“I heard Larry ask him what he wanted to do, and Norman said something like, ‘Larry, I just want to have fun. I want to have fun.’ And Larry said, ‘Are you talking about now, Norman? You want to do something right now?’ And he said, ‘No, I’m too tired now. But let’s go to Gatlinburg, just the four of us and rent a chalet sometime. We’ll get one with the whirlpool because I know Sharon loves a whirlpool.’ And my husband’s just sitting there saying, ‘Okay, Norman. Okay.’
“We have this big backyard, about five acres. I used to tell Norman about this special spot at the edge of the property where I go to just meditate. It is my little spot and you can’t see any other houses from back there, just mountains. You can hear the birds singing and nothing else. Silence. I told him that one day I would take him back there, we’d spread a blanket and talk. Now Norman said, ‘I need to go back to your spot and sit there with you. I need to cry and I need to pray.’ I needed Larry’s help because he was so weak. Larry got on one side and I on the other. We walked him past my flower bed and I had these red gladiolas—for some reason that summer nothing came up but the bright red ones. He said, ‘Those are the prettiest flowers I’ve ever seen.’ Later at his memorial service I brought red gladiolas to the church. I said, ‘Norman, this is where I go when I worry about you and I pray for you. This is where I sit and cry about you.’ And he looked around and said, ‘You are all around this place and you always will be.’ He said, ‘Keep praying for me and I will always come back here.’ We sat there for about fifteen minutes, but then it was uncomfortable for him to sit on the ground because he was all bones by then.”
As Sharon talked about her special spot, I recalled all the singular places I had come to associate with this disease: Vickie’s trailer and the land around it, the Powell Valley cemetery where Gordon was buried, Essie’s house at the foot of the mountain. I remembered the visceral, healing effect the mountains surrounding Powell Valley had on me. If time permitted I would stop at Gordon’s final resting place on my return drive.
“We went back to the house and laid down by the pool and he was looking up at the sky and he said, ‘You know, right now I don’t hurt anywhere. I don’t think I have a fever. I’m not nauseous. Everything is just right. I have the people that I love most in the world right here.’ It seemed like he suddenly got a burst of energy from being in that spot. Suddenly he said: ‘So, Sharon, what is it that you would most like to do? Make a wish.’ It was like he had started a game or something. I said I always liked the idea of flying in a small plane but never had the courage. He said, ‘Well, I know a friend and he has a plane and we’ll arrange that.’ Then he goes: ‘Okay, Larry, your turn: what do you want to do?’ Larry said, ‘I want to go fishing. I want to take you with me and teach you how to fish.’ Norman laughs and says, ‘Okay. But I already know how to fish—I’ll outfish you, but I’ll go fishing with you anyway.’ Then he asked his wife, ‘Honey, what do you want to do?’ And she says, ‘I don’t care. Whatever you all want to do.’ And he paused there, as if she had thrown him off. He said something like, ‘All right, okay, we’ll do something.’
“He went on with his fantasy about what we’re all going to do and the three of us were just sitting there looking at him, trying to figure out what we should say. He grew real quiet, like it had suddenly struck him that there was no point to these plans.
“Then he suddenly pipes up, ‘Didn’t you say you fixed some peach cobbler?’ Claire and I and Larry were tripping over ourselves to go get him the ice cream.
“When it got dark, Norman wanted to see the fireworks. We all put our jackets on and drove up in our two cars to the crest of the hill. The fireworks were spectacular. Then we said goodbye. He said that he’d had a wonderful evening and he was going to see me at work tomorrow, which I very much doubted. After he died, Claire told me that just as soon as our car was out of sight, he had her stop the car and he threw up all his dinner. He had not wanted to do that in front of us.
“The next day he called to say he had made reservations at a chalet for the four of us. I couldn’t believe he’d done that. I was enough of a nurse to know that he would never make it there. But he went on saying, ‘Make sure Larry can get off work,’ and I said, ‘Okay, I’ll take care of it.’ He said, ‘Do you know what the name of the chalet is?’ I said, ‘No.’ He said, ‘It’s called Heaven’s Gates.’ He said that he wanted to come out the next day and visit my little private spot again, that it had given him a lot of peace.
