Out of Hiding, Into the World: Thembi's AIDS Diary Thembi Ngubane lives in one of South Africa's largest townships. She has a boyfriend and a close relationship with her mother and father. She is also living with AIDS. For a year, she recorded a diary that brings listeners into her home, among her family, to witness her daily struggles and triumphs.
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Out of Hiding, Into the World: Thembi's AIDS Diary

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Out of Hiding, Into the World: Thembi's AIDS Diary

Out of Hiding, Into the World: Thembi's AIDS Diary

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From NPR News, this is ALL THINGS CONSIDERED. I'm Robert Siegel.


And I'm Melissa Block.

No country in the world has been harder hit by AIDS than South Africa. About five million South Africans are living with HIV. Thembi Ngubane is one of them. She lives in the township of Khayelitsha, outside of Cape Town. It's one of South Africa's largest shantytowns, a sprawl of houses and shacks made of wood planks, tarpaper and sheets of tin.

Thembi was 19 when she first met radio producer Joe Richman. He gave her a tape recorder and for the past year, she's been keeping an audio diary of her life. This is Thembi's story.

THEMBI NGUBANE: Testing, one, two, one, two. Test, test, test. Okay. Hi, this is Thembi. It's time for my prayer. Every morning, when I wake up, I would run off to my drawer, take out the mirror and look at myself.

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.


NGUBANE: I never thought I would ever worry about HIV and AIDS. It was the last thing in my mind.

Okay, right now, I'm at the doctor's office.



Unidentified Man: Hello.

NGUBANE: How are you?

Man: I'm fine, thank you. How are you?

NGUBANE: I'm feeling great.

Man: You feeling great, no problem?

NGUBANE: Yeah, I'm fine, no problem.

Man: Okay, let me just take your weight.

NGUBANE: I've known that I'm HIV positive for two years. I'm considered stage IV. When you're on stage IV, you are not HIV positive anymore. They say you've got AIDS.

SIEGEL: I see your CD4 count — you know what it is, huh? CD4 is an indication of how good your immune system still is.

NGUBANE: Yes, I know.

Man: It was 167 --


Man: — in March of this year.


Man: You know it's going down all the time.


Man: Yeah? And when you are below 200, it's dangerous for you.

NGUBANE: Yes, I know. I was very surprised to know that my CD4 count was below 200, it was 167. And, at the same time, I've never been sick.

Man: You are very much at risk of getting sick. It's a bit like swimming in a lake where you have crocodiles, yeah? You can swim sometime without getting bitten, but if you stay swimming a long time, at some point, you gonna get bitten.

NGUBANE: Okay, I understand.

Man: You sure?

NGUBANE: Yeah, I'm sure. Thank you.

Okay, I'm going to tell you how I was infected. I had this boyfriend and then we broke up. I went my own way, he went his way. A year later, I heard that he had died. When I went to his house, his family was gathered there. I said, what happened? Was he shot or was he stabbed? So his sister told me no, he was sick. I said what? She said he was really 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 very worried.

So I decide, okay, I'm going to go for a test. I went to the clinic. They bring all the equipment in front of me and just pricked me on my finger. Then 10 minutes passes by. The counselor came back. They say, 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. Because I thought, hey why is he testing me like five times?

Then he said, okay, now is time for your report. He said, you know, when your blood looks like this, it means you have the virus. You are HIV positive. And you've been HIV positive for many years. I just stared at him. I said okay.

And now I'm at home.

MELIKHAYA: (Speaking foreign language)

NGUBANE: Oh, hi! (Speaking foreign language)

This is Melikhaya, my boyfriend. Say hi.


NGUBANE: I was telling them how cute you look.

My boyfriend's name is Melikhaya. We live together. We've been together for two years.

Okay, play.


NGUBANE: Melikhaya's obsessed with music.

NGUBANE: (Speaking foreign language)


NGUBANE: (Singing in foreign language)

We are very close. Everyone knows we're very close. If they see Melikhaya, they see me. We are always together. He met me and I met him and that was it.


