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Thembi Ngubane

August 3, 2008

By Erika Nelson

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This podcast is a part of the series This Positive Life. To subscribe to this series, click here.

Thembi Ngubane

About Thembi
Age: 23
Home: South Africa
Diagnosed: 2002

When she tested HIV positive in 2002 at the age of 16, Thembi Ngubane of South Africa scarcely had an idea what HIV meant. Now 23, she is one of the foremost HIV activists on the planet. She received worldwide recognition in 2006, when National Public Radio featured a stunning audio diary she kept in 2004 and 2005. Here at the XVII International AIDS Conference, she has been a near-ubiquitous presence, giving speeches and even co-chairing a major session on the state of the HIV pandemic. And did we mention that she has a 3-year-old, HIV-negative daughter? We were fortunate enough to have the opportunity to sit down with Thembi and hear her incredible story.

Can we start by hearing the story of how you found out that you were positive?

I tested HIV positive in 2002. I was 16. The reason why I went for an HIV test was because my ex-boyfriend at that time had gotten sick in the past few months, and then he died. No one would tell me why he died. No one would tell me what he had. I felt it was my responsibility to actually find out for myself if he did have HIV or AIDS. The only thing to do, was for me to go for an HIV test.

You didn't know for sure that he died of an AIDS-related illness?

I didn't know for sure, but when I saw him when he was sick I could see the symptoms. At school they used to tell us that if a person is sick, if he has HIV, you could see the symptoms when the immune system is very weak. The person would lose hair; the person would get so thin. He had some of the symptoms, but I was not sure because I was not very well-informed about HIV.

What happened when you went to get tested?

It was scary, because of my being healthy and looking healthy, yet suspecting that I might be HIV positive. It didn't seem real. Also, because I wanted to prevent so many things: I didn't want to die, I didn't want to get sick, and I didn't want people to know. It was a matter of going and finding out for myself and keeping it to myself.

When I was told that I was HIV positive, I could not believe them. I kept on asking them, "Why do I have HIV? Why do I still look healthy? Why am I not thin? Why am I not sick? Why am I not feeling sick? I feel normal and I look normal. Why do I have HIV?"

It was very hard for me to accept, but the reality was there. It was either accept it and take responsibility, or ignore the fact that I had HIV.

When you went to get tested, did you go all alone?

Yes. I went alone. It was not planned. I didn't plan it. I was just curious, because at that time in Khayelitsha it was 2002 and they just opened a loveLife youth center. I wanted a reason to go inside, but I didn't want people to see me. Because if people saw me go into loveLife, they would think that I'm having sex.

It was very hard for me to go there. Since I was alone, I thought, "Why don't I just sneak into loveLife?" So, I was sneaking around in there and just taking a tour. It was too much for me, because I could see condoms. I was like, "Oh man, condoms -- in front of these people? There are old people here."

I felt like maybe people here understand. I thought, "Let me ask if they can do an HIV test." Lucky for me, I met someone that I knew who has HIV and he was a counselor.

I asked him if I could have an HIV test. He asked, "Why do you want to have an HIV test?" I said, "At school they tell us that if you ever, ever, ever have sex, you must have an HIV test. So I thought, why not?" [Laughs.] But I was covering the whole thing up!

loveLife is a clinic or a center? What is it like?

loveLife is a youth center. It does many different things: you go for birth control; you go for checkups for STDs [sexually transmitted diseases]; you go for HIV tests and they then refer you to the nearest clinic; you go there for counseling; and you go there for sex education.

What happened when you got the news? Who told you and what happened?

The counselor told me. He first explained the procedure and everything. I was just sitting there, just rolling my eyes and thinking, "Well, you can say whatever. I don't look sick, so I'm not."

So poof! The news was "You are HIV positive." I argued with him for 10 minutes. I argued with that guy. I mean, I argued with that guy. I really wanted an explanation. I ended up believing, no, I'm not sick. These people are just trying to scare me. What the hell? I don't look sick. These people are just trying to scare me.

But as soon as I got out of the center, I was starting to hit reality. I was facing people, and I felt like everyone could see that I was HIV positive. I felt like I was losing weight at that moment. I felt like I was going to die tomorrow. Everything just came so quickly. It was like an earthquake!

