Sebastian, age 65 / Harare, Zimbabwe

AIDS2016_Sebastian (1)


I remember it was about 15 years ago. I was constantly sick and I didn’t know what was wrong with me. When I was hospitalized for the last time, when I was very, very ill, it was a teaching hospital. A group of students surrounded me and they were asked by a senior doctor what the patient was suffering from. They said that he is not responding to treatment and I overheard it..

I was very worried. They had not told me anything about it, and when they dispersed, I then followed the doctor, and asked him exactly what was wrong with me. He didn’t, he couldn’t tell me that I was HIV-positive. At that time I think doctors were not revealing to anybody about that. They knew, obviously, because I heard the student.

I went to another, private doctor who actually took some tests and disclosed this to me. He told me that he wanted to see me when he finished, he wanted me to wait in the waiting room. And after he had finished everybody he took me out for a drink and told me that he would take me home later on if I wouldn’t mind having supper with him. I agreed.

We had supper, and he told me that there is a certain disease that is coming around that is very difficult to treat, but it’s treatable. Very soon we’ll be having some drugs for that. Then as somebody who was already suspecting, I told him straight away, “Doctor, am I– have I got AIDS?” And then he said you have no AIDS but you have got the HIV virus in your body, which are two different things altogether. He led me to understand this because he counseled me, he told me more about HIV and AIDS, and I accepted it.

But my problem was how I was going to disclose this to my wife. And I really asked him, and he told me to come with my wife the following day to the surgery. He helped me to go through the course and he explained to my wife. She broke down straight away – for about 10 minutes she was weeping – then she told me that, “I’m okay. I’ll stand by you.” And it really touched me. She hugged me and told me that, “If it means we are dying, we’ll die together.”

Straight away I thought that was the end of my life. I started thinking what was going to happen to my children – I had a child who was still at school, the last born. And I was just wondering how she would cope when I’m gone; I am the breadwinner and that is something that gave me a lot of stress. Because I thought that my days were limited. I was devastated.

I had only read about it, and I thought perhaps this disease could only affect, uh, men who have sex with men. That was the belief that we had. And we thought that perhaps it happens in places like America and all, but it never happens in this country… That’s what I thought.

I had seen some people that we suspected in the community to be HIV-positive, but you didn’t really know that they were. There was a lot of stigma around HIV at that time. People were being ostracized. You could even be shunned away from your family. So that was the problem. People didn’t want to disclose their status. The stigma was very rife.

The good thing is that there was a national AIDS conference that was formed around that time by the government of Zimbabwe, and I went there seeking treatment, because I had heard that you could get some ARVs through the pharmacies but they were very, very expensive.  We had no national roll-out of ARVs at that time. When I went there, one counselor told me to come to a support group of people living with HIV and AIDS, and when I joined them, that’s when I realized that I was not alone. There were about 10 in that group, and they actually told me that you could go to an area and form another support group.

I went on to form my own support group at my area. We were only about three, and I started expanding it. I was now empowered. I was determined to find other people who are living with HIV and AIDS and form more support groups to help each other. My wife also joined me: she was now empowered. She had accepted her condition. She was also recruiting other women around our areas. Very soon I joined the Zimbabwe National Network of People Living with AIDS as a district representative. From there I went on to be a provincial representative. I’m now the national chairman of that body.

Only the youngsters that were infected were coming to the clinic to join the support groups. Because the old people during that time, it was a scenario that if one becomes ill with HIV, they would be taken away from the cities, taken to the rural areas. You see, we have got a belief that if one is ill, and if your relatives believe that your days are numbered, we believe that the best thing is to take you to the rural areas where your ancestors were born, just to prepare you for burial. They don’t want to be buried in the cities. They believe that if one dies they should be buried among his ancestors, right in the rural areas. So if they take you there, automatically, I mean, psychologically, you know that you are going to – you are dying. Your relatives have accepted that this is the end of your– they are preparing for your death. Which is really devastating.

