Originally I was from Scotland. I’ve been in South Africa now for 36 years. I think I befriended my little virus in South Africa – that’s 30 years ago. AIDS in South Africa in that time was very different to what it is now.
It was bad. I worked with an organization who were caring for people who’d been rejected from family and friends and homes, and we tried as best as we could, but a lot of people died. Hundreds. Hundreds. Unnecessary deaths.
We were going to so many funerals that I recall one day, at St. George’s Cathedral in Cape Town, at yet another funeral, we were standing to sing the proverbial hymn, and I was thinking, “What am I going to be having for supper tonight?” And that hit me, like, so much, in the face. I thought, “I’m getting immune to death! It’s having no impact on me! It’s having no sorrow on me!” So, I had to step back. I stopped going to funerals. I would say my good-byes way before the end.
So, yeah – it wasn’t pretty years at all.
I was in a gay relationship and unbeknownst to me, my partner had infected me with HIV. It was very confusing for everybody in South Africa at that time. What we did know: it was a death sentence and we would be dead in six months. That’s the information our doctors gave us. And so my partner just sort of fell to pieces, thinking that he had given me a death sentence.
Most of my period after learning my diagnosis was containing my partner’s emotions. And that was good on one side, because it helped my partner get through this, but it was bad on the other side, because it didn’t allow me to realize just what the impact was on me. And 30 years later, I still don’t know.
I’ve never really dealt with HIV. Although I live with HIV – I’ve conquered HIV, it is my friend, I sing to it, I dance with it, I have one major message to it every day: “If you kill me, I kill you, and so, let’s live happily ever after” – I’ve never had an opportunity to really sit and discuss, “What did I feel 30 years ago when I was diagnosed with HIV?” I’ve never really been able to express what that feeling was, because I didn’t go through it. I’ve tried it over the years; I think it’s been buried deep down inside. A lot of death has happened – I’ve been involved in HIV for 30 years – so I’ve really pushed it to one side, and I’ve buried it so deep that it’s like a Pandora’s box for me now. The times that I have tried, through discussion, to bring that up, it was just too emotional and too strong for me, and so I just keep pushing it back down again.
I became actively involved very soon after our diagnosis. Within six months we started the first support group for people living with HIV in Cape Town, and ever since that day I’ve been involved with HIV. And throughout the years, I’ve worked at the regional and international level, and I still work in HIV fields today. It’s a positive and it’s a negative. The positive is: I live for HIV, I work in HIV – it’s my life. The negative is: I think I’ve given too much of my life to HIV, and I’ve ignored my life, who Rick is, and his dreams, his aspirations, etcetera. I’m proud of being part of a movement for so many years to create change for people living with HIV, but sorry that I’ve lost a lot of my life and my own personal development and happiness and dreams.
My first partner, we remained together – we were together for 13 years. And until he passed away with HIV, I threw myself into HIV. My partner was not as involved as I was, and I realized at a late stage, when my partner started to fall ill, that I’d given too much to HIV and we had missed out on a lot of holidays and just doing stupid things together and growing together and loving each other. But we had a wonderful life. I thought I would never find love again. I was deeply in love with my first partner, and when he passed on, I just thought, you know, that’s it.
It was five years before I met my current partner, I was out with friends, and my current partner was in the pub that night, and he had just broken up with his partner. And our eyes made contact, and as they say, the rest is history –we’ve been together now for 12 years, happily married. And during this relationship, I’ve tried to maintain a balance with work and my relationship with my partner, and it seems to be working.
It was frightening. I am open and I always have been, but there’s times, in the gay scene, that you are not open, and that could be in a bar situation. So that has prevented you from making a possible contact, because you are very afraid of what the partner’s reaction would be, if there’s any rejection, etcetera. Ironically, my current partner, when we did meet, I didn’t disclose my status for about two months because I wanted him to get to know me and not my HIV status. And the night when I did pluck up the courage to disclose to him, he just burst out laughing and said to me, he says, “Rick, I’ve been trying to think about the same way to say to you that I’m HIV-positive.”
It’s been a wonderful journey. We understand each other. There’s no prejudices. It’s just living with the virus as best we can. I’ve always been the carer. I was the carer for my first partner; I’m the carer for my current partner. When I’m not well, I’m one of these that sort of pulls the shutters down, and I take care of myself. Although my partner sees that I’m unwell, and he will do everything to sort of get me through that. And I allow that, but I also just work through it myself.
We’ve developed a method of communicating which some may call a bit silly, with regards to the virus. If someone’s sick, we have “a nurse” that we call. Well, we have three nurses. We have “Florence Nightingale”: she’s nice, and she is very sort of concerned and consoling. But if you don’t listen, then “Sister Gertrude” will come along, and she’s more of a stickler. If you don’t listen to Sister Gertrude, then Sister Pumpernickel comes in, and she has the stick, and she will make you take your meds, and she will make you eat.
My partner had cancer as well, and when he was taken home, he was losing weight because he wasn’t eating properly. So Florence Nightingale, which was moi, was trying to be the nice, compassionate, you know, “Come, love, try and drink this, just a little bit of this. We’ll blend the food, etcetera, etcetera.” And that didn’t seem to be working, so Sister Gertrude came out and says, “Come, you need to eat now. You need to drink this. That’s Ensure. It’s gonna be good for you.” So, little sips, little bit of this, little bit of that… but not enough. He was still losing weight. So then Sister Pumpernickel comes out, and that was it. “Enough. You will bloody well eat this now, if I’m gonna force it down your throat.” I made him eat. And he went over that sort of hill, and then he started to feel better. But I think, for many, they would just leave it at that sort of Sister Florence stage, and that’s not helpful because, you know, the person could just sort of fade away. I’ve seen it happen over the years with all the work I’ve been doing. I’ve seen it happen.
So we have that silly, stupid kind of relationship when we’re talking about HIV or illness. We have our our little AIDS language, and it’s fun. People look at us and say, “What the hell are you saying?” And it’s only between myself and my partner, and we just look at each other and we just laugh.
I’ve always had the belief that my virus will never beat me; I will beat my virus. I’ve had two bouts of cancer, I’ve had PCP, I’ve had deep vein thrombosis. So, there’s many potentially fatal opportunistic infections. I do take medications if they’re prescribed to me, but I believe that the mind is such a powerful thing that we don’t really realize how, if we can utilize the mind in a positive way, it can help and heal our body. But, yeah, there’s days that I really feel down. There’s days I just sit in front of the couch and just don’t want to do anything. There’s days I just want to cry, want to scream, want to hit somebody, and days when you just sort of say, “Okay, let’s get on with it. No use sitting down and screaming and crying, that’s not going to help any, so just get on with it.”
My main concern is that the day I do walk away from HIV, what do I do? I have no skill. I have no experience in any other part of life. HIV is my life. So my concern is, if I were to lose my job tomorrow, what do I do? A 60-year-old man living with HIV. That’s a major concern for me. I don’t think about it – it’s one of my coping mechanisms. I pull the shutters down and I push it down deep inside. And when the day does come I have to confront it, that’s when I’ll confront it.