May 30, 2006
South African Diary: "Living With AIDS"
BY Thembi Ngubane
Twenty-year-old Thembi Ngubane.
Editor's note: Five million South Africans suffer from HIV, the virus that causes AIDS. This makes South Africa the hardest-hit country in the world. Fully three-quarters of new cases are girls and young women between the ages of 16 and 25. One of those women, Thembi Ngubane, agreed to record an audio diary of what it's like to live with HIV. Thembi, who is 20 and lives in Khayelitsha, a wind-swept township outside Cape Town, spent long hours reflecting on what it's like to have an intruder in her body and how her life has changed since she was infected. In collaboration with independent producer Joe Richman of Radiodiaries.org, FRONTLINE/World presents "Thembi's Story," in a format that is new for us, what we call a Direct Voice Dispatch.
Every morning when I wake up I run off to my drawer, take out the mirror and look at myself. Then I start to do my prayer. I say it every day, every time when I'm feeling angry, like how when you are angry at someone, you always have that thing inside you that you need to tell that someone what you feel. I say, "Hello HIV, you trespasser. You are in my body. You have to obey the rules. You have to respect me. And if you don't hurt me, I won't hurt you. You mind your business, I'll mind mine. Then I'll give you a ticket when your time comes."
I never thought I would worry about HIV and AIDS. It was the last thing on my mind.
I'm going to tell you how I was infected. I had this boyfriend, then we broke up. I went my way, and he went his way. A year later I heard that he died. When I went to his house, his family was gathered there. I said, "What happened? Was he shot? Was he stabbed?" His sister told me no, he was sick. I said, "What?" She told me he was very thin, and he couldn't talk, then all of a sudden he just lost a lot of weight. Then I asked her, "What if he had AIDS?" She said, "I don't know." That's when I started to get real worried.
I decided, OK, I'm going to go for a test. I went to the clinic. They bring all of the equipment in front of me and just prick all of my fingers. Then 10 minutes passed by. The counselor came back and said, "We need to have another one." He started to do another one and another one. They did all my five fingers, and I started to worry. I kept thinking, Why is he testing me five times? Then he said, "OK, now it's time for your report. When your blood looks like this" -- he pointed at the test results -- "it means you have the virus. You are HIV positive, and you've been positive for many years."
"When your blood looks like this" -- he pointed at the test results -- "it means you have the virus. You are HIV positive, and you've been positive for many years."
I just stared at him and said, "OK."
Now I'm considered stage 4. When you are stage 4, you are no longer HIV positive anymore. They say you've got AIDS.
The doctor told me I was very much at risk of getting sick. He said it's like swimming in a lake where you have crocodiles. You can swim for some time without getting bit, but if you stay for a long time, at some point you're going to get bitten.
For a few months, I stopped recording. I didn't want to hear my sick voice. I didn't want people to see me like this and hear me like this. I couldn't even look in the mirror -- the way that I looked, my face was sort of becoming like bones and dark, and my eyes were kind of big, and I was shaking. I couldn't walk. All the things that were happening, I thought they would never happen to me. And my boyfriend, Melikhaya, was very, very worried. He would plead with me to go to the hospital, but I didn't want to go. I was afraid of the way people were going to look at me. People would stare and start to point, "Look at her, look at her."
I just wanted to hide myself. Then my mother showed up. When she came into the house, she stared at me because the last time she saw me I was fine, and now I'm thin like this. Than she said, "Child, why are you like this?" I just looked into her eyes -- she was very afraid. I looked at her and said, "I don't think I'm going to live long." And she said, 'OK, don't worry. I'm going to take you to the hospital." Then she put me on her back and took me to the hospital.
Thembi prepares to record another radio diary installment at her home near Cape Town.
A few weeks later, I visited another doctor. His name was Dr. Abrams. He asked me how I was doing. I was coughing. I told him, "I have pains in my neck and in my head." He took some blood and looked for signs of infections. He tapped on my chest and told me it was dull and hollow in there. He told me I was too thin and very short of breath. Then he told me I needed to be on ARVs, to bring down the virus count.
I am very lucky to be in a community that supplies ARVS because in some areas they are not available. "ARV" stands for "anti-retroviral." Anti-retrovirals are medicines that help to fight the virus. You must take them for the rest of your life.
My boyfriend's name is Melikhaya. We live together. We've been together for two years. Everyone knows we are very close. If they see Melikhaya, they see me. He met me and I met him and that was it. I remember when I found out about my HIV status -- it was very painful to tell him. I thought, What if I've also infected him? Now I've ruined my life, and I've ruined everybody's life.
He doesn't want to blame me. He says that I didn't chase after AIDS. He tells me he loves me and to just be strong. And then he teases me: He jokes that my biggest fear is that if I die first, he'll find another girlfriend.
