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

  “I am told that by the time of the umbathalala I was walking,” she replied in a surprisingly strong voice. “My mother was pregnant with my younger brother. The umbathalala was taking the pregnant women, and everyone was concerned for my mother.”

  The umbathalala—the great disaster—is the 1918 flu epidemic. She was about ninety years old now.

  Once she was settled and breathing more easily she began to talk in a continuous stream.

  “The sadness in this household is carried in my chest,” she said. “The night after my granddaughter died my TB deteriorated immediately and the medicine no longer worked. Every day since her death it is more difficult to breathe.”

  She turned to MaMarrandi: “You will be coming tonight? You will come here after your work is finished and we will read?”

  “Of course I am coming, Gogo,” MaMarrandi replied. “What else do you think I would be doing tonight?”

  The old lady beamed and nodded, and her chest rattled.

  “It is not just her lungs,” MaMarrandi said to us. “The girl passed away three weeks ago, and since then there is very little sleep in this house. On the third night I came here and I read to Gogo from the Bible for one hour, then another hour, and her breathing went quieter and she went to sleep. I went home, it was late, I got into bed, and then there was a pounding on my door.

  “‘Gogo has woken up, and she wants you again,’ they shouted.

  “I went back in the middle of the night. And that is how it is here every night. I come and read with Gogo and we go to sleep together. Early in the morning I go home to wash.

  “Both of them can’t sleep,” Kate continued, “they both of them see Zukiswa standing in the doorway late at night.” It was the first time that day I had heard someone utter the dead girl’s name. “Zukiswa says nothing, and they don’t know what she is thinking. It is only when I come and read that she disappears.”

  Throughout our conversation Zukiswa’s aunt sat a little apart from us and stared out the window.

  “We are grateful to MaMarrandi,” she said finally. “She is Gogo’s medicine to sleep.”

  And then she began talking about Zukiswa. One after the other, she chronicled the ailments from which her niece had suffered since she was a small child. And in this long, scrupulously detailed list, she kept returning to a chronic condition that had first visited her at the age of fourteen: disabling headaches that kept her in bed for weeks on end.

  Although she did not once draw an explicit connection between these childhood illnesses and her death, I understood her to be inferring that the origins of the ailment that killed Zukiswa were to be found long ago, when she was not yet a young woman, but rather a virgin girl. I understood her to be saying that this death had nothing to do with sex. She was, I thought, attempting to grab her niece from the clutches of a nameless shame.

  ONCE WE WERE on the road again, I asked MaMarrandi if she had known Zukiswa well.

  “She was born in ’74,” she replied. “The same year as my daughter. They attended school together.”

  “Why did she die?” I asked.

  She repeated the story of the fourteen-year-old’s chronic headaches. “They were so bad that she had to drop out of school in standard eight [tenth grade]. The doctors could not find the cause of her headaches, and many people believed she was sick because the ancestors had called her to heal. But she did not train to be a diviner. The headaches backed off a bit. She would start with a temporary job, then the headaches would come again and she would stay home for a while.”

  “I thought she was a social worker.”

  MaMarrandi smiled. “In her last job she worked for social workers. She would photocopy the people’s IDs and do work around the office. During this last job, she started getting terrible headaches again. The people did not think it might be HIV. Everyone thought it was the old problem.

  “She used to come to my place often because she liked to eat my guavas. I counseled her. I tried to get her to test. She resisted. I told her she was getting very sick. Eventually, when she conceded and we went to test her blood, her CD4 count was thirty-nine.”

  Perhaps, then, all the talk about the history of headaches was not about retrieving Zukiswa from a shameful death. What was at stake, perhaps, was the guilt of those still alive: they had mistaken AIDS symptoms for an old illness, and so they had not coaxed her to a clinic to test until it was too late.

  WE VISITED MAMARRANDI’S six patients back-to-back during the course of the day.

  The first was not at home. We left a message with a neighbor and were about to leave when MaMarrandi caught sight of her making her way up the path from the river, an indistinct figure carrying a large bucket of water on her head. As she drew closer, and the contours of her body took shape, it became plain that she was sick. Her thinness was the unmistakable thinness of the chronically ill; the curves of her body had been flattened into rigid lines, her breasts small against her chest: a young woman transformed into a lanky and undernourished prepubescent. Her face was marked with the raw outcroppings of a skin disease, and the sweat of her labor had run from her temples down her cheeks and into the crevices and ruts between her scars.

  She put down her bucket and invited us into her room, a square, mud structure with a single bed, an older dresser, and no more.

  “How are you feeling, Nosiviwe?” MaMarrandi asked.

  “I get dizzy when I work,” she replied. “And my stomach runs every day. And I feel like I have a blister on my ankle.”

  “Did you follow my advice? Did you go to Saint Elizabeth’s?”

  In a sullen tone and with bowed head she told MaMarrandi that she had visited the HIV unit at Saint Elizabeth’s many times, and had attended the support group for people beginning ARV treatment three weeks in a row. Each time she had been sent home empty-handed because she had nobody to sign for her pills.

