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

by Jonny Steinberg

  I had not been mortally ill when I visited Dr. Rutland. Nor had the question of my children’s future been at stake. My experience was a far cry from Leonard’s. Nonetheless, as the day progressed, Dr. Rutland’s presence in my mind grew larger and larger, such that I could not think of MaMarrandi’s work without thinking of him. Perhaps this is a little too speculative, based as it is on one fleeting observation of Leonard and MaMarrandi together, but it seemed that she stood in the space between him and his pills and gave them their meaning. It was almost as if she took the pills first, chewed them thoroughly, spat them out, and then gave them to him. By the time he had swallowed them, which bit was antiretroviral and which bit MaMarrandi had become indistinguishable. She was the affirmation of the idea that there is a daily regimen that keeps one alive, keeps one’s children from becoming orphans.

  And if this was so, what accounted for the difference between Vuli and Leonard? The one, surly and lonely and stubbornly entrenched in his loneliness, could not wait to eject MaMarrandi from his house. The other, surrounded by the children he had almost lost, and a brother and sister-in-law who had witnessed his resurrection from his deathbed, embraced MaMarrandi with all the force of his desire to remain alive.

  Perhaps it is as simple as that. In desiring to remain alive, one surrenders to the fact of one’s dependency on others: on one’s children to be a father, on one’s brother to be a sibling, on one’s pills, and the one who has brought the pills, to remain all of these things. Perhaps Leonard’s attachment to MaMarrandi was no more than an expression of his will to live.

  Which makes the glimpse we saw of Vuli’s bunkered-down life an unpleasant portent.

  WITH THESE THOUGHTS fresh and incoherent in my mind, we arrived in the midafternoon at our final appointment for the day, a large compound of several mud rondavels and square brick structures. They formed one long line stretching across the length of the property, leaving me with the incongruous feeling that we had entered the grounds of a school. MaMarrandi told us that a famous chief once lived here, and that the person we were coming to see was his granddaughter.

  “Who was the chief?” Sizwe asked.

  “Konkhotha.”

  Sizwe raised his eyebrows. “He was very famous. He was one of those chiefs the other chiefs came to when it was not clear how to settle a matter. In my grandfather’s time, people in Ithanga would walk two days to come and see him. Even my grandfather came to see him once. Maybe he stayed in one of these rooms.”

  The old chief’s granddaughter came out to greet us. She introduced herself as Thobeka and shook our hands firmly. She was in her early thirties, I guessed, and like the first person we had visited in the morning, her face was marked with the raw scars of a skin disease. She brought out a broad mat from one of the rondavels and we sat under the shade of an old pin oak, a strange tree to find in these parts, since it is doubtful that a white family has ever lived in Nomvalo.

  Thobeka reminded me that we had met in Hermann’s consulting room some months earlier. She had come with her brother. Both siblings had contracted TB some time earlier, Thobeka while living in Durban, her brother here. MaMarrandi had knocked on the door of the two sick siblings, and had taken them to Hermann. Both discovered that they were HIV-positive. Thobeka’s CD4 count was 120. Her brother’s was next to nothing.

  “My brother passed away,” Thobeka said quietly.

  As she said this, I noticed for the first time that the grand compound in which we sat was hushed and almost entirely empty. Whether it was the backdrop against which she spoke or merely the fright in her voice, it seemed, as she mentioned her dead brother, that she was expressing more than mourning and grief; her tone seemed to express a terrible vulnerability that had to do with the emptiness of this place.

  In cue with my thoughts, a very old woman emerged from one of the houses and made her way toward us. She was perhaps as old as Zukiswa’s grandmother, her hips quite stiff, her progress across the lawn a long, slow shuffle.

  Thobeka introduced her as her grandmother.

  “It seems God is not with me,” she announced sharply by way of a greeting. “He is taking my children and leaving me alone.”

  “Makhulu [Grandmother] has been sick,” Thobeka said. “Since my brother died she has been getting a headache so bad that when it attacks her she can’t get out of bed.”

  “And he is not the first to leave me,” the old woman added. “He is not the first.”