I panicked. In my panic, I felt I had to tell someone. [Laughs.] Sometimes I think back and I'm like, I did a stupid thing: I have just gotten tested and I'm confused, and then, poof, I go and tell my boyfriend. But I thought he was in danger. I thought, "If I really am HIV positive and my ex-boyfriend didn't tell me he had HIV, and now I have HIV, what about Melikhaya? I owe it to him. I have to go and warn him. I have to go and tell him. He must go for an HIV test to see what's going on."

There I was. I went to him. Lucky for me, we met on the way. I said, "I'm coming from loveLife."

He was like, "loveLife? What are you doing in loveLife?" Because people who go to loveLife are people who have STDs and who go for birth control.

I said, "No, I just went for an HIV test."

"And?" he asked me.

"They say I'm positive."

Then he laughed it off. He said, "Come on. You don't look sick. You know what a person who has HIV looks like. You are not that sick, I mean come on. They are wrong, you know? They're just trying to scare you!"

That was it. I felt like it's not a big deal. Why should I make it a big deal? I just went home. I must put it behind me. I must forget about it. I went home and I didn't tell anyone up until I returned to Melikhaya's place to find out that he had told everyone in the house. He just turned over and was like, "Did she just tell me that she has HIV? I mean, HIV causes AIDS. Oh my God! She's going to die and I'm going to die!"

There he was telling his mother that both of us are going to die because I tested HIV positive. It was a drama of the year! It was a drama. They all wanted to kill me, if I can say so, because at that time no one understood. I also didn't understand. I wasn't even sure if I was going to make it. I was just defending myself. I'm not going to die. I'm going to go to the clinic. I'm going to get something. There must be something that can be done. But I was only saying those words just to stop them from saying all those things about me.

Did Melikhaya go and get tested at that point?

After this drama with me being HIV positive, his family actually called me and they separated us. They said we must break up. We broke off, but I said to him, "I don't mind our relationship ending, because I also have a choice. If I wanted to date someone that has AIDS and I don't have AIDS, I would also think twice. But you don't even know whether you are HIV positive. The only thing that you can do for yourself, and for me as a favor, is to go and have an HIV test."

I don't care about our relationship. We can break up because HIV is not going away from me. We broke off and he went for an HIV test. Luckily, he tested HIV negative. He later came to the support group and I was so pissed because the support group is for people that have HIV. He was coming from school and he came with all these pamphlets. I didn't know what he was doing there, because he probably didn't have HIV and yet there he was. I thought that maybe he had come here to rub it in.

He comes, and he's like, "Thembi, I just went for an HIV test and I tested HIV negative. I'm sorry I didn't understand at first. I panicked. I've read about HIV. I went to counseling and I understand that you are not going to die."

I had all this information that he was picking up the whole week at the libraries and putting one and one together. He asked for me back and I was like, okay. But I said, "You know, you're negative and I'm positive. It's not going to work, but let's try." [Laughs.] So we tried. But he told me that he was in the window period. They say that he's HIV negative, but he must go back again to see because the virus sometimes gets into your blood and hides.

He went again after three months and he was HIV positive. His family said, "You were HIV negative and you went back to her! You went back to her to take the virus! You come back, and now look at you, you are sick!" No one understood. But we understood because we know how HIV works. We understood that he had HIV maybe before I even met him.

You can never tell, you know. You never know who has it and who hasn't. You never even know how long you have had it up until you go for an HIV test. It was a matter of, "I don't blame you, Thembi. I don't blame myself, because I was in a relationship before you. It's not like just because you tested HIV positive before me that I'm going to blame you. It's not like that."

Ever since then, we tried to convince our families and educate them. My family didn't have a problem at all. My mother is Christian. It's interesting, because my mother is Christian and my grandmother is a traditional healer. I come from a really interesting family., and I am strictly science. I'm strictly science, yet my background is half religious and half pseudo science.

My family was very supportive. My grandmother didn't try anything, she just said, "You know what? HIV/AIDS doesn't have a cure, but you can take your treatment. I'm not going to do any remedies for you because you must not take them. The only thing that you have to do is to go to the clinic."

My grandmother also said, "You have to pray to God. That's the only thing you have to do. You have to pray to God that everything will be all right."

I had support from my family and I took Melikhaya under my wing. We tried to convince his family, tried to educate his mother. At the end of the day, we couldn't fight [about this anymore] and now we are one big, strong family. We have Onwabo and everyone is happy. [Onwabo is Thembi's 3-year-old daughter.]