Now I have to tell you something that will come to you as a surprise. Melikhaya and I have a baby. Onwabo is almost a year old. She has many toys.
"I thought, At least I will have a child to leave behind, even if I die. And my family will see me in that child. I just wanted something to call my own, something to live for."
When the doctor told me that there were things they could do to help prevent the baby from being infected, I decided I wanted a baby.
Onwabo is fine. We gave her a drug called AZT when I was in labor. [By using AZT and other drugs and by not breastfeeding, the transmission rate can be reduced dramatically.] She's been tested, and she is HIV negative. At first I didn't want people to know that I was pregnant. I felt I didn't have the right to have a baby. I thought if I had a baby, maybe in the hospital they would arrest me. Sometimes I think maybe it wasn't the right thing to do, but I just wanted it so bad. I thought, At least I will have a child to leave behind, even if I die. And my family will see me in that child, everyone will see me in that child. I just wanted something to call my own, something to live for.
A pregnant Thembi with her boyfriend Melikhaya. Their child, Onwabo, is not infected with HIV and is now a year old.
The way that I care about Onwabo and the way that I love her makes me think about how my mother feels about me. My mother has clothed me, fed me, raised me and now, at the end of the day, she must also bury me. I was supposed to be the one to look after her. She had put me on her back when I was young, and now that I am an adult, she must again put me on her back. That is not right.
My parents don't live together. They live in different townships, but not far. My father is kind of an old-fashioned person. He doesn't know that I have AIDS. I haven't told him. I feel like I could tell the whole world, but not him. And now I feel like I've been hiding for so long, I just have to tell him because he's my father. I want him to hear it from me.
Here we are at my dad's house, and it is raining a lot. The roof of my father's shack is made of tin. I told him, "OK, Dad, before, in the past, there was no epidemic like AIDS, but now people are suffering from it. How do you and the other old people think about it?" He told me, "It's hard for us old people. You clothe the kid now, tomorrow the kid is dead." I told my father, "I have news. I was trying to tell you, but I just couldn't. But I don't want you to feel as if I am hiding something from you. Three years ago I was discovered HIV positive. I have AIDS. But everything is under control. I'm on ARVs. My health is fine. I'm going to the good doctors. So I don't want you to worry about anything. Just for you to know because it has been kept a secret for a long time."
My mother always said that you must be tough even if you are feeling hurt. You must not always be jelly belly, cry, cry, cry, cry. Telling my dad was one of the hardest things that I have ever done. But I didn't want to cry. He must see just a tough face. I wanted him to see that I was not afraid. That I was going to be OK.
It's been about a month now since I started on the ARVs. In about two weeks, I could walk and breathe and do things. So when I look back, I just think it was some sort of miracle or something. Let me see outside, what the day looks like. I'll show you around my neighborhood. It is a bright, beautiful day. People are starting to wash their laundry, putting it on the line. Music is coming from every house. I just love it today.
"In the past, our parents were suffering from apartheid. They wanted to be free. And now it is the same with HIV and AIDS. This is the new struggle."
My neighborhood is very crowded. There's this shack behind another shack. Or there's this house, and behind the house is a shack, and behind the shack is another shack. Noxola is one of my friends. She lives nearby. She was diagnosed HIV positive in 1999. She has two daughters. There are a lot of us here in Khayelitsha who are sick, but they don't disclose it because they are scared of discrimination. People do talk, do point, do whisper. Sometimes if they hear if someone is HIV, they burn your house down so you can't stay there anymore. In the past, our parents were suffering from apartheid. They wanted to be free. And now it is the same with HIV and AIDS. This is the new struggle.
Right now I am making a bottle for Onwabo. Now it's almost half past 10, and we are preparing ourselves for sleep. Goodnight. Where is the other blanket? She is already asleep. Melikhaya is already in bed. As always, I'm the last person to sleep.
I'm just imagining what this world would be like without me. I'm not scared of dying, but I'm scared of not being here. Leaving my baby behind. I just want enough time to see her grow a little bigger.
AIDS is not going to bring me down. I am the one who's got hands and feet and a mind. And it is only something that is inside my blood. So it will try to rule maybe inside, but outside I'll be the boss. I want to study further. I want to have a great job. There are a lot of things I want to get done.
I'm just going on with my life.
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Find out more about Thembi Ngubane's life and listen to her radio diaries, which aired in April on National Public Radio's All Things Considered.
The Age of AIDS
For a global picture of where we stand 25 years after AIDS was officially identified, visit the FRONTLINE Web site for an investigation into the science, politics, and human cost of this fateful disease, including what lessons of the past have been learned, and what can be done to stop AIDS in the future.