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

  As with the tikoloshe, his lover sends him to kill those she hates. And if she hates nobody, the impundulu turns on her, and demands the blood of one of her relatives. If she refuses, he kills her. His appetite is never sated. His lover thus becomes a serial killer.

  It takes many months before it sinks into my head that those who speak of the shame of the HIV-positive are a hair’s breadth from speaking of the shame of witches. Like the witch, the HIV-positive woman has a sexual appetite, and, again like the witch, her sexual appetite is murderous. As much as people try to strip AIDS of evil by giving it a strictly biomedical explanation, it nonetheless remains lodged in an old and poisonous well of fear, of suspicion, and of misogyny.

  Kate Marrandi

  It was an astoundingly hot January morning. The bodies were jammed into the clinic waiting room so tight I did not know whether the damp on my forearm was my own or someone else’s. The soft, soapy smell of hundreds of recently washed bodies mingled with the smell of fresh sweat and the smell of sheer heat, and the line in the corridor outside the consulting rooms had long since vanished into a dense mass of people hemmed in by the walls.

  Even here, where the faces were so many they had become interchangeable, she was singular, unmistakable; the promise of death in her face and her body drew you to her like the Hamelin stranger’s pipe.

  She sat there in her wheelchair amid the crowds, her useless neck dropping her head onto her right shoulder. Her eyes were open wide and unblinking as if she had constantly just a second ago received a terrible fright. Her lips were pulled and drawn, exposing her upper teeth and her gums. She wore a bright pink tracksuit several sizes too big, a sore memory of the space she must have filled before she fell ill.

  Two middle-aged women attended to her. The first was using her clinic folder as a fan, flapping it perpetually in front of her dazed face. The second, who wore a wide-brimmed straw hat, had put the woman’s head back upright, and was cupping the back of her neck with her hand.

  The young man who managed the line had noticed her, too; he took the handles of her wheelchair and shouted in a loud voice for the crowds to clear a path to the consulting room at the end of the passage. He wheeled her chair into the crowd, turning it into a makeshift battering ram, opening space where there had been none before.

  I was scheduled to sit in on Hermann Reuter’s consultations that morning. I followed the path the wheelchair had made and slipped into Hermann’s room after it.

  Once the door had closed behind us, the consulting room was disorientingly quiet and empty. In the far corner, a strong fan worked at full throttle. Hermann stood up, walked from behind his desk, found a chair, and sat next to the patient, his eyes level with hers. He put her wrist gently in his hand, and looked at her closely. Then he and the line manager lifted her and put her on the examination bed, holding her neck and her limbs steady; she was so light that one of them could have done the job.

  “Which of you is her mother?” Hermann asked.

  The woman who had used the case history as a fan walked over to him and watched him as he bent over his patient.

  “I am her aunt,” she said. “She can’t talk. She can’t walk. But sometimes she can hear.”

  The niece was in the middle of a course of TB treatment and had been on ARVs for five months. Her case notes recorded that she had been hospitalized twice since the beginning of December. As Hermann examined her, the appearance of shock left her eyes and she drifted off into sleep. I would not have been surprised if she had died there and then.

  Once he was done with the examination, Hermann lifted her off the bed and settled her back in her chair.

  “Don’t leave her aside,” he said. “She must sit with the family. She can hear when you talk. Don’t hide her.”

  “Yes,” the aunt replied. As she spoke she held up her niece’s neck with firm and gentle hands. “She smiles sometimes when you talk, and when she is feeling her strongest, she can say: ‘Hi!’”

  At the word “Hi!” her niece rolled her eyes; her mouth broke into a wide smile and a laugh issued from the back of her face.

  “Do you understand English?” Hermann asked her.

  She grunted affirmatively.

  “Did you work?”

  She replied with a short medley of grunts, but it was impossible to hear the words.

  “She is saying she is a social worker,” her aunt said.

  Hermann put his hand on the back of her head.

