To test or not to test

[steaner]

The government of Botswana, knowing that up to a third of its population had HIV or Aids, announced in 2001 that it would offer free antiretroviral treatment to every citizen with Aids. It was unprecedented in sub-Saharan Africa. By the time the drugs had hit the shelves, just about everybody in Botswana knew of it. And yet, on the last day of 2003, more than two years after the launch of the programme, only about 15, 000 people had come forward for treatment. The rest - more than 85,000 people - had stayed at home. The majority would now be dead. Why did they not go to get the drugs? And would the response be the same in South Africa?
On the day I clapped eyes on Sizwe in the spring of 2005, he was healthy and strong and had never tested for HIV, which puts him in a category shared by most South African men his age. In this sense at least, he was an Everyman.
I told him I was writing a book on Aids, and that I hoped he and his father, an igqira - a diviner-healer - would help. In response, he held out his forearm and shaped his hand to hold an imaginary syringe. "I have not tested," he said. "My girlfriend is pregnant and she went to the clinic to test. She's negative. Do you think that means I'm definitely negative?"
I was taken aback by his openness.
"If you want to know, you must test, " I said.
"I know," he replied, "but I'm scared." Sizwe lives on a perch near the top of one of Ithanga's highest hills. He built much of his house with his own hands, using wood from the forest and mud from the riverbed. When Sizwe was a boy, his family became very poor when his father began training as an igqira. But now, at the age of 29, he owns a shop, which puts him head and shoulders above just about all his peers.
Sizwe's house was two rooms. He and Nwabisa, his lover and the mother of his unborn child, live in one of them. The other room is his "spaza" shop. A chest-high counter runs across the length of one side, and behind the counter there are shelves from floor to ceiling displaying baby food, breakfast cereal, potato crisps, washing detergents, bread, matches, candles, tins of pilchards and baked beans, a rack of chickens. On the floor, wedged between the shelves and the counter, is a large fridge filled with bottles of beer. It accounts for more than half of Sizwe's income and most of his trouble.
We have been talking about HIV in Ithanga. I ask whether somebody close to him has died of Aids.
He begins to tell me about Jake. Jake and Sizwe grew up a few hundred yards from each other. At their mother's insistence, Sizwe and his younger brother, Mfundo, had taken themselves off to school some 12 miles from home. They would wake at two o'clock Monday morning and begin the long walk through the forest to school, arriving at daylight.
Jake does not go to school, but he sometimes arrives outside Sizwe's classroom unannounced when the school day ends. Jake and Sizwe spend the afternoons and early evenings hunting for girls. Sizwe is not a man to boast of his sexual prowess, but he has agreed to tell me his story, and he says he could not possibly count the number of girls he and Jake slept with during that time.
"You were not a shy boy," I say.
"I am very shy," he says. "I was always shy. Especially with girls. If the teacher asked me to read in front of the class, I could not do it. It's funny, I was making big sacrifices to go to school. And I knew why. I knew from early on what it meant to be uneducated. But when I was at school, all I could think of was girls. I was no good at schoolwork. I was confused."
It is 1995, perhaps 1996, and Jake hears some exciting and unexpected news: 100 people from the area are to be employed at a mine up in Johannesburg. "When Jake heard the news," Sizwe says, "the first thing he did, he borrowed a bicycle, went to my parents' house, and told them he wanted to fetch me so that I could register and go to the mines with him. My mum said no. Sizwe must stay in school." Jake goes to the mines alone, and they do not hear from him for nine months. And then, out of the blue, he's back, smiling from ear to ear, taking Sizwe and his brother Mfundo to town and plying them with presents.
The second time Jake comes home from the mines, he is sick. What started as severe lesions in his crotch has spread to his genitals; they are scarred and they itch incessantly. He has been to see a doctor at the mines. The doctor has prescribed medicine and it had worked for a while and then stopped working. Jake goes to see Buyisile, Sizwe's father, the diviner-healer. Buyisile treats Jake. His medicine helps a little. The scar stops growing. But it does not go away, either. "The next time he came home," Sizwe recalls, "the scar had started to grow again. And that is how he died."
"How did you know it was Aids?' I ask.