  “They will not give you pills,” MaMarrandi told her in a quiet voice, “until they have trained a member of your family to help you take them. And to know the side effects. The family must know the side effects.”

  “I myself know,” the young woman said. “Three-TC causes dizziness and headache. Nevirapine burns your liver. E-five-rands [Efivarenz] gives you dreams.”

  “Why do you not take your sister with you?” MaMarrandi asked.

  “She is pregnant. She gets very short-tempered.”

  “Who will you take, then?”

  “I will ask my mother.”

  “Will she go with you? Do you want me to talk to her?”

  “No. She will come.”

  ONCE WE HAD left, I asked MaMarrandi why she thought the young woman was struggling to get her family to support her.

  “I don’t know,” she replied. “I would have to sit down with them.”

  “What do you think her chances are?” I asked.

  “It is good that she tested when her CD4 count is still high,” MaMarrandi replied. “It is 201. The problem is that she drinks. I am not confident that she will give up drinking.”

  “Why?” I asked. “Does she have problems with her family? With men?”

  The three of us were walking in single file along a narrow path. All I could see of MaMarrandi was the back of her straw hat and her rucksack.

  “The whole family drinks,” she said neutrally. “They’ve been all of them drinking since they were children.”

  PATIENT NUMBER TWO was out for the day, and after a brief chat with her mother, we departed. Number three was a middle-aged man called Vuli. He lived alone in a three-room house. When I asked him about the history of his illness, he stiffened his back ramrod straight and began speaking in clipped, staccato sentences, as if giving a set of instructions to a large gathering.

  He contracted TB in 2003, he said. It did not go away. In 2004 he tested HIV-positive. His CD4 count now was 337, so he was not ready to start with ARVs. But he was sure he still had TB because he felt sick all day, every day, and he had very little energy when he woke
in the morning and none at all when he went to sleep at night. He was going to the clinic for a sputum test the following day, and he was sure he would test positive.

  While he was speaking, MaMarrandi rummaged through her rucksack and pulled out her reading glasses, her black exercise book, and a number of glossy leaflets. Now she had a leaflet in front of her, a pen in her hand, and her glasses on the end of her nose. So poised, she began:

  “I am advising you to go to the support group at the hospital in Lusikisiki,” she told Vuli in Xhosa. Sizwe translated quietly in my ear. “I know it is taxi fare and half a day away from home, but it is very important to go there. You will get lots of knowledge. You will learn from other HIV-positive people there. And you will learn the importance of having a decent breakfast every day. You will be taught to eat coffee and porridge and bread with peanut butter. These things will give you strength for the day. The food will also be a reminder for you to take your pills. At the support group, they will also tell you to have a good lunch: beans and soup with pieces of meat.

  “You will be advised to play, to exercise. I know it is difficult for an old person. But you must go to neighbors and talk and not be lonely, because company is also like exercise. Also, you must go and knock on the doors of others in this village who are HIV-positive. You must talk to them.”

  “Where will I find them?” he asked dismissively. “They are hiding themselves.”

  “Whenever you are feeling uncomfortable,” MaMarrandi continued, ignoring his rhetorical question, “you must go to the doctor. Because HIV-positive people can get sick suddenly, and it is important that you are treated.”

  She took off her glasses, put them carefully on her lap, and looked at him squarely.

  “Now I’m going to talk about a difficult thing. You must reduce your smoking, and then slowly stop it. The TB tablets will not work if you smoke. And after you are on ARVs, they will also not work. And the other difficult thing is drink. You need to stop drinking so that the TB medicine will work well in your body. And in any case, if you get drunk at night, you will forget to take your tablets in the morning.

  “But all these things become easier with support. You have raised the point, and I know it is true, that it is difficult to meet people here who are HIV-positive because they are shy. We are in the process of convening a support group in the very near future, there in the community hall. It will happen soon.”

  He laughed humorlessly. “Your support group will fail. Everyone is running away. Everyone is hiding. The only people I have met who are HIV-positive are the people at the clinic in town. They are from other villages. I just greet them, and then we go our own ways.”

  “Some people get confused when they discover their HIV status,” MaMarrandi continued doggedly. “They want to kill themselves. At support group, they meet people who have already started up. The other people say: ‘I was also like this. I wanted to kill myself. Then I went to the support group and it has changed my life.’”

  He nodded impatiently, cupped his chin in his hand, and waited for MaMarrandi to announce that we were leaving.

  OUT ON THE village paths, MaMarrandi began speaking about him unsolicited.

  “I am scared of what will happen with that Vuli,” she said. “A man whose immunity is dropping like that cannot be alone talking to no one, eating dry bread, not cooking. He is stubborn. His stepmother lives very near him. He could go there for meals and for company. He will not.”

  “What are your plans for him?” I asked.

  “I could go there every day and cook for him and eat with him. I could give him food and company. But I cannot do that. My husband is not here. I am a woman alone. He is a man alone. I cannot go to his house every day and close the door. I need to start this support group. I cannot help that man alone.”

