My Own Country

  I was flattered, pleased that my being there had been helpful.

  I asked Sue how she felt about my consulting her. I said, “I feel guilty for asking you—or anyone, for that matter—to subject themselves to the risk of surgery. But I want you to know that I am not singling you out. I am using the other surgeons as well.”

  “I know you are, Abe, and I appreciate it. To tell you the truth, I am very, very frightened every time I have to operate on these patients.”

  I must have looked skeptical. Sue had certainly not seemed frightened in the operating theater. In fact, she had made it seem routine. To the point where the resident, forgetting himself, had wanted to do more and more and eventually he had done it all.

  “I don’t dwell on it,” she continued. “I just do it. But now that you’re asking me, it makes me very, very frightened.”

  I understood, of course. In my heart I was still frightened of contagion. I thought of the possibility at times when I played with the boys or touched Rajani.

  “Is Cameron the first HIV patient you have operated on?” I asked.

  “Cameron is probably the biggest or longest operation I’ve done on an HIV patient. But you know I trained in Camden, New Jersey. And between 1982 and 1983, we did a bunch of biopsies of lymph nodes that came back ‘reactive adenopathy.’ I’m sure they were all HIV cases. Not to mention all the trauma we took care of.”

  “Did you know that at the time? That those lymph nodes might be HIV- related?”

  “I don’t think we knew for sure—I don’t think I was fully aware of AIDS till 1984 or so. We were very careful, but still . . . like I said, I don’t like to dwell on it.”

  She turned back to her dictation and I left.

  By the next morning, Cameron’s acute pain had subsided, though he was still sore from the operative wound. Even though the gallbladder had looked normal to the naked eye, the pathologist reported that it was inflamed and infiltrated with white blood cells. Cameron did have acalculous cholecystitis.

  21

  NORMAN SANGER, my only patient with hemophilia and AIDS, could remember many nights in his childhood when he lay awake in pain. A knee or an elbow would start to swell from bleeding within the joint capsule. “I didn’t want to wake my parents up, I wanted them to get a good night’s sleep—so many, many nights they had sat on the edge of my bed with me, holding ice packs to my knee or thigh, measuring the circumference of my leg every hour, holding me when I cried in pain, watching the clock to see if they could dose me again with a painkiller. I hated to wake them, I hated the dutiful way they would get up out of bed, put on the lights and come to me, not complaining, not grudging the sleep lost. And then in the morning, with no sleep at all, they would still go to work and—if I was in the hospital by then—come and sit up with me one more night. So rather than wake them, I would grit my teeth and wait for morning. I’d play this one hymn over and over again on my toy record player: it was ‘Joy Comes in the Morning.’ I can’t hear that hymn anymore without my teeth gritting and without feeling pain in my limbs. ‘Joy Comes in the Morning.’ ”

  Norman Sanger was diagnosed with hemophilia shortly after his birth. By nine years of age, the arthritis from the repeated bleeds into his joints gave Norman a stiff, robotlike gait. Those were the days before factor VIII concentrate. Treatment of hemophilia consisted of admitting the child to the hospital for every major bleed and infusing large volumes of fresh plasma until the child had enough factor VIII circulating for the bleeding to finally stop. By the age of nine, Norman had visited the hospital more times than most children had visited an ice cream parlor. By then he was also aware that if his parents made do with the same old car for years, if they dressed modestly and took no vacations, if they worked weekends in addition to their regular work, if they had elected to have only one child, it was because they were committing every penny that came in to keeping their only son alive.

  I suppose every doctor at some point sees himself or herself reflected in the patient seated opposite, every doctor begins to ask what blind luck has resulted in being the listener and not the reciter of the horrid tale being told, what would it be like to be the patient? It was easy for me to identify with Norman; he was my age, he was male and he was heterosexual. What linked us now was that he had AIDS and I treated AIDS.

