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1983 DAN AND I, WHO WERE responsible for our residents’ education in clinic matters, asked Jeanette, a young Haitian-American psychiatry resident, if she would talk to the residents about Haitian culture. We hoped these talks might break down some of the barriers that had surfaced between our residents and their patients. Jeanette served as our liaison with the Department of Psychiatry. She usually taught the residents generic issues that general medical doctors need to know about psychiatry—recognizing depression, treating anxiety. The idea of using someone from one culture to teach doctors from another culture was novel. Poised and confident, she set up a television and video cassette recorder and engaged the residents with her eyes.

“Today I’m going to share with you the secret of the zombie curse.” Usually it was difficult to get the medical residents involved in behavioral science seminars, but Jeanette captured her audience with her first sentence.

“There are zombies in Haiti, and it’s related to Voodoo. Who knows what Voodoo is?”

“That’s the religion in Haiti where they stick pins in dolls,” vol-



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The Zombie Curse: A Doctor’s 25-Year Journey into the Heart of the AIDS Epidemic in Haiti Zombie 1983 DAN AND I, WHO WERE responsible for our residents’ education in clinic matters, asked Jeanette, a young Haitian-American psychiatry resident, if she would talk to the residents about Haitian culture. We hoped these talks might break down some of the barriers that had surfaced between our residents and their patients. Jeanette served as our liaison with the Department of Psychiatry. She usually taught the residents generic issues that general medical doctors need to know about psychiatry—recognizing depression, treating anxiety. The idea of using someone from one culture to teach doctors from another culture was novel. Poised and confident, she set up a television and video cassette recorder and engaged the residents with her eyes. “Today I’m going to share with you the secret of the zombie curse.” Usually it was difficult to get the medical residents involved in behavioral science seminars, but Jeanette captured her audience with her first sentence. “There are zombies in Haiti, and it’s related to Voodoo. Who knows what Voodoo is?” “That’s the religion in Haiti where they stick pins in dolls,” vol-

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The Zombie Curse: A Doctor’s 25-Year Journey into the Heart of the AIDS Epidemic in Haiti unteered one resident. “People are so afraid of it, that it controls their minds,” another resident answered. “You’ve been watching too many movies,” said Jeanette. “Voodoo is the Creole pronunciation for the French Vieux Dieux*—the old gods, the spirits of the forest, in Creole the Lwa, who can be called out from their homes in the mapou and mahogany trees. The gods the slaves brought from Africa. The French tried to impose Catholicism on their slaves and to a certain extent succeeded. But the old gods, the Lwa, continued almost like the Catholic saints—there for personal intervention. In fact, in Haiti many of the saints have two personae—their Catholic image and their Voodoo role. The power of the dokte fè—you might call him a witch doctor, but the name really means “leaf doctor”—comes not from superstition but from a refined knowledge of the pharmacological effects of local plants and animals. Just as the Inuit have many words for snow, the Haitians have several names for practitioners of their secret rites. In addition to dokte fè, there’s hougan, spell giver; bokar, a male priest; and mambo, priestess. And there are several kinds of spells too; good spells and bad ones, ranging from a mojo—a love potion—through curses meant to wreak revenge. The worst, though, is the zombie curse. Jeannette showed a documentary tape from the BBC of people who were declared dead, buried, and then turned up alive. In one case, a man returned to his sister’s house 14 years after he was buried. The residents were spellbound. “The key to the zombie curse is tetratotoxin, found in the skin of puffer fish, abundant in the waters surrounding Haiti. It induces a state indistinguishable from death. The dokte fè returns after the funeral, exhumes the body, and administers an antidote that keeps the zombie in a drugged state. Zombie is Creole for ‘like a shadow.’ Literally, when you’re a zombie, you’re only a shadow of your former self. *   This was Jeanette’s explanation of the word “Voodoo”; many scholars believe it is derived from the Fon word for “spirit”—”Vodoun.”

