I turned around and rode my bike quickly back to my college, lonely, triumphant, and angry. At the time, I was as fit and healthy as I had ever been. I either ran or played squash or went to gym almost every day, and on weekends a friend and I often explored the surrounding countryside on bicycles. I turned the corner into Little Clarendon Street. As I began ascending the hill, I stood up tall, dug my left heel into the pedal, felt the quadriceps in my thigh flex, felt their strength, and celebrated it. The sickness lay in the Radcliffe Infirmary; that is where the taking of blood from my arm would make me weak and unsteady, leaving my thighs unable to carry me. I was cycling away from sickness, and toward my continued health.
Looking back, it is as clear to me now as it was opaque then that I had scooped up the aggression and hostility that had been hurled at me—that of the insurance companies and the prospective employers, whose toxic message had been delivered to me via the mouth of the trusted Dr. Rutland; I had scooped up their dark hostility, mistaken it for a friend, and hurled it with all my might at my own will to live.
It is among the most disturbing and pitiful images I have of myself: a terribly lonely, terribly angry man on a bicycle, riding as fast as he can from self-care.
IN MARCH 2007, about a decade since I had last laid eyes on him, I wrote to Andrew Rutland, told him of the book I was writing, and asked whether he could comment on the advice he had given me back in 1997. Two days later, he e-mailed a clipped reply of unadorned candor. He said that while he had followed the established protocol of the time, the protocol itself was “rather precious,” and “in retrospect rather silly.”
“There was guidance at the time that HIV testing was best conducted in specialist centres with people who were trained to give pretest counselling,” he wrote. “This was always a rather precious approach to the issue and has disappeared as HIV testing has come to be accepted as just another medical test.”
As for the question of my test results being used against me, he wrote that people “working in practice settings” had been concerned, at the time, “about access to test results…Again, this was in retrospect rather silly and treated HIV as an exceptional case. Of course, all medical data should be treated with complete confidentiality by practice staff and HIV shouldn’t be treated any differently.”
I CAN’T BE entirely sure now, but I think I forgot that I had ever gone to the Radcliffe Infirmary to test. I certainly gave little thought to the fact that I had not tested at all.
Two years later, I found myself sitting in a blood laboratory in Johannesburg. I had just returned from a malaria zone and I was coming down with the flu; taking a malaria test was a responsible precaution.
As the nurse prepared her needle, she gave me a folder to sign. On it was a printed list of some forty blood tests. She had ticked two of them.
Casting my eye down the list, I saw “HIV.” It came as something of a revelation.
“Can I tick this one, too?” I asked. “Can this blood sample also be tested for HIV?”
“Of course,” she replied.
I sat on the bed, rolled up my sleeve, turned the inside of my arm up, and bunched my fingers into a fist. She inserted the needle so gently I did not feel it.
“Damn,” she said calmly. “I should have asked you to do this lying down.”
“Why?”
“Because you’re going to faint, and I won’t be able to break your fall. Please lie down.”
“I’ve never fainted when someone’s taken blood from me,” I replied cheerfully.
“Well then this is your first time.”
The next thing I remember I was feeling grotesquely nauseous. I felt the starched pillowcase scrape as I turned my head.
WHEN MY MEMORY began returning to me and I recalled the morning I had hurtled away from the Radcliffe Infirmary on my bicycle, I thought immediately of Sizwe. I thought of him standing outside the school in Ithanga on the Saturday when the counselors and nurses came to conduct voluntary testing.
I went to a testing site at the heart of the developed world. Sizwe went to a makeshift site in an old apartheid Bantustan that had never known decent medicine. And yet on the face of it, the HIV program he encountered was far more sophisticated than the one I did. At the sites I went to test, a university health center and a doctor’s practice, the personnel at hand were clueless of the workings of stigma. Sizwe, in contrast, had Médecins Sans Frontières. They had thought of little else but how to conquer stigma. Was there nonetheless something they failed to understand? Did the scent of hostility reach Sizwe’s nose because there was something MSF had not thought through?
Of course there was hostility outside the school that morning. It was so thick Sizwe could almost touch it. Back at the campus health center in the late 1980s, I had felt my cheeks flame when my test results were announced in a room crowded with strangers. Afterward, I had imagined them assembled into a sniggering gauntlet, giving me my comeuppance. Sizwe did not need to leave so much to the imagination. The hundreds of pairs of eyes watching the school had known him since he was knee-high; there was not a stranger among them. That they would have sniggered triumphantly was no paranoid fantasy, but a plain truth, for he had heard the sniggering with his own ears when the day was done.
Those who designed the treatment program of course knew of that hostility. They knew that the testing sites they erected in the villages were amphitheaters filled with uncharitable audiences. Their message to those who walked into their testing centers was this: Yes, there is ill feeling out there, but it doesn’t matter. Yes, your community will know your status, but you will be okay. Once you realize that the hostility will not hurt you, you will have walked through an invisible barrier. You will have shaken off an unspeakable burden and an intolerable pain. Come with us, there are many of us, we will protect you.