  I would anticipate his visits, look forward to drawing him out. In learning about him it seemed I was learning about myself.

  “I felt I was a heavy burden on my parents,” Norman told me. “My father was a coach for a high school and also taught math; my mother worked in a school cafeteria. I always felt as if my bleeds happened at the worst possible times. And my parents were always good-natured about it—as if they had fully expected to have a hemophiliac son and saw no tragedy in it. They would stop what they were doing and bring me to the hospital.

  “When the team my father coached was playing, or even if it was a softball meet at church, I used to have a chair to sit on and watch. I could see how much fun my father was having with the other kids, and it made me wonder if he didn’t want that from me. . . .”

  If my own childhood was a rich imagined one, full of imagined victories and disasters, when I listened to Norman I felt as if he never had a childhood. As a small tot he had already developed such adult feelings, experienced the kind of medical adversity most of us will never see in a lifetime. Norman showed me his high school yearbook one time: In a group photo where the other kids were in jeans and T-shirts, Norman was in a blazer and slacks with a bow tie. He was smaller than everyone else in his class, but he appeared older, more worldly. A photograph of him alone appeared later; he was editor of the school paper, and from his pose, again with the bow tie, it appeared he took this so very seriously.

  His great passion was the Dodgers. As a child, unable to compete in contact sports, he had instead mastered the statistics of baseball. He could rattle off batting averages and winning percentages in a manner that dazzled his classmates, whose talents were confined to hitting or catching the ball. “One of the joys of growing out of childhood was the realization that most of my friends from high school were now mere spectators when it came to sports, just like I had been for all that time. And I had years of spectating experience over them. I felt like things had evened up!”

  In his early teens he witnessed the miracle of the commercial production of factor VIII in a concentrate. The painful, large-volume and time-consuming infusions of plasma that had to be administered in the hospital were now replaced by a single infusion of factor VIII that could be given at home. Hemophiliacs like Norman were suddenly empowered: they could often tell when a bleed was beginning and could abort it with a quick infusion at home.

  Norman, who had been raised in California, finished high school and chose a tiny community college in Kentucky. He was offered a full scholarship. He wound up staying in the area, living in a town of 9,000. He now held an excellent job as personnel manager for a large coal mine not far from the college he graduated from. I often wondered what would make a California boy, a well-educated one, stay in that small community. Perhaps with his learning, he found an acceptance, a respect and status that would have been lacking in L.A. or San Francisco. The townsfolk were simple, unquestioning, and very willing to enfold him into the tiny community, give him a place on the town council, welcome him into their church. Another reason Norman stayed in Kentucky was the excellent hemophilia care the state offered: every few months, a team of hematologists, dentists, physical therapists, orthopedic surgeons and social workers would hold a hemophilia camp close to his town. All the hemophiliacs in the surrounding counties would be seen, their needs for factor VIII assessed, their dental needs taken care of by dentists experienced with free-bleeders. Those who might be candidates for joint reconstruction or replacement were assessed and given appointments in Louisville or Lexington.

  Just when it looked like Norman was getting the upper hand, looking to live an almost normal life, there came the news that facto
r VIII—the miracle potion that had liberated him—might have also poisoned him with the agent of AIDS. The mission of the hemophilia camps suddenly changed: they now seemed to revolve around AIDS rather than hemophilia. The leading cause of death in hemophiliacs was not bleeding but AIDS. The children and adults that Norman had come to know from all his visits to camp now showed the ravages of AIDS on top of their stigmata of hemophilia. With each camp, a few old friends, a few familiar faces were missing, and a few more had developed the wasting, the sallow complexion, the brittle hair. In the time period of 1982 to 1985, before the HIV test was developed, Norman became more and more aware that he might be infected. He carried on with his work and decided not to worry about something that was beyond his control. Besides, around that time, a romance was brewing in his life, a romance that in its ardor seemed quite capable of eclipsing AIDS and hemophilia.

