Sizwe's Test: A Young Man's Journey Through Africa's AIDS Epidemic

by Jonny Steinberg

  ON A MORNING some two weeks after testing day, Sizwe and I sat on a bench in the corner of MaMarrandi’s living room. Opposite us sat five women. All had been on antiretroviral treatment for various lengths of time. Among them was Nosiviwe, the woman we had met carrying water from the river, with flaming sores on her face and nobody to accompany her to the clinic. Now her face was clear and smooth, her body once more that of a woman. The sight of her was truly startling. We had last seen her only five weeks ago.

  “You look wonderful,” Sizwe said, beaming with amazement and with pleasure. “You look so healthy I can hardly believe it is you.”

  She smiled and played with her hands.

  “I am feeling okay,” she mumbled with embarrassment.

  “Who did you find to accompany you to the clinic?”

  “My neighbor. I have been on the pills four weeks.”

  This morning she was to take her place as MaMarrandi’s most precious asset. For we were here to attend the first support group meeting, where those who had just tested positive would talk to those on treatment, and if there was ever proof that MaMarrandi’s pills could raise the dying it was Nosiviwe. She was one of those fortunate patients for whom the pills work almost immediately with neither side effects nor any of the infections triggered by the rebuilding of the immune system.

  We sat and chatted and looked at our watches. The meeting was meant to have begun at nine and it was now after ten-thirty. Every woman who had tested HIV-positive two weeks earlier had been invited, but none had showed up.

  “It is the weather,” MaMarrandi said impassively, staring out of her open front door. “When it looks like it is going to rain, people stay in bed until lunchtime.”

  It was not the weather. It was something else, something far more substantial. Where the story begins depends on to whom one speaks. I like to think it starts with the two girls who attend one of Nomvalo’s Zionist churches.

  MaMarrandi had told us the story earlier.

  “The first of these girls,” she began, “went to test on the day the nurse came. She tested positive. She was shocked. She was very upset. She went straight to the house of her best friend and told her what had happened. So this second girl, she also went to test, and she also tested positive.

  “Here were these two girls now, both very shaken, thinking about what they must do. They came to me. They said: ‘Ma, you brought this test here, and we have tested positive, so tell us now what to do.’

  “Now, Sister Sicwebu only had the means to test for HIV. She could not test people’s CD4 count. But we had checked with Ntafufu, the nearest clinic, and they confirmed they were able to take blood for the CD4 count. So I advised the girls to go to Ntafufu clinic and ask the nurses there to take their blood. ‘And then we will take it from there,’ I told them, ‘because that count will tell us how to plan.’

  “The following day, they came back to me, and they said, ‘Ma, the nurse at Ntafufu sent us away. She said she does not deal with AIDS. She said we must go to Lusikisiki because they deal with AIDS there.’

  “I was angry with the Ntafufu people because they had gone back on their word. I was forced now to send these two girls to Saint Elizabeth’s Hospital in Lusikisiki. But I made a mistake. I gave instructions in English. I said ‘CD4 count,’ whereas I should have told them in Xhosa. I should have said ‘bala amajoni’—‘count your body’s soldiers.’

  “They went to the hospital and by the time they got there they had forgotten these words ‘CD4 count,’ so all they said to the nurses was, ‘We tested HIV-positive in Nomvalo; the community health worker there said we must come here.’ And the nurse said to them, ‘You must go home and not come back until you get sick.’

  “So now the two girls came back from the hospital empty-handed. They were very confused. They went to their church to share with their prophet what had happened to them. And at the church they were told that if they pray they will get better. God will make them better, not pills. That was when they began to deny that they were HIV-positive. They started to visit this one”—she pointed to Nosiviwe—“and told her that she must stop taking ARVs and come and pray.”

  Nosiviwe looked up from her hands for the first time. “I told them that if they want to pray they must pray,” she said quietly. “But my pills are helping me.”