  For the first time, I was struck by the delicacy of Kate Marrandi’s position. Her presence in this village had maneuvered talk about AIDS out of the depths of secrecy, but not yet into the light. She had taken it only as far as an awkward twilight zone, one that was no longer private but not yet public. The sick discussed their illnesses with her, behind closed doors, but seldom with one another. One woman, traveling from home to home, substituted for a public forum.

  We had found MaMarrandi during a transitional phase. So late in the history of the epidemic, she was attempting to turn AIDS into the subject of formal public discourse, an issue that people would meet to discuss in Nomvalo’s public spaces. The circumstances under which she was doing so were very trying indeed. Had she lived in a village within the Lusikisiki district, she would have had a clinic, nurses, two or three adherence counselors, and a doctor’s weekly visit to help her bring AIDS into the light. She would have taken her place as a worker in the movement Hermann Reuter’s charisma had inspired. Here in Nomvalo, the nearest clinic did not treat AIDS, nor did its nurses want to talk about it. She was working almost entirely alone.

  I AM NOT sure whether MaMarrandi deliberately chose to visit her more troubling patients first—as if the course of our day together should serve as a metaphor for the progression of her work—but at the remaining homes we visited she was greeted like a hero.

  From Vuli’s place we walked through the middle of the village and back along the path on which we had started the day’s journey. We were still some fifty paces from the home we had come to visit when we saw a young girl standing at the fence and pointing at us. “MaMarrandi ukhona!” she shouted. “MaMarrandi is here!” By the time we came to the gate a family of five had put down their tools and assembled to greet us—there was a man, a woman, and three children.

  “Go and call your uncle Leonard,” the woman said to the young girl who had announced our arrival. “He will never forgive us if he does not see MaMarrandi.”

  Mats and chairs were brought out, and we sat together in a circle waiting for Leonard to come. There was no question of anyone getting on with their chores while MaMarrandi was here.

  Leonard, it turned out, was MaMarrandi’s patient, and the father of two of the three children. He was not from Nomvalo: until recently, he and his family lived in a village about sixty miles away. Illness had brought them here.

  The previous year, he and his wife had both become sick with AIDS. She had died very quickly, less than a month after she had first taken to her bed. The two children were packed off to live with an aunt at the other end of the province, and Leonard had been brought here, to his brother’s home, to die. MaMarrandi had learned that there was a sick man in the house, had visited him, and taken him to Hermann. That was a little over a year ago. He was now reasonably healthy and building a house with his own two hands some five hundred yards from his brother’s place. His children had been called from their aunt’s village to join their father at his new home. Having been scattered by illness and death, Leonard and his children were settling into Nomvalo.

  He crossed the lawn in front of us wearing overalls covered in plaster and paint. He shook MaMarrandi’s hand vigorously, then Sizwe’s, and then mine. Sizwe explained who we were and what we were doing here. He listened carefully, and when Sizwe was finished he took off his cap and began speaking with great formality.

  “My name is Leonard Noxaka,” he said. “My place is just across there. I live in Nomvalo because I was very ill and was taken here to the house of my older brother. It was expected that I would die. I am HIV-positive. Through MaMarrandi I began to take ARVs last year. One by one the sicknesses lifted until this day I am left only with one problem.”

  He pulled up his shirt to reveal a display of shingles welts running down his side.

  “The skin itches,” he continued, “and sometimes the itching goes below the skin and into the body. It is not nice.”

  He dropped his shirt back into place and put his arms at his side.

  “I am united with my children. A year ago, they thought they were orphans and were living with a woman who may have been their blood relative but was a stranger to them.”

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nbsp; He sat down and turned to MaMarrandi and in a long, steady stream began describing the state of his body, beginning with his head and ending with his feet. As he spoke, it became clear that there was nothing in particular to report to her: he was well stocked with drugs, reasonably healthy, and in good spirits. And yet MaMarrandi’s visit had been absolutely vital—of sufficient importance to bring this household to a standstill—in and of itself. It was as if describing the state of his body to her were as much a part of the treatment as the drugs themselves.

  As I sat listening to Leonard, an occurrence in my own life from more than a decade ago, one I had not thought of in a long time, came to me quite vividly. I was living in the southeast of England at the time and had resolved to give up smoking. Somebody told me of a doctor named Andrew Rutland who helped people quit smoking. I made an appointment with him and found a quiet, sullen man who dispensed almost no advice at all.

  “Give up on Monday morning,” he said. “And come back to me in a week.”

  I gave up that Monday, and the agony of the first few days was gnawing and torturous and utterly unrelenting: by Friday I thought I might go insane. I hung in there. I clung bitterly to the renunciation, and to the feeling that the renunciation was good for me, and the feeling took the form of an image of the silent Dr. Rutland planted in the front of my mind.

  I went to see him a week later and told him I had not smoked.

  “Good,” he said quietly. “Let’s make another appointment for three weeks’ time.”

  During the following months, the sensation of clean air moving through my lungs became ineluctably attached to the idea of Dr. Rutland. At times he seemed to have lost his corporeal form and taken his place in my very breath.

  MaMarrandi grabbed my wrist and spoke to me, interrupting my thoughts.

  “I am so pleased with this one,” she said. “He follows all the instructions. It’s a pleasure dealing with someone who follows all the rules.”