Proscovia, age 55 / Tororo, Uganda



For a long time, I have been working with the media. I have been writing my stories, and that’s how I’ve been getting support. That has allowed me to be what I am today.

I trained as teacher, and so at a teacher’s college I was taking charge of adolescent youth, and that was a time when there was a lot of talk about HIV. It was on the news. We didn’t know what it looked like. However, I was sold off, typically, to an older man, to get married. My father gave me away.

So, I was cheaply sold off to a man who was far, far, much older than me, who was a driver and he had several wives out there. Every state he was driving, he would have a wife. So, when I got to hear about HIV and how it is brought about, I said, you know, this kind of behavior with this man with all these lots of women around, am I not really at risk? And if I’m at risk, how am I going to tell the youth that I’m teaching?  Suppose I get an attack. So I was very conscious and suspicious that I could have picked HIV.

So in 1997, when it was World AIDS Day – first of December – they went around the communities asking people to go for HIV tests for free. I walked to the place where they were testing from and I took an HIV test without the knowledge of my husband. He was a drunkard. He would come home drunk, would not understand me, the teacher that I was, the young lady that I was, you know? And so I took up the test, and by the time I was taking the test I was very sure – I did not doubt. So I was not bothered, I wasn’t shaken, that I needed a lot of counseling, no? I knew the result would be that I am HIV-positive and indeed, it came out to be true. I was given a referral letter to go to the AIDS Support Organization that is past Tororo. I willingly walked over there, I was registered, and I started receiving the support services that were available at that time, in 1997.

Nineteen ninety eight I continued with the support, then my husband got sick, became bedridden. He started getting admissions in the hospital, in and out of hospital, in and out of hospital. I would see that I was having lots and lots of opportunistic infections on me and then I got the treatment that I needed at the AIDS Support Center. I talked to him about taking an HIV test, but the cruel man that he was, the young girl, the tiny thing that I was, would not, I think, allow him respect, yeah? And then, because he was such a cruel man, I also feared to say it twelve times; I said it once and then I said, “No, let me save myself from the beatings.”

So, when he was totally bedridden is when, again, I asked him, “Let’s go for an HIV test together.” When I convinced him, he crawled, because he was now very weak. They took the test. They had a good counselor who already knew me, had the skills of counseling both of us, and gave us – I also took the test again, together with him, because I knew, obviously.

And indeed, both of us were found HIV-positive, and so he was enrolled into the support services and the treatment that there was. But it didn’t pick up, and so he died in 1999, leaving me with four children. The youngest was four years at that time. But I’m glad he is now a grown man. He celebrated his birthday last week.

I am very thankful to God that I’m alive, as an old person living with HIV, as a grandmother. I’m happy in my heart. Mmm-hmmm. The counseling support played a very, very big role. The AIDS Support Organization gave me a lot of support. After the death of my husband, they took one child and paid half of the school fees for her at secondary school for four years, so I must look for the other half. Another girl who follows her, Plan International also gave her half school fees. So my little salary as a teacher could cover the other half, and the other, older boy, who was at university. It was not easy. It was quite tough.

In my small world, my own way, I became an activist. To fight for myself, fight for my life. Because when my husband died, at the time of burial – putting the body down – remember he had older children, some even far, much older than me. I was beaten. I was beaten and chased away from the home. Like, now that I’m speaking, with only this dress on me? And then something happens. I run out and we leave my bag. That’s how I left my home.

I had not to carry a cup, I had not to carry a blanket, I had not to carry a mattress, I had not to carry anything. Yeah. So I left the home before the completion of the burial, I ran out of the home and went to start staying with a government official who was the probation officer, because of the young children. I did not have anywhere to take them, so he gave me a small kitchen. In Africa we use firewood to cook. So all over was black with soot, but I managed. I stayed in that place for about three months, then I got some little money. I rented a small place in a slum, and stayed with my children as they kept growing and going to school. I kept on shifting from one place to the other: whenever I could have no money here, I would move there. Have no money for renting this place, I would move to the other place.

Center for Disease Control came to Tororo in the year 2003. By then, I was now a leader – growing up slowly, slowly, in my own way, in my own style – in my community. Going public was something unheard of. It was not easy. I did not really have the advocacy skills, but I just managed it in my own way. And so I think I became so loud that the education officer could not stand me. When I went public about my HIV status, I was chased away from teaching.

I was too vocal, and I was being given positions at the AIDS organization – because all professionals were hiding away and therefore there was no one to speak for us. If you wanted someone to speak it would be, you know, primary school dropouts who could not bring out the issue. So I was made the chairperson of the Center Advisory Committee – a big title, a big government employee… It’s not a paying job, but I was passionate about supporting ourselves. My time, sometimes, would be taken up by the other activity – they would come to school asking me to get to the center to do something and meet visitors, because the Center for Disease Control was being introduced in two districts in the whole country of Uganda. Who was to speak? I had to come in.

The community, on the other hand, said, “No!” This vehicle, AIDS Support Organization, with a big label? Cannot keep coming to our community all the time. This woman who is HIV-positive – we don’t want her. The chairman of the school management committee had just lost his wife, like, a month ago, to HIV. He did not want to be associated at all with anything to do with HIV, didn’t want someone to talk about this thing with HIV here. No, no, no. So, they looked for a way of eliminating me.

One morning when I was going to school, one of the teachers rang me, because I’m a head teacher of that primary school, and said, “Don’t get here. They’ve got big, big, huge padlocks – three of them – and put on the door of your office, and they’re holding clubs, waiting for you. Should you reach here, I’m afraid they might beat you up.” So, I said, “Oh, thank you.”

