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.
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.
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.