As Hermann Reuter had put it to me soon after I met him: “Your friend Sizwe, if he goes to test and he tests positive, then yes, the people in his community will know, and he will make some enemies. But the friends he makes will be more important than the enemies. The people testing positive develop meaningful relationships, the sort of relationships they have never had. Before, they were sitting around and doing nothing. Now, their lives become meaningful.”
To Sizwe, it smacked of a cult. The beseeching sincerity, the invitation to jump out of your world and into another: bands of proselytizers had been wandering in and out of Ithanga since he was a small child. They all came heralding a cure. He had, he believed, seen it many times before.
When I pushed him on it, he stood up and cleared his throat and showed me what it was he had seen that Saturday morning at the school. He stood with exaggerated erectness. His eyes glazed over. And when he spoke, what came from his mouth was the high-pitched, fervent voice of a Sunday preacher.
“I am living with this virus,” he said in his shrill, insistent voice. “I am living with this virus and I am healthy, I am strong. With these pills, the virus is dormant inside me. It cannot hurt me now. It cannot make me sick.”
He sat down, a little sheepish from his performance. “It sounded like the Zionists,” he said, “like a new Zionist church had come to town. How are they so different from the Zionists? They say they have come to heal, they have a new cure, but you must join them in their rituals if you want to be cured. It is the same.”
And as with the preacher who tells his audience that he was mortally ill before his epiphany cured him, Sizwe simply did not believe it. He had to wait more than a year, when evidence that the pills did good work was too apparent to ignore, before he knocked on Jake’s brother’s door and took him to the clinic to test again for HIV.
I do not think that Sizwe believed the nurses and counselors at the school to be hostile. But he did think them dangerous. For the choice they were offering was unacceptable to him. Come in and test, they said, and if you test positive, you will either walk out alone into a world of ridicule and condemnation, or you will come into our circle where we will p
rotect you. He did not believe them capable of protecting him: not from the sense that there is dirt in his blood, not from the theft of his children’s inheritance. He still does not believe that the pills can shelter him from these things. He lives in a space the MSF program has not penetrated: he is the embodiment of the program’s limits.
If there was ever a moment Sizwe came close to believing that ARVs might be for him, it was during our time with Kate Marrandi. Instead of holding up a mirror to his shame, she spurned it with love and acceptance. That is indeed her magic: her capacity to show a face that is ineluctably benign.
I INTERVIEWED HERMANN Reuter for the last time on a Sunday morning in September 2006. It was about two weeks before his farewell event at the community hall in town. We sat in the sun on a small patch of lawn outside his front door. He clutched a bowl of milky breakfast cereal and ate from it noisily. Inside the house, a colleague of his sat alone at the dining room table waiting for him; they were to spend the day preparing MSF’s Lusikisiki exit report.
He asked how the book was going. I told him I doubted whether he’d like it. Instead of being about his program it was about the people and places beyond its margins: places like Ithanga and Nomvalo, people like Sizwe and Kate Marrandi.
“The things at the periphery are very important,” he replied. “I have no doubt it will be a very good book.”
We did not often talk about Sizwe, but when we did our conversation fell into a familiar pattern. He listened very attentively, even hungrily, I thought, as if I were bringing him intelligence from a murky and ill-defined zone that lay beyond the boundaries of his world. And yet the expression that would come over his face was both troubled and unimpressed, as if the intelligence he was receiving was compromised, his task to separate the nonsense from the useful. For my part, I was childishly titillated by the ambivalent interest he took in the news I brought him. Watching him make sense of it, I imagined, was to watch him take down an invisible guard.
At the time of our conversation, the woman Sizwe had approached to become Ithanga’s Kate Marrandi had been on the job about six weeks. Sizwe and I had just learned that she was trying to pass herself off to her patients as HIV-positive. I told Hermann this. I also told him of Sizwe’s belief that she had been instructed to lie by the counselors who trained her, that the program itself was encouraging the people it sent out to the villages to deceive.
“He still doesn’t want to use his real name?” Hermann asked.
“Yes.”
“For me, that is the one reason I won’t like your book. I think it will ruin your book.”
“Why do you feel that strongly about it?”
“Because of the things that are said about people living with HIV. That they are just pushing a line, that they are lying. We need to say where we stand in our society. We need to be able to stand with who we are. This man is so quick to talk to you about this and that. But when it comes to putting his name to his thoughts, he says no.”
“There are people around him who have not disclosed,” I said.
“Yes,” he replied, “and the family needs to acknowledge who they are and what is part of them. Disclosure is linked to acceptance of your reality. If your book perpetuates secrets it becomes part of that mystic kind of mentality that is so damaging: the mentality of witchcraft.”
“It is not for him to disclose on behalf of members of his family,” I replied.
“It is. He must disclose on behalf of his family. That is the beginning of healing. It will heal them.”
Perhaps it was defensiveness on my part, for Hermann had certainly jabbed at a raw nerve, but I felt my distaste rising. What came to mind was the radical gay practice of outing. Those in the closet are tracked down, hounded out into the sunlight, and healed, through violent humiliation, of their homophobic self-hatred. I found myself sympathizing with Sizwe’s wariness. This is a cult, I thought to myself; that a delicate tissue of privacy surrounds everyone, holding their dignity, keeping them sane, is something this cult has forgotten. Salvation through confession: that is its trade.
