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Danse Macabre

1985 DAN AND I TOOK MARGARET aside and talked with her about starting a special clinic outside our office for patients with AIDS. Both staff and private patients could be seen there by the faculty. This would facilitate her research and also provide a service to the house staff, for AIDS patients were usually too ill and too complicated to be followed in the general medical clinic by the residents. Gordon and I agreed to continue to help her. Euphemistically, we called it the Special Immunology Clinic.

The danse macabre continued. Previlus died while I was away on vacation. He came into the emergency room dehydrated from diarrhea, as he had done so often in the past. Then he unexpectedly had a cardiac arrest. He was resuscitated and spent his last few days in the intensive care unit before he gave out completely.

Of the original group of patients only Theophile was still with us. For four years he did remarkably well. I asked Gordon what the secret of his success was. “I don’t know, maybe Voodoo,” he said, half jokingly. Soon thereafter, however, Theophile took a turn for the worse and was admitted to the hospital at the same time that Previlus died.

Other patients played out their illness shortly after Régis left.



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The Zombie Curse: A Doctor’s 25-Year Journey into the Heart of the AIDS Epidemic in Haiti Danse Macabre 1985 DAN AND I TOOK MARGARET aside and talked with her about starting a special clinic outside our office for patients with AIDS. Both staff and private patients could be seen there by the faculty. This would facilitate her research and also provide a service to the house staff, for AIDS patients were usually too ill and too complicated to be followed in the general medical clinic by the residents. Gordon and I agreed to continue to help her. Euphemistically, we called it the Special Immunology Clinic. The danse macabre continued. Previlus died while I was away on vacation. He came into the emergency room dehydrated from diarrhea, as he had done so often in the past. Then he unexpectedly had a cardiac arrest. He was resuscitated and spent his last few days in the intensive care unit before he gave out completely. Of the original group of patients only Theophile was still with us. For four years he did remarkably well. I asked Gordon what the secret of his success was. “I don’t know, maybe Voodoo,” he said, half jokingly. Soon thereafter, however, Theophile took a turn for the worse and was admitted to the hospital at the same time that Previlus died. Other patients played out their illness shortly after Régis left.

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The Zombie Curse: A Doctor’s 25-Year Journey into the Heart of the AIDS Epidemic in Haiti Julienne suffered before she died probably more than anyone. She had AIDS on top of diabetes and was afflicted with the worst case of oral thrush and genital herpes one could imagine. The herpes blisters were so extensive and weeped so much she could not sit down without staining her bed clothes. During her last few months I had her in the hospital five times—twice for toxoplasmosis, from which she made a dramatic recovery, twice because the thrush was so bad she could not eat, and once for tuberculosis. Through all this suffering she never failed to smile when she saw me or thank me as I left. She died of a disseminated virus. Herminio did well for a while but then began to decline. He started to age visibly between visits like so many of the patients Margaret used to follow in the office. We diagnosed tuberculosis, and I hoped he would stabilize with treatment. He still had not told his mother what he had. After each visit he apologized for the inconvenience he had caused me. Each time I told him it was not his fault. He looked at me directly and answered, “Yes, it is.” The Special Immunology Clinic was held every Thursday afternoon. The waiting room was filled with patients in all stages of the disease and their lovers and families. The clinic staff showed varying degrees of apprehension. One secretary wore rubber gloves to run the appointment computer. She didn’t even work near the patients. On the other hand, although concerned about contagion, the nurses in the clinic demonstrated an extremely professional attitude. They took the temperature, pulse, and weight of the patients before they were seen by the doctor. Even in this high-technology era, these simple measurements were the best way to separate who was doing well from who was doing poorly. They helped us draw blood and cleaned up after the patients. After the clinic was over, they were instructed by the clinic administrators to wipe down the examining tables and furniture with disinfectant and alcohol. In addition to seeing increasing numbers of patients with the real disease, we began to see more and more of the “worried well.” The newspapers ran stories about the spread of the epidemic among

