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Learning to Speak: The New Age of HIV/AIDS in the Other Jamaica

[clock] 34-MINUTE READ ISSUE:  Spring 2008
Annesha Taylor’s daughter prays at an altar constructed in their backyard in Arnett Gardens in Kingston.


There are two Jamaicas.

Tourists see the north coast country—its all-inclusive hotels, sunny beaches, and high-end restaurants—and a few fleeting glimpses of what most believe is the worst privation they have ever witnessed. They see half-naked children, zinc-roofed homes, hustled trinkets, and they think poverty. They think they are seeing the other Jamaica, but they are not.

The other Jamaica, where I am from, lies hidden on the far side of the island, on the south coast. This Jamaica, this Kingston, is a rollicking and complicated place, a genuine city with all the pressures of city life. The industry and business are here, the commercial centers are here, and here people do not define themselves by the presence of tourists. There are almost no tourists. The few white people on the streets are either white Jamaicans going about their daily business or a few adventurous tourists making a hasty pilgrimage to the Bob Marley Museum before getting out of Kingston as fast as they can. But Kingstonians have a great deal more to worry about than tourists.

This Jamaica knows poverty. This Jamaica knows violence. This Jamaica is self-assured and brash, this Jamaica is smart, this Jamaica is volatile, this Jamaica is filled with energy and uncertainty. This Jamaica stirs my sense of home when I land at the airport and find myself driven at breakneck pace along the narrow strip called the Palisadoes Road, along the coast, through Mountain View, past the National Stadium, and then deep into the upper reaches of Kingston. This is the Jamaica I know. I feel at home watching the way people move on the street, the way women laugh, the way men gesture, the way drivers quarrel and dialogue with horns and hands and head signals.

I have returned to find out about HIV/AIDS in this Jamaica—the second Jamaica, my country, where about 1.5 percent of adults are living with the disease (nearly three times the rate in the US). It is as much a part of my Jamaica as it is part of the bodies of many of its citizens. And even though I will later learn that there are places in the US (including my own state of South Carolina) where the disease’s incidence rate is at epidemic proportions among African Americans, it would take my trips to Jamaica and this journey into the day-to-day lives of people living with the disease for me to truly appreciate its complexity.

A boy stands at a street corner in Arnett Gardens in Kingston.

I meet Peter Figueroa on the closed-in porch of his spacious home on the outer edges of Barbican in Kingston. He is a slight man with a burst of dark wavy hair and a tidy beard. If HIV/AIDS in Jamaica is a story of biblical suffering, then Figueroa is its Moses, the carrier of the accounts that thread into the Old Testament—the period before antiretroviral drugs, the period of deep sorrow and pain, the period that created heroes but quickly killed them. Soft-spoken but gregarious, the longtime epidemiologist has been leading the fight against the disease since it began.

The first Jamaican victim was a gay man who, having lived in New York for several years, returned home to Jamaica and fell ill in 1981—the same year that cases were reported in the gay community in the United States. It would be three years before the next case emerged, but then they started to multiply, and soon Figueroa saw the illness diversifying. “It was not only gay men who were becoming infected,” he tells me. “There were a number of migrant workers—Jamaicans who were going to Bell Glade in Florida to cut cane.” Figueroa interviewed these men, met with their families. “What came out was that some of these individuals, when they were in Bell Glade, they were there for six months or longer, and when payday came, the female sex workers used to flock to them.” Figueroa understood that much of the literature from North America indicated that the disease affected only homosexuals, but he could see it was more widespread than that—and that it had the makings of a serious epidemic. But most medical practitioners ignored his warnings.

Talking HIV in Jamaica

By the Pulitzer Center on Crisis Reporting, for Foreign Exchange.

