best years and the most love.
The plain certainty of his words in the last two weeks was like that, their affirmation whole, with the directness of a heart burned clean of extraneous feeling.
He was suffering consistently now from fevers and drenching sweats, and I would have to change his pajama top at midnight and at two, sometimes again at three-thirty, before I went to bed. He had also been off AZT for over a week, but his white count hadn’t bottomed out very low and was inching up again. He’d be back on it within a few days. I think there was another announcement from Scott about his wetting the bed one morning, but I definitely remember Tuesday at noon, as I was getting ready to go to Alfred’s. Scott was serving him soup and a salami sandwich in the dining room. For months he had favored deli for lunch, which I applauded for being high caloric and proof of a hearty appetite. But now he vomited when he sat down at the table, and then as he moved blindly to go through the kitchen into the bathroom, he had a squall of diarrhea in his pants. I was rattled, and Scott said he’d take care of it, so I left for my meeting. As soon as I got home I put in a call to Cope, who would usually get back to us within half a day. He didn’t this time, though Roger seemed all right and had no complaints outside of the fevers and sweats. And they were a constant that didn’t tell us much anymore.
Yet I know I was frightened and bouncing off the walls that night, because at one point, as I ran around preparing the night dose of IV, I started crying and hyperventilating with anxiety. What is it? he wanted to know. “I’m so afraid,” I told him. “I want you to be okay. I don’t know what to do.” And he spoke an ocean of reassurance, curled on his side in bed: “Don’t worry, darling, I’m still here.” Twice more in the difficult days that followed he’d hear me blubbering over one misery or another, and he echoed again, “I’m still here.” Letting me tuck in beside him and unleash a flood of grief.
Wednesday we had our hour in the garden in the morning, and when he sat down for lunch he was sweating buckets. I came in to say I’d be back from Alfred’s at three, and he tilted his head as if he wanted propping up, with a small moan of weariness. I hugged him and told him everything was fine. Later that afternoon Dr. Martin called to find out if he should come by for the Wednesday appointment. Rog was in bed and shook his head no, he wasn’t up to it. He hadn’t been up to it the previous Wednesday either, as I remember, but he chatted with Martin for a few minutes. Then Martin asked to speak to me. He said, “I just asked Roger if he was sleeping a lot, and he answered, ‘Yes, I’m sleeping for everybody.’” Martin let the statement make its own conclusion, that Roger was drifting off mentally. But I had the prior experience with Martin about the “brain involvement” and wouldn’t give it the weight he did. Scott and I were feeling that Roger’s symptoms were just like the dehydration episode in June.
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 f
rom 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.”
