The Ramothwalas

When I speak to Pholokgolo Ramothwala, he has just learnt that another member of his organisation, the Treatment Action Campaign (TAC), has died.

“On days like this, I think: what have I done to have a relationship with someone who is HIV negative? What happens if I get sick and die?” says the dynamic 25-year-old who is TAC’s Gauteng co-ordinator.

He and his wife Mmabatho will celebrate their first wedding anniversary this month (December), and while they are very much in love Pholokgolo admits that he feels a lot of strain knowing that he might infect the person he loves with HIV.

“I am very committed to making my marriage work but I do feel great responsibility being the one with HIV,” says Pholokgolo. “While there is a risk of getting reinfected with another strain of the virus when both partners are HIV positive, I think the level of worry is far less.”

When Pholokgolo first discovered, while in his final year as a journalism student at Stellenbosch University, that he was HIV positive he became very depressed.

“I never thought that I would get involved with someone who is HIV negative. But it just happened. We almost broke up because of this worry that I feel. Although we take maximum precautions, I still get nervous.”

Mmabatho (24) knew that Pholokgolo was HIV positive long before they even started dating.

“I met him with some friends when we were on our way back from a wedding,” she says. “We became friends and after a few days, he told me that he was HIV positive.”

That was in 2000, and two years later their friendship blossomed into love.

“I didn’t really expect it to happen, but she said ‘let’s just take one step at a time’,” says Pholokgolo. “I do feel anxious, a lot. If I kiss her, there are those times when I get a bit nervous. We always use precautions. It took a lot of practice to begin with, to stop and be cautious. But that has become automatic now. This is the way I live every day.”

For Mmabatho, who is studying banking at Damelin, as their relationship deepened Pholokgolo’s HIV status became less important to her.

“HIV is not a big part of our relationship,” she says. “I am afraid of becoming positive but we are very careful. So when I go for HIV tests every six months, I am not that worried. Maybe it’s because I am in love. I just love and admire him for what he is. I just thought it is time for me to do this.”

Pholokgolo acknowledges that Mmabatho has a positive attitude and that she encourages him. But he admits to being very worried when he accompanies her to have her HIV test, and says he sometimes feels that she does not show how worried she is because she wants to spare his feelings.

“I feel nervous and I don’t feel like waiting for the results. It is too difficult. But she doesn’t show it. It is only afterwards, from some of her comments, that I see that she was worried too,” he says.

Initially, Mmabatho’s friends were shocked.

“They would ask me if I’m not scared to get HIV and die. Some people ask me if I knew before we were married that Pholokgolo was HIV positive. And there are those people who think that I am HIV positive too. But it doesn’t worry me because I know that I am not.”

Mmabatho, who grew up in Soshanguwe, is the third of six children and the first daughter. Her father is dead, but she says her mother and siblings didn’t have a problem with her marrying Pholokgolo.

Pholokgolo’s parents died in 1996, so his immediate family are his two younger sisters and his grandmother who live in Botlokwa in Limpopo.

One of the difficult issues facing the Ramothwalas is that of children. They would love to have a baby but sex without a condom may well result in Mmabatho becoming infected.

They are thus investigating a special process of artificial insemination involving “sperm washing”. During this process, the seminal fluid, which is believed to carry most of the HIV, is first separated from the sperm before the egg is fertilised in vitro with the sperm only.

While the process is not easily accessible, it offers hope to the young couple. Hope is something that Pholokgolo particularly needs. Immersed as he is in the world of HIV/AIDS, he sees many tragic situations that often cause him to despair – not least about his relationship with his HIV negative wife.

“I literally live in HIV and AIDS things. I see it all the time. At times, is hard to remain positive.”

The Leons

Two weeks before their wedding, Anne and Trevor Leon decided to take out life insurance, and had HIV tests as part of the process. To their shock, Anne tested HIV positive.

“There were a lot of tears,” says Anne. “It was a scary issue, especially in terms of love-making. The first time we were sexually active after the test results, I cried a lot. It took me a long time to learn to relax and understand that Trevor’s love was unconditional.”