  The woman next to her thumped her fist on the table. “They say Jesus Christ is the one who will help you,” she shouted. Her voice was like a battering ram crushing the very idea of the poor Zionist girls. “You must tell them to go to their Jesus and leave us with our pills, because we are going well on them.”

  When I told Hermann what had happened to the two Zionist girls he smiled at me laconically.

  “Do you understand that this is a classic symptom of understaffing?” he asked. “It’s a variant of a very old story. Ntafufu clinic is, I don’t know, maybe 60 percent understaffed. They’ve just made available a new service, CD4 counts. When an understaffed clinic has a new service, they get scared. They worry about overwork. And so when people ask for the new service, they say no, go to Lusikisiki. And at Lusikisiki, maybe they were unfortunate enough to find a nurse who was also too overworked and thought no, I am tired of attending to patients from the Port Saint Johns area. They must go to their own hospital.

  “Once people have visited a health-care institution and have been turned away, they don’t come back. The local institution that was best staffed and most receptive to Kate’s two girls was the Zionist church, so that’s where they stayed.”

  He is right: Kate had been forced to send her new and vulnerable charges into the health-care system like messages in a bottle tossed into the ocean.

  Whether precipitated by the two Zionist girls I am not sure, but shortly after they began to voice dissent, others who had tested positive in mid-April started to register protests of their own. Rumors that had circulated through Lusikisiki’s villages at the start of the treatment program now came to Nomvalo.

  “Some of them are now claiming that the drugs are very dangerous,” a woman who had not spoken previously said. “They say that the big oval pill, the one that is shaped like a rugby ball and is hard to swallow, that one will make you give birth to a deformed baby. The baby will come out the same shape as the pill, without arms or legs. And they say that the pill that is a little red-and-white capsule with the powder inside, that one will make you mad. And the third pill, I forget now which one, they say it gives you epilepsy.”

  The inversion is cruel. In the ARV support groups, each pill is handled and named and nicknamed, the side effects associated with it learned by heart. The coupling of detailed knowledge with familiarity is meant to strip the veils of mystery off the drugs, giving their users a measure of mastery over them. Here, the idea of individuating the pills is mimicked, but only to underscore their treachery.

  “What exactly do people say?” I asked the woman who had spoken. “Many people believe that epilepsy and madness and deformed babies are caused by demons. Do they believe there are demons in the pills?”

  “They do not put it like that,” she replied. “They are scared. Some people have bad dreams when they start with ARVs and people hear that. Other people have such a low CD4 count that they die soon after they start ARVs. People see that. They are scared.”

  “But you are right to talk about demons,” the last woman who had yet to speak finally said. “Because some of these girls who tested positive last month do not believe us. They believe we are mixing our ARVs with traditional medicines. They do not believe that ARVs can stand alone and make you survive.”

  “What does that have to do with witchcraft?” I asked.

  “They are saying that there are two ways to get AIDS. One is through sex. The other is through people, people who hate you. They say that with this much AIDS, it can’t just be sex. They say that if it was sex, so many people would not have tested positive last month. They say that people have learned to make AIDS.”

  “How do they
give it you?”

  “While you are sleeping, their demons come holding a syringe and they inject you. You are sleeping deeply. You do not even know that it has happened.”

  “And why do they think you would lie? Why would you hide that you are taking traditional medicines?” I asked.

  “I don’t know. But there is medication that is being advertised on the radio. It is called Magwagota. You can buy it from the chemist for 245 rand. People say that can cure both kinds of AIDS: AIDS from sex, and AIDS from the demon’s injection.”

  “As well as AIDS from the makwerekwere,” added the woman with the battering-ram voice.

  “What is that?” I asked with exasperation.

  “A few months ago,” MaMarrandi said, “a nurse from the hospital was caught stealing a baby. When they interrogated her, she admitted that she was selling the baby to a makwerekwere sangoma. They say he was using parts of the baby, its arm, maybe parts of its face, to make AIDS.”