“This is a person,” I said to Hermann, “who has shared with me thoughts about his father, his wife, his own body, thoughts that are by rights private. That I am writing of them at all—”
“I see myself as a psychologist,” he interrupted. “I want to heal people. You just report about it, you don’t need to change his life. I wouldn’t be able to hear anything about his life without wanting to change him. That’s me. I’m a doctor. I want to heal. I think not wanting to disclose a name is part of a big pathology.”
“It is pathological that he—”
“I just don’t understand. If anyone from his village reads this book, the story can be about no other person but him. Anyone who doesn’t know won’t know. It’s that simple. By you saying we have to keep the name secret, blah blah blah, I don’t know, it creates such a, I think it destroys the story. It is like…think of it: people who know him will recognize him in the book. But they won’t be able to talk to him about it because his name is not there. They find it interesting. They want to engage him about it. But he is denying them that. That for me is the worst kind of disclosure: hidden disclosure. People come to me and say they are not disclosing to anyone, but everyone in the community comes to me and says this person is HIV-positive, you must help them. That is terrible.”
“You want me to convince him…?”
“Don’t try to convince him. Try to heal him. Point out to him how openness is part of the healing process.”
He turned his head away and shrugged dismissively. “I don’t know. I haven’t engaged with him deeply. I rejected him quite early in my encounters with him.”
“Why?”
“I decided not to engage with him. I don’t have time to engage with everyone. He was too big-mouthed in a way.”
“What do you mean?”
“I don’t know. I don’t know him.”
“What do you mean by big-mouthed?”
“Yes, that’s what disturbs me. He is attention-seeking, but then he wants not to disclose.”
“How was he attention-seeking with you?”
Hermann laughed nervously. “I’m judging him unfairly. I…”
I stared at him. We both said nothing for a while. He sighed.
“Whenever a white person goes to that village, they come back talking about him. First it was a photographer, then an anthropologist, then you. They come back and talk about him and the stories he tells are so striking. Somebody who pours his life out the first time he meets people. Do you know of this man at Ithanga who is scared of his shop being attacked? If you’re really scared you wouldn’t pour it out to any white person who comes past. White people are distrusted. I didn’t like that. I like people when one doesn’t see what bothers them on a daily basis.”
I was not sure what to say. I felt wounded on Sizwe’s behalf. Hermann’s musings were awfully close to Sizwe’s most jaundiced thoughts about himself. Indeed, the doctor had found and was prodding at the very kernel of Sizwe’s shame, the very thoughts that had contaminated his blood.
Hermann laughed nervously again, as if his desire was to say these things and retract them at the same time.
“I’m unfair,” he said. “I don’t know him. I’d probably enjoy talking to him. I’d probably like him very much. Because he has a lot of very interesting things to say. I’m probably jealous that I didn’t get to spend time with him.”
LISTENING TO MY recording of this conversation in my study, the birdcalls and children’s shouts of Sunday morning Lusikisiki in the background, our exchange struck me as amusing. Two white men in conflict over whether the black man one of them has found is a genuine article or a trickster.
Hermann had both the grace and the intelligence to point out immediately that what he was expressing was sour grapes. You’re telling the story of a person who won’t test, he was saying, a person out of my clutches and thus an emblem of my limitations. But so what? You can
have him. I washed my hands of him long ago.
Of course Hermann was “jealous,” as he put it. The jealousy he was expressing was an activist’s frustration with his limits. He was jealous of those he imagined had seen Sizwe’s interior because it was a place he and his program could not reach, the interior of a man who will not test despite having lived within the boundaries of an MSF program for nearly four years. It is comforting to grow suspicious of him: it is self-justifying. Perhaps, you tell yourself, we cannot reach him because there is something wrong with him, because he is a fake. And so you divide the world into two: those you can heal, and those you scorn.
I wondered why Hermann could not see that people like Sizwe represented a victory, not a failure. Sizwe was the low-water mark of Hermann’s achievement: a young man who simply refuses to test. Yet even Sizwe concedes that if he falls ill, he will go to the clinic, test, and take the pills. That this option is available to him at all, and that he will take it, is thanks to MSF. Indeed, so many of those who people these pages are Hermann’s victories: Thandeka went to the clinic for a CD4 count via a failed attempt at a traditional cure. Xolela sat at home sick and in denial until his dead brother’s closest friend insisted on taking him to the clinic. Vukani went onto treatment secretly, attended a support group, but tried to conceal it. These are the frail, imperfect ways of ordinary human beings in the teeth of a great epidemic. They have, according to their various signatures, chosen to live.
DURING THE CAR journey to Mount Ayliff early on the first Tuesday of April 2007, I asked Sizwe what he thought of Hermann Reuter.
Sizwe's Test: A Young Man's Journey Through Africa's AIDS Epidemic Page 35