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The Zombie Curse: A Doctor’s 25-Year Journey into the Heart of the AIDS Epidemic in Haiti “It’s a life of slavery, the worst fate possible for the descendants of slaves. The curse is therefore only applied by a secret village council to individuals believed to have violated the rules of society and who need to be cast out. It was a way of keeping the old religion and indeed the old African society alive, and it served as a potent weapon against their French masters. Think of the symbolism. The dokte fè has actual power over life and death. You die, and he raises you up, not just your soul but your body as well. That’s tough for other religions to match.” “Great lecture!” I thought to myself. “One of the best I’ve ever heard.” Unfortunately, the audience consisted of only myself, Dan, Amal, and six residents. The residents were enthusiastic and congratulated Jeanette for an excellent talk. “Now that you know about the zombie curse, don’t keep it a secret. Tell your fellow residents,” she advised. On the ride home I asked Amal what she thought of Voodoo and the zombie curse. “Only God can give us everlasting life,” she responded. “It’s magic, black magic, a trick. A clever trick, but a trick all the same.” “I think you missed the point,” I answered, looking at her and negotiating traffic at the same time. “It’s not a question of whether it’s magic or real, although that guy who walked into his sister’s home 14 years after being declared dead sure seemed real to me. It’s a question of whether Voodoo is a real religion or not, on the same par with Catholicism, Buddhism, Islam, and all the others. I think Jeannette made a compelling case that it is a coherent set of beliefs and practices devised to make sense out of the unknown and perhaps to exercise some degree of control over it. The thing about the zombie curse that’s so interesting to me is not the spell itself, but the fact that it has the full weight of a law. It’s cast as a formal judgment of innocence or guilt.” Amal fell silent for the remainder of the ride home. I think our theological discussions were starting to frighten her. Thanks to the Centers for Disease Control, by the time our paper

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The Zombie Curse: A Doctor’s 25-Year Journey into the Heart of the AIDS Epidemic in Haiti had been accepted for publication the news had already been released to the media that Haitians were at risk for AIDS. Our local newspaper had a front-page article entitled “Haitians Dying of ‘Gay Plague.’” Other stories suggested that AIDS, in fact, had originated in Haiti and perhaps was related to secret Voodoo ceremonies involving the drinking of blood. These stories, usually accompanied by a picture of a Voodoo priest or priestess slaughtering a chicken or goat, I found particularly offensive. The implication was that one could get AIDS from drinking animal blood or that there were secret Voodoo ceremonies involving cannibalism, vampirism, or human sacrifice. Even having just begun the process of getting to know a few Haitians as real people rather than media caricatures, these stories infuriated me. I could only imagine how the Haitians felt. Margaret appeared on television several times attempting to explain what we had discovered, but the media always seemed to edit her meaning. As an “insider,” it hurt to see how our work was being distorted and misrepresented in the press. Our discovery of 22 patients with AIDS was portrayed as a rising epidemic threatening to engulf the 150,000 Haitian immigrants residing in South Florida. The possibility of heterosexual transmission implied by our data further fueled the flames of sensationalism. Spokesmen, including physicians, in the Haitian community were particularly upset with us. To a certain extent they were justified. Life for Haitian immigrants in Miami was difficult enough without having the entire community accused of introducing a modern-day plague. Haitians were both fired and not hired because the research performed by us played to the inherent bigotry of some employers. The Haitian community responded to this threat to its existence in our country by accusing us of being bad scientists. We hadn’t been able to talk to our patients in their native language; we didn’t understand the Haitian cultural taboos against homosexuality and therefore the reluctance of our patients to admit to such practices; we had failed to involve the Haitian community in our study.

