We globally celebrated World Aids Day 2013 on Sunday, December 1, 2013. This year the World Aids team asked global citizens to “Act Aware“. Acting aware means finding out the facts about HIV and using this knowledge to protect yourself and others from HIV infection. To pay tribute to World Aids Day I would like to share a touching testimony I read recently of a South African woman named Gloria Ncanywa who chose to make living with HIV a platform to uplift and empower other mothers going through the same fate.
By: Peter Stanford
It was a sunny, hot day in Cape Town. I was pregnant with my second son and had gone for my antenatal care to my local clinic in Khayelitsha. One of the doctors said to the women in the waiting room, “Anyone want to come and do an HIV test?” Some hesitated, but I said yes at once because I knew I wasn’t HIV positive. I wasn’t sleeping around. I only had one partner.
Before they did the test, they asked me all sorts of questions, and were filling in forms. I can still hear myself saying to them, “You don’t need to ask me all these questions. I know I am HIV negative. I just want to be sure.”
So they took blood and I went to wait outside. This was in 2001 and I was 27. There were other women there very upset and worried. I was the one comforting them. And then I was called back. “Unfortunately,” the doctor said, “you are HIV positive.” It was as if the world had turned round and upside down all at once. Everything turned dark.
When I got home, I told my husband that I had Aids. I didn’t say HIV positive because I didn’t know then that there was any difference. He just said, “fine”. That was all. Nothing more. He was a taxi driver and I knew he had been cheating on me for a long time. That night I couldn’t sleep. I was so scared of dying. There were so many people around us back then who were dying of Aids.
I wanted to have an abortion, but the doctors said I was six months pregnant. It was too late. So I just went home and waited to die. I thought I was going to give birth to an HIV-positive baby who would die too. I would lie awake at night with a piece of paper and write down how I wanted my funeral to be.
I was crying all the time and not sleeping, so in the end I went along to a support group, but it was run by people who were HIV negative. Whatever they told me, I thought, “They’re just doing their job.”
I gave birth on June 24 to a beautiful boy. I had to wait until September for them to test my baby to see if he was HIV positive. It was a torture waiting. Every time he looked sick, I was sure he was going to die, even if he was only teething.
Thankfully, his test came back negative. I was so happy. And that is when I started to realise that it had been many months now since my diagnosis and I was feeling fine. I wasn’t dying. So I told myself, “Let’s stop this madness. You have two healthy sons who are HIV negative. You need to get on with looking after them. You need to accept your status and lead a positive life.”
Sometimes, when I am talking to mothers who are HIV positive, and I tell them that I am the same as them, they say, “But you are lying. You look too healthy.” One said to me, “I don’t believe you. They are paying you. I have never seen such a beautiful woman who says she is HIV positive.” “But I am,” I replied, “and you can be like me.”
So I trained with mothers2mothers to become one of their mentor mothers, mothers living with HIV who are employed to educate and support HIV-positive pregnant women on how to prevent the transmission of HIV to their babies and keep themselves healthy.
They are going through all the same worries that I experienced. I know what they are feeling, and I saw it as my duty to help them. I didn’t have anyone there to tell me that my baby could be born HIV negative. They do not have to suffer and feel judged like I did. Today it is much better. There is much more awareness about HIV. But there is still a stigma around being HIV positive. Some of the women who come along to our groups are frightened to tell their partners about their status and there is a danger to their unborn baby in not doing that.
When they come to us, we tell them that they need to take good care of themselves and their baby. If they breastfeed, they must do it exclusively to prevent any infection being passed to their baby. And, we tell them, too, that they should always practise safer sex which means telling your partner your status. It is no good saying to their partner, “Let’s just have a cuddle.” They have to say, “We must use a condom if we have sex.”
As a mentor mother, though, I cannot force anyone to do anything. I am there to give support, encouragement, and hope. The hardest bit for the pregnant mothers is disclosing their status to their partners and families. We encourage the women to bring their husbands to our clinic so we can help them do that. And if their husbands don’t want to come, I go to their home.
I remember going to visit one woman. She was hiding the truth from them because she was afraid. She had asked all her family to be there. And they were all looking at me thinking, “Why has she brought this woman with her?” It is all very quiet and then finally she says, “The reason I have brought this woman is that I am HIV positive.” And two of her brothers and two of her sisters say, “We are HIV positive too.” They hadn’t told each other. Now they could all talk and support each other.
Once people talk, it makes everything easier. This woman, for example, was planning on leaving her baby with her mother when she went back to work. But, if she hadn’t disclosed, how would she explain the importance of feeding the baby with breast milk and not mixing it with other things?
Later I became a site administrator for mothers2mothers, and now I work giving logistical and administrative support to 400 clinics across Africa. Through my work I have met so many people I would never otherwise meet: Tony Blair; Barack Obama; and, of course, Annie Lennox who works so closely with mothers2mothers. The women sing with her when she visits.
In 2006, I was invited to go to Washington by First Lady Laura Bush. She had visited our first clinic in Cape Town and was so impressed that she asked 10 of us to come to the White House. It was like being in heaven. In 2007 I went with her to ring a bell at the New York Stock Exchange. I’ve never been good with numbers. But Mrs Bush held my hand. Her security men said to me, “Don’t hold the First Lady’s hand,” but Mrs Bush told them, “I want Gloria to hold my hand.”
When I got back to South Africa I couldn’t stop talking about the trip. When I first found out I was HIV positive, I felt hopeless. I thought my life was over. But what I have discovered in the years that followed my diagnosis is that there is a future for me and my children and it’s better than ever. I am no longer planning for my funeral.
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