“That evening about six o’clock, Claire called me and said that Norman was very ill and would I meet them at the emergency room. We jumped in the car. The route took us right past Norman’s house, and the rescue squad ambulance was still parked out there. So we stopped and I went flying through the door. I knew all the rescue squad people and I asked them, ‘What’s going on?’ They said Norman was in the bathroom with Donny, one of the rescue squad people. Norman had wanted to use the bathroom before leaving. And I thought to myself, ‘Well it can’t be too bad.’ But then I went and looked down the hall and the whole bedroom and the entire hallway was covered with blood, soaked with blood. Apparently something had broken loose in his lungs and was hemorrhaging. He was coughing it up, spurting it up all over the place. I asked Claire, ‘Has he had his factor VIII?’ She said, ‘No, I brought it in to him and he wouldn’t take it.’ I stuck my head in the bathroom and just then Norman was walking out on Donny’s arm. He let them lower him down onto the stretcher.
“I got in the back of the ambulance with him. I was holding this trash can next to Norman and blood was pouring out of his mouth and nose into the trash can. Every time he coughed, blood was flying everywhere. He was coughing like crazy. In the ambulance he sat bolt upright and we put oxygen on him but he was still so pale and so blue. His hands were really cold and I remember thinking that everything I was doing was medically wrong. Here he was in shock and I was sitting him straight up. I should have taken his blood pressure, but I couldn’t even think to do it. All I kept doing was washing his face, wiping his face with a towel and saying, ‘Norman, it’s all right, it’s all right.” He didn’t have his shirt on, just his pajama bottoms, and he was so uncomfortable and restless, but still he was conscious, though I don’t know how alert he was. My mind kept going back and forth: How do I help him die comfortably? How do I save him?
“He was very, very short of breath, and every now and then his head would loll back and his eyes roll back as though he was going to pass out. Then he’d suddenly snap his head up again and try to look around him. He’d see me and then he’d let his eyes roll again. And I kept saying to him, ‘Norman, go easy. It’s okay. God’s with you. It’s okay.’
“All the time I was thinking, Why did he call the ambulance? He told me never to let him die in the hospital. He had quit taking his medicines. Why did he call an ambulance? Was it fear?
“I said to him, ‘I’ll start your IV and get your factor VIII and we’ll stop this bleeding.’ But by then he looked like he was about to lose consciousness. He had no pulse and his breathing was very shallow and rapid.
“We were backing into the emergency room entrance now. And when they took him out of the ambulance, he raised his head up again. I remember the ambulance drivers as they moved the stretcher were bouncing his head and I was trying to follow behind, holding his head, keep it from bouncing. I screamed at them, ‘Careful, for God’s sake!’
“Claire was in the ER and I grabbed her by the shoulders and I said, ‘Claire, you’ve got to tell them not to do anything.’ But she was paralyzed and didn’t seem to be hearing me, and finally when the doctor stepped out and said,. ‘Who’s the wife?’ she said, ‘I am.’ The doctor was someone I didn’t know, someone from ETSU moonlighting up here. He said, ‘How vigorous do you want us to be?’ and she said, ‘Do everything.’ And I just rolled my eyes and said, ‘Oh God, Claire.’
“Well, they worked on him for a couple of minutes and it was breaking my heart. Here he was, he had seen a lifetime o
f hospitals, had his fill of doctors and treatments. If he had any life or a conscious mind left in him, all he would remember of the way he left this world was being shocked and having a tube run down his throat into his lungs and being stuck with IVs and people jumping on his chest, cracking ribs and setting up more bleeding in there. Thank God, in just a few moments the doctor came out and said that it was all over, and I took Claire home.