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The Zombie Curse: A Doctor’s 25-Year Journey into the Heart of the AIDS Epidemic in Haiti Most of this anger was directed at our most visible representative, Margaret. Our Haitian critics charged that labeling Haitians as being a risk group for AIDS was just a new sort of racism. Each of these accusations, but particularly the last one, hurt us deeply. We had started our project with no preconceived ideas, only the problem of sick patients who happened to be Haitians who were dying on our wards. We never claimed that patients got AIDS because they were Haitian, only that the disease was present in a group whose only apparent link was a common ethnic background, similar to sickle cell anemia among American blacks or ulcerative colitis among Jews. These were medical facts, not political statements; they were clues to the riddle, not bullets for the gun. In addition to hurting us, these charges also raised the first seeds of doubt about what we were doing. In retrospect we had been naive in our interviewing techniques and our assumption that patients, speaking through an interpreter, would reveal intimate details to physicians they had never before met. We probably did not identify some who were gay, or who had sold themselves in prostitution, or who had visited prostitutes but were ashamed to admit it. But for the most part, those men that we followed over time who told us they were not homosexual seemed quite credible. And what of the women? How did they get the disease if homosexuality was the only risk factor? In attempting to protect the Haitian community from bigotry, our critics were forced to question not only us but also the truthfulness of each of our patients. It seemed to be a no-win situation. Ironically, in 1983 and 1984, Dr. Luc Montagner in France and Dr. Robert Gallo in the United States respectively, discovered that AIDS was caused by a virus. That discovery made the whole concept of risk factors irrelevant. AIDS was an infectious disease, nothing more. But it was too late. The labeling, stereotyping, and blaming had already taken too strong a hold. The politicization of AIDS in the press also had adverse effects

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The Zombie Curse: A Doctor’s 25-Year Journey into the Heart of the AIDS Epidemic in Haiti on day-to-day life on the hospital wards. Panic was spreading among the hospital personnel. It seemed as if everyone was worried about being infected. Some nurses refused to bathe patients with AIDS, transportation workers refused to move patients with AIDS, and in some cases residents avoided caring for AIDS patients. I would be embarrassed to enter elevators and find patients who obviously had AIDS going to the x-ray department or some other part of the hospital being transported by people wearing surgical gowns, masks, caps, gloves, and booties. In defiance, I made an effort to talk to these patients if I knew them, wish them well, and touch them as we parted company. Walking down the corridors I would overhear nurses’ assistants saying to each other things like, “I don’t care if they fire me. There is no way I’m emptying so and so’s bed pan.” I made a point to go up to these groups and tell them not to believe what they were reading in the newspapers. I had touched these patients in the course of examining them as much as anyone, going back to before we even knew the disease existed, and I was still alive and well. Usually my pleas for rationality were met with quiet disbelief. In the beginning, the hospital gave each patient with AIDS a private isolation room. This was one of the few “perks” associated with the disease. Two years into the epidemic, this policy had to be abandoned, as every private room on our floor was occupied by a patient with AIDS. There were concerns about putting AIDS patients in the same room with non-AIDS patients. There were concerns about putting AIDS patients in the same room together because they might infect each other with opportunistic infections. There were concerns about putting gays with AIDS in the same room for fear of illicit sexual activity. These discussions took place not once but with ever-increasing frequency as the number of patients continued to climb. Eventually economics won out. Any qualms about who a patient’s roommate might be had to be abandoned in the face of the overwhelming number of patients who needed beds. Finally, there were fears about taking patients with AIDS home. Families of victims couldn’t cope, either because of the overwhelm-

