With some coaxing, I established that his problems included:
Tuberculosis—He had taken treatment for six months and stopped for the last two weeks because “those pills were hurting me, I could tell.”
Three episodes of Pneumocystis carinii pneumonia, including one that had resulted in his being on a ventilator. His lungs were so fragile that thrice his lungs had popped, allowing air to leak into the chest cavity and requiring the placement of a tube in the chest to reexpand the lung. The Bactrim tablets, which he was instructed to take daily to prevent a further episode of pneumonia, he had stopped taking because “I didn’t think I needed them.”
Severe esophageal candidiasis made it almost impossible for him to eat. The pills—ketoconazole—that he should have been taking he had run out of.
Severe malnutrition—A physician had put in a Hickman catheter which still dangled from under his collarbone. The entry site under the filthy dressing had a drop of pus welling out. Luther had not been getting any hyperalimentation feeding through the catheter for some months now, having fought with the doctor who put it in. He had not even bothered with the heparin solution he was supposed to flush the catheter with to keep it from clotting off.
When I examined him I found his weight to be ninety pounds, with his shoes on. He had a temperature of 103 degrees Fahrenheit. The appearance of his mouth was enough to turn my stomach. The sight in his left eye was diminished, and I saw a white splotch in his retina that was suspicious for cytomegalovirus, a major cause of blindness in AIDS.
His lungs sounded gurgly on both sides, and both his liver and spleen were grossly enlarged, giving a protuberance to his belly reminiscent of children with kwashiorkor. I wondered why the sheer tonnage of these organs did not offset his plummeting weight.
His legs looked like kindling under his hips. The skin of his legs was covered with scratch marks, several of which had festered into sores. As I examined him he continually drew his long nails against his skin, producing a raspy sound that made my hair stand on end.
“Luther, I’d like to put you in the hospital.”
“What for? I’m not going to no hospital.”
“What for? You need intravenous medication to clear up your mouth. I’m worried that there is an infection in your eye that may cause you to lose your eyesight. You look dehydrated. We need to get the catheter out . . .”
Luther disagreed. The thing he wanted from me was a prescription of Lomotil for the diarrhea. His self-image was so distorted that it was almost as though he did not see himself.
I asked him whether he was staying with his parents.
“Why should I? I don’t need them.”
We found out later through a social worker that his mother didn’t want any part of him. And his dad had not even told his new wife about Luther; he didn’t want Luther to come by.
“So where are you staying?”
“In an apartment off West Market.”
“And who gets your groceries and cooks for you?”
He acted as if I had gone too far. He came rearing off the exam table. He shouted at me now, his face coming forward as if he would bite, his saliva spraying on me as he screamed: “I do. Okay? I do. I DON’T NEED ANYBODY’S HELP.”
I told him about TAP and how they might be able to help him. But he dismissed this. He stalked out of the clinic with his prescription of Lomotil. Other patients stared after him.
Carol and I, looking through a side window, watched him walk down the road. He appeared to have no car. We kept wondering what kept him upright.
“Poor thing,” Carol said.
For a fleeting second I thought Carol was referring to me, to how my day had gone, to the kind of patients I saw week in and week out, to the ambivalence that had crept into what I was doing, whether it was buying a house or treating this fatal illness.
THAT SAME WEEK Otis Jackson had a recurrence of the shingles and an acceleration of his psoriasis. He complained constantly of pain. He was frequently angry and bitter.
Fred demonstrated saintly patience well beyond what his sister, Bettie Lee, or anyone else was capable of when they took turns with Otis. Fred’s father asked him at one point, “What keeps you there?” Fred answered, “If mama was sick and in the hospital, wouldn’t you be at the bedside most of the time?”
