Charlotte's Web

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Sizwe’s Test

I’ve just finished this book by prize-winning South African journalist Jonny Steinberg in less than a day, and I have to confess I’m stunned by its vision, intelligence and compassion. Marketed in South Africa as The Three-Letter Plague (a title I prefer), Sizwe’s Test is subtitled A Young Man’s Journey Through Africa’s AIDS Epidemic. What Steinberg does is to follow two people – spaza shop owner Sizwe Magadla and Médecins Sans Frontières (MSF) doctor Hermann Reuter – during a two-year period in which the former tries to decide whether to test for AIDS or not, and the latter does his utmost to provide AIDS testing and treatment in Lusikisiki, one of South Africa’s poorest and most remote districts. What Steinberg does so well is to empathise with both men and the adversity that they face, so that, as a reader, I understood both Sizwe’s intricate cultural difficulties with acknowledging AIDS and Hermann’s Herculean challenge in ensuring adequate services for the poverty-stricken people of Lusikisiki.

A third character who Steinberg encounters during his visits to the area is self-appointed community health worker Kate Marrandi. Unlike the two men, Kate is not young. She is not rich like Sizwe (he runs a small shop out of his two-roomed house and is considering buying a car, which makes him a wealthy man in his village), nor highly-educated like Hermann, but she is singled-handedly getting the people of her village who are HIV-positive onto antiretrovirals (ARVs) and watching them come back to life. Kate’s success is due, much like Hermann’s, to the fact that she is an outsider. She is a Zulu, not Xhosa, and has stayed behind in Lusikisiki to serve the people after her devout husband has returned to KwaZulu-Natal to proselytize for the Jehovah’s Witnesses.

Sizwe, on the other hand, is not an outsider. He grew up in the village where he now lives. For him to take an HIV test and to live with the potential outcome of that would be a threat to everything he is: a self-made man, a father, a husband, a son. Throughout the book, Sizwe’s intelligence shines through. Steinberg says of him:

His interest in me was neither watchful nor suspicious; I had arrived from a world he knew little about, and he wanted to imagine the place I had come from. By the time we reached his parents’ homestead I liked him. He possessed a curiosity both rare and distinctive; one recognizes it the moment one sees it. It is the curiosity of a person who has no interest in confusing the boundaries between himself and others, who does not identify or envy too much.

Sizwe’s curiosity takes him along on Steinberg’s journeys through the district, sometimes as translator and sometimes as observer. His understanding of the function of ARVs grows and yet he remains reluctant to test. By testing and potentially being found HIV-positive, Sizwe will have to acknowledge his promiscuous past, he believes he would lose his business and not be able to support his family, and thus never be able to pay the bride-price for his lover Nwabisa and give their son his own name. While Sizwe understands intellectually that ARVs can keep the sick alive for many years, his culture provides an impediment to his taking the test.

Steinberg shows how Sizwe sits on the cusp between old and new: he sits between the peasant society his parents grew up in and the modern new world where technology can save lives, between poverty and relative comfort, between the traditional requirements of manhood and a new, more enlightened way. At one point, Nwabisa has to give up work to stay home and care for their child, and Sizwe agrees to pay her the salary she has lost, plus an extra 15%. This is a world where women are changing too. Steinberg describes a support group meeting for people on ARVs where women discuss loudly and in public the nature of female desire, complaining that they may not always have condoms to hand when they are in the mood.

Hermann Reuter’s challenge, on the other hand, is to entrench the services he designs so that when he and MSF pull out and hand over to provincial government, they will continue. His goal is to show that if you provide decent treatment, people will come and get it. His triumph does come: a few months after he leaves, the South African government decides that nurses can dispense ARVs, which means that people can receive their treatment in community clinics and not at far-flung hospitals. At the end of the book Steinberg says his goal was tell a story of AIDS treatment, and that there is no reason to see Hermann Reuter as emblematic of the quest to heal a country of AIDS, nor to see Sizwe’s reactions as typical of ordinary people. However, he couldn’t help seeing the two allegorically – a doctor and a potential patient in the theatre of a battle against a pernicious epidemic.