  Her eyes moved between me and Sizwe.

  “Did you bring some beer?” she asked curtly.

  Sizwe said we had not. She brushed her hand at us irritably, as if she had just dismissed us from her home.

  “Since when does a person come here without beer?” she mumbled as she turned to leave.

  Sizwe chuckled to himself. “She thinks it is still the days of the big chief,” he said.

  “Sorry, Makhulu,” he shouted after her. “Next time we will bring.”

  Thobeka smiled thinly and watched her grandmother disappear into her house. She began speaking at length, and her talk soon took the shape of a broad commentary on MaMarrandi’s work.

  “I was sick,” she said. “I knew nothing of HIV, nothing of ARVs. I was lucky I came back here from Durban. The one who convinced me was Kate. She was the one who took me to the doctor. I asked Kate to write down everything the doctor said: what I must use, what I must not use.

  “It has been five weeks with the ARVs. I have a few side effects, as Dr. Hermann said I would. I have a rash. I have a pain in the side of my body. These things will go away. I have my instructions from which I live: to eat healthy, to take my pills at the right time. To not smoke. To not drink.”

  These strictures—do not smoke, do not drink—had punctuated the course of our day. They drew the line between the compliant and the recalcitrant, between those who embraced MaMarrandi and those who resented her. In MaMarrandi’s understanding of medicine, they also drew the line between those who would live and those who would die.

  I wondered about them. To drink heavily while on medication for chronic illness is undoubtedly unadvisable. A person who is habitually drunk forgets to take his pills, does not eat well, drifts into a state of absence, and increases viral replication in the body: the chronically ill must maintain a vigilant relation to their bodies that alcohol erodes. So if a person is dependent on alcohol and about to start antiretroviral treatment, he should quit drinking completely since he cannot drink in moderation. But there is no sound medical motivation to prohibit all ARV users from drinking, still less from smoking. It does not hinder people from taking their pills, nor does it impede the drugs’ work in the body, nor aggravate their side effects. AIDS doctors like Hermann do not tell patients that the success of their treatment requires them to stop smoking.

  And yet the chorus of laypeople who staff the ARV treatment movement at its grassroots do. Community health workers such as MaMarrandi, adherence counselors, support group chairpersons, and even nurses—I have met scores of people who state as an article of faith that those who smoke or drink while taking ARVs will die. It is an injunction that seems to have arisen organically from the front lines of the campaign.

  When I asked Eric Goemaere, the head of Médecins Sans Frontières in South Africa, about the origin of the injunction against smoking and drinking, he expressed irritation.

  “I’m a little annoyed,” he said. “I’m definitely not a puritan. I am not a religious person, either. I don’t want to re-create a church around ARVs. What I definitely don’t like is that it excludes some people.”

  We were sitting in his office in Khayelitsha. He nodded to the busy street outside his window.

  “Men in Khayelitsha go through a tough time before they get on the ARV program. People say to them, how many of you can say you don’t drink? There is a prejudice against drinkers, and it extends to men. Men are unemployed here, so they drink. So I tell our counselors they are going too far. Let them have the occasional drink. And for God’
s sake, let them smoke.”

  He mused quietly for a while.

  “Look at that picture behind you,” he said. It was an enormous photograph, the frame filled with singing faces. “It was taken when a thousand people in Khayelitsha got onto treatment. They are all there in their t-shirts. It is important for people to believe they are part of a club, perhaps even a church. It is a sense of ubuntu. If you want to create a club, you must create rules. Because otherwise everyone is in, which means nobody is in. It is amazing: they set up artificially a number of rules; it was never pushed by us. And they give challenges to each other.”

  Artificial, perhaps, inasmuch as the rules do not make medical sense, but not arbitrary: one surely cannot use any old set of rules to define the boundary of one’s club. What is the significance of these particular rules?

  Those who begin treatment must make a public renunciation. Watched and judged by an audience, they must deny themselves alcohol and nicotine. In Nomvalo, that audience is Kate Marrandi. Closer to the center of the treatment program, it is a support group of peers. In either case, one must submit one’s powers of discipline and restraint to a public test.