That's right! You got pregnant after you tested positive.


Can you tell me a little bit about that?


That is also one of the decisions that sometimes you think, "Maybe I shouldn't have done it. But anyway, it happened."

Just before I tested HIV positive, just like any young woman, I always wanted to have a family. There was a break point where I first [said,] "This HIV has taken everything from me. I won't be able to get married. Who would marry me?"

All these questions were popping up until Melikhaya and I got through some talking and were like, I want to have a kid, because everyone was screaming this stupid stuff in my head, like, "The kid is going to get sick. The kid is going to get infected. You're going to die and the kid is going to be an orphan. Maybe the kid will be a strange kid because you won't be there and the father won't be there. Maybe the family won't treat the bride when you are not there."

All of these things were coming to me, and they made me feel like I'm useless. This HIV thing really does kill you, kill your love, or kill your dreams. The only thing I have to do now is sit like this and wait to die. Just wait until I die.

There was a moment when I felt like, you know what, since I was going to a support group the support group really helped me. I realized no one can be me. I'm only me. I can only make decisions for myself. If I choose that this HIV is going to an obstacle in my life, that's what it's going to be. But if I choose, I'm going to fight it. I'm going to live my life the way I wanted to live it before I had HIV. It's just going to get along with that. That's how it's going to happen.

I was like, okay, I'm going to push it. I'm still young. I don't want to die. I don't want to just be forgotten: "Thembi died of AIDS." That's all I had. Nothing behind, you know.

I didn't do it for a selfish reason, to have a baby to love me, or something like a legacy to leave behind. I did it because I wanted someone to love for myself. I wanted to love him. I wanted to give him everything. I wanted her to love me back. I don't know how to put it. That's all I wanted to do.

There was a chance, I was told, that the baby might be HIV-positive. I prayed to God that the baby -- I know I didn't do anything wrong. The baby won't be HIV-positive. God will not punish me like that. I had to believe. I said, Melikhaya, I believe. Even if the baby is HIV-positive, there is hope out there. The baby might be HIV-positive, but who knows? The cure can come out anyway, anytime. It's not like it's the end of the world and we have to wait and say, "I'm going to have a baby when the cure comes." That's not going to happen. This is life. This is reality. This is about me. It's not about HIV. It's all about me, what I want in life, and what I believe in.

We talked to my doctor. Lucky for my daughter, he was very understanding. He took me through the procedure and explained to me what exactly is going to happen when I get pregnant. He should check my CD4 count, check my viral load, check my CD4 count, check my viral load.

Everything just meshed there and then. It meshed. Everything just meshed. I was put on nevirapine (Viramune); I was taken off efavirenz (Sustiva, Stocrin). I was put on another medication. [inaudible] CD4 count was [inaudible] too high. It was perfectly in health and I was also perfectly in health.

I said I'm not going to breastfeed. There are likely chances -- I got on nevirapine and my baby got AZT. I knew when I give birth, on that day, before they could even come back with the results, I already told my family, no, Onwabo is going to come out negative. I knew it.

The second test, everyone was like, "Oh my God, Thembi, we hope that you didn't breastfeed him. We hope that you were not careless with him." I said, no, don't worry.

Onwabo was HIV-negative, and now she's crazy! [Laughs.]

She's three, right? So --

Yes. She is so crazy now! She's crazy. But I'm happy. I wouldn't say that I wish -- of course I wish I didn't have HIV, but I love my life now. I wish I didn't have it. If they would say, what's the one thing that you want? I would say, you know what? I want to live a positive, normal life as long as I can.

"I feel lucky. I know that everything happens for a reason. God put me in this situation."

I wouldn't say I want to be negative, because I know that's not going to happen. But if I would still have a chance to go back and change, I would change everything.

I feel lucky. I know that everything happens for a reason. God put me in this situation. I'm in this situation for a reason, but a lot of people died just in front of me. I'm still here. Why? I ask myself. Yes, I'm taking medication. A lot of people die while taking medication. But I'm still here. Why? I'm here for a reason.

What is that reason?

I'm here to inspire people. I feel like I'm here to inspire people because with me being here, with me struggling, getting sick, going through some of the crises, going through a relationship, having a baby, and still coming out and talking to people and say, "I'm here, I'm a woman, I'm HIV positive, and I'm living my life normally." It can happen! It can happen. But I always say that prevention is better than a cure. Prevention is better than a cure.