Meanwhile, Jamaicans were dying, and there seemed nothing that anyone could do. That was the Old Testament—when Figueroa could not cure or even treat these people, only oversee their passing, bear witness to their deaths. He speaks quietly and with resignation about those nightmarish years. “All I could offer them was supportive care, antibiotics, antidiarrheals—no antiretrovirals until well into the 1990s. I can remember vividly many individuals who, literally … I could see them dying before me.” Then came the new dispensation and, with it, a new narrative.

In the New Testament, the growing availability and affordability of antiretroviral drugs—through funding from the Global Fund to Fight Tuberculosis, AIDS, and Malaria; the Clinton Foundation; and several private sector partnerships in Jamaica—brought about a dramatic change in the lives of people with the disease. They were getting better. They were looking healthier, and the language and spirit of the public awareness campaigns were beginning to change. It became possible to say you could live a normal life in Jamaica even after being diagnosed HIV-positive. It became possible to talk about “getting on with life,” as one of the public campaign slogans promised. But there were limits to this normalization of HIV/AIDS. It is one of the few terminal diseases that elicits the question, “How did you get it?” If you are HIV-positive, everyone knows that you had sex, and it must have been with someone you shouldn’t have had sex with or with someone who had sex with someone they shouldn’t have had sex with. It suggests a background, values, a lifestyle—history, history, history.

Antiretroviral drugs assured people that they could continue to look well, feel better about their bodies, and not have to prepare for death, but these drugs also meant that they had to make decisions about how to have a love life, how to cope with sexual interest from people who did not know that they were living with the disease. When they were constantly sick, sex was an absurd memory, a treachery of sorts, but now they looked and felt healthy. Now that they were not about to die, they had to decide what kind of lives they would live.

The Greater Portmore Health Centre is a complex of flat-roofed buildings set deep in this sprawling bedroom community that was built over the past thirty years on reclaimed swampland on the coastal plains of St. Catherine, about twenty minutes from downtown Kingston. The smell of heavy salt air off the sea and stagnant sewer water is oppressive, but Portmore is not a ghetto—it is a city trying to define itself, a city of working-class people hustling, trying to eke out a living. The Health Centre is festooned with unruly green shrubbery and a few almond trees. The stony parking lot is never empty. People squat and stand around, chatting, waiting, or simply gazing across an embankment to the main road.

Inside, the HIV/AIDS support group sits in the hot, low-ceilinged building, with the pewlike wooden benches arranged in a V. Pauline, a light-skinned, long-faced woman with a cluster of tightly twisted balls of hair all over her scalp, waves her slim hands and purses her lips before she speaks with wide open eyes. “Me, it come in like me want it more after me find out. More, more.” She laughs loudly. Everyone wants the people in the group to say that their desire for sex diminished when they found out they were positive, but Pauline is having none of this. She wanted more sex and she had more sex. For her, it was a straightforward thing. Now she knew how little time she had left. “Just put on protection, and get it done, baby.”

The room laughs. She begins a rambling story about a man who pressured her for weeks to have sex with him even when she told him, somewhat obliquely, that she was HIV-positive. “I said to him,” she says, standing up and cocking her hip to the side for effect, “then suppose I have AIDS, you still want to have sex with me? And him say, ‘Yes, of course.’” She liked him, so she denied him, and one day she saw him with his wife, and she told the wife to her face that she should thank her for saving her life. And she and the wife became good friends. She claps her hands and repeats, “I saved her life, okay?” Pauline, despite her disheveled dress and broad manner, carries herself as a sexual and desirable woman. Only once, when she pauses to think about how hard it is to negotiate relationships while infected, does she let the strain show. The shadows around her eyes seem to darken; her face grows gaunt.

Glendon Asphall, by contrast, tells the group that he lost all interest in sex as soon as he learned of his status. He became profoundly depressed. Sex had done this to him and he did not want anything more to do with sex. He stayed celibate for two years. Pauline screams in disbelief. Glendon smiles tolerantly and repeats that he was so depressed by the disease, so sick sometimes, that sex was the farthest thing from his mind.

