Hope, age 62/Francistown, Botswana

AIDS2016_Hope (1)

I was working with a family, and somebody had some kind of blisters that week. I was in Australia then. I was away from home, I was away from a lot of people. I was alone. Even though I was in denial, I knew what this was, because I had been unwell. I don’t remember what was the main problem then, but I remember that I was unwell at least from 1997, 1998 – somewhere there. And I think it followed the stress that I experienced when my husband had died back in Botswana. We were divorced. He died of a heart attack, I think. I think that’s where my immune system really deteriorated.

The major symptom that showed up was the, um… how do you call it? This very painful rash. And then the fire-like blisters. Oh, that is painful! It was unbelievable. It started, I had a little chill on that day, and just as I got the chill, then I see one-two-three-four- five-six-seven-eight…. there are many blisters just like that coming, pshooooooooo, up my arm. I said, ”What is this? Not me. Why me?” I’ve never talked about this, so I feel like I’m going to cry, you know?

I kept my hand bandaged right up to where the rash ended. At night I couldn’t sleep. I’ve never experienced such pain! I would go to the bathroom, put on cold water. One day it was so painful I felt like I was crazy – I just wanted to, like, undress. So I went to the doctor when I couldn’t bear the pain anymore. He said, “Oh, why haven’t you been coming? There’s something that can help you deal with this pain.” I said, “Really?!?” Because there was so much stigma.

I had been to this doctor before and they had said to me, “Oh, you are from this country where horrible things happen?” Yes! He said! So I didn’t like him. So anyways, I went with this problem, and he gave me some painkillers and at least I began to find my sleep at night.  But I still had my hand bandaged and I was telling my friend, “Oh, I have a really, really bad finger.” Those painkillers were really helpful, but the constipation that I got from those painkillers – OH! I didn’t know what to do now, you know?

So anyway, it became better. I was studying in Australia, doing my master’s in psychiatric nursing. Then I went back home, to Gaborone. I had a cough that was very dry that troubled me a lot at night. My physician kept on saying, “You test.” I said, “I can’t.” Then I go back again with some other complaints. “You test.” I kept on refusing. Until it came a time that I got a scholarship to go and study for my PhD. I wanted to go back to Australia, and I knew that Australia won’t take HIV positive people, so this is the thing that pushed me to go and test. My test I think was in 1999.

I don’t remember when the treatment was instituted. Woooo! That was horrible! The nightmares! Oh! The nightmares! They would make you not even want to sleep. As if that wasn’t enough, the feet – I couldn’t walk. The pins and needles. It was horrible…

I decided to go for my scholarship in the United States, and I went to there with these pins and needles. There wasn’t much treatment for these pins and needles in Botswana, but in the United States I got some treatment. I have the antiretroviral treatment. Then I have the pins and needles, and I have a treatment for the pins and needles. And then I have side effects from that treatment, and I have something to treat the side effects, and I went on and on.

I decided one day, hmmm, maybe I can live with these side effects. I told my physician that I’d like to stop this thing that is treating the side effects because it will also have some other side effects. Then he agreed, and I lived with the pins and needles. I don’t know when they disappeared, but now what I live with is some kind of numbness in my feet, but it doesn’t bother me anymore. I wish I was more sensitive than I am, but I’m fine with that.

I have to honestly say what I’m disappointed about now, which I cannot reverse, is the physical changes that I observed. They’re not huge or many, but they are visible. It started changing my body structure to be bigger on top, on the chest, and smaller downwards. And I had round – really round legs, nice legs, but now they look athletic and I didn’t even know, because people in the States don’t talk about your body. But at home they talk about anything they see on your body. So one day I go home and my mother said, “Ah, your legs have changed. Now they look like your father legs, huh?” Then I began to see them in the mirror, and they really look athletic, and that wasn’t me. But I’m living with that. That’s what I have now.

What makes it easier was my three children. I have four – the first one is a critic. I think up to now he’s not sure – because I mentioned it like I’m joking, and then he said a word that I didn’t like… I don’t remember what he said. But the other three are very supportive. So, for those three, I was able to deal with this.

My mother was another person who did not understand, may her soul rest in peace. Because my other sister had died just before I left to go to Australia, and my mother was really critical. She said something like, “I don’t even know how this kid got into such, um, dirty life.” I said, “I don’t think it is really a dirty life. It’s just that you get to get the disease somehow.” But I got that message. So for many years I didn’t tell her, until people really started dying in large numbers, and relatives started dying, and then she would begin to be aware that people who take their treatment live well. So one day in passing, I said, “Ma, I’m also taking this treatment.” And we never talked about it.

I’ve never come out in public, because I’m held in high esteem back home and people create this myth that no, no, she cannot. I told my friend that I trusted very much and she said, “No, no, you’re joking.” Then I said, “Okay, she’s not the right person to tell,” and I never went back to her. But my children, and just reading the stories and listening to other people on radio and talking to people that have a positive attitude has helped me to be where I am today.  