Sizwe’s Test reads easily and well. It is intimate in its insights, but broad in its perspective. I would strongly recommend it for anyone wanting to see the human side of the AIDS epidemic. I also recommend it for Jonny Steinberg’s superbly strong writing. The dust jacket calls it a “tour de force of literary journalism”, and it is.


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RIP, Tony Shelembe (A 30th Story of AIDS)

Today I am honoured to have my first-ever guest post. Please meet my new-found friend Daniela Gennrich. Daniela worked closely with Tony Shelembe, and nursed him at her home along with his fiance, Pretty, during his last hours. In this article, which was published on Saturday, 1 December in The Natal Witness, Daniela interviews people who knew Tony well, including his mother, his fiance and his daughter.

A True South African Hero
by Daniela Gennrich

The sister at the local clinic looks up wearily, and surveys the queue snaking out of the main door onto the road. It’s going to be another long day…

“Next…” A young man approaches. “Sawubona Sister”.
Yebo Boetie. What’s the problem?”

The somewhat sickly looking man explains that he has a persistent headache, and his abdomen is distended, or swollen. The sister puts on her stethoscope and listens briefly to his chest, takes his pulse and blood pressure, and sends him off with a small plastic packet with the word ‘Painadol’ written on it.

“OK – Next…”

A tired, careless moment, a missed opportunity to diagnose a life-threatening condition…

Just over a month later, Tony Shelembe became one of the death statistics for November 2007, one of the perhaps 1800 who will have died before the month is out.

But who was this man?

As I sat in his house the other day surrounded by his family and friends, the rain pelting down on the corrugated iron roof, I noticed a faded photo of a 14-year-old Tony, and asked people what they remembered about him. This is some of what I heard.

A grandson:
“I cannot eat when I think of my little grandson. Who is going to take of care of me when I am sick? Who is going to look after the cows and the goats for me? I should have gone before you. Who is going to bury me now?”

A son:
“I am Tony’s mother. Tony was very helpful, at home and in the community. He loved his children very much, they were very important to him, but all children were important to him. This is a very great loss. Everyone will miss him.”

“He was not talkative and didn’t fight. He loved to braai meat outside on a Sunday. He was often making jokes. One day when he was 14 and I still had a car, he just took it and drove away. But he was humble and just said ‘I am sorry, dad’. He could not resist driving!”

A brother:
“He was always there for me when we were growing up.”

A father:
“My dad was so kind. He did all the things I wanted. The best part was when he used to take us kids to go swim in the river. He bought me a bike for Christmas.”

An athlete and a role model:
“My dad was a marathon runner. He got three Comrades medals, and eight others for running. He won three gold medals for his soccer team.”

A community leader:
“He was a good leader. I always remember Tony with his smile. I remember the work he has done with us in the community since 2000. I remember when the committee was divided, and some wanted to follow Sthembile and others wanted to follow Prudence. And Tony said “No, this thing is too big, we have to continue the work, however scary it is”. And we have continued to work until now. The stigma is less, and more people come forward for help. Tony left us in the middle, but we know that God is there…”

“He was like a son to me, chatting about his future and where he wanted to go. He wanted to be an NGO director and quietly went about making it happen. Working day to day to make a difference, it was never about the money or the status, always about how things would change.”

A caregiver:
“He was not like other men. He helped orphans talk about their sadness, helped gogos looking after their grandchildren. How many men have that gift to give children?” (A community member)

“Tony used to come straight away when we called for help. He used to drive us to hospital when we were sick. But he was not like a taxi driver. He used to talk to us to help us not to be afraid.” (A gogo in the community)

“He helped me to take my medication correctly – what will I do now?” (Young woman in the community)

A friend:
“I remember his dedication. His respect for the young and the old, his smile, his tiny body, his funny caps and his good heart.”

“He was many things in one. He was there for everyone, mothers, children, friends. Whatever he put his mind to, it became possible. Even though things were a struggle he never accepted failure and always found a way forward. He never lost hope.”