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The Zombie Curse: A Doctor’s 25-Year Journey into the Heart of the AIDS Epidemic in Haiti ing debility of the patients or because of fear of contagion. Boarding homes and nursing homes frequently refused to take those who were too ill to be cared for by their families. Our wards became “God’s waiting room.” One poor patient with Kaposi’s sarcoma spent four months waiting to die on my ward service, simply because he had no place else to go. During all but the final week of that hospital stay he was alert and capable of caring for himself. Pressure was increasing from two directions to try to get me to move Margaret’s practice. From the clinic administration I would hear about alleged complaints from the private patients about sharing the waiting room, examining rooms, and bathroom with AIDS patients. Are the examining rooms wiped down with alcohol each time after they’re used? Are the toilet seats disinfected? And thank God we have disposable speculums! These objections were easy to deal with. I told the administrators that there was no evidence a person could get AIDS from just sitting where someone with the disease had sat. Margaret was taking care of a problem no one else was willing to face and that was not going to go away. Yes, I agreed, thank God for plastic speculums. (It’s hard to believe now, but disposable speculums were still an innovation at Jackson Memorial Hospital in the early 1980s!) It was more difficult for me to deal with complaints from fellow faculty. They had known of our study from the beginning. They were friends. They were working for the same goals that I was. They cared about our patients. They told me that this was no way to run a private practice. The AIDS patients were never going to be a central part of our job, which focused on teaching general medicine. Private practice development was more important. If I wanted the private practice to succeed, the AIDS patients would have to go. One faculty member, who is usually calm and unflappable, was particularly upset. “This office has become Miami’s answer to the Turkish baths. Fanny found two gays fondling each other behind the door to her office. How would you feel if you were a private patient sitting in our waiting room and were surrounded by all these homosexuals?

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The Zombie Curse: A Doctor’s 25-Year Journey into the Heart of the AIDS Epidemic in Haiti And Theophile, he’s walking around begging for cab fare home. You have to talk with Margaret.” I told him I would speak to Margaret, but then I stalled. Meanwhile, Margaret’s composure was beginning to unravel. Although she wouldn’t admit it, she clearly had more work than one person could manage. Patients sometimes arrived without appointments, having heard about her through the grapevine. They waited all afternoon just to have the opportunity to talk with her and try to make an appointment. Others with appointments waited all afternoon only to be turned away without seeing her, as she was tied up in the hospital ministering “last rites” to one of her dying charges. The housestaff’s gallows humor said if you’re a patient, you know you are in trouble when they call in Margaret as a consultant. Some very cruel colleagues referred to her as the “fag queen.” These sorts of comments, coupled with the criticisms directed at her from the Haitian community, needed only the extra burden of the death of one of her patients to bring her to the verge of tears. On occasion she would blow up at the secretarial staff and then, regaining her composure, apologize. Gwen in pediatrics and Mary Jo in obstetrics were under similar strains—solitary figures fighting a lonely battle against a disease few of their peers wished to face. Belony declined to the point that he had to be admitted to the hospital. My patient was no longer even recognizable as the person I had started to follow several months before. His hair was almost completely gone, his eyes were sunken and defeated, his skin was excoriated, and his lips were cracked. He was too weak even to acknowledge my presence. He died a few days later. I had followed him for seven months, yet I could not honestly say I had done anything for him. There had been a barrier between him and me that I had not been able to break down. I was not sad at his death. His decline had been so pathetic that death was merely the end of his suffering. But I was disturbed with the possibility that, medically or humanly, I had missed something. Previlus arrived in my office or in the emergency room approxi-

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The Zombie Curse: A Doctor’s 25-Year Journey into the Heart of the AIDS Epidemic in Haiti mately once a month with fever, diarrhea, and dehydration. At the time of each admission he looked desperately ill, but he responded quickly to intravenous therapy. After recovering, he would disappear again to Belle Glade. I was impressed with his resiliency. He was always eager to return to work, for he was sending most of his earnings to his family in Haiti. Occasionally he would show up in the office for refills of the medication that controlled the fungal infection in his mouth. On these visits he would always seem to be in a hurry. He would only complain about his itchy skin and inquire whether I had anything new to try for it. Although he knew he had AIDS, I marveled at his nonchalance. He was always so concerned with mundane and trivial matters, despite the impending doom. The way he would materialize without warning either in the office or in the emergency room contributed to my growing feeling that things were getting out of control. I had to admit Régis once with a recurrence of pneumonia. This time, though, he was not nearly as ill. His hospital stay was uneventful. Amal visited him in the hospital. Afterwards she asked me if there was any hope of recovery. I told her truthfully that we had yet to see a spontaneous recovery but that I still had hope for Régis since he and Theophile were doing the best of all the Haitians we had followed. I did not tell her that I was disturbed when I tried to admit him to discover that he no longer had a valid clinic card. This required me to certify him as having a life-threatening illness in order to get him admitted. When I asked about this, he told me that his green card had been lost in a fire and that he could no longer prove his legal residency. For the first time I doubted something he told me. I had heard the “lost in a fire” green card excuse before. It was a standard, unimaginative excuse for many who did not have the Immigration and Naturalization Service’s (INS) permission to be here. I didn’t blame him for trying to stay here longer than he was legally allowed, but I couldn’t understand why he couldn’t tell me about it honestly. After that admission I had to either pull strings or sneak Régis