"The whole village thought his uncle had bewitched him," he replies. "But one day, when Jake was very ill, he confided in me. He had gone to a doctor in Port Elizabeth who had taken his blood and told him that he had tested HIV positive."
What strikes him now is how Jake's wasting away is the evidence of his own brush with death.
On a Saturday morning in early February 2005, the Médecins Sans Frontières treatment programme came to Ithanga for the first time. A group of MSF counsellors had visited the local chief to ask his permission to set up a mobile HIV testing centre at Ithanga's school and he had reluctantly agreed. For Sizwe, that Saturday when they set up the centre had little to do with medicine; it was about shame and fear. "Many, many people came to test, young people and not such young people. And to know who was positive and who was negative, you just had to stand and watch."
"For what?"
"For how long the people stay. You see, there is counselling before the test, and after the test. The counselling before the test, it's the same for everybody: a few minutes. But the counselling after the test, for some it lasts two minutes, for others it is a long, long time. They don't come out for maybe half an hour, even an hour. And then you know. By the time the day ended, the whole village knew who had tested HIV positive."
In the course of a few hours, eight or nine healthy, ordinary-looking villagers, most of them young women, had been marked out from the rest of the village. Everything about them was observed in meticulous detail: whether they coughed, or lost weight; whether they boarded a taxi to the clinic; above all, with whom they slept.
"What have you learned from that day?" I asked.
"That I must never test for HIV in my own village. If I test positive, I would be destroyed ... It would be the end of my business, the end of my future. It would be the same as if my enemies tied me to a chair in front of my shop and forced me to watch while they took it apart brick by brick, and carried away my merchandise item by item. That is what would happen."
During the course of the next year, I plan to visit several of Lusikisiki's clinics to write about Médecins Sans Frontières's antiretroviral treatment programme. I ask Sizwe to accompany me - I want to employ him as my interpreter. He agrees immediately. I wonder why he is so decisive. He begins to say something, then pauses. "There is a secret," he says, "a secret most members of my family, including my father, do not know about. A few months ago, my niece Thandeka tested HIV positive.
"She has told me and my mum, and no one else. Now I must help her decide what to do."
"You want to come with me to the clinics to assess the options," I say to Sizwe. "What are the other options?"
"There is a lady near Mthatha," Sizwe replies. "My father had a patient with Aids. He went to get muthi from this lady near Mthatha. He got better. Then he tested again for HIV and he was negative."
I have heard a great deal about the lady from Mthatha. She is spoken of in every Lusikisiki village I have visited. She is, in fact, a 15- or 16-year-old girl, and she is said to possess extraordinary healing powers. "She is your first option, the clinics are your last option?"
He nods. "A cure is better."
"We will go together," I say, "to the girl from Mthatha and to the clinics. At the clinics you will meet the doctor who runs the ARV programme. You will ask him everything you want to know. His name is Hermann Reuter."
The first encounter between Sizwe Magadla and Hermann Reuter goes remarkably well. We meet the doctor early on a Monday morning outside the MSF offices in the centre of town and set off together in the car. Sizwe clears his throat. "There is no clinic in Ithanga," he says.
"I know," Hermann replies.
"There are no doctors or nurses."
"I know."
"Can you give us some advice? What should we do to get the government to build us a clinic?'
Hermann smiles briefly. One car journey, and the young man from an outlying village is speaking like a nascent activist. "I'll be honest with you," he says. "Your community applies for a clinic and they will place you on the list behind 23 other places that have asked for clinics. They will start building your clinic in three or four years, if you are lucky. If you want a clinic sooner, you need to fight. You need the community to start shouting."
Sizwe nods and says nothing.
I next see Sizwe about a month later. I ask whether we will go to Mthatha to see the girl who can cure Aids. "I don't think so," he replies. "I attended a funeral in Port Saint Johns last Friday." His voice seems tired and reluctant. "There was a priest there, a priest the people respect. He mentioned the lady from Mthatha. He said she had failed in her promise to cure Aids. He had watched people go off to see her. They came back and kept getting sicker and died."
"Do you have another plan for your niece?'
"No. Maybe I will urge Thandeka to go to the clinic."