  “Where did you hear about the nurse stealing the baby?” I asked.

  It was Sizwe who answered. “Everyone has heard it,” he said. “Even in Ithanga we have heard it.”

  “Do you believe that the foreign sangoma is making AIDS?” I asked MaMarrandi.

  “I don’t believe they can make AIDS,” she replied. “I believe they can do the things they advertise on their pamphlets. They can help you find things you have lost, they can help you be successful with money, to make your case go well at court. But not AIDS.”

  I was reminded of my conversation with Sizwe some months earlier about the witchcraft that had beset his family. It could explain his father’s waywardness, his sister’s nomadic drifting, and it could account for his stomach ulcer: but not AIDS. A line had to be drawn. The meaning of an epidemic that killed the young had to be narrowed.

  And so it was now with MaMarrandi. Testing day, it seems, had detonated an explosion in the center of Nomvalo. Never before had the virus been so public, so very much on the surface of the world, so clearly attached to so many villagers. In the wake of this shock, the meaning of AIDS had shattered in all directions like shrapnel from a blast. Every fear that had ever been whispered came out onto the village paths. Demons with their injections, ARVs and their toxins, foreign sangomas and their dead babies: each splinter scratched out its own tale, but all bore the same warning—evil intention. Whether neighbors or foreigners or the invisible manufacturers of drugs, the intention was to kill. It was as if, in the wake of testing day, Nomvalo had awoken to an epidemic of murder.

  MaMarrandi’s task was to gather together the splinters, to clean up the surplus of thoughts and fears, to restore to the virus a simple and coherent meaning. Yet the meaning she gives to AIDS cannot take the form of a well-told story or a crisp definition: it comes alive only through a medical process. A clinic whose nurses accept patients who come to get their blood tested; a doctor who visits weekly; two full-time adherence counselors who shepherd the ill onto treatment—these are the tools that carve out MaMarrandi’s definition of AIDS. A long twenty miles separated her from these things. She was trying to stand in for an institution.

  “It was these crazy muthis that killed Vuli,” the loud-voiced woman barked. “That crazy prophet and her muthis.”

  “Vuli is dead?”

  “When you met him he was waiting for his results,” MaMarrandi said calmly. “He got them two days after you saw him. His CD4 count was 230.”

  “Why did he die with a count of 230?” I asked. “He did not look very sick when we saw him.”

  “He was staying alone. I was always advising him to go to his stepmother’s family and stay with them. He was stubborn. He said no, he would cook for himself. He didn’t eat well. And as a man, he was drinking very heavily.”

  She sighed, got up from her chair, and reached for her straw hat, which was hanging from a nail on the wall.

  “Perhaps we should go to the church people,” she said. I had suggested earlier that we visit the leaders of the church who had told the two Zionist girls to pray.

  “How did you feel when Vuli died?” I asked, once we were out on the paths. “Angry? Depressed? Responsible?”

  “I feel sorry. Above all, I feel sorry. I went to his stepmother to tell the family to convince him to stay with them. He was stubborn. He wanted to stay alone. I went as often as I could to help him, but like I told you last time, I am a woman and it is difficult to help a man living alone. People will call me names. I needed a woman to assist me.

  “Now one of the prophets in this village came and gave him some special water to inject inside him with an enema. His stomach swelled. People put him in a wheelbarrow and took him to his stepmother. When he arrived there, his stomach started running terribly. He died that same day.”

  WE COULD NOT find the Zionist church people. I asked to see the two girls who had told Nosiviwe to forget her pills and pray, and we could not find them, either. I arranged to come back the following day. Still, they were not available; the church people had gone to another village for a meeting, the girls were in town. Could we visit one of the others, one of those who had spoken about the pills deforming babies? We looked but could not find them.