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The Zombie Curse: A Doctor’s 25-Year Journey into the Heart of the AIDS Epidemic in Haiti drug users. Shortly after these stories appeared, I began to see one or two patients per week who had dabbled with drugs and were now convinced they were dying. Their symptoms were, for the most part trivial—a sore throat that took longer than a week to get better, a bruise that was slow to heal, or a bump on the scalp that had not previously been noticed. Their anxiety was visible from across the waiting room. Ironically, the patients who actually had the disease were much calmer. About 25 patients were now coming to the Special Immunology Clinic each week. Of these about 15 actually had AIDS and were being followed by Margaret, Gordon, or myself. Another five were “worried well.” The remaining group did not have AIDS but had symptoms or signs which suggested that something was not quite right with their immune systems. At the time we did not know what to make of those patients. Brian was 30, muscular, with blond hair and a great tan. He came to the clinic wearing a cut-off sweatshirt and shorts, which exposed part of his rear and sneakers with no socks. He had a lover who had died of AIDS. He lived in Fort Lauderdale and worked as a waiter. Although outwardly at ease, I felt mildly uncomfortable taking care of the increasing number of gays who were coming into my practice. Although Brian suffered some weight loss and diarrhea, he was still healthy enough to be flirtatious. Or was he just having fun with my discomfort? “You’re kind of cute. I was expecting a lady doctor.” “Margaret and I work together. I’m kind of a silent partner. I don’t get much publicity.” “Oh, the Gary Cooper type? Well, that’s okay by me.” He then launched into a monologue of the difficulties in getting an appointment, taking time off from work to come down from Fort Lauderdale, having to pay his fee in advance and so forth. Another man had come into the examining room with Brian. He said nothing but seemed deeply concerned and watched my every move with great interest.

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The Zombie Curse: A Doctor’s 25-Year Journey into the Heart of the AIDS Epidemic in Haiti In addition to his symptoms, Brian had impressively swollen lymph nodes. I recommended a lymph node biopsy. We had already identified others who seemed to fit into a category similar to Brian’s, with swollen lymph nodes, fever, weight loss, perhaps diarrhea or thrush, but no overwhelming infections. They frequently had a relationship with someone else who had the full-blown syndrome. Brian missed his appointment the following month. A week later I got a phone call. He had not kept his appointment because the lymph node biopsy I had scheduled had not been performed. The surgeon had been tied up with emergencies. I had to call the surgeon, rearrange this procedure, and reschedule Brian back to see me in the clinic. The lymph node biopsy proved inconclusive, but his symptoms had progressed enough to erode his bravura and cynicism. “Hi, doc. Glad to see yah. I know why I’m here today, but God only knows why you are. I don’t know how you can stand dealing with a problem like this. You gotta help me, Doc. I’m not ready to die at 30.” I explained to him that he didn’t have the complete picture of AIDS and that we needed to follow him to see if he improved or deteriorated. Margaret had a protocol using a drug that stimulated the immune system. I got Brian enrolled in it. I told the story of Brian to my wife at supper. As a general rule I didn’t talk about AIDS or the Special Immunology Clinic. She knew I worked there every Thursday. Each Thursday when I came home from work she asked me if I had washed my hands. Although she claimed she was being funny, I worried that she was serious. She told our friends who knew I was working with AIDS patients that, if I ever came down with the disease, I’d be “out the door” in a minute. To say my wife and I are very different is a gross understatement. Our two daughters picked up on this early on. When they were teenagers, they would introduce us to their friends with, “Meet our parents, yin and yang.” We came from very different backgrounds. I grew up Catholic and poor. Janet is the middle child of Jewish par-

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The Zombie Curse: A Doctor’s 25-Year Journey into the Heart of the AIDS Epidemic in Haiti ents. Her father, brother, and sister are all physicians. What’s kept us together through the years are the shared values, clearly inculcated by my Italian mother and her Jewish mother, of commitment to and primacy of family. In retrospect, the AIDS epidemic was, in Janet’s eyes, more of a threat to our relationship than infidelity. Remember, in the early 1980s we still didn’t know very much about the disease. What if I died and left her children fatherless, or what if I somehow passed it on to her? More importantly, she probably felt she was losing me to my work. AIDS, in effect, became the “other woman.” In truth, the epidemic was consuming large chunks of my life. I was becoming a workaholic, with an 80-hour workweek and two to three hours nightly on homework, writing grants and articles. To me it was a question of balancing two commitments—one to my family and one to my profession. To Janet’s way of thinking, there could only be one commitment—to our family. Our children, Adrienne and Suzanne, of course, took all of this in. Fortunately, I was aware enough of what was happening to somehow time manage my life. I made a commitment to be there for my children. Our daughters, in turn, were always wiser than their years. Not only did they understand their parents’ differences, they somehow managed to synthesize the best of both of us. In fact, if the AIDS epidemic drove a wedge between my wife and me, it also forged a bond between me and my daughters. It opened their eyes to responsibilities beyond family. My older daughter, Adrienne, was 7 in 1983. Before the acronym AIDS had been coined, we had been calling her “Aids” as an affectionate abbreviation. One day she came to us and said she didn’t want to be called “Aids” anymore. She had seen on the television that it was a horrible disease and people were dying from it, and she didn’t want it as a nickname any longer.