The silent killer
‘Confused and angry’ she signed off the letter written to a newspaper on the spur of the moment and in the old-fashioned way using a pen and a piece of paper.
The 59-year-old housewife, mother and grandmother, dropped it in the post box on the same day and hadn’t really considered what could happen should it be published.
One thing she did know. She had to find a way of coming to terms with the loss of her two-year-old granddaughter and 35-year-old son, who both died of AIDS-related illnesses a year ago.
‘Confused’, she explains, because her granddaughter died after much suffering and after numerous consultations with doctors and specialists who never considered testing her for HIV.
‘The one specialist said they never really thought to test her because she was white,’ she says almost whispering.
‘Angry’, she adds, because the deep denial and fear of stigma from friends and other family members has prevented her from talking openly about her son’s death which she believes could have been avoided had he been diagnosed earlier. At first she was prepared to identify herself but fears that family members would be angry have prompted her to remain anonymous for now.
‘I think the angry bit has a lot to do with the fact that now it’s as if he didn’t exist. Because in a way I can’t discuss it,’ says the angry mother, her blue eyes flashing.
Her letter appeared three days later, but went largely unnoticed. The letters’ pages for that week were filled instead with enraged letters from readers denouncing gay bishops and asking whether the Springbok coach should be axed.
It’s exactly this ‘unaffectedness’ on the part of the South Africans, especially white South Africans, that has fed into the vicious cycle of stigma, denial, ignorance and silence.
The media is often criticized for presenting the epidemic as a black disease, with black women and their children used to illustrate features and articles. Last year, a Human Sciences Research Council study found that six percent (about 300 000) of the about five million South Africans who are HIV positive are white.
This is considerably higher than countries with predominantly white populations such as the United States, Australia and France, where prevalence among whites is less than 1%.
White South Africans who have gone public about their HI status are usually gay men or one or two individuals who keep popping up in stories about the epidemic. Medical aids, accessed mostly by white people, have reported that many members are only diagnosed well after retirement, some in even their eighties.
‘It’s as if they never thought they could be infected. As if it never entered their consciousness,’ said a source.
The HSRC report recommended that white South Africans be made aware that it is not only mostly black women and children who are at risk.
The 59-year-old Cape Town woman is struggling to make sense of her son and granddaughter’s deaths.
‘It’s been just over a year’¦he’s gone and it’s as if he never lived. People have said I must not knock myself out over the whole thing, but if it hasn’t happened to you, you cannot get over it so quickly,’ she says.
Hers’, she says, was an average white, middle-class family. Her son was an artisan. He was married and had a son a daughter.
‘When my granddaughter was born, my husband and I went to see them. She was about six weeks old. When I picked her up I felt as if I was holding something delicate that wasn’t going to be here for a long time and I remember thinking there is something wrong with this child and I don’t know what,’ she recalls.
Her intuition was right. A few months later the toddler’s health deteriorated. She had classic HIV symptoms; thrush, weight loss, viral infections, colds, ear infections, loss of appetite, skin rashes and generally didn’t thrive.
The family traversed South Africa taking the child to top specialists and ending up at one of the world’s expert children’s hospitals. Each one failed to perform a simple HIV test. The toddler eventually died of a heart attack. Her HIV status was only confirmed after her death.
Afterwards her family slowly tried to piece their lives back together as best they could. Her son found a job, but it didn’t take long for the cracks to appear.
‘He phoned me and was so proud about the fact that he was losing weight. I attributed this to the fact that he was walking to work and back,’ she says.
But a few weeks later she received a distressing phone that her son had developed severe pneumonia and needed to be hospitalized. Instead she arranged for him to recover at her home.
‘When I saw him coming off the plane I just knew. He had a big, big sore on his mouth and he was so thin ‘ he just looked gaunt and sick. Okay, I thought, he had pneumonia, but AIDS went through my mind. I thought, it looks like he’s got AIDS,’ she recalls.
Her son stayed with her for two weeks before returning home. She remembers it as a stressful time especially because she could not ask him whether he might be HIV positive.
‘At one stage he flipped through my Readers Digest medical book and decided he had irritable bowel syndrome,’ she explains.
Her son returned home after two weeks, but a few days later she received a phone call that ‘changed my life forever’.
‘It was a Wednesday. He said, ‘Mom, I’ve got to tell you something. I have AIDS’.’
She now recalls that this was the last sensible thing her son said.
‘I wanted to collapse, my husband had to hold me up. I just knew it was the beginning of the end.’
A few days later her son was admitted to hospital and diagnosed with toxoplasmosis, a severe brain infection. He was given three months, but within two weeks he had succumbed to the disease.
‘I was with him when he died. He just didn’t wake up for about four days. He was on strong medication. He was in a lot of pain. He was like a two year old, he couldn’t eat properly, he couldn’t go to the toilet, and he was in nappies.’
She is now left with the pain after her son’s death, a pain exacerbated because no one wants to talk about how he died.
‘Yes, it’s hit me and my family, but it’s nothing to be ashamed of,’ she says defiantly.
The rest of her family explains his death by saying he died of a cancer. She is horrified when she recalls how her grandchild and son suffered.
‘It was cruel and if they had they just done that dammed blood test we would have known and they would still be here.’
She remembers her son as someone who was good with his hands.
‘He could fix anything’¦make a plan. He always said ‘Ah, I’ll make a plan. In the end he didn’t make a plan.’
She’s determined to keep the memory of her son and granddaughter.
‘You never forget. You put your child in your heart and he’s yours forever, he just never gets older. He stays there forever,’ she says.
If there is one good thing that could come out of her son’s death, she says, it is for white people to realize that they can no longer ignore or dismiss HIV/AIDS as ‘someone else’s’ problem.
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The silent killer
by Anso Thom, Health-e News
November 27, 2003