The most articulate man in the group, who identifies himself only as Dave, agrees with Glendon, but goes on to explain how hard he had to work not to have sex with women whom he wouldn’t tell that he had the virus. He was no saint before the disease took hold of him. His women knew him to be quite the ladies’ man. But suddenly he did not want to have sex. He would panic, he says, when his phone would ring and it would be a woman wanting to come by for sex. He would lie, create some excuse. Nothing in him wanted to have sex. Nothing in him wanted to contaminate anyone else.

Glendon Asphall stands in front of a church near Portmore.

He is a handsome man with a broad strong face, and he speaks with a reasoned charm of a harrowing sequence of events that would take him from being a well-positioned and apparently successful man to the brokenness of multiple strokes and deep illness. He is secretive, he says, but what he means is that he is a master of euphemism. You cannot tell if the “institution” where he had to spend time while in the US was a psychiatric hospital or a prison. Nor can you be certain whether the “business deals” that fell through, leading to his return to Jamaica, were legitimate investments or some nefarious activity. Yet he manages to tell the compelling story with a soft intensity, his head titling slightly whenever he describes some startling absurdity.

It is not until after the meeting that I realize how seriously the disease has ravaged his body. He had spoken of several strokes, but I did not know he had such an acute limp or that he needed a walking stick. He speaks with an authority that makes you sometimes forget he is living dangerously and may be endangering others. He tells the story of a woman he had been with. She had moved to the UK and heard the rumor that he was suffering from HIV. She called him, concerned, wanting to know if it was true. He lied to her. He told her it was only a rumor, that he was fine. She wasn’t convinced and traveled all the way from London to see him. He dressed up in his finest clothes to meet her. She looked at him and instantly got angry at the people who had lied about his illness. She left feeling so assured he was not sick that she saw no reason to get tested herself. Everyone laughs at his story, his supporters celebrating just how well the antiretroviral drugs have restored his body, how effectively they support his deception.

Afterward, I overhear him making delicate but clear advances to a woman he spotted in the meeting. I realize that he, too, is learning to live with this disease as a man who once lived a life of sexual strength and influence. It is hard for any of that to change. No one in the group condemns him for his secret-keeping, for his silence, for not telling other people, for blatantly lying about his condition. They understand. They know that if you want to experience some tenderness, or if you want to live as if you are a normal person, you can’t confess. They know the world is full of people who don’t understand. The world, they know, is full of people like me.

Annesha Taylor had made her way northward from her home in Arnett Gardens, a congested inner-city community of zinc fences and makeshift shacks, through serpentine lanes and up Slipe Road, until she came to the Kingston Comprehensive Clinic, a cluster of weatherworn bungalows with dark interiors of polished red concrete floors. She had come to be tested for HIV. She was positive. And for weeks after, the twenty-one-year-old mother of three—the last not yet a year old—devised ways to kill herself. When she drank bleach, she had to be rushed to the Kingston Public Hospital, where she told her counselor, a gentle bear of a man named Mr. Lindo, that she wanted to die. He encouraged her, comforted her, guided her to a support group, where she would see that the disease was not a death sentence. She did so well, in fact, that the Ministry of Health made her the front woman for their new “Getting on with Life” campaign, which aimed to raise awareness and understanding about Jamaicans living with HIV/AIDS. Her smiling face graced pamphlets and PSAs on television; her voice was broadcast on radio all across Jamaica. She spoke to crowds about abstinence and safe sex.

I meet Annesha in a brightly lit examination room in the more modern wing of the same clinic where she was first diagnosed. She looks at me steadily, a ceiling fan whirring in the corner of the room, and explains the anguish of being HIV-positive and young and wanting to be loved. She knows that only desperate and hopeless men, like the man who wanted to be with Pauline, would want to be with her now.