We had known each other for three months when Sizwe finally told the overarching story of the place of illness in his life. Much of it centred, he believed, on a long-running feud with a couple who lived on the far side of the river in Ithanga. The Magadla family has its fair share of chronic illness. Sizwe has a recurring stomach problem, he has a sibling with epilepsy, a source of embarrassment to the family. Sizwe's younger brother, Mfundo, has an indefinable nervous disorder. There are times when he wakes in the morning and his right side is numb. He does not know the cause of it.
Most important of all is Buyisile. Who was it kept coming to him in his sleep and calling him to the life of an igqira? Was it indeed his dead grandfather, or was it a spirit disguised as an ancestor? Had the old man been coaxed down a false path that would lead his family to penury?
As I listened to Sizwe's story, I was struck by the full weight of what it means to live in a magical world: magical in the sense of a world in which the gap between ill wishes and the means to fulfil them closes. Those who wish to ruin you can do so by little more than wanting it.
"Could Thandeka's HIV have come from the same source?" I asked Sizwe. "From the people across the river?"
"No," he replied. "She got that from sex, probably with her current boyfriend. His previous girlfriend got sick. I think he got it from her and gave it to my niece. Maybe she even got it earlier."
He said these things flatly and conclusively, as if there were no more to discuss. But for me it was the very beginning of the story. If witchcraft can explain Buyisile's life choices, the pain in Sizwe's stomach and the numbness in Mfundo's side, why not Aids?
One day Sizwe told me, "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 FW 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. Among the things he wanted to discover was whether Hermann Reuter was a villain or a friend. I believed that Sizwe was entirely open to either possibility, and was gathering empirical evidence.
When Hermann first arrived, there was a widespread fear that he brought Aids in his needle. During his early days in Lusikisiki, he had on two occasions arrived to packed clinic waiting rooms; some of the people assembled there had not come to be tested but to ask him to explain what was in his needle. He had had to stand in front of his audience and convince them that he had not come there to kill them.
The voices of dissent had grown quiet, but doubts lingered in the minds of people such as Sizwe. Perhaps things would have been different if South Africa's government had felt unequivocal about ARV treatment and had rallied behind it.
Hermann himself told me, "It doesn't surprise me... Hermann comes to Lusikisiki. Nobody has HIV. He tells the nurses to prick and suddenly every-body has HIV. Where does the HIV come from? It comes from the pricking. It doesn't surprise me."
Over the course of a three-month period in mid-2006, I sit in on several HIV support group meetings at Lusikisiki clinics. Sometimes Sizwe accompanies me. Some of the meetings are chaired by Médecins Sans Frontières counsellors, others by Treatment Action Campaign activists. They are held outdoors on clinic grounds, in full view of passersby - an emblem of their most urgent aspiration: to take the virus and those it afflicts from their secret places of shame.
The most eccentric feature of the support groups is their cosmopolitanism. An odd observation, perhaps, in the context of a rural town in the depths of the old Transkei, but Lusikisiki is about as unequal and diverse a place as you will find anywhere. Around the town centre are tiny suburbs of four- or five-room houses with satellite dishes and a car or two in the driveway. Twenty miles away is Ma Magadla, Sizwe's mother, who fetches water from the river and firewood from the forest, has never seen a working television or attended a day of school.
The support groups assembled on their plastic chairs under the trees make for an unlikely sight: a cross section of Lusikisiki. There are the counsellors and the Treatment Action Campaign activists, among them women in baggy trousers and cropped haircuts - the TAC has been the catalyst for the unlikely emergence of a lesbian subculture. Alongside them are middle-aged, buxom women from the villages in their starched skirts. Next to them, middle-aged gold miners returned to their home villages; young unemployed men living on their grandparents' pensions; men and women cast out of their homes because of their illness and living in a tin shack settlement to the north of town.
From this motley jigsaw of Lusikisiki's people comes the most remarkable talk. Men and women who, under other circumstances, would have come no closer than to brush against one another on the street, here exchange views on clitoral orgasms and semen and anal sex; proper conduct in matters of love, marriage, parenthood and nutrition; and, of course, drugs. There has surely been nothing remotely like this in Pondoland's history.
Coming away from one of the meetings with Sizwe, I notice he looks grey and troubled, and ask him why. "Everyone here today looked healthy, " he says. "And yet everyone here was sick. I looked from one face to the next one and wondered whether it was possible that they were all sick. And if it is true, if they are all sick, it is possible that everyone in Ithanga is sick. The whole village. Everyone. Me. My mother, my father, the people who drink in my shop. Everyone."