Still, Fred and Otis’s relationship was strained. The breakthrough, which Fred described to me, came near the end. “Till then I had no acknowledgment for my support of him, my sticking with him through thick and thin. At the time we met, we were both infected; I could have gone my own way. But the other night, he was really suffering, and he said to me that he was scared. I found out that one of the things that was really worrying him was the business of being ‘saved.’ His mother and father were fundamentalists and it was very important for him to be saved. And yet he didn’t feel quite up to the spectacle of a baptism in his hometown; he was ashamed to mention it to me, but it was eating him up. Once I found out what he was worried about, I was able to convince him that it was enough for him to want to be saved, to feel repentance for his sins. I told him that was all he needed to do—baptism was simply a sight-and-sound ceremony added on. At that point, he seemed relieved and he let go of that fear and we never talked about it again. He thanked me for all I was doing and told me he loved me.”
Over the phone Fred described to me how Otis was now bedridden, his eyelids open, but despite that, quite unresponsive. His eyes would make roving movements, examining the ceiling as if waiting for the Angel Gabriel to descend. He would make picking movements at the bedclothes. He would mutter under his breath. What Fred was describing was the classic “typhoid state,” a dramatic state seen in the terminal phases of many illnesses but particularly in typhoid fever and other febrile illnesses. “Coma vigil” or “muttering delirium” was the name given to the strange state of consciousness. The picking at the bedclothes had its own name—carphology.
Under our direction, Fred was giving Otis morphine round the clock. Every day Fred would check in with us. Death, when it came, was peaceful, a striking contrast to Norman Sanger’s death.
Fred told me later, “When he died I held him in my arms and I sang to him long after he stopped breathing because I had read that the brain goes on for a few minutes.
“He had wanted to be buried in his hometown, sixty miles away. After all was said and done, he still had a strong attachment to that place. By the time I drove up there, the funeral home had dressed him in a V-neck sweater with a T-shirt underneath. His hair was combed the wrong way and his hands were hidden under the sheet. We had exchanged rings before and now his ring was hidden under the cover, as if they did not want to show it.”
Despite this, Fred felt very accepted by Otis’s immediate family. It was an old-fashioned funeral, with all of them standing by the casket and greeting visitors. Fred’s friends came, as did everyone from support group. But what surprised him the most was that his parents came too.
“What the preacher said was something of a blur to me. But he did at one point say something about ‘bringing things on ourselves. The Lord is merciful but we have to live with the consequences of our sins.’ And I almost lost it then. I wanted to go up and strangle him.
“I gave a eulogy but it was the hardest thing I’d ever done. Not just what I had to say, but where I was saying it. Nonetheless, I wanted to make my presence known. I didn’t want to cause the family further trauma, but I wanted to carefully express my love for Otis, our relationship, our long battle against this disease. I remember the last thing I said in my eulogy was, ‘Goodbye, little cowboy. We love you, we’ll miss you.’ Because Otis always liked cowboy stuff: boots, hats, spurs and chaps.
“At the end of the funeral, a very, very, old lady—a distant aunt of his by marriage whom he cared for very much—came slowly up to me and said, ‘You all really liked each other, didn’t you?’ I answered, ‘We sure did, we sure did.’ This lady lived in a house without electricity, with a hand pump and
as much poverty as you can imagine and here she was now saying to me, ‘You know he really liked you. He really cared a lot about you. I don’t know what anyone would have done without you. Thank you.’ Here was this lady who was too simple, too plain to have all the prejudices the preacher had, for example. And when she said, ‘I don’t know what anyone would have done without you, Fred,’ I just lost it, bawled like a baby, with her comforting me.”
27
ONCE HE FOUND OUT HIS father had AIDS, Will Johnson, Jr., made a trip down to Johnson City to see me. I suggested that instead of meeting in my clinic, we meet for lunch. I felt guilty about the role I had played in keeping Junior and his sister in the dark on what was happening with their parents, for having invoked “lymphoma” and “a kind of leukemia” to explain his father’s hospitalizations. What could I say to defend myself? We were making up rules as we went along. I was improvising constantly to deal with the moral, ethical and social subtleties that were so much a part of this disease. There were so many new questions I had no training in handling. I was relieved that everything was now out in the open and I wanted to make amends for my role in the deception.