If I was someone now, if I was ten, I would not stop to have sex, I'm telling you. I would think twice or I would be well-informed. I would actually know the consequences. Not only the consequences of getting pregnant, HIV, emotional stress, depression, all that kind of stuff. That strains a person. That kills a person more than HIV. I would really get myself educated if I would be in that point now.

I feel like anyone as I feel like it also in my situation.

How do you think you and Melikhaya got through your diagnoses together? It's kind of a miraculous and unusual story.

It is. It's amazing, you know. I think it's all God's work because a lot of people were like, even in my family, they were telling Melikhaya, "Why are you still here? She's going to die, can't you see?" I was sick, totally. I was crying. I was begging [him] to leave me alone. I was begging [him] not to come and see me because I was so sick and I thought I was going to die, but he said, "I'm not going to go anywhere."

This was before you started treatment?

Yes. This was before I started treatment. He would beg me, because at first I didn't want to start ARVs [antiretrovirals]. I didn't want it at first. I said, "No, I'm not going to take them." Because there were all these myths surrounding us, telling us that if you take them, you miss one day, you're going to die. If you take them, you're going to deform into this. You're going to get big breasts, big boobs, and all that stuff. You're going to be out of shape. You have to swallow [them] and they're going to make you nauseous the whole time.

I was like, I'm not ready for that responsibility, but Melikhaya was there for me all the way. He said, "Thembi, the only thing that's going to help you is to take your ARVs." When I didn't want to go to the clinic -- it's actually amazing. He was not even ashamed of me, but I was ashamed of myself. The only way I could go was to cover myself with a blanket. He would just take me on his back with my mother, and they would take me straight to the hospital.

I think it all goes well, because everyone thought that maybe he was crazy or something. Everyone kept on asking, "What kind of love is that?" Even his family. My family was, even my family, my grandmother was asking, "Why are you still around? You are young and you should be out there enjoying yourself. She's going to die, can't you see?"

We got through it and here we are. We're still going strong here.

How did your Christian faith help you get through all of this?

It helped me a lot because I believed. Actually, it helped me to believe. It gave me hope. It helped me to believe, to actually say I believe. I put everything in God's hands. The only thing I have to do now is to take my medication, take my treatment, and just put my health first and everything else I leave to God.

It was up to him. I just had my faith in him. My Christianity really helps because there were times when I wouldn't want to take the pills. I would cry, cry, cry, cry, cry, and then I would cry, and then I would pray and I would think.

I'm still here. Why hasn't God taken me? This is my opportunity. I still have time. I can take this pill. I still have time. Even if it's one second, I still have time. Why hasn't he done anything? It's because he doesn't want to. Because he doesn't want to, so why should I say, "I beg him and say I'm going to wait up until God, up until I die, because I'm going to die"? How can I say that? I still have that one second, that moment, to take those pills and be alive.

I had faith and my [inaudible] although there was a time when she thought I was going to be [inaudible].

It's a really sad story, but now sometimes I look back and I laugh at it. I can't believe that I was sick. Even when they tease me, they're like, "Oh, when you were sick! Oh, you were crying! Now you're fat! [Laughs.] You're telling us whatever you want!"

It's kind of, you know, the sad part that I've got. It was different, because all those years I was doing all that stuff, I have not disclosed to my father, which was a no, no, no. Remember, before I started to do the diary I wanted to do the diary and the diary really helped me as the way of coming out. It was a way for me to actually come out. I really wanted to do it. It was really helping me, talking to the diary, recording alone. I was talking to it and just pouring my heart to it and what I really liked was that the diary was not talking back. The diary was not judging me. It was just there when I needed it.

The only thing that was in front of that was the fact that I have not disclosed to my father.

This was the audio diary that you did for NPR for year where you recorded your thoughts and they put it on the radio and on the Internet.

Yes. That's the diary.

How did that all start?

[Laughs.] I think that was the time when I got a break, actually. It was a breakthrough for me. It all started when I joined the support group and Joe Richman, who's the producer of Radio Diaries, was living in South Africa for five years. He was doing this documentary about youth and HIV. We met in Khayelitsha. He came to our support group. We were 20 and he interviewed us because he wanted to do this story.