I went to the education officer and reported, verbally. He said, “Ah ha! Proscovia! I knew this would happen! Here we are! So, what do you want me to do for you?” I said, “Sir, I hear the parents and the members of the community have locked me out of the school. I don’t know what to do.” He said, “You went in public and told them you’re HIV-positive. That’s the benefit you’re getting. You go home and sit.” Just with this voice, like that. And I went home and sat. 15th August, the year 2003, I sat at home. I did not work – 2004, 2005, ‘6, ‘7, ‘8, ‘9, ’10. I did not work!

I broke down when I started taking ARVs in 2003, and I was bedridden for eight months, when I did not work. Of course my children were at school, but during holidays they would come home and help me out. My mother is still alive; she gave up the activities in her home and came and helped me. My mother, who was much older than me, came and helped me. She stayed with me, and cleaned me up, and fed me.

How best could I make people know what I was going through? Because the government leaders were trying to suppress me. The more I spoke out loud about my HIV status, the more they suppressed me. So I had to look for a way of coming out! So I started writing out stories in the newspapers and the magazines. My first story came out in the year 2003. Two came out in the year 2009 when I went for this microbicides training, female condom training. School newspapers, magazines, I’ve been writing about myself; on televisions I’ve been talking about myself. It makes me happy to be part of this group – I’m not scared about it. I feel nice when I talk to media and I share my situation with people probably who are learning about it for the first time, or people in similar situations, so that we know how to live positively and we believe we have a longer life to live. Yeah.

I personally have gone through a lot of stigma and discrimination. I’ve gone through a lot of bitterness, and I only wish people would understand that living with HIV is not easy. If they could give me my peace, because I understand and I know stress kills HIV-positive people more than anything else. If I could just be given my peace, I think that would be important. I love being peaceful.

I have done everything possible to keep myself very healthy. I used to walk with a stick – very weary, very much worn out, very thin, eh? Suffering. But today, I have tested my viral load: it is undetectable. It’s undetectable! I got those results about three months ago. So that makes me happy. Secondly, I love eating. And as I eat, I know I’m building on my body. I eat lots and lots of fresh fruits. I drink plenty of water.  Topmost: I adhere to my drugs so, so seriously. I take them religiously.

I support the children living with HIV that are surrounding me. In my home, I have five of them. They’re not relatives in any way at all, but children that were in schools where I was, and they’re HIV-positive. We talk about HIV all the time. I wish, through me, those children could be supported, because now they entirely depend on me. I have retired from teaching. I no longer get government salary. I’m just… there? Yeah? And what we are seeing – that most parents have died and left these grandchildren almost naked.

I appreciate the government has brought services closer, like medical services, support services, but there are no drugs in those hospitals in Uganda. There are no drugs. The system – the whole system’s broken down. So, as a grandmother then if I was to carry this sick boy who is also HIV-positive, like me, to the hospital, I’ll walk that distance and get there and there’s no medicine to be given to treat me or to treat this boy.

I wish that we could improve upon the health support services, especially in government hospitals. It is the non-government organization that are giving us most of the support. But we have fear. As a local woman, I hear some donors are going away. I don’t know what our future is going to be like, but I will just pray that the older grandmothers are given support, to support ourselves as well as support the orphans and the vulnerable children that we have that surround us.

I keep to myself in my house. Rotate TV channels; I watch and console myself with that. On Sunday I go to church. But basically I can even stay in the house for a full week without getting out when I don’t have any business, because I don’t really have any money anyways to go out there. I’m very comfortable in my home and the house that God has given me. So I keep myself off from stressing people and stressing myself.

I call my children and talk to them on the phone. My firstborn son and his wife, who now have three children, have completely rejected me, so I don’t call. I get nothing from them. I don’t know how they are doing, they don’t know how I’m doing. If I’m sick, they don’t take me to hospital. It is these three younger ones who take care of me. So I call and share my sorrows with them. But my counselor’s always very handy. I can walk over to the AIDS Support Organization Center, chat with peers. Yeah? We have, on a daily basis, HIV-positive people in the compound. We chat, I forget, I come back home with a fresh mind. That’s how I manage it. Or I go to the church. Sing around, worship, pray. I go to the priest. He counsels me if I have issues. That’s how I manage. Yeah, because I don’t like to go and gossip in the neighborhood.

I am a counselor myself. I have a certificate in HIV counseling. I handle lots and lots of people who are HIV-positive who are worse than me. So it makes me feel happy to see that I am much better than them. Too, I have not gotten to remarry. I don’t like stress. Another man to come and stress me, when the other one stressed me until he died? I like my freedom, like I said. I like being peaceful. I have lived positively. I know my rights, almost at my fingertips. I can open my eyes and challenge someone who is not HIV-positive in my community, and say, “Sir. Come on. What are you telling me?!?”

I don’t know whether I will be paid my pensions because I resigned from teaching. I had so, so much rejection that I had to resign. I don’t know that I will be paid. It worries me. We have been taught skills on how to write our memory, a memory book. And we’ve been taught skills on how to write our will. Some of us have assets that go with our hearts. And when we are no more, having struggled to get those assets, someone else is going to come and grab them from our poor children who saw us struggle to get them. So, how are we dying and leaving this world, and leaving our children helpless?

I have written my will. It’s better for us to write the will. And the government should respect our will. Because there’s a lot of corruption in our country. A yes becomes a no and a no becomes a yes and it is normal. The wrong one becomes the right one, and it is normal. So, I wish the government could open their eyes and respect the wills of the people. That would be good. Yeah.