A few days later, he tells me the story of a relative called Vuyiso, from a village some distance away. "It started with a skin disease," he says. "His skin went very dark, almost black. That cleared, but then he started getting a running stomach. He has had it over three weeks now. It seems it is permanent. He came to me a while ago. He wanted to talk about money. There was going to be a big ceremony for his daughter who is getting married. Vuyiso asked me if he could borrow 3,000 rand [£187]. I gave him 2,000 rand [£125]. The ceremony was last weekend. I arrived and Vuyiso was not there, at his daughter's own ceremony, for which he had humbled himself to raise money. He was too sick to attend."
"How do you know it is Aids?" I ask.
"It is clearly Aids," he says cautiously. "The skin, the running stomach. All he has done is get medicine from the chemist. I said to him openly when he came to see me, 'Maybe you must go and test for the virus.' He said, 'What can you do if you have Aids? I don't want to know. ' Next week, I am going to take a day off and make a trip to his village. I will tell him that having Aids does not mean you are going to die. That you must go to test. It is like asthma. It is something you are sick with for a long time, but it is not death. You can live and you can work."
Sizwe admits he has changed his mind. "First, I have seen four, maybe five people at Ithanga get very sick, and then get nearly better on ARVs. Also, the trips I have done with you - with Dr Hermann, with the nurses - I have seen the work the nurses do. But mainly it is the girls from Ithanga, the very sick girls who went on to ARVs and are well now."
On a Saturday in mid-July, we attend a funeral some distance from Ithanga. After an hour or so, Sizwe leads me round to the back of the tent. "This is a cousin of mind, " he says. "His name is Mabalane." Mabalane is 30 at most. He smiles nervously.
"He is an inyanga, " Sizwe says. "And he has been telling me about a cure he has developed for Aids. He says he has cured many people. I would like to see his place and his medicines. It is not far from here."
It is a 10- or 15-minute journey. I turn on my Dictaphone and we ask Mabalane about his work.
"The ancestors started calling me when I was very young," he says.
"What are the diseases you have learned to cure?"
"Any disease. If someone comes with an illness I cannot heal, I tell him to go. As soon as I go to sleep, all the ancestors come, even the ones I have not seen before."
"How do you recognise Aids?'
"I need a card from the clinic saying they are HIV positive. Then I give them two litres of medicines: they are herbs I have been told to fetch in my dreams. When the two litres are finished, I tell them to go back and test again. The test will be negative. I don't reduce the Aids like the doctors. I kill the disease." He pauses a moment, and then adds, "I charge 200 rand [£12.50]."
His workshop is dark and windowless. On the floor, several dozen bottles are piled haphazardly: half-pints, one-litre cold drink bottles, beer bottles. He gets down on his haunches, chooses three bottles, pours out a generous portion of herbs from each, mixes them together, and empties the cocktail into a supermarket bag. He rolls the bag up tightly and throws it across the room into Sizwe's lap. Sizwe reaches for his wallet, finds two 100-rand notes, and puts them down next to him on the floor. "One herb is for TB, another is for diarrhoea and the third is for headaches. When you mix them together it cures Aids," Mabalane says.
Later, when we're back at his shop, I ask Sizwe, "What do you think of these herbs?"
He stares at the ground. "I'm not sure," he says finally. "If it does cure Aids, why do more people not know of it? But what is there to lose?"
"The herbs are for Thandeka?"
"The main problem is her boyfriend," he says. "Maybe what I must do is visit the boyfriend and instruct him to go to Mabalane to buy two litres of medicine. Then I will sit Thandeka down, give her these herbs, and tell her not to have sex with her boyfriend for two weeks. Then I will take her to the clinic to test again."
I count two weeks from the afternoon Sizwe bought the herbs, and mark the day in my diary. It comes and goes. Eight or nine days later, I get a call from Sizwe. I am too curious to wait another week until I see him. "Did Thandeka and her boyfriend take the herbalist's medicine?" I ask.