  I took these thoughts to Judge Edwin Cameron, among the most vocal, and probably also among the most self-reflective South Africans on ARV treatment. Cameron is a judge at South Africa’s Supreme Court of Appeal. In early 1999, he became the first South African in high public office to disclose to the nation that he was HIV-positive. He is now a leading figure in South Africa’s treatment movement. We sat in a bay window in his house in Brixton, Johannesburg, and I told him of the prohibitions on smoking and drinking I had encountered in Lusikisiki. At first, he found my story perplexing: he had not come across these prohibitions before. But as we talked, so he began thinking out loud.

  “I knew my status for eleven years before I started treatment,” he said. “During that time, I did not realize that this virus inside me represented an enormous contamination, a sense of self-rejection. I only began to understand these things when I realized that the drugs were working. Once the viral activity had been stopped in my body, I stopped feeling contaminated. I’m aware of having viral reservoirs, but I don’t feel contaminated, not in relation to you, or friends or people I meet, or sexual partners. There’s a liberation from a sense of self-disentitlement which successful treatment brings.

  “It’s a redemption of sorts. And like a spiritual redemption, you’ve got to cleanse everything. The more I think about it, the less surprised I am that it takes the form of a physical cleansing—cleansing your contaminated body of smoke and drink.”

  If this is right, Kate’s patients, who must stop drinking and smoking and must swallow their pills, are cleansing themselves of a judgment, a reproach, that is at once physiological and moral. What is this reproach that has gotten into the blood and taken the form of a virus? Cameron suggests that his self-rejection was for being gay. Is it, for Kate’s people, that the idea of the virus is attached to that of licentious lives, that to renounce smoking and drinking is also to renounce sexual adventure?

  There is, it should be said, something menacing in these renunciations. I recall that on the day we first went to see her, MaMarrandi spoke with sharp accusation of those who smoked and drank and died. It is as if the living were pointing an accusing finger at the dead, announcing that they had died by contamination. Perhaps it is hard to cleanse and to heal in the absence of an enemy or a scapegoat. One can hear it in Thobeka’s harsh tone when she talks of those who shun or fear ARVs: she draws a divide between friend and foe in bold and angry strokes.

  “There is a problem here in Nomvalo,” she said. “There are those who are saying the ARVs kill the people. And they say it because they do not want to stop smoking and drinking. They hear that before you go on ARVs, you go to a support group and you are told that smoking and drinking makes the virus strong. And then they say, ‘No. These ARVs are dangerous. They will kill us.’”

  “Yes,” Kate said. “When they start ARVs they are told to stop. They agree. They stop for three months, and then they smoke hard, they drink hard, and they die. People then see they have used ARVs and died, and so they blame the ARVs.”

  SIZWE AND I had barely spoken to each other during the course of the day. He had translated and I had listened, but we had not been alone since morning.

  Now, in the late afternoon, as we tailed the brisk-paced MaMarrandi back to her home, three young men, wearing vests and baggy pants and looking like they belonged on an urban street rather than a village path, greeted MaMarrandi warmly.

  She stopped and waited for us to catch up with her.

  “All three of those boys are on medication,” she said. “One for mental problems. The second one for TB. The third one for HIV.” She laughed heartily. “I took all of them to the clinic.”

  Sizwe stopped, turned around, and stared at them.

  “Such healthy-looking boys,” he said. “They are strong and healthy.”

  We walked on side by side.

  “Today has shocked me,” he said. “Everywhere we go we meet people who look healthy but are on medication. This one for his blood, that one for his lungs, all the rest for their HIV. If there was a Kate in Ithanga, would we all be on medicines, too? Do we just walk around ill without doing anything about it? Everyone here is on some drug. Maybe I would be, too, but I’m too scared to test.”