  “Your brain has been very, very sick,” he said. “The TB got into your brain and made it very, very sick.”

  “Yesterday, her disability grant started,” her aunt said. “The first grant money arrived and she laughed. It was the first time she had laughed. Her granny started laughing and then I did. We were all laughing.”

  Listening to the story of herself laughing, she laughed again, and we all laughed with her, and she strained for the use of her neck to look up at her aunt. Knowing what she wanted, her aunt bent down into her line of vision.

  “You were laughing yesterday,” she said, “for the first time.”

  It is hard to say how a long story gets to be told in a single gesture, but in that moment it was clear that her aunt had poured many years of love and savings into the growth of her niece, and that now she was harnessing that same love to keep her from slipping away.

  “Are you also a family member?” Hermann asked the woman in the straw hat.

  “No,” she replied, “I am a community health worker.”

  I smiled to myself. Twice in the last two months I had seen this same woman wearing the same hat in Hermann’s consulting room. She had sat quietly, as she did now, looking diligent and interested, and had not said a word. On both occasions he had asked her as she was leaving whether she was a family member and both times she had told him she was a community health worker.

  I asked her her name.

  “I’m Kate Marrandi,” she replied, “from Nomvalo village in Taleni locality.”

  The sick woman had managed to lift her legs and drag her heels to her buttocks. She was preparing for the journey back through the throngs of people outside. Her legs must have been battered on the journey in. Kate Marrandi opened the door, and fragments of noise and heat and smell momentarily joined us.

  When they had gone, I asked Hermann whether he thought she would live.

  “She got TB meningitis while on ARVs,” he said. “Her CD4 count was thirty-nine at the beginning. She was vulnerable to everything.”

  “She came too late,” I said.

  “She is being treated with ARVs and TB drugs,” he replied. “She will get better than this, but she won’t be a social worker again.”

  SIZWE AND I drove to Nomvalo village a week later. I had taken Kate Marrandi’s cell phone number before she left Hermann’s consulting room, phoned her, and asked to see her. I was intrigued by her recurring presence in Hermann’s room, by her fastidious silence, by the doctor’s failure to register her existence.

  Her English was not much better than my Xhosa; the directions lying on the dashboard promised to take us somewhere unexpected.

  Nomvalo is about forty miles from Ithanga, and the roads between them are slow going; Sizwe and I spent the better part of an hour in the car together. In the silences between conversations I began to think about his niece Thandeka’s boyfriend. His previous lover was gravely ill. Thandeka herself had told him that she was HIV-positive. And yet he would not hear of testing. I started thinking aloud. I told Sizwe that I wanted to spend time with him, to get to know him well. I wanted to understand his refusal to test.

  “You say you are talking about Thandeka’s boyfriend,” he said, “but you are also talking about me.”

  “Perhaps. But you know that your lover is negative. He knows his lover is positive.”

  “I want to test,” Sizwe said. “I think it is finally time.”

  I nodded and waited for him to continue. It took a while.

  “I must get to the bottom of
this business in my stomach. You look at me and you think I am well, but I am not well. It has been some five or six years since this problem began. When I wake up in the morning and press my stomach, it is hard and sensitive; it feels like there is some thick liquid inside it. Maybe it is bewitchment, like the sangoma said. But maybe it is HIV. Many HIV-positive people have problems in the stomach. Maybe that is what I have been sitting with. Maybe I am unlucky like Jake.”

  I concentrated on driving, thought of Sizwe’s stomach, and soon felt quite anxious. It was not only the uncertainty concerning the etiology of his complaint, it was also the swaths of territory that lay between symptom and possible cause. The pain in his gut may have been placed there by a terrible anger born more than a generation ago, an anger that had caused an assembly of malicious creatures to inhabit and leave and reinhabit the bodies of his parents and his siblings over a span of decades. Or it may have been sheer chance, as he and Jake blazed a trail of adolescent excitement through the villages of Lusikisiki.