Yesterday we had a meeting and this girl stood up and talked about who she is, and that she’s living positively in a group of about 80 Botswana – we call them Botswana, people from Botswana. And I said, “Oh, that is brave. If she can tell her own people like this, I’ll go for it.” Even if my people went online and they saw it, that’s most likely what they’re going to say to you: “Oh, I saw you online on this website that says ‘The Graying of HIV/AIDS,’ and I’ll say, ‘Yes, you did.’ And that’s all they will say. They will say a lot behind my back, but I don’t care. I would rather you learn from me because I believe a lot of us have experienced the pain of HIV and AIDS. A lot of us. I don’t know who is exempt from this right now, as I’m speaking, in Botswana. We have had friends, we have had family, we have had… everybody that we’ve known somehow, one way or another, having suffered and even died of HIV.

It will help somebody. It will cause somebody to have something to talk about – to gossip about. But a lot of people, especially of my age, will be helped. And they can come to me if they like and I can talk to them, because I’m a counselor also. I have opened to my clients. I said, “Because you are struggling so much with HIV and AIDS, look at me. Between me and you, I’m living with this virus and I live well, and you’ve got to try and live well with it. Because I think it is more controllable as opposed to many other diseases.” So, my hope is it will help somebody. Yes.

I go to a public clinic now, because my viral load and CD4 count had an issue until I was moved to the second line of drugs. I’ve never met anyone that I know in this public clinic; most of the people at my, um, social level would go to private doctors. But in this public clinic, I meet with many people and because of the stigma, we’ll look at each other, and we know we are of this age, and we don’t talk about the virus. We can talk about anything else except the virus. People don’t talk.

I think sometimes I do grieve my status. I go about thinking of writing a poem that says, “My blood is blue because it has a virus.” I don’t think that would help people, but for me, if you would awaken me from my sleep, I would say, “My blood is blue.” It’s metaphorical.

I will die but I don’t want to die of AIDS, so for that reason I take my pills. I don’t want the debilitated states when somebody has terminal AIDS. I don’t have these other conditions like diabetes or hypertension, I have only HIV. And then sometimes, I say, “If only I did not come into contact with this guy!” – because I think I know who infected me – “I would not be taking any pill.” I feel jealous that I have to take pills because I met somebody, and this person, he died of AIDS. Whenever I talked to him, when I thought he was really misbehaving, I said, “You know, you cannot really do this, because there’s AIDS in this world.” He once said, “Oh, no! What is that AIDS? There’s nothing like AIDS!” Then I knew we’re in real danger here, you know? So that’s where I am.

One concern that keeps running in my head is: fortunately I don’t have a partner now, and worldwide, people can use condoms. But my thing is, how do you know it is right to let your partner know that you’re HIV positive, and what is the outcome? It’s a fearful question. It’s a fear of losing the partner. ‘Cause what they do in our country is, you come out, say, “Yeah, I left her because she has a virus.” But that does not matter to me anymore, really, because my principle is that if something is bothering me, I tell somebody. It is up to them how they use that information, ’cause I feel relieved.

I want people to know that – I don’t know whether to call it sexuality or sexual feelings…? – never die with age. Only the potency reduces, but it stays there. And especially the young people, because there’s a myth that as you get older in some way you just come, like, to a dead end. There’s no dead end. And I want people to know this, because one day they’ll be this age and they will discover that sexual feelings go on, and they need to be met if it is possible, you know?

I really want to see a place – a safe place – where adults can come and say, “I’ve been into risky behavior and this is what I’m going through.” Five years from now, I want to see me having a non-governmental organization, and if I’m not starting too big, I have a counseling section, I have a place for people with mental health issues. I have, in the same center, sexual and reproductive rights of the elderly. Because I don’t know – if they do get infected, especially in my country – how do you go and say, “I have a vaginal discharge,” to maybe a 30-year-old?

So I will make it a reality.

There’s a lot of ageism coming up.  I get really surprised when people point at me and say, “That older woman.” I say, “Oh! Is that me?” People will bring this “old woman” thing unnecessarily. You get it a lot, especially here in South Africa. Because they speak in their language, they don’t think you understand what they’re saying, but I understand the language here as well as the language in Botswana. There’s a specific word that is used to refer to older people. Unnecessarily, they define you by your age rather than who you are.

In my country, after 60 you cannot get any more loans with the bank. When you work for the government, 60, you retire, whether you want it or not. For me, because I work for the university – 65, I know I have to go. I kind of like it though when I’m given first preference because I’m over 60. I like that. In my country, you can jump a queue if you’re 60. But I got a shock the other day. I was traveling from Pittsburgh to New York, and I’m getting into the Greyhound bus and they say, “Women or parents with little children come forward, as well as seniors.” So, for me, I’m just sitting there and relaxed. Then my son says, “They said seniors. It’s you.” “Senior? Me? Okay, I’m going.” I couldn’t connect with it right there and then, you know? But then I have to sit down and reflect, and say, “I’m a senior.”

I’m more than my age. I have many other things I do, other than being 62. You know? See me. Ask my name. Talk to me by my name. I have an identity. I can’t be defined by “that older lady.” Find out who I am, you know? See wisdom in me, see something that you can tap from me, not somebody that you just want to discard. I don’t want to be discarded, because any country is what it is because of those that have been there before.