"They both took it." A long pause. "When the two weeks were over, they went to the hospital. Both tested positive. They had their CD4 counts taken. Hers was 435. His was 402. They were told to come back in three months to have their blood taken again. And if either of them gets sick before the three months is up, then they must come back immediately."
He relates these things to me without emotion. But I know that a heavy burden has lifted from his shoulders - to know that Thandeka's CD4 count is 435, that there is still plenty of time, that she is not at death's door, that there is now a protocol to follow. "Mabalane did a very good job," Sizwe says. "I am happy with him. If it were not for the herbs, Thandeka's boyfriend would never have gone to test. Perhaps even Thandeka herself would have done nothing until she was ill or dead."
Sometimes Sizwe seems on the point of going for a test himself. Then he draws back. "How can I ever be ready to hear that I am HIV positive?" he says. If I test today, and the result is positive, I will have to send Nwabisa and the child in her womb back to her home. I will not be able to marry because I will soon die. And even if I am to live a long time, my children might be born positive. No woman could be my wife. I would be like an ox: I would sweat in the fields for a while, and then get sick and die."
Bridewealth, or lobola, is frighteningly expensive. Formal negotiations between Sizwe's and Nwabisa's families had not yet begun, but he could reasonably expect to be asked to pay an initial instalment of cows and cash to the value of about 25,000 rand (£1,560). Sizwe's shop was doing well. He had been slowly accumulating his bridewealth. He had just bought two cows. He was almost ready.
Most men his age could not afford to marry, could not afford to sire children who would bear their names. Sizwe was lucky or smart or single-minded enough to earn a reasonable living. He had invested his profits in a proper marriage, in children who would be born Magadlas, and in a growing bundle of assets that they would inherit.
I think I understand a little better now what Sizwe was feeling when he refused invitations to test for HIV. Whatever else it meant to him, being HIV positive was a curse that one might transmit to one's children. The corrosiveness of Aids was expressed in the wasting away not only of one's body but of one's lineage and thus, too, of the lineage of the dead ones who walked this earth in years gone by. I wonder, then, whether at one level Aids ought to be understood as a metaphor that describes the fate of the men of Sizwe's generation. Their fate is to fail to procreate as patriarchs do.
In Jaunuary 2006, Sizwe and Nwabisa's son, Mfanawetu, was born.
I had arrived in Lusikisiki in the first week of October 2005 and met a man too afraid to test for HIV. Nineteen months later, now a father, he was in the same position, too afraid to test.
From the very beginning, I knew in the back of my mind that my own experience of Aids prefigured Sizwe's. I am gay, middle class and entering my late 30s. When I became sexually active in the mid-80s, I was considered to be at the heart of the epidemic's highest risk group. I was as sexually adventurous during my late teens as Sizwe was during his. And I was at least as careless as Sizwe about using condoms. If Sizwe is lucky to be strong and healthy today, I am as lucky as he.
My first HIV test was little short of catastrophic. I was 18 or 19. I had had unprotected sex with a man I knew well. I thought nothing of it for a week or two until suddenly, while taking notes at the back of a lecture hall, I was overwhelmed by the conviction that he had infected me with HIV.
I waited three months and then walked into the student health centre at Wits University in Johannesburg, where I was studying, and asked for an HIV test. I chose the campus centre for its anonymity. I went to get my results a few days later. The waiting room was full. The receptionist asked what I wanted. I told her my name, and that I had come to get test results. She collected a file. "Ah," she said, looking up, "you are here for the results of your HIV test." She pulled out a sheet of paper. "There's no need for counselling," she said. "You tested negative."
Very likely no one overheard the exchange between the receptionist and me, and yet I felt I was walking a gauntlet of sniggers. I began to tell Sizwe what had happened in the campus health centre 18 years ago. "It is not the same for me," he said quietly. "A little bit of me is worried about what other people will think, but that is not the main reason I won't test." He cleared his throat. "If I know I am HIV positive, I will no longer be motivated to do the things I am doing now. It will all be meaningless for me. I am doing all of this for my children. If I die of Aids, Mfanawetu will not get my money. Some others will get it. That is why I will not test. If I test positive, I will no longer get up in the morning to work.
"This is not a disease you go and look for," he said. "You wait until it comes to you. And then you deal with it. If I start getting sick with Aids symptoms, then I will go and test."