NGUBANE: (Singing in foreign language)

I remember when I find out about my HIV status, it was very painful to tell him. I thought, hey, what if I've also infected him? Now I've ruined my life and I've ruined everybody's life.


NGUBANE: Melikhaya?

MELIKHAYA: (Speaking foreign language)

NGUBANE: Do you ever wish that maybe we were — you would never have met me?

MELIKHAYA: No. Just because, the only thing is that I love you. You know that.

NGUBANE: Yes, but I'm the one who's infected you.

MELIKHAYA: I don't want to blame you because you didn't chase after AIDS. You didn't go on top of the mountain and said you want to have AIDS, you know? And I don't want you to blame yourself. Just be strong.

NGUBANE: Okay. For me, what scares me most is that I think we are not going to die at the same time if we die.

MELIKHAYA: I know that you think if you die first, I'm going to have another girlfriend.

NGUBANE: No nothing like that. No I'm not thinking about that. Well, I'm thinking that if one of us dies, how would it be? At least if we were going to die --

MELIKHAYA: (in unison) — die at the same time.

Give me a kiss for that.


ABRAMS: Hi, Thembi, my name is Dr. Abrams. How are you doing?

NGUBANE: I have pains here, in my neck and head.

ABRAMS: I'm just going to take your blood, all right? I'm just going to examine you now for any other signs of — any other opportunistic infections. I'm just opening your mouth. I'm looking for thrush on the tongue, which isn't. Okay and now I'm just going to have a listen to your chest.


ABRAMS: So you can hear it's more dull on the right-hand side. Fluid in the lungs, covering the whole lung. Okay, can you sit over there? You're very thin, very short of breath. You need to be on antiretrovirals.


ABRAMS: You do need the ARVs to bring up your CD4 count, to bring down the virus. All right.

NGUBANE: Testing, one two, one two. This is Thembi again. It's been a few months since I've been talking to you. The reason that I didn't record was that 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 are sort of becoming bones, you see, 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, he was very, very worried. He would plead me to go to the hospital. I just wouldn't want to go. I was afraid of the way that they were going to look at me and point, look at her, look at her. She is so small. I just wanted to sit home and hide myself in the bed.

Then my mother showed up. When she came into the house, she kind of stared at me. When the last time she saw me, I was fine, and now, I feel like this. Then she said (unintelligible) and that means, my child, why are you like like this?

I just looked into her eyes, so afraid. I just looked at her, and I said, I don't think I'm going to live for long, and she said, okay, don't worry, I'm going to take you to the hospital.

Then she put me on her back, and she took me to the hospital.

Oh, hold on a minute.


SIEGEL: 00 a.m. and at 9:00 p.m. When it rings, I take my ARVs. I'm very likely to be in a community that supplies ARVs because, in some areas, they aren't available. ARV stands for antiretrovirals. Antiretrovirals are medicines that help to fight the virus. Must take them the rest of your life. Okay. I swallow them. I wish I didn't have to do this.

It's been about a month now since I've gotten ARVs. In two weeks time, I could walk and breathe and do things, so when I look back, I just think it was some kind of miracle or something. Let me see outside what the day looks like. I'll show you around my neighborhood. It's a bright, beautiful day. People are all out starting to wash their laundries, putting them on the line. Music is coming from every house, I just love it today.

My neighborhood is very crowded. Mostly people live in shacks. There's this shack behind a shack or there's this house behind a house, there's a shack behind the shack. There is another shack. A lot of people, and now, here's my friend.

(Speaking foreign language). Later, bye, bye.

(Unintelligible) is one of my friends. She lives nearby. She was diagnosed with HIV positive in 1999. She has two daughters. There are a lot of us who are sick, but the people don't disclose because they are scared of this condition.

People do talk, do point. People do whisper, and sometimes, if they hear that someone is HIV, they burn your house down so you can't stay there anymore. In the past, our parents were suffering from (unintelligible). They wanted to be free, and now it is the same with HIV AIDS. This is a new struggle.

Knock, knock. Right now, I am at my mother's house.

This is my mother.