It took a long time – I think six or seven years down the line, when I had a position in the national network, going around the provinces – that’s when I started meeting people of my age. I was so relieved. I was so relieved to find that it was not only me. Psychologically it had also affected me, because I thought perhaps there was something wrong with me. How could it happen to me…? With my age and all, I could have known better. All those things are coming into my mind. But when I started seeing other people who are also HIV-positive of my age, well, I accepted it. It’s only natural. It can happen to anybody.

You see the problem, even right now, if I go for my medication… The environment that we get our tablets is not really conducive to people like me. Being mixed with youngsters, you see, there is still stigma. We get into a clinic where people are being treated with different sorts of ailments, and you are sort of told to go in one area, and people– they know very well that these are people who are now HIV-positive. Although the degree of stigma is not as bad as it was, but there’s still something about it.  Some people wonder why an old man like me could be seen collecting ARVs. They think that this is a disease for young people and it’s usually associated with promiscuity. So you know, in our culture, well, the elders are supposed to be role models. So that really makes me feel bad. Mmmm. That makes me feel bad.

We are now role models among people living with HIV and AIDS, but among those who are negative? They don’t admire you if they see you. I live openly with HIV, I’m on national television, I have no problem with that. The community are now accepting me because I’ve always been preaching about this wherever I am. They accept me, but some of them really don’t take me as a role model. The majority of them don’t. But among people who are living with HIV, those are the people who admire the way I do it. Because we still have some of them who are not electing to disclose their status. A lot of them.

Even the caregive– the doctors, they really don’t treat you as somebody, they think it’s not really worth their time, spending time with you. You see, I’ve got a problem with my legs, even right now. When I came to the doctor I told him that I’m having these problems with my legs. He just told me, you know, I don’t have to worry about it, it’s old age. “Forget about it. Just take painkillers.” It’s the things like that.

To be honest with you, my children are now married, they have their own kids. And what really concerns me is that the wives really don’t accept us as good parents because we are HIV-positive. I’ve had my grandchildren talking to me, saying, “Granny, Mom says you’re HIV-positive. What is it all about? Mom tells us this and that.” That really worries me. We try to counsel them, telling them that this is natural, but one way or another it doesn’t really get to them. They paint us – the husband’s parents – as people who contracted this disease through promiscuity or something like that. I’ve since learned to live with it and I try to ignore it as much as I can.

I think the determination to help others, to let people know that it’s really not the end of the world – that kept me going. I didn’t want people to go through what I had gone through. So I tried to help as much people as I could. I think the love of my wife, how she stood by me… I actually think she was stronger than me and I asked myself, ”If she is that strong as a woman, why can’t I be a better person than that?” She really supported me, something that I didn’t expect. Because at that time there were a lot of divorces that were going on, because if one person becomes HIV-positive, it resulted in divorces straight away. Blaming each other and all that, until people separated.

We’ve become really very, very, very close. We really– it’s something that brought us together, and even right now, while I’m here in Durban, I miss her very much. She’s become my best, best, best friend since then. Because at one time I really got sick. It was before the treatment. I really got sick. And she refused to move away from my bed. She slept the whole night there. When I was unconscious, I woke up in the morning and I found her seated by the bed in the hospital. And those are some of the moments that I will never forget.

I think right now adults should really concentrate on the youngsters, especially the youth living with HIV and AIDS. We have a lot of them, especially now, in our community, who are struggling, especially in terms of sexual reproductive health and rights. They come to me as an elder, because in African culture I’m taken as a granny, and the youngsters come to their grannies for advice and all that. So I find a lot of them, especially those born with HIV, they know me, they usually come and ask me questions that they were supposed to have been told by their grannies and aunts. Most of them who live positive, they don’t have anybody. Some of them are orphans, some of them are being kept by extended families, and they are not free to talk about their conditions, and they come to us as elders. So that is the most important role that I think I play in the community, helping the young people living with HIV. I enjoy that. That is what I spend most of my time with.

I think besides these youngsters, I think there is need for me to form some sort of support groups focusing on older people. We sit down, we analyze, we share our challenges and how to solve them. I think each and every one of us have got different challenges that we are facing, but there are no programs that are really targeting people of our age.

What needs to change perhaps is the way they deliver… The services are there, but the way it’s set up, the environment, is not really conducive to older people like me.