Annesha maintains that she would rather be alone but breaks into a sly smile that makes me doubt her—and I tell her so. She insists it is her lot. She has three kids, and that is the first strike against her finding a man to marry. And she does want to marry, but she also knows that no man will want to marry an HIV-positive woman unless he himself is infected. But she does not want an HIV-positive husband. She knows that the virus is diabolical, that you can be reinfected with an even more pernicious strain by having unprotected sex with another affected person. But she also knows that her chances of finding a partner who is not positive are slim if she hopes to be honest with her lovers. Her voice grows ever softer as she speaks about the options facing her. “The ones who are not positive, they won’t walk with me in the public.” Her eyes drop to the desk, then she looks at me and says, “So I just stay by myself.”

But Annesha did not stay by herself. Indeed, a scandal emerged in early 2007 when Annesha became pregnant—at the very time she was going into schools to talk about abstinence and gracing brochures over the tagline, I use a condom every time. Annesha insists that the pregnancy was the result of a defective condom—that, if anything, she’s the one who has the right to be angry, betrayed by her own message—but the ministry didn’t believe her and could no longer afford to have her in public. “They just don’t buy it,” she says. “They believe I was practicing unprotected sex.” She was removed from the program, no longer allowed to visit schools or teach pregnant women the importance of HIV testing for the protection of the child.

Annesha insists, however, that it is not the health hazard that worried the government in her case; today, with AZT and other drugs, it is possible to prevent the transmission of HIV from mother to child. What concerned the ministry was the possibility of angering funding sources, most of them American, which demand that abstinence and Christian principles of monogamy be taught as a condition of making antiretrovirals freely available. None of the married abstinence counselors were barred from having children, she says; had she been married to her partner, the issue would not have come up.

Not long after, Annesha miscarried, and she and the father of her lost child parted ways, but her place as the public face of HIV/AIDS awareness has been permanently tarnished. Now, whenever she addresses audiences, she always gets the same questions: Are you still having unprotected sex? Are you infecting other people with the disease?

Annesha tells me later that the few people whom she has dated recently she met through her support group in Kingston. One, in fact, was Glendon. The relationship didn’t last, but during some of her more difficult times, they were a couple. This pattern of relationships forming within support groups is common and helps avoid some of the stigma and uncertainty of dating with HIV. Glendon, for one, continued dating women from his support groups, and after he began working for the organization in Portmore, he met Renesha. They now plan to marry.

When I first met Glendon several weeks ago, he talked about how grateful he was for Renesha, how he wanted to build a home and a future with her. But life with the virus is rarely easy. Renesha is not on antiretroviral drugs, because her body has been able to sustain crucial T-cell counts without them. Glendon, on the other hand, must maintain the drug regime, and he insists on safe sex, so he won’t infect Renesha with his strain of the virus. But now, he says, Renesha wants to get pregnant. He worries, because his drugs increase the chances of birth defects. Doctors could switch his medication and put Renesha on AZT to prevent her from passing the virus to the child. But who knows what might happen? And they already have two children to care for—Glendon’s nine-year-old daughter and Renesha’s child.

Tonight, at a support group meeting in Portmore, Renesha teases Glendon scandalously—and hilariously. She complains good-naturedly that she just is not getting enough sexual attention from him because he works so hard at the Jamaica AIDS Support office in Kingston. It’s an amazing run of jokes that casts his AIDS work as his true love, one that demands all his attention and leaves him completely fatigued at night, so much so that he cannot perform his husbandly duties. Glendon grins and claps his hands. Someone asks her how often she is getting it. She laughs and says, “Only three nights a week.” A hoot goes up. “That is not enough?” Renesha looks at the group in disbelief. “If I could get it every night, that would be good.” She then tells a ribald tale of having to have her way with a sleeping Glendon, complete with the putting on of the condom. “All now, Glendon still asleep.” The laughter is cathartic in the room. Some of the men slap Glendon on his back, congratulating him on a good woman. He promises to try harder. Then Renesha addresses the question that everyone has been answering. What did she feel about sex after her diagnosis? She stands now, looks around the room, and cracks a smile. “If this don’t work out with Glendon, den me done with man,” she says. She pauses for effect. “I going lesbian if it don’t work out.” Broad, extended laughter. “I am serious,” she says, laughing. “Serious.” But the bitter reality behind the joke is that survival for most women here is impossible without a man, any man.