I was telling the guys there, "You know what, guys, I'm going to give this story only if we can go there privately, one by one, because I'm not going to pour my heart in front of you guys, I'm sorry! [Laughs.] But that guy I don't know and that guy's from America! [Laughs.] I live in South Africa, so I'm safe.

That's when I started to do the diary. Joe interviewed me and he gave me a tape recorder. He's like, "You know, I'm going to give you a tape recorder. You must just play with it." I was excited, thinking that I was going to get a tape recorder like this, a fancy, smart, sexy tape recorder, only to find out he just gave me a huge, ugly, black, old tape recorder with a huge mic and huge earphones. Imagine carrying that for a year and a half! Winding around Khayelitsha, everyone thinking I was going crazy!

This is Khayelitsha. This is outside Capetown, is that right?

Yes. It's a township. It's the biggest township in Capetown.

I recorded for a year and a half and it was difficult. I was not programmed to record anything. I just recorded and then Joe would cut and take what he wants and cut whatever he doesn't want.

I was told to record important things like the highlights, like going to the clinic, disclosing to my father, taking treatment, having a discussion with Melikhaya, talking to my mother about how I came to decide to have a baby, and just my thoughts about the future and how I am handling being a mother and what do I wish for Onwabo in the future, and all that stuff. That's what I actually recorded.

All of this was going on and you had told a lot of other people, but your Dad still didn't know?

Yes. It was quite difficult. My Dad didn't know, but before I could even finish the diary, the diary was going to be out. Any time soon, he was going to know. I was like, I'm going to do it. I'm going to go and disclose to him and it's going to be on tape. I want people to actually see the reaction of how people really react when you disclose. Because either he's going to accept me or he's going to reject me. Whatever he does, it's going to go on tape. People are going to see that.

Sometimes it's not about disclosing. It's about accepting yourself and being ready before you disclose, not making the mistake of, "I have HIV. I'm going to go and disclose just because Thembi did so." You might lose a lot of things. For me, it was a matter of losing my Dad, but at the end of the day he'll still be my Dad. He's going to understand, rather than not doing what I actually want to do. It was either I'm going to lose him, but he'll always be my Dad. At the end of the day he's going to come around. Rather than me not doing what I feel is right for me. This is me I'm talking about. I have to put my feelings first.

I went and disclosed to him and it was all on tape. I was nervous. I went there three times and I didn't do anything. But the fourth time, I was like, "You know what, I'm just going to go and do it."

My mother was like, "You have to. If you really want to help people, you have to start within your family. Whatever the reaction, we are here to support you."

I went and I disclosed to him and, if you could hear the radio, you could hear his speech on the radio. He was shocked. Because, at first, I just asked him, "What do you think about HIV/AIDS?" He could not even let me finish. He was like, "I get angry about this disease because you grow up [with] your kids now and tomorrow your kid is dead."

He was so angry before I could even tell him. But when I actually told him, "Okay, I'm going to tell you. There's no going back."

He was shocked. He was like, "No, man, no, no, no. Really?!" I said, yes. I told him it's been many years. Everyone else knew, but no one could have told him except for me. He was very supportive and we're still close, although he is too much sometimes.

Why did you wait so long to tell him in particular?

I think because I grew up on both sides of the family, but I grew up mostly -- in my teenage years, I was actually staying with my father and my grandmother. Imagine that, being a girl staying with your grandmother, with your grandfather, and your father. It was weird! I was staying with them in my teenage life and it was actually not comfortable. It was not a comfortable situation for me.

In order for me to have boyfriends, to go out and do all that crazy stuff that I did, was for me to go to my mother's side. When I found out this whole thing about HIV, I actually was ashamed and I was scared to tell them. I had questions like, what the hell could I ask? You were living here. You mean you were living with another and you were having sex? You know, all those kinds of questions. You took it like a young girl and you were doing all this stuff. I thought that was what he was going to say. I thought, no, no, no, no, on my mother's side it's better because those are women; they understand. But for him, I didn't think he was going to understand.

How is all of your family at this point? You talked about Melikhaya's family at first being really upset. Do you feel like you have your family's support?

I have 100% of my family's support. My grandmother, my mother, my crazy brothers, my crazy sisters. I have Onwabo. I have everyone. I still have my grandmother. My grandfather is very, very old. He's 92. He's too old. I still have him. I'm blessed. I have my family very tight together.