  Either way, it struck me that his understanding of the pain in his stomach was crisply social; the somatic was simply an outcropping under which were layers upon layers of family and neighbors and the world at large. I found the idea deeply unsettling. For at the root of this etiology is that one’s relation to others exposes one to the prospect of extinction.

  “Why now?” I asked. “What has happened recently that has made you ready to test?”

  “I am ready. I know that if I have HIV I will die.”

  “You won’t necessarily die.”

  He turned from me and looked out the window.

  “The umlungus say that if you take ARVs you will live for as long as you would have if you had never gotten sick. But I know a man who was on ARVs a long time, and he got sick, the very sicknesses you get when you are HIV-positive, and he died.”

  I do not know what brought on this tightly packed blow of honesty. But he had just knocked down a wall between us. We were somewhere entirely new.

  “Why do you think the whites are so keen on ARVs?” I asked.

  He responded with an uncomfortable silence. He shifted in his seat, glanced at me briefly, and then stared out the window again.

  “I think the umlungus want to help people.”

  There was another silence, this one much briefer.

  “Do you think there is a cure for AIDS?” he asked.

  “No.”

  “Some people believe that the whites have developed a cure for AIDS, but that they are holding it back. They are waiting for enough black people to die so that when we all vote in an election the whites will win and F. W. de Klerk will be the president again.”

  I laughed, and his eyes widened with anger.

  “I am not telling you a joke. I am telling you what many people believe,” Sizwe said.

  He looked down at his chest and cocked his head away from me, as if to erase the entire discussion.

  “I have told you a black people’s secret. I am sorry I have told you that.”

  He picked up the map on the dashboard, studied it, and put it back again.

  “I think you have missed the turnoff to Nomvalo.”

  I HAD MISSED the turnoff because one would never have taken it for the entrance to a village. It was an impossibly steep ramp, its gradient perhaps forty degrees, its surface a raw and grainy concrete. From the roadside, it appeared to last only a few dozen yards, leading, perhaps, to a rubbish dump.

  And yet we climbed and climbed, and it did not end, and some way up we passed the extraordinary sight of a span of eight oxen harnessed to an enormous bundle of firewood. As the beasts became small in my rearview mirror, the road flattened without warning and we found ourselves in Nomvalo village, a scattered hamlet of round mud huts and square brick houses dispersed across the length and breadth of a broad plateau.

  Just as one cannot fathom the presence of a village from the tar road, so one does not get the sense up here that one is at the top of a mountain; from horizon to horizon there is nothing to suggest that the rest of the world is some distance below. It struck me then more forcefully than at any other time that the Transkei is arranged vertically; that unless you recalibrate the sense of dimension coded into your mind you will not find your way about.

  As we gathered our bearings, I spotted the distinctive figure of Kate Marrandi in her enormous hat, standing in the middle distance at the side of the road. We pulled up beside her and she got into the backseat and directed us to her house along a rutted and torn-up dirt path. Sizwe introduced himself with his customary warmth and politeness, announcing his first name, his village, his surname, and his clan name. He had not been at the clinic the week before when Hermann examined the young woman in the pink tracksuit.

  MaMarrandi’s home was that of a poor person. It was made of mud and concrete, and poorly made at that, the far wall of her living room leaning outward, the near wall leaning in, the ceiling slanting toward us. Outside, a few paces from the front door, three piglets guzzled from a trough, their noise filling the room.

  MaMarrandi took off her hat to reveal a head of brilliant gray hair. It struck me that she was older than I had imagined back in Hermann’s consulting room, sixty at least.

  She was not from these parts, she told me; she was Zulu, born in Glencoe in the KwaZulu-Natal midlands. Her father was a devout Jehovah’s Witness who read Bible stories to her and her siblings every evening from as early as she could remember, and when she was not yet out of her teens she married a religious man.

