Nomampondo, age 52 / Johannesburg, South Africa

AIDS2016_Noma

 

 

At least be there for the mothers! I always tell my daughter that she saw me struggling in front of her, bringing them up as a single parent. She has to be there for their mother–  for her kids as well.

We were the faces of AIDS in the beginning, during those difficult times. And some way, somehow, I felt that we have left been out. Everything is about the youth, the young people. And here we are, who broke stigma. If we didn’t break stigma, those young girls, or those young boys – I don’t know where would they be today.

When I discovered, I was breastfeeding my daughter, who was eight months old in 1996. I was buying a house and I have to take life insurance to make sure that if anything happens to me before the mortgage is paid off, the house will be paid up. That insurance required HIV test. That’s how I discovered – because the policy was declined, because I tested HIV positive.

It was a blow because I did not even know whether I transmitted to the baby. The first words that came out of my mouth was, “What’s going to happen to my kids?” Because then, all you knew was just death.

My kids are 12 years apart. The doctors just say that I bring them in for test, and the partner. Which, with men, it’s a mission to get them to the doctors, especially when it comes to HIV test. He said he will go, which… I don’t know whether he even went.

I didn’t take them. I didn’t have the nerve. The other one was 12 years old, and two years back, I took another life insurance, I did HIV test, and I was negative. So I felt that at least that one was safe. I was worried about this one.

I had the fears of taking her in, because I would have known that I transmitted– the guilt of knowing that I transmitted… because at the end of the day, the blame remains with the mother. How do I look to my child and tell her that “I transmitted the virus to you?” Fortunately she’s 19, and she’s a blood donor. At least I know, if tomorrow she tests positive, it will be on her own. And really, I still feel it was miracle.

Because I was a banker, everything was done at work – the bond application, the broker, and everything. I suspect they knew, they just wanted me to come and tell them. When I tried to sit down with the branch manager, I remember her saying, “Oh, no. I’m not going to lose 61 staff members because of one person who is HIV positive.” The first person she contacted while I was sitting there in her office was our human resource department, to say, “I’ve got an HIV positive person here. I don’t know what to do with her.” HR came out, they assured me that I shouldn’t worry, I still have my job. The company has got a policy for people living with HIV – it’s read as any other condition. However, I still had challenges with the management, which resulted in me losing my job within two months of that.

Healthwise, then, I was healthy. Nine years later, I had TB. But I still feel that my TB was occupational exposure, because I was working for a research center and we were working on a study looking at co-infections – TB and HIV – and from time to time, I would go to the clinic because we were recruiting.

So I ended up with TB, which was also so difficult to diagnose, because I never lost weight. I was not coughing. And, you look at my status – I’m living this life – because TB, we’d associate with poorer people. But the one symptom that I had, that I was so convinced that it’s TB – I had terrible night sweats. That’s the only symptom. And I had some abdominal pains. We did ultrasound to see maybe if it’s TB of the abdomen – nothing. I developed my lymph nodes around my neck, and we collected a specimen. It came out negative, but then the doctor decided to do culture, which actually takes a bit longer.

And I pushed and pushed to be initiated on TB treatment. By the time culture results come back three weeks later, I was already on TB treatment and culture was positive that I have TB. I think one empowerment that I gained in this world is you really learn and understand the condition that you live with, so that sometimes I can challenge doctors. I think I can manage myself better than a doctor.

When I was diagnosed with TB we had to initiate ARVs at the same time. I thought that’s it, it’s the end now. I was very sick. I remember my kids sitting around me, and my eldest was asking me if there’s anything they can do to take the pain away. I’m on these drugs with different side effects, all working on this weak immune system. I was just flat – I could not even lift my finger. I got worse. I’m taking five ARVs, five TB drugs; I’m on two antibiotics to prevent further infections. I’m taking a pill for neuropathy.

I was a single mother. And now I’m weak, I’m staying with these two kids of mine, and they have to try and manage all this to spread out the medication. I remember my daughter, the youngest, at the age of nine, she was my best treatment supporter. With TB treatment, you have to take them at the same time. So, that would be my first dose in the morning. At eight, it would be two ARVs. At ten will be the antibiotic. At lunchtime, will be pyridoxine and the multivitamin.  And then I have break until eight in the evening to take my other two antibiotics. At ten, I will take Stocrin because it makes you nauseous and drowsy and whatever, so I decided to take that just before I go to bed. The whole month of March 2006 was not good at all for me. But then, after that, I was back to normal.

Tuberculosis was 2006. Shingles was February 2000 and…9? And 2012… 2012 was brain tumor. I don’t know what’s next! I don’t stress. I don’t worry. I don’t care. I’m not scared of death. But sometimes I do worry about my kids, because I know the connection that we have. I know that for them, it’s like, I’m all that they have. I don’t know how they can cope and deal if tomorrow anything happens to me. But for me, I’m fine.