  I thought of coming back another day and finding them myself, without MaMarrandi. I hesitated. It would constitute a betrayal. She did not want us to speak to those who scorned her work. It would seem like talking about her behind her back.

  I WONDER HOW things will go in Nomvalo over the coming months and years. For now, those whose HIV-positive status is public knowledge are divided into two groups. The first have AIDS and are on ARV treatment. The second are asymptomatic, and most have, for the moment, denounced ARV treatment. As for the rest of the village, they are not sure. They will watch both groups keenly. They will observe who lives and who falls ill and dies. The outed are the unfortunate subjects of an empirical experiment.

  If this is so, if an uncertain village is watching closely in order to learn, what will it see? I don’t think the answer is all that simple. On the one hand, there is Nosiviwe. Five weeks earlier she had carried her looming death in the shape of her hips and on the surface of her skin. Her body had reclaimed its health so fast its progress could be observed by the day. But is Nosiviwe representative of the aggregate evidence? The ones who tested in mid-April are asymptomatic. Many will not fall ill for years to come. The ones on ARVs have AIDS. They are on a long and fitful journey of recovery. Sometimes their drugs will make them ill. Sometimes their drugs will fail to prevent them from getting TB and pneumonia. They are far more likely to get sick in the next year or two than the ones who tested positive in mid-April. The village will be watching for evidence, but the evidence will probably lie.

  I wonder, also, how much that matters. It is one thing taking a position on AIDS when watching others from a distance; the gallery has never been a thoughtful or generous place. Falling ill oneself is another matter entirely; there is nothing like the emergency of one’s own failing health to expel dogma and invite openness. MaMarrandi will still be there looking out for the sick. She will knock on their doors, and sit in their living rooms with her reading glasses on the end of her nose and her hard-backed ledger on her lap. And she will offer to accompany them to the clinic. How many will say no? Those who are uncertain are prone to experiment. Many will go with her, no matter what they are saying now. They will be examined by nurses, their opportunistic infections will be treated, and they will be invited into a forum of HIV-positive people.

  Perhaps AIDS in Nomvalo will remain in its current twilight, neither public nor private, many people on drugs, their relation to their treatment mediated through one woman.

  WE VISITED KATE Marrandi again in July to discover that her support group had struck upon another problem. At around the time she had been preparing for testing day, she recruited a Nomvalo woman to help with her community health work. Her name was Vuyokazi. She was in her early forties. She had lived in Nomvalo her entire life.

  A few minutes
after Vuyokazi walked into her first support group meeting, which consisted of the five people we had met in MaMarrandi’s house on our previous visit, a woman put up her hand and objected to the new health worker’s presence. A second woman endorsed her sentiments, and then a third.

  “The problem,” MaMarrandi explained, “is that they are sick and Vuyokazi isn’t. She grew up in this community and she used to chase the same men as these women. They don’t trust her with such a sensitive thing as AIDS. They are worried that she will use her knowledge of their illness as a weapon against them. They think maybe she will go around disgracing them.”

  I thought immediately of the time, some while back now, when Sizwe had shared with me his fears of Simlindile, of the many pairs of eyes that watched him prosper, of what might become of his business if it were known in Ithanga that he was HIV-positive. To those who have it, the virus, it seems, places a magic flute in the mouth of its victim, drawing all the people in his past who have ever resented him.

  I thought also of MaMarrandi herself: she is able to play the role that she does because she has emptied herself of meaning. She is elderly and unimplicated and did not come of age in this village. She has envied no one, competed with no one: she arrived here fully formed. To do her work, she must guard her blankness with vigilance. She must never, for instance, close the door behind her in the home of a man who lives alone.

  MAMARRANDI TOOK US to a patient we had not met before, a teenage girl who lives with her mother and infant child in a hut at the summit of a steep hill.

  She fell pregnant last year and reported to a clinic, where she tested HIV-positive. She was ill with TB and put straight onto treatment. Her son, who is three or four months old, tested negative.