“He was not afraid to confront you when things went wrong, to honestly work things out.”

A lover and a husband-to-be:
“I fell in love with Tony on the 9th August 2004, when we were both doing home based care training in Howick. One day he took me to uMngeni River and he told me he wanted to marry me. I did not agree. He begged me until I finally agreed. He has just finished paying my mother lobola (bride price) for me. We have started wedding preparations. Next month we were going to collect our rings at the jewellery shop, and we were paying off a bedroom suite.

Then he got sick. But he never gave up hope. I remember one day when he was very sick, he tried to get up and go to work. He loved his job.

He also loved talking with me about our future and our babies. I miss his smile. When he called my name, he said ‘love’. Everywhere I go he still goes with me. I wish someone could bring him back to me.”

His vision for his community?
I remember he said: “ This community is going to have a vibrant economy and there will be no more unemployment. And most of all, there will be no HIV stigma and we will be free. If I die, please don’t let anyone say it was nthakathi (witchcraft). Tell them I was just sick.”

The Hilton Valley Committee chair has committed to continue working to fulfil his vision. Even though they have very little funding, they have vision and they have hope.

So, who was this man, passed over so easily by the Health System?

The answer is best summed up in the words of his daughter Luyanda, as I was bringing her back from shopping yesterday, when she saw Tony’s cousin in the distance: “Look, look! Daddy IS here! … Oh no, sorry – I forgot ….”

******************************************************************
Tony’s memorial service was today. My mother baked scones and with Daniela, collected Tony’s family and drove them to the community hall where the service took place. She said many people spoke, and she was deeply moved by the beautiful singing of African hymns, where one voice begins and then others join in in parallel harmonies. She met all the people who loved Tony and who mourn him so deeply.

My Toni was also relieved to hear that Tony’s community are going to try to help Sambeka, who lives 10 kilometres away and who was one of the many people with AIDS that Tony was helping. Community members will drive her to the clinic so that she and her baby son get the treatment they so desperately need.

I am gaining faith in the amazing networks built by ordinary people who find the compassion in their hearts to help each other. But it is nevertheless a tragedy that such a wonderful man had to die because the health system was too overwhelmed, overworked and weak to save his life.


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Today, Our Tears Flow

In my Sunday post, A 29th Story of AIDS, I wrote about a young man, Tony Shelembe, who was the last person still working for the nearly defunct uMngeni AIDS Centre (uMAC)*. His particular mission was to counsel children bereaved by AIDS, but he also assisted sick people by driving them to clinics and acquiring the documentation they needed in order to get ARVs. He was a gentle, humble man whose first thought was always of the children. Tony died last night of TB of the liver.

Tony was on ARVs, but his TB was not diagnosed until last week, when it was too late. In a visit to hospital two weeks ago, his stomach was drained of liquid but no-one ran the tests to check for TB. Had they done so, there might have been time to get him on the right medication and save his life. My mother’s neighbour, who nursed Tony alongside his fiancé, Pretty, said no painkillers were able to alleviate his pain. Towards the end, they managed to get a prescription for morphine, which helped him. He had a two-hour sleep, and died shortly after waking up.

Tony Shelembe’s death was tragic, and unnecessary. He, of all people, was doing everything in his power to combat AIDS and its terrible ramifications for individuals and society. Today, we mourn a true South African hero.

We cry for Tony’s family, Pretty and their 10-year-old daughter.
We cry for the uMngeni AIDS Centre.
We cry for Sambeka, so recently a recipient of Tony’s warmth and help.
We cry for all the other people living with AIDS who relied on Tony.
We cry for all the people who will now say, “Look at Tony. ARVs didn’t save him. Why should I bother?”
We cry for the children whose parents have died who no longer have Tony’s visits to look forward to.
We cry for hospitals that don’t test people for TB because they look like just another walking skeleton.
We cry for a government that doesn’t appear to care.
We cry for a health minister who says eat beetroot and garlic.
We cry for all the people who turn their backs on this terrible crisis as a means to protect themselves when they could just help one person.