  Testing Day

  In early March 2006, the organization that employed Kate Marrandi, Bambisanani, told her that it was time to bring HIV into the open in Nomvalo. A professional nurse who worked for Bambisanani, Sister Sicwebu, would come to the village on a Saturday in April with a mobile testing unit to test anyone who cared to volunteer, for HIV. In the meantime, Kate was to prepare the ground; she was to begin training several of the people she had shepherded onto antiretrovirals as voluntary testing counselors.

  The idea was this: On one morning in April, dozens of Nomvalo’s residents would test for HIV. Several were bound to test positive. They would be drawn into post-test counseling with a fellow villager, and invited by their counselor to join the village’s newly constituted HIV support group. Nomvalo’s ARV takers were thus to become activists after a fashion, the pioneers of something akin to a village movement. They would draw the asymptomatic carriers of the virus out of the danger zones of invisibility and ignorance; they would use themselves as testimony to what a future on lifelong treatment looks like. Perhaps they and their forum would come to constitute an authority in the village, one that would settle once and for all the question of what AIDS means in Nomvalo and how one goes about living with it.

  In preparation, MaMarrandi went to the chief, discussed her plans with him, and asked for permission to have voluntary HIV testing conducted in Nomvalo. He responded with enthusiasm, and insisted on calling a public meeting to urge villagers to test. She also asked to speak at the services of Nomvalo’s Zionist and Apostolic churches, and urged the congregants to test.

  By the time Sister Sicwebu arrived on an early Saturday morning in mid-April, every soul in Nomvalo knew she was coming. The public discussions that preceded testing day had elicited a great many opinions, some irritable, some cautious, others dark. At the public meeting the chief convened, he had called on people to test, and the words and phrases he used had elicited some disgruntlement.

  “The government does not need its people lying down and getting sick,” the chief reportedly said at the meeting. “You have an obligation to go and test.”

  MaMarrandi had been sitting in the audience during the chief’s speech. From behind her, she heard a man’s mocking whisper.

  “What does that mean? That the government is forcing us to be tested? Do my veins belong to me or the government?”

  To that she heard another voice, this one much louder than a whisper, reply: “We are like cattle that must be dipped.”

  And then another voice: “The chief is the government’s herdboy.”

  And then muffled laughter.


  The day before the tests, MaMarrandi went to Nomvalo’s central spaza shop to buy potatoes and tomatoes. Outside the shop, she joined a group of middle-aged men.

  “We are not going to test,” one of them said to her. “It is a waste of time.”

  “Why is it a waste?” she asked. “What if you are sick?”

  “So what if we are sick?” another replied. And they told MaMarrandi that they would never test for this virus, because it was put in one’s body by witches and their demons, and antiretrovirals were useless in the face of witchcraft.

  Despite these murmurings of fear and doubt and resentment, a great many people turned out to test, so many, indeed, that Sister Sicwebu had to return the following day to finish her work. Some who came were young and still at school, others grandmothers and mothers with grown children. Almost all were women. Men confined themselves to watching and talking.

  Nomvalo is small enough for everyone to know everyone else. And, whether as participants or observers, everyone was interested in testing day. Things probably unfolded just as they had the previous year in Ithanga, when the nurses came to test and the counselors to counsel, and Sizwe had noted who went in, and how long it took them to come out.

  By the end of the day, about a dozen Nomvalo women had tested positive for HIV. I cannot say for certain, but given that they were counseled by fellow villagers, and that a great many pairs of eyes must have watched them on their way to and from the testing unit, it would be surprising if their status was still confidential by the following morning.

  For MaMarrandi, it was a moment of achievement. By our joint and, admittedly, rough calculations, about one in five Nomvalo women between the ages of fifteen and forty-five had now tested positive for HIV under MaMarrandi’s direction during the last three years. Few of them would have tested in her absence.

  Yet it was also a delicate time for MaMarrandi. The virus and the question of treatment were out in the open like never before. Several Nomvalo women were to wake up on Sunday morning vulnerable and exposed. They had to be scooped up very quickly into a forum of their peers, one where they would feel the presence of collective sympathy and the absence of ill-feeling; where they would hear a confident and simple account of what to expect and what to do over the coming weeks, months, and years.