Annesha stands with neighbors outside her home.

When I first see Sherene, I can’t help wondering why a teenaged girl is hanging around the clinic on a Saturday afternoon. She is slim, compact, and wears an extremely short denim skirt and a red wool halter-top but seems youthfully uncertain about her body. Her dark shoulders gleam with a hint of sweat from walking to the clinic, though her light makeup is still intact. When she speaks, she announces that she has been in the support group for five years and that she had been living with the virus for six. She tells the story of her three children—the eldest, now eleven, living with her father in Kingston—and the struggle to raise and feed the other two. I’ve misjudged her age completely. She is not at all the child I thought she was, and, as if to show it, she concludes with a stern smile and the jaded declaration that she will have no more to do with men. Men are a distraction and a waste of time, she says. When some members of the group appear to laugh at her, her smile fades, and she repeats, “Them not worth it.” But the chuckling continues.

Later, I talk with Winsome Keane-Dawes, an attractive and jovial, middle-aged parish programs officer for the HIV prevention and control program in St. Catherine. She tells me that, until fairly recently, Sherene had been with a man named Lascelles, the singing charmer of the support group. I had seen Lascelles open the meeting that night with a song. A slim man with a shaven head and soft eyes, dressed in olive green gabardine trousers and a matching tailored shirt that fell with cool looseness around his slim body, he was an arresting presence, but I had only half expected him to be a good singer. I could not have anticipated the performance he gave. He could really sing—in a high tenor that slipped comfortably into a falsetto. Lascelles had expressed deep depression, suicidal thoughts, so profound was his feeling of abandonment by a woman who had left him after an argument.

Sherene at her home in Spanish Town, one of the many ghettos and shantytowns that surround Kingston.

Keane-Dawes explains that Lascelles for a time was living with two of the women from the support group, one of them Sherene, and they were both caring for him and treating him like a king. When they came to meetings, the two women would fix plates for him and get him drinks. “He used to beat them,” Keane-Dawes tells me with a knowing look. “And he has probably been beating this one, too.” When Sherene looked directly at Lascelles and said that men were no good, a waste of time, the group was not laughing at her but at Lascelles, at seeing him get his public comeuppance. There is nothing judgmental or bitter in Keane-Dawes’s tone as she explains this to me. She talks about Lascelles as she would a son, with a great deal of affection, admiration for his singing, but an assured clarity that she won’t allow him to think he can do whatever he wants. Later, I hear her confronting him about some of his slipups—and he smiles like a boy caught in naughtiness. There is something beautiful about this, the way a family corrects itself—through humor, through the curbing force of shame, and through full candor. No one can put on airs here. No one has anything to hide. They share a disease that has leveled the field for each of them, and it is strangely moving to watch.

When I catch Lascelles alone, we talk about his singing and about some avenues he could look into. He tells me that as down as he feels, he knows he will find a way. I watch his lithe body slanting to the assured bop of a Jamaican bad man as he leaves the clinic, head held high, a slightly too slim tough guy. I wonder: is he going home to domestic emptiness, or is he going out to find another woman? Without the disease, a man like this would be a king of his community, suitor to many women. It is hard to tell whether he is still aspiring to that status, that power. Keane-Dawes warned me, right in front of Lascelles, not to be fooled by him, that he has always been a hustler, and HIV does not change that; it just makes hustling a little harder.

Lascelles sings church hymns by the river in Spanish Town.