As I had predicted, Will Johnson’s children and their spouses had rallied round their parents and had not for a moment considered any response other than that of complete support.
I met Junior at a Mexican restaurant in Johnson City. He was exactly my age. It had been a long time since I first saw him in his father’s hospital room. I had forgotten how his blue eyes, just like his father’s, developed a myriad of crinkles around them when he smiled. He was less animated than his father, had more of his mother’s quiet nature. He spoke in a careful, measured southern drawl. He listened very carefully and only spoke when he was certain that you had said your piece. Will Junior’s hand would hover over the salsa bowl, a nacho between his fingers, waiting to complete the sentence he had started, or waiting for me to finish what I was saying, before he dipped in.
I studied him. I was going through a phase of intense doubt as to my role as a doctor in the town, my goals in life; I imagined this was reflected on my face, in my posture. I envied Will Junior his good looks and his quiet self-assurance. This was a man who would fit in anywhere. To hear that he had attended VMI like his father, that he had been part of an old institution with great tradition, added to my feeling of inadequacy. I had never lived in one place long enough to belong to anything with that sort of history. Maybe that was why I so treasured the old buildings on the Mountain Home grounds.
Shortly after Will Junior found out that his father had AIDS, he went back to VMI for Founders’ Day at his father’s request. “I drove there as if I had never been there,” he told me. “I used a visitor’s eyes. I requested a tour by a cadet at the visitors’ center. This young, scrubbed cadet took me around, told me about the Rat Line, about the Rat Bible, about the battle of New Market, took me to the barracks, to the chapel, to the classrooms, to the library, told me all about the honor code-—I didn’t let on to him that I knew it all. I was angry. Angry about my parents’ illness and the unfairness of it. Angry at the conviction with which this cadet was telling me things. I wanted to grab him by his shoulders and shake him and say to him, ‘I’ve been here. It’s all bullshit. There’s a world out there that has nothing to do with square corners or Rat Bibles.’ I wanted to scream at him, ‘Do you know there is an AIDS virus out there that eats people up, and no spit or polish is going to keep it away?’ I wanted to tell this kid, ‘Use VMI as a model, but don’t think this is the world, because it is not.’ ”
I understood Will Junior’s sentiments exactly. I was angry too, angry at all the untouched lives that went on without knowing or caring, all the people that could ignore my patients’ suffering.
Unlike his father, who had told me he had little time to waste on the past, Will Junior was seething with anger about Duke’s failure to warn his father about the risks of blood transfusion so that he might have spared his mother this vile disease. I pointed out to him that it was a problem of the times, a failure of the national blood banking system, a failure of leadership, the FDA, Reagan. . . . He listened but said nothing; it was a difficult pill to swallow, being failed by his heroes.
His father’s initial improvement with AZT had been short-lived, and soon the fever and night sweats had started again and he began to lose weight. It appeared that Duke had very little more to offer him.
“He called me from Duke the last time he was there. He said, I’m having these tests done on my lungs. They tell me it’s either bad or real bad.’ He laughed on the phone at his joke. Then he said, ‘Son, I taught you how to live. Now, I’m going to teach you how to die. I’m going to show you how to execute an operations order on how to take care of final business.’ He laughed again when he said that. It was a VMI phrase and I knew he was deadly serious.
“We went out to Corpus Christi—perhaps his last time at the beach house. I had not really understood till then what he meant by operations order, how much he perceived this as a battle. He would say to me again and again how much he hated Satan. It was Satan who gave him the disease in an effort to make him curse God. My sister would say to him that he should not say hate, as if the devil would take extra satisfaction in causing him pain or causing my mother pain for saying that. But it wouldn’t stop him. He hated the devil.”
I told Will Junior about his father’s epiphany in the hospital room. How he felt Satan had appeared and Jesus had intervened.
