7 minute read

A virus called Rooi

By Susan Winters Cook

Living with HIV, Nozuko gives her resident enemy a name

Relationships. That’s usually how this whole thing happens. Boys and girls get together and do the inevitable. In the past, pregnancy was the dead giveaway that the inevitable has happened. Now HIV has become another consequence of the inevitable.

Until recently, HIV was a certain death sentence. With the use of life-prolonging antiretroviral medications, HIV has, for many, instead become a chronic illness to be managed. That includes having a healthy diet and positive environment. For most, that’s like gardening in a drought. It’s nurturing the plants one bucketful of water at a time.

The recently married Nozuko and Lawrence have HIV. They are both doing well, managing their condition with ARVs. Nozuko’s daughter Nqobile (13) also has HIV and is also doing well. Nozuko and Lawrence both recognise that the serious, sad, sometimes terrifying experiences they have known in recent years have changed the way they behave in a relationship. In this case, it’s for the better. They have acquired a maturity that enables them to focus on the things that are most important to them, and to manage conflict in a calmer way than they would have done before.

HIV has changed Nozuko’s relationships in other ways as well.

“I can say that before HIV I was living another life. I saw myself as a simple rural girl from a very poor family. I didn’t know my strengths. I was a quiet child and very shy. I used to cry a lot when I was young.

“A lot has changed,” she understates. Nozuko’s decision to disclose her status revealed a gift for communication, public speaking and eventually counselling.

“Now, I can speak without being shy, I can speak and make people interested in what I say. I feel special because now people can rely on me and I can do something to help them. I have a gift. I can understand people’s problems and communicate with them to help them.”

Nozuko continues to work as an HIV counsellor at Ibisi Clinic.

She recognises that others are not as fortunate as she was to have supportive family and friends, and works with them to find practical solutions to their own issues. This sometimes includes talking someone out of suicide or supporting someone who needs to report physical abuse to the police.

Nozuko’s relationships with her mother Nozabile and five sisters have changed. Her mother’s extraordinary support of her eldest daughter came at a price.

“When she discovered I have an incurable disease she used all her powers to help me. She was so worried and so hurt that for a while it looked like she was the one who would die, as though she was taking death away from me.”

Nozabile was a joyous witness to Nozuko’s recent marriage.

As for her sisters, Nozuko has remained much the elder and has spent many hours instructing her siblings about HIV with the expectation that they would avoid risky behaviour. Now she says, “I wouldn’t be surprised if there is HIV because sometimes I see they take it for granted, as if nothing has happened. They believe that since I have survived, they can survive as well.”

The difference is that now Nozuko is willing to let go, as she has learnt to do with her clients, leaving the ultimate responsibility for preventing HIV with the individual. “It’s not my responsibility any more, it’s theirs. I have tried my best.”

Nozuko’s relationship with death has changed. She has seen a lot of death over the years; her father, uncle, her beloved granny, her infant daughter Yanga and many friends. “I’m seeing people die almost every day because of HIV.

“I used to fear death. I used to think it happened fast. But now I see that it is a part of life and we can’t run away from it, we cannot stop it.”

She has forced herself to become more comfortable with death by seeing the bodies of those she has lost.

“I’m looking forward to meeting it some day.” Still, she fought a valiant battle to live. “I fought to live because of my children. I was always thinking of my children.”

“I believe in a second chance. God gave me a second chance to prove myself. That’s why I take things carefully, so I won’t be sorry, thinking I wasted this opportunity”

Having a second chance means learning from mistakes. “We have to experience difficulties so we can know what we are doing and where we are going. Difficulties make us stronger. They equip us for the future, so we can reach our destiny.”

For Nozuko, destiny is a humble request: “to see myself and my family living happily and peacefully. I’ve grown up now, I have children to raise. I want to be a role model to them, with a home, a job and a good relationship with my husband.”

Nozuko has another relationship in her life, with the virus that inhabits her body. She calls it “Rooi”, “because it is a strong colour and can mean danger”. To her, “the virus is a man because I am a woman and I can have a relationship with a man”.

Nozuko is not alone in personalising her relationship with the virus that inhabits her body. To give the virus a name makes it possible to communicate with it. It’s an opportunity to take control.

One woman reports that she reminds the virus that if it does not behave, she will die and then the virus will die along with her. Another woman has reported, “I say to the virus, we are living in the same body so we must learn how to get along.”

“Rooi is with me everywhere I go. He is with me until death. There’s nothing I can do without him being there. I can’t just leave him at home and ask him to look after the house for me while I am away.”

Nozuko did not choose this relationship, “I didn’t invite him. He did not apply to be with me, he just forced himself into my life and said, ‘I’m staying here, I’m not going anywhere’, so I was forced to learn to live with him.”

In the beginning Rooi was like a two-ton gorilla toyi-toying across Nozuko’s face. “Along the way there have been some misunderstandings. He started to torture me. He was very cruel to me.” That was in 2000 and 2001 when Nozuko came close to death several times with HIV-related TB and pneumonia, and losing an infant daughter.

Eventually Nozuko regained control over her body and maintains that control with diligent use of the ARVs. “Taking the ARVs is like taking food, it’s something I do every day to survive. It’s a normal thing to do every day, it’s like I’m eating.”

As long as Nozuko is in charge and Rooi behaves, they get along, “It’s ’til death do us part.” Does Nozuko ever wish Rooi would hit the road and get lost? “Well, yes. Sometimes when I am dealing with the HIV I do wish it would just go away.” She knows that is not an option so she strives to maintain control.

Nozuko is very close to fulfilling her vision of her destiny. There is one thing missing from that vision, the elusive driver’s licence. “I still want to drive a car!” she says. Stay tuned…

NOZUKO’S diary

1999: Nozuko tells her family she has HIV; they support her.

2000: Nozuko’s infant daughter dies and Nozuko becomes ill with TB and pneumonia.

2001: Nozuko battles TB and pneumonia.

2002: Nozuko recovers and becomes a Napwa activist and educator.

2003: Nozuko starts ARV treatment but stops after eight months with liver illness.

2003: Nozuko is still healthy without ARVs, Nqobile is frequently sick.

2003: Nozuko is a volunteer counsellor and starts support groups.

2004: Nozuko is well, Nqobile is on ARVs but still battles infections.

2005: Nozuko back on ARVs and employed as an HIV/ARV counsellor.

2006: Nozuko and Nqobile are healthy on ARVs. Nozuko goes to the United States for a public speaking programme, to address audiences about HIV. Nozuko meets Lawrence.

2007: Nozuko and Nqobile are very well. Nozuko and Lawrence marry.