“A lady from church and I spent a couple of hours just cleaning up the bathroom and bedroom so that Claire could go in there. I set up some pillows to sleep on a sofa in the bedroom. But Claire couldn’t sleep and neither could I. In the middle of the night she turns to me and says, ‘Are you asleep?’ I said, ‘No. I can’t quit crying,’ and she said, ‘I’m the same way.’ So we just both laid down on the couch and propped ourselves up and we started talking. And I had this Hershey bar in my handbag that Norman had given me—he was a chocolate nut. And I brought it out and we started eating it. And when we were done it turned out that Claire knew where Norman had a Hershey stash. She brought it out and we sat there eating chocolate like little schoolgirls. We thought Norman would have approved.
“Claire and I were just sitting on the sofa remembering all these things about Norman and I turned to her and said, ‘You know where Norman is right now, Claire? He’s at Heaven’s Gates.”
ON MY DRIVE HOME I kept thinking of Norman’s last hours. It wasn’t at all what I had wished for him: the blood flying everywhere, the chaos and confusion of the rescue squad and emergency room, the paroxysms of coughing. Why did Norman go to the hospital? I imagined a vessel bursting in my own lung, the blood welling up the bronchus, into the trachea, spilling into the good lung, rising up to the larynx and threatening to drown me. All Norman’s courage and dignity—his two assets—could not counter the sheer horror of that moment. He had undergone the jolting ambulance ride, the Code Blue in the emergency room, because he was scared.
I realized that I could have done much for him if I had been in his house. I would have pushed morphine—large doses. Morphine disconnects the head from the body, makes the isthmus of a neck vanish and diminishes the awareness of suffering. It is like a magic trick: the head on the pillow, at peace, while the chest toils away.
I would have sat with Norman and said to him, just as Sharon had said, “It’s OK, it’s OK. Go easy. God’s with you.” When I saw the faintest twinge of anxiety in his eyes or around the corners of his mouth, I would push more morphine.
That night, I pulled out Osler’s classic textbook of 1892. The kind of medicine I needed to practice, the therapeutic advice I wanted, was surely to be found here in Osler’s text. Osler knew what I was going through: few opportunities to reverse the underlying situation, but no lack of means to bring the patient comfort, at the very least the comfort of the physician’s presence. I read: “By far the most important measure is absolute quiet of body such as can only be secured by rest in bed and seclusion . . . for cough which is always present and disturbing, opium should be freely given, and is of all medicines most serviceable in hemoptysis.”
Norman’s death increased my resolve to be a presence at the bedside when I could. And I would carry morphine with me always, have it ready at each bedside, at a moment’s notice, ready to disconnect the head from the body’s anguish.
26
THE NIGHT BEFORE Luther Hines reappeared in town, I had a dream in which once again I contracted HIV. The dream recurred so often—always in a different form—I thought of it as the “infection” dream. This time I was with my brothers, we were dressed in suits and ties, three Brooks-Brothers boys sliding along the marble walkways of a fancy mall. A lady in a lab coat—not a doctor, but a cosmetic-counter person—beckoned us into a room to have our blood drawn. I was being cavalier, teasing my brothers about how shy they were with needles. I groped the woman and my brothers watched with embarrassment. We walked around some more and soon the mall was dark and empty, and we struggled to find our way back to the lady in white. “You both,” she said to my brothers, are fine. “But you,” she said, pointing at me, “it’s really strange, it definitely looks like it is—”
“Nooooo!” I screamed. I wept and said it was a mistake, but she shook her head, a little amused by my histrionics, as if one should be able to take this sort of news in one’s stride—particularly as a medical man. My brothers tried to console me. I pleaded with Reji, my older brother, to please turn it back, to please let me do this part of my life over again. He was heartbroken: I was asking him for something that was not in his power.
I woke in a cold sweat. Each time I had this dream, I immediately recalled the last time I had broken the news of a positive test to a young man. I remembered my concern, my empathy, my encouraging and supportive tone, as if to say, “Don’t worry, I know what you are going through, and it will be all right.” But a dream like this made me feel like I had no idea what I was saying. In my waking hours I never understood the absolute terror of finding out. you have HIV; in my dreams I understood all too well.