  Claire lived in an apartment just down the street from the mine. From his office window, Norman used to see her set out for her job in the Piggly Wiggly every day, leading her little son across the street to her neighbors who looked after him till she got back. He noticed everything about them: the way she said goodbye to her son, the way the little boy pouted, the way she drew away from her boy so reluctantly, the way he rushed back to her arms at the end of the day. Norman was filled with the sense that the little boy and the woman needed him in order to be complete, that they were a step away from the poorhouse, from debtors’ prison. He felt as if he had been waiting in this hollow for them to come along.

  A mutual friend introduced them and Norman courted Claire carefully and properly. If Norman was well read, well traveled and an intellectual, Claire was a simple girl who had known only hard times. She had survived the death of a husband and was on the brink of poverty. She was blonde, shy, quiet and pretty. Her frail, petite frame—even smaller than his—made him feel like he could be her protector. Her son adored Norman. Norman proposed and bought a diamond ring for her. She accepted.

  Norman had been postponing getting the HIV test. But after Claire accepted his ring, he knew he could not postpone it any longer. He took the test and in a week learned that he was infected with HIV.

  I pressed Norman about the moment he found out he was infected. Did he cry? What did he say? What was he thinking? What did he do later? Where did he go? Norman never answered my questions, sidestepping them each time. All the years of his battle with hemophilia had left him no time for self-pity and despair. He appeared to have brought this same attitude to his HIV infection: it was a disability to be worked around, to be negotiated and overcome. If death was a possibility, it had always been a possibility. He did not dwell on death before and would not dwell on it now.

  He told Claire at once, as soon as he knew he was infected. Their relationship had not yet been consummated. He explained to her the risks and what the future held, offered her the chance to back out of it, to come and see me and talk about transmission of the virus, about safe sex, even though, at this point, he himself had not come to see me. Claire saw no reason to see me, no reason to rescind her decision to marry him. He told me later that he had promised her “ten good years,” which were more good years than Claire had had in her life up to that point.

  Later, when I heard this, and when I came to know her, I wondered whether in her innocence, her simplicity, she had perhaps pictured ten years in which Norman would be in perfect health and then at the end of the tenth year suddenly drop dead? Was she informed enough about AIDS, or about hemophilia, to be prepared for disability, for prolonged sickness?

  Norman had been married for two years and was known to have been HIV-positive for the same duration when he finally came to my office. He had sought no special medical attention for the HIV. His family doctor in Kentucky, a Parsi from Bombay, would call me from time to time to discuss Norman’s case. The doctor had tried to get Norman to come and see me, but Norman’s rationale was that since there was no treatment, he saw no point to the long drive down. Just as with his hemophilia, he had read and learned enough about the disease to know what could be done.

  Issues of confidentiality and prejudice at the mines or in his social circle did not concern Norman greatly; he was too wrapped up in taking care of Claire and the little boy he had adopted. Others in the personnel office were aware of what Norman had; his good friend Sharon Phillips, the primary care nurse for the mine offices, was also in the know. If anyone else knew or suspected, Norman didn’t really care.

  He came to my office when he heard that AZT was now being made available outside of study protocols. His doctor insisted that AZT was out of his league and that Norman would have to come to me.

  I remember the first time Norman walked into my office. He was a small man, about five foot three inches, and he held himself very upright. His face was serene and he seemed quite oblivious to his limping gait. In his lifetime he had seen so many doctors and been hospitalized so many times that the clinic held no awe for him. When he extended his hand to shake mine, he did so by bringing his trunk forward until his hand reached mine: his shoulder and elbow had a very limited range of motion. His handshake was firm.

  When I examined him with his clothes off, I was surprised by the extent of the damage done by the hemophilia. The repeated bleeds into his joints had affected his growth and left him with a body disproportionately smaller than his head. Several of his joints were frozen or else had limited movement.