To those South Africans, I say please open your hearts. Please just help one person.

* Special thanks to all those who have offered to donate money to help Sambeka and the uMAC. If anyone else would like to make a donation, I can send you the email address of Dan le Cordeur, a Catholic priest who works with people with AIDS and volunteers for uMAC.


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A 29th Story of AIDS

This is my mother’s story, so I’ll let her tell it in her own words. Meet Toni:

“I was driving through the village to my bridge class when I saw an old gogo (grandmother) with a baby on her back. The baby seemed to be slipping out of the blanket and looked as if it was going to fall, so I stopped my car. I ran across the road to tell her, but when I got to her, I realised she was not an old lady but a child.

I could see she was very sick. I asked her how old she was and she said, ‘Seventeen’. I asked her where her parents were and she said, ‘My parents are dead’. I asked her who she lived with and she said, ‘I live with my aunt. She does not like me.’

I began to cry. My heart just opened and I wept. She said, ‘Please don’t cry.’

Then I asked her where she was going and she said, ‘To the clinic.’ I drove her to the clinic, and then I told her I would come back and fetch her. I drove to my bridge class to tell them I wouldn’t be joining them and I told them why. They told me the only thing to do is to turn your back and walk away.

I knew I couldn’t do that, so I drove back to the clinic and saw Sambeka sitting, feeding her baby. She seemed to be smiling, but then I realised she was grimacing with pain. Every breath hurt her and she could hardly hold her four-month-old baby. Her arms were too weak. The clinic sisters seemed kind but overwhelmed. They told me Sambeka was the tip of the iceberg. They also told me not to cry in front of her. They were waiting for results of a blood test, so all they could give her was porridge to take home and formula for the baby. They said that she was too sick to walk.

I told her I would drive her. On the way, I stopped at home and gathered everything I could find – food, cooking utensils, money, blankets. Then I took her home – to a small, two-room RDP house (RDP stands for the goverment’s Reconstruction and Development Plan) where she lives with her aunt and her three children, who were all semi-naked. It is a twelve kilometre journey from the house to the clinic. Sambeka would have had to take a taxi (a minibus used for public transport), crammed with people and then walk part of the way. It must have been such a struggle for her to get there.

I went home and phoned my neighbour who is involved with AIDS organizations in the area. She told me about the Umngeni AIDS Centre and a young man called Tony Shelembe, who helps people with AIDS and counsels children bereaved by AIDS. I phoned Tony and arranged to meet him to find out what else could be done for Sambeka. He asked some details about her and where she lived, and before we met up, went to visit her. I also went shopping and bought clothes for all the children in the house, and more food.

I collected Tony and he told me he was taking me to see Dan le Cordeur*, a Catholic priest, who also volunteers for the Umngeni AIDS Centre (UAC). Dan said that the UAC has had to close down because donors don’t want to pay for administration. The eight UAC employees are now jobless, except for Tony. They have managed to find R700 (€70) a month to pay his salary.

Tony and I then went to see Sambeka. He told me he had already applied for a birth certificate for the baby and ID for her. While I was away, he was going to take her to the Howick Clinic (20km in the opposite direction) to try to get her on ARVs.

Sambeka is dying. Unless she can get on ARVs immediately, her baby will be orphaned, with only a reluctant great-aunt to look after him. I don’t know what to expect when I get back. She might be gone, she might already be on treatment.”

I have a photo of Sambeka, taken by Toni. I thought briefly about posting it but I decided I didn’t want to without her permission. She holds her baby son propped up on her lap so that the camera catches his little face as well as hers. The camera doesn’t show the lesions on her chest and around her mouth, but it does show the devastating hope in her eyes.

Sambeka does not want to die. She does not want to orphan her child. But unless Tony and the UAC can help her cut through South Africa’s red tape, get her to a clinic – no mean feat now that she’s so sick – and help her access those ARVs that she so desperately needs, she won’t make Christmas.

* If anyone would like to make a donation to keep the UAC above water so that it can help people with AIDS like Sambeka, I can provide you with Dan’s email address