Despite the shock, the wedding went ahead as planned and the Leons, both in their late thirties, have been married for seven years now.

“It didn’t ever occur to me to break up with Anne,” says Trevor, who is a car salesman.

“I had no doubts ever. Anne gave me the option of the door, but I said nonsense. Getting a terminal illness doesn’t change who you are.”

Seven years ago, the stigma of being HIV positive was even greater than it is now. As Anne had only had a few sexual partners before meeting Trevor, hunting down the man who had infected her was not difficult. But the shock of seeing him in a local hospice, hearing that he had deliberately infected her and others and seeing him dying with so much anger, made her resolve not to live a life of denial and bitterness.

“I have grown up in this area and have been in this flat for 35 years,” says Anne, speaking from the Leon’s snug flat in Umbilo, Durban.

“But neighbours didn’t want me around when I told them I was HIV positive. They would whisper behind my back,” she recalls.

Trevor says many people were judgmental and thought Anne had done something wrong.

“I wanted them to see I was no different to them,” says Anne. “Sometimes I would stand by the post boxes when they came home just to make them greet me. This started to make them feel embarrassed and slowly everyone in the block has come to accept me.”

But she admits that sometimes she still feels isolated.

“I don’t get invited to people’s houses anymore. Some people seem to be afraid to be seen with me.”

Anne says “a tremendous amount of people” think HIV/AIDS is a “black issue”, but she knows that three of her school friends and another family member are HIV positive. After giving talks on HIV/AIDS at schools, white students have also told her that they are living with HIV.

HIV has both strengthened and strained her marriage, says Anne.

In the early days, the strain was more evident. Trevor was refused life cover because they said Anne was a “risk factor”. Then the insurance consultant Anne worked for emigrated and she found no one wanted to take on an HIV positive employee.

They also had to deal with the immense pain of abandoning the idea of being parents.

“Anne was ready for motherhood and she took it very hard,” says Trevor.

“There was a great chance that I would infect my child. I was also told that the pregnancy would break down my immunity. So we decided not to have children,” says Anne.

“I had already starting buying baby clothes and had decided I would have a teddy bear theme for my baby’s room. It was very hard and depressing to look at this box of goodies for the child I would never have.”

The Leons explored adopting a child, but the adoption agencies weren’t happy with an HIV positive person adopting a child as they felt this would be too traumatic for the child if the parent became terminally ill.

“They said that we could adopt an HIV positive baby, but it would be too soul-destroying. I don’t think I can handle it,” says Anne.

Instead, they help friends and relatives with their children and lavish attention on their little dogs, Bambi and Sandy.

Despite the difficulties, the Leons also believe that living with HIV has brought them together.

“We really don’t take one another for granted. We never let an argument drift longer than a day,” says Anne.

“I give thanks for every month that my wife is healthy and with me,” says Trevor. He has an HIV test every six months, but says he is never worried because “we take precautions”.

“I know I’m safer than some of my mates who are going out and having unprotected sex,” he says.

The one health shock they had to deal with came five years back when Anne was part of a drug trial for anti-retroviral drugs.

Although the drugs worked to suppress the virus and build up her immunity, she had a number of side-effects and ended up in King Edward Hospital.

“None of the nurses would touch me because I was HIV positive,” says Anne.

Because she had reacted badly, she had to leave the drug trial and couldn’t afford to buy other anti-retroviral drugs herself. So she turned to natural supplements, eating healthily and doing exercise.

But her CD4 count has dropped to below 200 and she needs to start the drugs again.

A few days ago, a group of US doctors offered to sponsor her anti-retroviral treatment, which has brought great joy to the Leons.

“It has always been a worry. What happens when I need to go on the drugs because we can’t afford them and the tests and doctors’ consultations? We are both self-employed and my mother lives with us. But now the money I have been setting aside each month for drugs can go into a hospital plan,” says Anne.

Trevor believes that living with HIV has made Anne discover her strengths, and he is very proud of her ability as a motivational speaker.

“Dealing with HIV has put everything into perspective. There is no greater fear, so whatever is thrown at us we will be able to handle it,” he adds.