What do you think gives you the courage to speak out when so many people don't?

I think it's because it helps me. I think I saw the impact it has on me. That's why I think it's like this every time I talk. I get healed. Because every time I talk about it, it feels like a new wound. I speak about it all the time, so I'm used to it. It's like every time I start to talk about it, it feels like it's a new wound. I'm opening up old sores. To talk, it heals me again. Every time I talk it heals me again and again. That's the courage.

What's it like being a positive Mom? Are you able to talk to your daughter at this point? She's still very young, but --

She's still very young, but I know that God is going to give me much more time, up until she gets a little bit bigger, so that I can explain everything. At this point, she's young but she knows that I go and talk, but she actually doesn't know what I'm talking about. But I have everything fixed up for her. I have the [inaudible] copies. I have all the work that I have done. I have pictures. I put them in a box.

When she's old enough to understand and ready enough to see, whether I'm here or not, I know she's going to be part of me. Everything is going to be fine.

What's it like being out in your community? You're sort of out to the whole universe. Do you experience stigma at all in the township where you live?

Yes. Stigma in every community is going to take a long time before we actually break the stigma, especially in Khayelitsha, because of how people's minds act. People are still stereotyped. There are a lot of cultural beliefs and there are a lot of myths going around.

"Sometimes some people say I'm doing the right thing, and you get those people who are like, 'What's up with you going around talking about your status? It's something confidential. You should hide it. You don't have to tell the world about it.' Some people think I'm exploiting myself, something like that."

Sometimes there's too much stigma and sometimes some people say I'm doing the right thing, and you get those people who are like, "What's up with you going around talking about your status? It's something confidential. You should hide it. You don't have to tell the world about it." Some people think I'm exploiting myself, something like that.

Other people are too jealous. I help people. I've had comments like, "You know what, even if you can go and tell the world, the fact is you're going to die anyway." It's not going to go away just because you go and tell it, so you can enjoy it while it lasts. You get comments like that, but who cares? It's not like everyone's going to be here up until the universe explodes. We're all going to die!

I can say I'm bulletproof. People say whatever they feel like saying. All I'm doing is focusing on what I'm doing. I don't care about all the comments, whether they are good or whether they are bad. I do what I feel is right for me and now I have a responsibility. I have Onwabo. I can manage to [inaudible] and take everything seriously.

Can you tell me a little bit about your community and about the township, just about your home?

My home is in Khayelitsha. It's a big township. All the houses are mostly in shacks, but thank God now the government has started to build up, so we have brick houses. My grandmother has a big brick house and my mother has a house. I stay with Melikhaya in our own house, but we are also in Khayelitsha. All of our family members are in Khayelitsha, but Khayelitsha is so big.

How many people live there?

I don't know. A lot! [Laughs.] Imagine if you talk about shacks, you're talking about three houses in a small spot. Imagine how many of those -- there a lot of problems. The highest rate of people in Khayelitsha are mostly HIV-positive. I think that's why the MSF [Médecins Sans Frontiéres] clinic is based there. That's why the [inaudible] are all out of ARVs in Khayelitsha.

I'm sorry, can you describe that?

Khayelitsha is so big that most of the people in Khayelitsha are HIV-positive, so that's why MSF is there. It was the first township to receive ARVs. They're all out of ARVs. I was lucky to be in that township. Imagine if I was not living in Khayelitsha! I would have struggled like anyone else did.

I'm sorry, so it's the MSF there? What is that?

It's Doctors Without Borders.

In Khayelitsha, there's pretty good antiretroviral access?

Yes. It's pretty good. We get them for free and we get access to everything we need, and the medication, and you get it for free.

It's not like that in the rest of the country?

No, it's not like that in the rest of the country. There are parts of South Africa where you struggle to get ARVs, where there is no [inaudible] or where people have to walk miles to get them. They have no access at all or they have a limited access.

What treatment do you take now?

I am now on nevirapine, d4T (Zerit, stavudine), and 3TC (Epivir, lamivudine).

How has your health been since you started treatment?

Before I started, my CD4 count was 120. Now my CD4 count has gone up pretty much, although I still struggle to be back on my normal weight. My normal weight is 45kg [99 lbs], but now I'm only 43kg [95 lbs], so I've struggled. I'm not actually reaching that. I also don't want to be fat, excuse me!

