Diary of an HIV/AIDS Activist

These are excerpts from the diary of Rose Thamae, the founder and director of Let Us Grow, an HIV/AIDS support and rape crisis centre in Orange Farm, an informal settlement 30 km south of Johannesburg, South Africa. For seven years Thamae, who is HIV positive, has worked hard to build a grassroots organisation to care for those affected by HIV/AIDS.

Woke up worrying about whether or not we will find transport to attend a Human Rights Day function in town. I begin my morning rituals. First I check on my body. Do I feel any sickness anywhere? I look in the mirror to see if I’m still the same me. If something doesn’t feel right I know I need to go to see the doctor immediately so it won’t get worse. I take a multi-vitamin. I also take a Diflucan tablet because my throat feels irritated. After vitamins I exercise on a machine I call the running wheel; a gift from a colleague. When I feel strong I can do it for 20 minutes but other days I’ll do it for 10 minutes.

Kgomotso, my 11-year-old grand daughter, wakes me up for our morning talk. Our rule is that she can’t leave for school before we discuss how things are for each of us. She reminds me that she will be going on the school camping trip to Mpumalanga and that I must not forget to organise the things she will need like a torch and a sleeping blanket. Kgomotso tells me about her trip everyday.   She never wants it to be far from our minds. She’s worried that I will not have money to buy the things that she will need. She says, “Before we can buy mealie, please buy the torch.À

This is the big day, the World TB Day. I’m up early because I feel a lot of stress this morning. Before I go to the TB march, I need to visit the family of a member of our HIV support group who died last week. She will be buried today. She came to me last year feeling very isolated and alone. Her family was not supportive and she knew very little about living with HIV. Now I must offer my sympathies to the family who rejected her. But everyone must go home when they are buried, so I must help them if I can.

The march was a noisy affair. We were singing and dancing along the route. The fire engines led the march sounding their sirens. I used a megaphone to announce to the community that the World TB Day event was happening. I shouted, “TB can be cured. Come to the stadium to find out more information.À They wanted me to stand on top of the fire engine but I was afraid. I chose to sit, instead, on the bonnet of the traffic police car because they were moving very slowly.

I’m now at my third meeting for the day. I am expected to report to one of our funders. They have funded us for three years, each year increasing our funds. They asked me to make a presentation about how the funds benefited our programmes before they agree to re-fund Let Us Grow. The meeting went very well because they promised to fund us again after we submit our funding proposal.

I am due at the Department of Health in the city centre to attend a small workshop on the roll out of ART’s. This roll out is very exciting for all of us but it is also a big responsibility for those providing home-based care. The process to qualify for ART’s is long and complicated and each patient will have to be guided through it, as well as closely monitored once they start. It is a big challenge for NGO’s. I know we can do it, but our resources are being stretched. Let Us Grow caregivers work almost every day, including weekends because there are emergencies. They haven’t been paid a stipend since December. How are they managing? What are they feeding their own children? How are they paying school fees? I keep worrying about money.

I am walking home from the taxi rank. The meeting finished after lunch. I now am faced with the problems at my house. We are just like the people with paying jobs. We work everyday and on the weekends we have to look after our home. I worry about feeding my family. I support four adults and four children. Our kitchen is stocked with a full 5kg bag of mealie meal, one carrot, one potato, one tomato, and a bit of oil left in the bottle. These last few have been very difficult. I don’t know what to think. Nobody forced to this field of HIV/AIDS. I do this work because I love it. Is it right to keep doing this work when I cannot even feed my family?

Myself and the Let Us Grow choir and staff arrive at the home of one of our patients who passed away last week. We will bury her today but first we must stay at her house with her family. We were all wearing our T-shirts. Our choir makes me so proud. Their songs truly comfort the family. Most of the songs are educational songs and teach people to deal with AIDS and fight the stigma of the disease.   The way they sing, I can see that they really touch all who are listening À“ even the young people À“ because the choir is made up of mostly young people. When I hear them, I realise that I have achieved my vision; my dream of an HIV/AIDS support organisation.

Today is the day to work on the proposal. I call Sicelo, our administrator and our computer expert, to come to my house to work. One of our board members, Lori, just donated a small laptop. She says it is outdated but we are happy to have it. Sicelo walks with it always. He treats it like a baby. I see him wipe the dust off the outside, the screen and the keyboard every time he takes it out of the case.   We’ve only had it for two weeks but he’s read every manual and spends every minute he can learning how to use it. It makes me happy because I am too old to learn computers.

I am so happy to have Sicelo on my side. He calls me “My Old LadyÀ and asks me every morning – and I mean every morning – the following questions: “Did you take your vitamins? Did you have breakfast? Did you sleep well? If he sees that I am tired, he tells me to go home, and he’ll take care of everything.À

I woke up early because I had to go to town to meet with a new board member. I had to search the whole house for transport money. I even checked the sofa cushions. Nothing. I ran to Lucy’s house and she said she only had money to buy bread. Then I went to our secret money box and took seven rand to get to town. At the Bree Street taxi rank, I called Lori. She said she was still busy. She asked me to go straight to her house and meet there. But I didn’t have any money for the second taxi. So I had to ask one of the taxi drivers I know from Orange Farm for money. I was embarrassed but I had no choice. I told him that I’ll bring money next time. He smiled and said he didn’t want my money.

Sometimes I feel I am all alone in the struggle to help people affected by HIVAIDS. But this small gesture reminds me that some people notice my work.