Some five hours away on winding roads, northward over the chain of mountains that cuts across the middle of the island, then west along the coast, littered with high-rise hotels and scattered roadside shops, I come to Montego Bay, Jamaica’s second largest city, on the other side of the island. Here, at the office of Jamaica AIDS Support for Life (JASL), I meet two HIV-positive women who were willing to talk about their lives and their work in the sex sector (though they asked me not to use their names). The women are friends. The older and more worn-looking woman is lighter skinned. She walks with a slight limp and does not move like someone who must sell her body for a living. Her friend is younger, a strikingly dark woman with a round, expressive face framed by thin lines of short locks. She frequently scowls then breaks into laughter. At one point as we speak, she leans back and looks directly at me, “Don’t I look young, sah? Tell me, don’t I look young.” And when I say she does, she smiles and leans forward and rubs my thigh. “Exactly.”

There is a pecking order within the prostitution business, and these women are at the lower end. They do not work through a club or for a pimp. They’ve spent most of their adult years working a single street in Montego Bay with only neighborhood friends to protect them. All they have is a spot on the corner where they wait for men to come by. If the men can afford it, they find an hourly hotel. Most of the time, they use the bushes on the side of the road or the client’s car. After, they hurry back to the street for the next client. At home, at night, there are children to raise and—considering, they say, how they make their living—no men to help them. They need food and medication and, therefore, money. They come to the JASL office regularly for support, checkups, condoms, and sometimes meals.

Men walk the streets of Spanish Town.

When I ask about their HIV status, they grow resigned and practical. I try to tease out the tragic moment when they learned their fate, but they reveal nothing. That moment was just another in a long list of obstacles, of hard luck, of tragedies. “Life is like dat, you hear?” the younger one says. I ask if they considered quitting the streets when they knew they had the disease. “And do what?” the older woman asks. Antiretroviral drugs had given them a lease on their looks, their jobs, their lives. But it did not give them independence or new options. It may be regrettable that they spread the disease when they have unprotected sex, but men will pay more money to go without a condom, they explain—an offer hard for them to refuse. Even when a man puts on a condom, it’s no guarantee it will be used. Some men will use their nails to break the condom before penetration, so it will split and allow him to enjoy “bareback” sex without the extra cost.

The JASL office has recruited the two women to talk with other prostitutes about trying to stay safe while having sex. JASL’s policy toward the sex workers differs from—and seems more effective than—some of the official HIV/AIDS policies in Jamaica, which tend to focus on family values and abstinence. Of course, informally, most of the contact investigators and counselors who work on the streets of Jamaica project a quiet pragmatism. Without an alternative work for these women, they know they can’t tell them to stop having sex; they can only provide them with information and accept that it is far better to expend energy trying to keep these women safe. This has always been the philosophy of JASL.

However, JASL can learn a great deal about the spread of the disease, as the women are often the most open articulators of the pragmatics of sex with HIV and, as a result of frequent testing, the most reliable source of data on HIV transmission. Because of that data, JASL views the sex workers as a relatively predictable group that can be reached and convinced of the wisdom of safe sex practice. The successes may be small, but slowly JASL’s work is opening eyes, changing attitudes, maybe even saving a few lives.

Given this progress, I ask the two women if they ever tell their customers that they are HIV-positive. They laugh; if the men knew, the men would kill them, they say. Once, the younger woman says, she had asked a client, “Then suppose I have AIDS, you woulda want that?” He insisted he did not care, and so, she says, men will do what they want to do. Some are good, they say, but most men are mean, violent, and happy to demand unprotected sex from prostitutes. The young woman asks if I thought a good man would want to be with a practicing prostitute who is HIV-positive. The question is not rhetorical. She looks at me awaiting an answer—or some solution. When I give up with a shrug, they smile wryly, as if to say, “Now you understand.” The women do not lose much sleep worrying about the rough customers they may have infected. These men deserve what comes to them; this is how the women see it.

Pregnant women wait for care in the St. Jago Park Health Centre.