[Laughs.] You're very tiny!

But, excuse me, I do not want to be fat! Imagine being tiny and short and being fat, it's not good.

My weight is fine now and my health is good. The weirdest thing is that I've never had any -- I've had opportunistic infections, like TB [tuberculosis]. I had it twice. I've never had an STD [sexually transmitted disease]; that is weird. The only thing that I had was TB. I had it twice and I treated it, so my health is fine. Onwabo's health is fine. I take her to the doctor even if she has a runny nose because she likes to play outside! [Laughs.] Melikhaya is still doing well.

Melikhaya hasn't started treatment yet?

No, he has not started. I think they're going to start him, because his CD4 count is 500 and he has experienced pains in the chest, but it's not TB. I think it has something to do with the heart or something. He's still looking into it.

What's your CD4 and viral load now?

My viral load now is undetectable. Imagine how many years I've been taking ARVs! My CD4 count is seven [hundred] something.

That's fantastic!

From one to seven is [phew!].

What was your count when you were first diagnosed?

It was 167 when I was diagnosed and they said, "You should start ARVs." I was like, no, no, no! All those stories. Then it dropped down to 120 and I'm like, okay! Please, please, please, please just give me this one chance. I'm going to do it right.

Switching gears a little bit, can you tell me how the audio journal has launched you into this world of international activism?

Man, it has done a lot! If I think back, doing that diary made me sick most of the time. I was like, I don't want to do this. I don't want to spend my whole year recording something about AIDS. What are people going to say about me? This is crazy!

But now, it has formed me into a very mature woman, and responsible. It has shown me the world. It has really made me -- even if I was going to lose hope, now I can never lose hope because I've got all these people looking up to me. That gives me the strength.

It's all because of the diary. That's the only reason I'm here. It's because of the diary. Every time I see Joe Richman, I'm like, thank God you came to Khayelitsha and found me in those [inaudible] Who knows? I might be dead by now.

So your life has changed a lot! You've been a UNICEF ambassador; you won an award for your audio journal. What is this new life like?

It's nice, although I have to talk about the same thing. [Laughs.] It's nice, but the [bad] part is that I have to talk about the same thing. For me, every time I start to talk -- I don't talk to one people, I talk to different audiences. It's a different vibe and every time I talk, I talk about it. It comes fresh.

I know that I'm doing a good thing. I know that. People appreciate what I'm doing and even if I don't help -- I'm not going to save the world -- but at least there's going to be just that one person that is going to take something back.

It's a really nice world. It's fine when you are here, but when you go back to Khayelitsha, it's the same old thing! It's the same old thing.

How do you think HIV has changed you?

It has changed me for the better, because I think if I really didn't have the test, I wouldn't be who I am today. I would still be the ignorant whoever I was, whatever I was then. I would still think low of people that have HIV. I wouldn't be involved in any HIV work. Imagine! Imagine not knowing your status and being involved in HIV work, that's crazy! [inaudible] I would be one of those people who say, "Oh, well, it can never happen to me. It's not like I'm sleeping around." I use a condom once, sometimes, it's not like, you know, you know what I mean, I would be one of those people, I wouldn't take anything seriously. It has transformed me into this place, and that is actual. I'm taking things more seriously and it has made me grow so quickly.

Thembi, thank you so much for talking with me. Is there anything else you want to share with our readers?

I think that, as people, we should actually acknowledge that HIV is here and we need to do something about it. We should stop blaming people and blaming each other. We should work around it. Work around the stigma and discrimination, work around everything that's surrounding it. Because at the end of the day, the children are going to suffer and we are also going to suffer. Since I'm a mother, I really don't want Onwabo to grow up in a world like this. I really don't want her, in the future, sitting like this and thinking, "Oh my God, I tested HIV-positive." I mean, come on! As if we didn't have the courage to do anything about it. We do have it! It's just that we don't want to or we don't see it, I don't know. But it's up to an individual. You have to push yourself.

Thank you.

This transcript has been lightly edited for clarity.

Thembisa Ngubane died of drug-resistant tuberculosis on June 4, 2009. Read more about her death and legacy.

This podcast is a part of the series This Positive Life. To subscribe to this series, click here.

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This article was provided by TheBody. It is a part of the publication The XVII International AIDS Conference.
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