  He had no complaints related to any of these findings, even though they were undoubtedly a source of chronic pain. He did complain of weight loss and fatigue; he was 15 pounds down from his normal 135 pounds. His temperature in our clinic was slightly elevated, and he said that low-grade fever had been going on for weeks. He told me his hair was falling out. I rubbed his hair between my fingers: it was dull and lusterless and felt brittle. When I tugged, a few hairs readily came away. When I made him lie flat on his back so I could feel his belly, his knees sat up off the bed a good six inches: he had flexion contractures in both hips.

  After he was dressed, we talked about AZT. Norman was reluctant to begin. I obtained a CD4 count which came back at 180 cells/mm3—the normal should have been about 1,000. The following week his doctor called me to say Norman had developed severe esophageal candidiasis. We admitted him and treated him. At that point Norman agreed to start on AZT.

  I never saw a more dramatic response to AZT than I did with Norman. His hair stopped falling out and grew back thicker. His skin, which had begun to look waxy, regained a healthy pink color. He put on weight and I even kidded him about a trace of a paunch. He told me his energy level had quadrupled and he wished he had been on the drug before. It was a satisfying moment for both of us.

  I often tried to compare Norman Sanger with other hemophiliacs I had taken care of. Many had a reckless quality to their lives, as if to compensate for all the admonitions they had heard to “be careful.” One teen had insisted on riding dirt bikes, crashing often and once developing life-threatening bleeding in the splenic bed. Another hemophiliac I met in Boston had wanted to be a Green Beret but had been turned down. Instead, he took to wearing combat boots and fatigues and worked as a bouncer in a nightclub. One night he called complaining of high fever, but he refused to come in to be seen. His girlfriend said his fever was 105 degrees Fahrenheit. “Look, Doc,” he said over the phone, “just call me in some extra-strength Tylenol, some Phenergan and I’ll be all right. And by the way, call me in 1400 units of factor VIII—I’ve got a little bleed in my elbow.” I called him the next day to see how he was; his girlfriend told me he had gone on a hunting trip.

  Norman Sanger had none of this recklessness. But just like the other hemophiliacs I knew, he rarely ceded control to anyone. He started AZT only when he was ready to. If I recommended admission to the hospital, Norman decided whether to accept it or not. The recklessness I saw in the nightclub bouncer manifested in Norman in another way: Norman had no fear of death; death was something that I and all my other patients seemed to drea
d. It was the very thing that made AIDS so frightful, the essence of AIDS: the fact that it was a uniformly fatal disease. But this seemed to hold no fear for Norman.

  Late on a Sunday evening in the spring of 1988, I admitted Norman Sanger to the Miracle Center with the diagnosis of probable Pneumocystis pneumonia. It had been a glorious day for a ride up to Roan Mountain, for a picnic, and even for tennis before the light failed. To have to come back to the house, summoned by my beeper, and to then put Norman in the hospital had been a reminder that the day had not been glorious for everyone

  Monday morning I called Norman to tell him that my partner, Felix, would cover the Miracle Center that week while I worked the VA. I would not be by to see him that day.

  Norman, who said he was feeling a little better, accepted this; he knew and liked Felix. Still, something in the tone of his voice stayed with me: he had not sounded himself. Later that afternoon, when I ran into Felix, he told me that Norman seemed discouraged, something neither of us had seen in him before. On an impulse, when I was done for the day, I decided to pay a social visit to Norman.

  I stood outside Norman’s room now. I could not hear the TV and I wondered if he was sleeping. I knocked gently and heard him say, “Come in.” Norman greeted me and seemed pleased to see me, but he was much less animated than usual.

  The curtains were drawn and the room almost dark but for the glow of the setting sun showing through the thick drapes. Wall oxygen was bubbling through a humidifier and being delivered to him through green nasal cannulae. His roast beef dinner lay untouched next to his bed. Norman was breathing rapidly, about twenty-eight breaths a minute, and a fine sheen of sweat had formed on his brow.