John Marzouca is a large, slumping man of Palestinian ancestry, who speaks in a swaying rural middle-class patois. He is co-director—along with two nuns, one from the Philippines, one from the US—of the Hope Hospice, a clutch of bungalows tucked into the green side of a hill in the suburbs of Montego Bay. We are sitting on the wide veranda that runs along the entire side of the white-walled building where the hospice patients live. From here, you look downhill to the winding road and the houses in this residential neighborhood—an unlikely spot for a public building. From below, it is impossible to see or even guess what might lie beyond the narrow, unmarked gateway.

But Hope Hospice needs no sign. Opened in 1997 with just twelve beds, it was the brainchild of a Bishop Bishar who had moved to Montego Bay the year before, with a desire to care for the needy and the sick. John has worked there from the beginning and witnessed its steady expansion—a new building, additions on the original building. For years patients were referred by the hospital or taken there by the police, but now the hospice is so well known in the community that most patients find their own way here. John smiles with a contented resignation at this strange local celebrity and sheepishly admits that he will likely continue to work at the hospice. The years here, the people he has known, have left a deep impression on him.

While we are talking, a slow procession of patients walks past. They file by, limping, pushing the wheelchairs of those who cannot walk, most in some form of nightclothes. They banter with John as they move down a rough cement ramp that leads to an open lawn, and then they shuffle on to the chapel. Before long, the sounds of a jangling guitar and an accordion drift to us. The songs are familiar. They are choruses I know from my days working as a leader in Jamaica’s student Christian movement. I have sung these very songs at retreats, at rallies, at crusades, and in small groups in gardens and dorm rooms. I have carried these songs inside me. As John speaks, the lyrics swirl around us. It seems fitting. For all his unassuming manner and his ironic sense of humor, John speaks like a man who has arrived at a profoundly spiritual place.

When he began his work here, he says, people died steadily. The hospice was designed as a home for the dying, a place where they could spend their final days. And back then, John saw many deaths, sometimes a dozen people in a week. Yet John seems to have been collecting lives instead of a litany of deaths. He laments forgetting the names of many who came to the hospice and died, but he always remembers something small, something specific and human, even when he cannot conjure up a name. He speaks of the gift he has been given, as people open up to him, allow him into their lives. You can tell he thrives on these moments, as if he is humbled and strengthened by them.

He tells me about the young man, Noel, who had always loved mangoes, but the medication mixed with the acidic fruit made him vomit. Then one day he asked for mangoes. “Hey, bring the mango,” he said, “because if I eat the mango, I die, and if I don’t eat the mango, I die, so bring the mango.”

Then there is a story of an afternoon around Christmas when he was sitting with a young man who was helping him to blow up balloons to decorate the rooms. John got up to make them both coffee, but when he came back to find out if the man wanted milk, the man was dead. John runs a finger across the dampness under his eye and swallows. His voice breaks. “That got to me, you know.”

Or the story of an eleven-year-old girl whose stepfather raped her in retaliation against her mother who he believed had given him the disease. Whether he raped her to purposely infect her or because he believed that awful myth that sex with a virgin would cure him, the girl contracted the disease and came to the hospice to die. “It was a sweet little girl and that was hard to deal with,” John says. He fumbles for words, struggling to maintain his composure. “And, I mean, there have been times when you go to church and try to do what is right and catch up, but everybody was grieving for her and she was so happy. And the funny thing is, it was another one, close to Christmas. She had a level of acceptance that I’d never seen in an eleven-year-old. And this was before the ARVs, so she knew she was dying and she kept saying that she wanted to die on Christmas day.” His eyes are full of tears. “And she did. She passed on Christmas day.” He stops talking for a few seconds.

It hurt, he says, it hurt a lot, but even this he manages to see as a blessing. Had this happened to her five years later, she would still be living—true. But had it happened five years earlier, she would have died alone, without so many people around who cared for her.