  In the early 1960s, her church sent her and her husband away to proselytize. They did so with extraordinary diligence, traveling the length of South Africa’s eastern seaboard without pause for almost a decade, preaching the word of the Jehovah’s Witnesses. Not once did the church pay them for their work. For a living, MaMarrandi found a string of part-time jobs, primarily teaching illiterate adults to read and write.

  By the early 1970s the couple had two children. During the course of the next decade they were to have three more.

  “We arrived in this area in 1971,” MaMarrandi told us, “and we decided to stop here to educate our children. By 2002 the last-born had passed standard ten [twelfth grade]. We had been in this place thirty-one years and the last of our children was educated. The family at home was getting finished. Only the mother of my husband was at home. She needed someone to look after her. So my husband and children went back to my husband’s hometown of Matatiele. I was meant to return with them, but I stayed. There was work for me to do here. I had been involved with AIDS, the work was becoming promising for the first time, and I could not leave.”

  “Please start at the beginning,” I said. “Do you remember your first experiences of AIDS here in Nomvalo?”

  “Yes, I remember well. The first cases were in 1996. People working in the mines came back seriously ill. We took them to the doctors in the main street and at the hospital. The doctors would say: ‘These people are HIV-positive. We cannot help them. You must take them home and treat them with herbs.’

  “I remember a girl from Durban. The people in Durban put her on a bus to Nomvalo. When she arrived at Nomvalo station, the people were told they must not touch this girl: she has AIDS. Once you touch someone with AIDS, it is transmitted to you. So they did not touch her. They used blankets to hold her, as if she was a corpse, but she was still alive. They put her in a wheelbarrow and took her home.

  “There, she stayed alone. She was in her own hut, and people only came in to give her food. After she died, they dug a grave and they carried her to her grave on her mattress so that they would not have to touch her body. They buried her mattress with her.”

  She continued without pause: “It was a very difficult time. We believed the disease to be very infectious, and we could not see who was HIV-positive. We could only see once someone was getting sick. Even when the girls gave birth, we didn’t have gloves; we helped the girls give birth with our bare hands.

  “It was only in 1999 that we
started to learn about the disease. Nurses from the hospital came and told us about how the disease only lives in the sexual fluids and in the blood, and not on the skin or in the breath. And people on the radio began explaining. That was also in 1999.”

  “What were you doing at the time?” I asked. “Were you a community health-care worker yet?”

  “I was not working at the time. I was only preaching the Word of God with my husband. But I felt I must get involved. Once the information started coming in, I felt I must go somewhere to get educated about this, and then come back to help.”

  At about this time, the national government was beginning a policy reversal that was to shape the next era of MaMarrandi’s working life. In the 1980s, the South African countryside had been littered with lay health workers trained in a range of fields from midwifery to TB care. When the African National Congress came to power in 1994 the idea of lay health workers fell out of favor. Now, in 1999, as hospitals were getting their first inkling of the horrific burden the great epidemic would place at their door, the idea of lay workers dispersed throughout towns and villages came back into fashion. By late 2003, the national health department would be investing large sums in the recruitment of community health workers across the country, and was soon paying a stipend of five hundred rand per month to some twenty thousand lay workers.

  Some criticized it as a measure to keep the sick and the dying invisible and away from the hospitals. Others pointed out that as sickness spread into each village, treatment would be impossible to administer if the health system did not have conveyers of information and knowledge everywhere.

  Among the organizations that began training community health-care workers in the late 1990s was the Hospice Association of South Africa. In mid-1999, Marrandi reported to a hospice in Port Shepstone and was recruited into a three-month training course.

  “We learned many things there,” she said, “including what was happening in the hospitals. When we visited the hospital wards we were not allowed to even whisper the word AIDS. The doctors tried to keep it a secret from the nurses because it was feared that if they knew they would not treat the patients. But the nurses knew, and they themselves were trying to keep it a secret from the patients.