Looking up from her books with sparkly eyes and a cheeky smile, the HIV-positive teenager tells VOA, “Death is the last thing on my mind. I’ve big plans for the future….”
She gives her name as “Bernice Sathekge” – a real girl with a fictitious name given to reporters to protect herself and family from what is still the social taboo of HIV/AIDS.
Bernice is accustomed to breaking moulds and defying clichés. She’s been doing it since she was a few months old when doctors told her mother, Joyce, “Sorry ma’am, but your baby is not growing. She has a killer disease. She won’t live very long….”
Bernice is now almost 16 and a top student and champion athlete at a high school in the South African capital, Pretoria. She’s also one of more than five and a half million South Africans living with HIV.
Tuesday, on World AIDS Day, with elaborate events to commemorate the occasion across the globe, Bernice is focused only on an upcoming exam.
Not your average HIV+ family
In 1994, Joyce Sathekge unwittingly passed HIV on to Bernice, probably at birth or during breastfeeding. The mother didn’t know she had the virus.
“I thought I was safe from HIV. I was educated. I was working for one of the world’s biggest NGOs. But I didn’t know my husband was sleeping around. He died of full-blown AIDS in 1999,” Joyce recalls.
The Sathekge family’s not typical of most South Africans who are HIV-positive. They don’t live in a shack in one of the country’s enormous impoverished townships. They live in a comfortable, three-bedroom home in a middle-class suburb. Their friends and neighbors are businesspeople, teachers and civil servants. They’re literate and articulate. They have a steady income. Poverty and a lack of education, often cited as key drivers of the epidemic, don’t apply to the Sathekges.
“We’re a lesson for everyone who thinks HIV/AIDS only affects the poor. We are as middle class as can be, yet here we sit, HIV-positive and having to eat pills every day to stay alive,” Joyce says.
Horrible side effects
Sitting with her friends on the tomato red plastic chairs of a fast food restaurant, picking at hamburgers and joking about “stupid” teachers, Bernice acknowledges she’s on a “desperate” quest for normality. She indeed appears to be an average suburban teenage female - complete with girly giggles, gushes about “hot guys” and constant moaning about schoolwork.
But every night of her life, at precisely nine ‘o clock, Bernice is reminded that she’s not normal, and never will be. That’s when she pops two large, beige and sky blue tablets into her mouth and washes them down with a glass of water. Bernice swallows hard - and laughs. But her humor disguises her disgust. The medicine lines her mouth with a bitter slime. It makes her nauseous, gives her “very bad dreams” and makes her so “dizzy” she can’t stand.
The pretty girl’s been taking antiretroviral (ARV) treatment for more than a decade, since she was four years old. If she didn’t take the pills, Bernice would probably contract a serious infection and die. She’s grateful that she’s one of the relatively few HIV-infected South Africans with access to the life-prolonging medication. But she still “hates” the ARVs.
“I’m absent a lot from school because of the pills’ side effects,” Bernice says, and then hastily adds, “I don’t blame my mom, I don’t blame my dad; I don’t blame anyone [for my HIV-positive status]. You just get the feel of it and it becomes part of you in a way. Then you have to live it and understand it.”
‘Terrified’ of people finding out….
But Bernice clearly carries the mental scars of her condition. She still blanches with embarrassment when remembering a classroom incident a few years back, when she was about to write a mathematics test.
“I had taken my pills the night before. I’m sitting there thinking, ‘I’m going to fail; I’m going to fail.’ And the thought of me failing and the thought of me drinking the tablets, making me dizzy, just caused me to throw up on my exam paper.”
At the time Bernice was “very frustrated” because she couldn’t tell anyone the “truth” about why she’d been sick…. Only a few of her trusted friends and teachers know she’s infected with HIV, and she says she’s “terrified” of others finding out. Bernice lives in a country where discrimination against people living with HIV/AIDS is rife.
“There are some mean people in school,” she says, her voice shaking. “They call those with HIV dirty, they say they have no morals, they say, ‘These HIV people are being punished by God for sins….’” Her voice trails off into a sigh. “What sins have I committed?” she asks.
Bernice is sometimes tempted to challenge prejudice but fears that doing so would expose the fact that she’s HIV-infected – something she doesn’t think she could manage. “I’m very easy to break down, actually. I’d want to leave the school (and) probably leave the country,” she says.
So, to preserve her secret, when Bernice hears youngsters making discriminatory jokes about HIV infected people she laughs along with them…. Something she says “hurts terribly.”
“There are people who can’t accept (HIV/AIDS). They don’t understand it. They’ll be scared of me. I don’t want people to be scared of me,” Bernice says, her eyes glistening with tears.
But she refuses to use HIV as “any sort of excuse” for not doing her best to excel. Bernice will soon graduate to grade 9, and has been among the top five students since the first grade.
She’s also one of her school’s leading swimmers.
“It all started in grade four when my teacher just threw me in the pool!” Bernice laughs. “And then I just actually swam, and I forced myself [to swim]. And then from there I just became a good swimmer.”
At the most recent interschool gala, she won all her races, but she acknowledges such excellence isn’t the norm.
“Sometimes I am so tired from the virus I can’t even make a single length. It weakens you, definitely,” she says. “I am sure I would be a much better swimmer if I wasn’t HIV-positive.”
At least two and a half million South Africans have so far died from AIDS-related infections. Bernice realizes that if she doesn’t look after herself, and if she doesn’t take her ARVs properly, she could add to this number.
But she says she does her best not to think about death, even though AIDS fatalities are “all over the news” every day in South Africa. “I don’t really want to think of that because if I do, then I know I’ll be scared. I’ll be freaked out; I won’t even want to take my tablets. So I concentrate on life.”
And she dreams of the future.
“At first I wanted to be an archeologist, but now I want to be some sort of a counselor, like a psychologist.”
On the question of whether she wants to marry and have children one day, Bernice becomes shy.
“I don’t know! Possibly,” she says.
Four years ago, Bernice’s mother gave birth to another baby girl. The child is HIV-negative, because Joyce Sathekge took the necessary precautions, including ARVs, which were also given to the baby.
“That gives me hope that maybe I will also be able to have kids one day,” Bernice says.
She’s also been thinking about talking more publicly about her HIV-positive status and her struggles. Bernice is convinced that the more public examples like her, of middle class people living with HIV/AIDS, the better.
“People still think it’s just poor people who get HIV/AIDS…. Maybe I could save a life if I spoke out, in public. Maybe I’ll do it when I am more mature,” Bernice says.
Right now, though, she’s focused only on passing to grade 9, where further challenges await. Bernice says she’s ready to meet them.
“Life is short, for everyone,” she says. “We must live as much as we can. Whether we are HIV-positive or not, life is a fight to survive….”