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The Zombie Curse: A Doctor’s 25-Year Journey into the Heart of the AIDS Epidemic in Haiti into my office in order to see him. Obtaining even routine laboratory tests was next to impossible without a clinic card. Margaret had begun a study using interferon as therapy for patients with AIDS and was giving it to Régis, but again, without a clinic card, it was impossible to monitor the effects. To make matters worse, he was not rehired for his teaching job. He claimed that his employers did not know he had AIDS but did not rehire him because he had missed too much time being ill. He took a one-room apartment with a friend and shared the rent. He hoped to live off his savings until he got better or we cured him. Régis told me he thought his mental powers were deteriorating—that he could not remember or concentrate as well. This frightened him greatly. When I tested him with serial calculations, remembering large numbers forward—and backward, and with proverb interpretation, I could detect no deficiency. Although still meticulously neat, he no longer came to the office in a suit coat but rather in a plain white shirt, open at the neck, with no tie. At the time we were fortunate to have on staff a compassionate and dedicated social worker named Alina, who always welcomed a new challenge. One day while Régis was sitting in the waiting area, I called her into my office. I asked her if she would be willing to take on what might be a most difficult case. I outlined Régis’s illness, his personality, his current difficulties with the INS, and the social problems his illness was causing him. I told her I was beginning to believe there were no solutions to his problems but that he was one of the most extraordinary people I had ever met. At first she was reticent. I knew she had recently been hurt by letting herself get emotionally involved with patients and their frequently insolvable problems. She told me as much and said she would think about it and let me know by the following day. I didn’t push. Perhaps she was having a bad day. Before I had finished with Régis on that visit though, she knocked on my door and told me she would accept my offer and try to help. When I introduced Régis to Alina, his charm and smile returned

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The Zombie Curse: A Doctor’s 25-Year Journey into the Heart of the AIDS Epidemic in Haiti for the first time in a good while. She talked with him for an hour. I did not see either of them that day after the interview. The following morning I asked her about her thoughts. She said, “You were right, Art. He is an incredible person.” “The man is a saint,” I replied. “There certainly doesn’t seem to be any justice in what life has thrown his way.” Alina agreed. She had advised Régis that the only way to begin to help himself was first to prove the validity of his residency in this country. Once that was accomplished, she could arrange for him to get temporary financial assistance and a clinic card, which would allow him to receive medical care. He said that if he went to the INS, he would surely be arrested and deported. Furthermore, if he was sent back to Haiti he would most certainly die. She persisted that this was the only way we would be able to help him. He said that he would think about it. I saw him weekly, mostly to test his mental status and reassure him that he was not deteriorating. He seemed to depend on these visits for his sanity. I got the impression that the people in our office were the only people in the world with whom he shared his secret. He would always have a few words with Amal while he waited and then would visit at length with Alina when I was through with him. I was grateful that she had relieved me of major responsibility for his emotional support. He was so articulate. To hear his thoughts and fears and not be able to do anything about them left me drained. The more we pushed Régis to go to the INS the more he resisted. He seemed more afraid of returning to Haiti than of being destitute and dying in this country. I wondered if he was in trouble there or if there was something else he was hiding from. Alina thought the explanation was simple: If he went back to Haiti now, his whole life would be a failure. He was not ready to face that prospect. He chose instead to try to survive from week to week, hoping, with some encouragement from Amal, for a miracle.