I shaved and dressed without much thought or enthusiasm; like an automaton I picked up my beeper and my wallet and my pen and my keys and distributed them on my person.
Halfway through the morning, I had ducked away with Rajani to go and see a house with a realtor. We had been looking for three months, my enthusiasm for this project waxing and waning. Rajani was keen on a new house. As quaint as our Mountain Home house was it lacked certain things: a bathroom on the ground floor, a dishwasher, the sense that we owned it and could alter it to suit us. At times it seemed like the most wonderful thing in the world for me to contemplate: my own plot in suburbia, my own lawn, amenities such as a jacuzzi, a garage with electric door openers, intercoms, central air and heat, central vacuum, a pool, none of which were to be found at the VA. And at other times, the two-car garages packed with lawn mowers and bicycles and shovel and pickaxe and skis, the tricycles sitting in the driveway, the flag flying proudly, the fleshy thighs and pastel-colored shorts of would-be neighbors bending over their flower beds, trowels in hand—it all seemed like a terrible trap. It was the opposite of my infection dream: I could see the danger, I was awake and I had plenty of time to back off, to not fall into a binding mortgage that would cut off my escape.
The realtor had picked up on my ambivalence some time ago. She eyed me warily, tried to box me out when she could. But Rajani had found a fatal flaw in this house that eliminated it from consideration. I breathed a sigh of relief.
By afternoon, when Carol greeted me, I felt my smile was rigid and false, my energy low, my mood black. And now here was another chart waiting, another young man. Carol’s chirpiness only seemed to make it worse.
The chart said that I had seen Luther Hines two years before. As I read through my notes, I remembered a young man of slight build with sandy-brown hair, a pointed face.
Two years before, when he discovered he was HIV-positive, he moved back home from California. His family reacted to the news of his infection with indifference; they reacted to his physical presence with some discomfort, as if to say, why would you come back home with a thing like that? He took a job in Johnson City, but didn’t care for it. When I first met him he had said this hick town—his home town—was too much for him; he was planning to leave. He thanked me for having seen him, but assured me that he would get the latest and best treatment back in California. He had left me feeling that the medicine we practiced here was from the Stone Ages.
I knocked and pushed open the door, curious why Luther had come back again.
I was shocked at what I saw: Luther sat in the corner, a small shriveled figure, leaning against the wall, looking like an abandoned cur, staring back at me sullenly, as if I had trapped him in this room, as if he was fully expecting me to kick him and he was readying his best snarl.
His lips were horribly crusted and fissured. There were angry sores at the corners of his mouth. From where I stood I could see the Candida growing in his mouth like cheesy curd th
at threatened to spill out. His face was covered with a swath of fluid-filled vesicles, each with a central little dimple on the top. This was molluscum contagiosum, a viral infection of the skin. Some of the lesions were as big as marbles; one of them hung down from the point of his chin and made him look like an old shrew. His shoulders resembled wire coat hangers that propped up his shirt. His nails were long and pale and seemed to hang down like a parrot’s beak, as if the skeleton of the nail had softened. I could have superimposed his knobby skeleton, his sunken eyeballs, the taut starvation smile and the cheeks sticking to the teeth onto a Life magazine picture of a famine victim from Biafra or Ethiopia. His skin had turned dry and flaky. He was altogether a hideous sight.
I said something like, “Luther, what happened to you?”
He snapped back, “What do you mean what happened to me? I’ve moved back, that’s all.”
“But how do you feel? You look . . .”
“Nothing happened to me. I’m fine. I just need a refill on some medications.”
Luther had brought no medical records with him. When I asked him if he would sign a release and let us get records from the doctors that had seen him, he balked. He came up with a litany of people who had seen him in California: each one was “an asshole” and “didn’t know what the hell he was doing.”
This caustic manner of his was new, part of what the disease had done to him. He had shown few signs of it before. He was looking at me like I was yet another asshole who didn’t know what I was doing. And yet, here he was in my office, having come of his own free will.
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