NGUBANE: Well, I have to tell something now that will come to you as a surprise. My boyfriend, Melikhaya, and I have a baby. This is Onwabo. She's almost one year old. She's got many toys, and this one is her favorite. It makes a sound like this. I know what people might be thinking, but Onwabo is fine. We gave her drug called AZT when I was in labor. She's been tested and she's HIV negative. Isn't that true, Onwabo? She says yes, it's true.

I didn't want people to know that I was pregnant. What I thought was I didn't have the right to have a baby. I thought maybe if I had a baby, maybe in the hospital, they are going to arrest me. Sometimes, I think maybe it was not the right thing to do, but I just wanted it so bad.

Do you understand why I wanted to have a baby?

NGUBANE: My daughter, I did understand, but can you explain to me?

NGUBANE: Okay, I felt like I needed to have something that I can live for, something that I can call my own.

NGUBANE: You didn't care you have me?

NGUBANE: No, you are old!

And you are my grandmother's baby, so I wanted my own.

The way I care about Onwabo and the way that I love her, it makes me think about how my mother feels about me. My mother has clothed me, feeded me, raised me, and now, at the end of the day, she must also bury me? I was supposed to be the one that is going to look after her. She had put me on her back when I was young, and now that I'm old, she must also 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. It's like, to him, I'm this child. He really adores me, but my dad doesn't know that I have AIDS. I haven't told him. I felt like I could tell the whole world, but not him, and now, I feel like I've been hiding it so long, I just have to tell him because he's my father. I just want him to hear it from me.

Here we are at my dad's house, and it's raining a lot. This is my father's shack. The roof is made with tin. You can hear it when the rain sounds so loud.

NGUBANE: (Speaking foreign language)

NGUBANE: He has just asked me whether I'm going back to school. Yes, I'm going to go to school next year.


NGUBANE: Okay. Dad?


NGUBANE: Before, in the past, there was no epidemic like AIDS, and now, people are suffering from it, so how do you and the other old people think about it?

NGUBANE: Okay, it's hard for us, we old people. You grow the kid up now, tomorrow, the kid is dead. You see? That's why I get angry of this disease. Was not a problem before, but now, it's become a big problem. Jesus.

NGUBANE: Okay. I have news that I have to tell you. I will try to tell you, but I just couldn't yet. I just couldn't, but I just, I don't want you to feel like I'm hiding something from you.

NGUBANE: Okay, my kid.

NGUBANE: Okay. Three years ago, I was discovered HIV positive. I have AIDS.

NGUBANE: Oh, my.

NGUBANE: But everything is under control. I am on ARVs. My health is fine. I'm going to the good doctors, so I don't need you to worry about anything. Just for you to know. It's helping. I kept it a secret for a long time. I felt like I have disappointed you. I thought that it was going to break you into pieces. How do you feel?

NGUBANE: I feel hurt, you see? But what can I do? I have to accept it. What can I do? Okay, I'm okay.


My mother only said that must be tough, even if you are feeling hurt inside, must not only be (unintelligible), cry, cry, cry, cry, cry. Telling my dad was one of the hardest things that I've ever done, but I didn't want to cry. He must feel just tough it is. I just want him to see that I was not afraid and that I'm going to be okay.

Right now, I'm making a bottle for Onwabo. This is her second bottle. Okay, now it's almost half past ten. It's night, and we're preparing ourselves for sleep. Good night. Where's the other blanket? She's already asleep. Melikhaya is already in bed. As always, I'm the last person to sleep. I'm just imagining what this will 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.

You are awake now?

AIDS is not going to bring me down. I am the one who's got hands and feet and mind, and this is only something that is inside my blood, so which will try to rule maybe inside, but outside, I'll be theboss. I want to study (unintelligible). 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. I'm just going on with my life.


SIEGEL: Thembi Ngubane's story was produced by Joe Richman of Radio Diaries. The editors were Debra George and Ben Shapiro.

BLOCK: Thembi shares her thoughts on keeping an audio diary at our web site, NPR.org. You can also find out where you can hear her speak during her tour of the U.S.

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