I leave Hope Hospice with conflicting emotions. For all his positive outlook, even John fears that HIV/AIDS will soon reach epidemic levels in Jamaica. He knows the stigma still causes people to conceal the virus and infect others, either willfully or through carelessness. He knows that Jamaican men still believe that having multiple sexual partners is not just an acceptable practice but something to be celebrated—almost an entitlement. He knows the youth have seen that antiretroviral drugs are allowing people to live longer, and they are growing complacent. The gothic horror of bodies emaciated, people going blind, suffering constant diarrhea and nausea—the threat of inevitable, painful death made people careful. It is a twisted paradox of antiretroviral medication here that its very success has helped spread the disease.

John understands such contradictions. The name Hope Hospice was once a bitter irony—a place that could offer at most painkillers and beds where people could die with dignity, not a place for hope but for the hopeless. Now, he is happy to say that some people leave and continue with their lives because of antiretroviral drugs. But his optimism is tempered because he also knows that when those former patients return to the poor communities of Montego Bay, far below the slopes of the hospice, many will infect others who, in turn, will need to come here for treatment.

In a further irony, the campaigns to show that there is life after a positive diagnosis—that HIV is not a death sentence—may have been working too well. They are right; there is life with HIV. But many people seem not to understand that life after a positive diagnosis is not easy. Indeed, it is a world in which sickness must be managed constantly, a world in which medications are the tyrants of one’s life. What many seem not to understand is that depression and a desire to die are daily occurrences for people with HIV.

John Marzouca stands in the hallway of Hope Hospice, outside Montego Bay.

Maybe this denial is to be expected. For Jamaicans survival has always been a delicate and necessary art of deflection. We hear about a murder and go through a series of questions. Where was the person killed? The farther away from where we live, the better. Did the person fight back? Because I would never do that. Did the person have a big car the killer may have wanted? Was it the middle of the night? And the list goes on. Eventually, we find a reason why what happened could not happen to us. That’s not me; that could never be me.

A patient’s room at Hope Hospice.

The same has been true for HIV/AIDS. As long as it was seen as a gay disease, heterosexuals could ignore the deaths. It could never happen to them. When news came that heterosexuals were dying as well, we came up with new questions. Did the person frequent prostitutes? Did he have sex abroad, or here with someone foreign? Was he promiscuous? Who exactly did she sleep with? Was it rough sex? Were they somehow perverse? Anything to keep the disease far away, to pretend it could never reach us. But I can no longer live this way. In the months I have spent traveling around the island, this other Jamaica, going to towns I have not visited in years, meeting and listening to countless people, I have made friends—and now I have to accept that HIV/AIDS is a part of my life. I know that in time, I will hear of someone’s passing. I will hear of someone’s succumbing to the illness. I now live with it as a constant presence, not something I can simply deflect. And, fortunately, it has not destroyed the humanity of the people I now call my friends, but rather it taught all of us something about the frailty of human life—and something of our capacity to find hope in the midst of such struggle.

Just before I left Hope Hospice, John told me one last story—one that stays with me. A few years ago, on a Monday morning, he walked into the hospice to find a good friend of his in one of the beds. John had noticed that the friend had been losing weight but did not think much of it, because John assumed that the friend would say something to him—to him of all people—if it had anything to do with HIV/AIDS. But there, on that Monday morning, he found his friend lying in one of the hospice beds, one of his hospice beds. In that moment of shock, John tried to hide, to slip away before his friend could see him. It was too late; he had been seen. So he tried to keep a brave face as he stood at his friend’s bedside, searching for words. For years, he had welcomed people to the hospice, assured them, comforted them, but for the first time, the virus was affecting someone John knew personally.

Eventually, he said, they were able to speak. Eventually, they both found a way to accept the place of this disease in their lives.

Kwame Dawes and Joshua Cogan traveled to Jamaica with assistance from the Pulitzer Center on Crisis Reporting. The center’s grants for AIDS journalism in the Caribbean are supported by the MAC AIDS Fund. To learn more about this project, visit the Pulitzer Center. To see the interactive website, including video documentary material, additional photographs, poems, and original music, visit


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