“Oh, that has happened more than once. I heard him scream in the kitchen about a month ago. Apparently he had seen Satan, he said he could smell him there, and he had yelled at him to get away from him. It was so real that I kept looking for this other presence in the room, imagining I could feel it. We were walking on the beach one day in Corpus Christi; it was a nice sunny day and I was enjoying the feeling of sun on my skin. And he was leaning on me and walking—trudge, trudge, trudge. Then he stops and says that the sun on him felt like the fires of Hell. ‘Christ is in my heart, but the virus—Satan—is in my blood. My ultimate victory will be when I die and go into the hands of Christ while this virus from hell will be sent down to the crematory and burned out of existence.’ ”
Will Junior said his father’s walking had gradually deteriorated. It was now painfully slow. He could not pick up his feet, and it was trudge, trudge, trudge everywhere. He had a ritual of putting on clothes and going to the porch. Gradually he no longer changed out of his pajamas and he stayed in the living room.
They rented a hospital bed for him. The bed was placed in what had been Will Junior’s room when he was young.
Will Senior became a very demanding patient.
“When you’d walk in there, Dad would say, ‘Will, can you help me sit up.’ ‘Sure, Dad,’ I’d say and get him situated just so. Then, ‘Can you lower the window?’ ‘Sure, Dad.’ Then when you were done with that it would be, ‘Son, I believe your old man is ready to lie down now,’ and then ‘Son, I know your old man is driving you crazy but would you turn off the TV?’ Then, ‘Turn on the TV,’ and then, ‘Open that window, would you son?’ It would just drive you bananas.”
They hired a woman to come help. “She was this big, warm, compassionate country lady. She had been instructed about AIDS and the precautions to take. She took them in her stride. Of all of us, she was perhaps the best at handling Dad because she would just josh with him and take charge and baby him and get him situated, and for some reason he would give her less grief than he would us. He really liked her. He would kid her about her boyfriends and she would tell him how she was trying to ‘rope’ one in but how they were all skittish. My Dad would roar with laughter. But then last week—and you’re not going to believe this—her son-in-law forbade her to come to our house.”
Here Will Junior took a long sip of his beer and looked at me as if debating whether to say this to me. “Her daughter married this foreign physician. He got wind of what’s wrong with Dad.”
“How d
id he get wind of it? I thought it was top secret.”
“To tell you the truth I think most people in town know what’s wrong with Dad. Dad and Mom don’t want to think so, but I think there’s a lot that know. . . . Anyway, the foreign physician, he married this local girl—the daughter of the nurse’s aide who looked after Dad. The daughter and her husband live in this big old house with a Porsche and a Jaguar parked outside. And the doctor, when he gets wind of where his mother-in-law is working, he tells her that he doesn’t want her working with us and then being around his kids!” He stopped here, as if he was holding back.
“How does that make you feel, Will?”
He took his time answering. He asked the waitress for another beer for him and one for me. I didn’t think I would be going back to work that afternoon.
“How does it make me feel?. . . I think: How can this guy come bleed off us hillbillies, live in a mansion, and then of all people he has that kind of attitude to AIDS?”
There was nothing I could say. It hurt me to hear this.
Will went on, “Mind you, when I broke my arm, my Dad took me to the ER and the guy who set my bone was Indian, just the nicest guy in the world. I was very pleased. But I know there is an underlying sentiment in the community about these doctors: they are so obviously foreign, so clearly not from the area. And they are so obviously well-off compared to the miners and such like. You can’t help these thoughts. Have I upset you?”
“No. You see, I wrestle with this in my head all the time. I wonder if the patient is thinking to himself, ‘Well, if this doctor is so damn good, why doesn’t he stay in his own country and treat his people? God knows, they need him there.’ The truth is that countries like India need money more than doctors, Will. There’s enough doctors, particularly in India. But what good does it do to stick a doctor in a rural clinic when all he can stock there is sulfa and scabies ointment? So the doctors congregate in the cities and cater to the rich. Or they try to leave and come here. . . .”