It all goes back to just before I was diagnosed myself. I’d just moved to London in 1984, and I’d just found out that all my friends in Manchester just got pneumonia and died, so we obviously were wondering what was going on and heard stories about the gay cancer in America. Some of the doctors said not to worry that it might not happen in the UK, but I was diagnosed myself in 1985, and in 1988 I started getting lesions on my body which turned out to be Kaposi Sarcoma, so they told me I had AIDS and I probably had about two years to live. So I got my family together and told them I was probably going to die in the next two years. They’d seen all the AIDS coffin adverts on TV, they were all very upset. Those same years I saw a lot of my friends just one dying after the other and I was just trying to keep myself together, going to a lot of funerals.
So in 1991 when I should have been dead I met my present partner who I’ve been with for 27 years now. We met on the walk for life - he was in hospital with his partner who was dying, my partner had died, and we met on the walk for life and have been together ever since.
I’ve had Castleman disease, which is something different altogether but still a terminal illness, and I’ve been living with that as well for 15 years. It’s a very rare syndrome caused by the HHV8 and Kaposi Sarcoma, we’re in sort of uncharted territory at the moment, because no one’s survived that for more than 15 years, so I’ve just got to that point where we don’t really know what’s going to happen. I’m probably in the same position as I was when I was told I had AIDS in 1988. I didn’t know what the future held then, but I’m still here, so I guess there’s still a chance. I’m a pensioner next year, I never even thought I’d see the millennium - that was something I didn’t think I’d get to see, and now getting old and becoming a pensioner - getting complaints that old people get wasn’t really something that I expected. I’ve got so many photographs of my old friends, of course they were young when they passed - I wonder what they would have been like today. Life has been a bit strange without them, because they all brought something different into my life, but they’re not there anymore.
Families are strange things at times like that, they come and take over - boyfriends and friends are left to the side. Most of my friends that died, their families made sure that AIDS was never mentioned. There was always something else when you went to the funerals - they always died of something else like pneumonia or whatever - heart failure. It was never pronounced that they had AIDS. Most families just brushed it under the carpet and didn’t want anyone else to know. I always talked to my family and friends about it, not to everyone, but I don’t hide it.
When I was very young I used to get bullied a lot - lots of name calling. I haven’t been called names directly against my sexuality for many years, but at the time I suppose these things are hurtful. But gay men have adapted over the years, whenever we’re called hurtful names we adapt them, it’s like people used to call us queer, so we opened clubs called “Queer nation”, we put “Queer on our T-shirts, we would say “We’re queer and we’re here and we’re staying.” We just adapted these names and then they weren’t hurtful anymore and I suppose we just kept doing that.
I never really knew my father as a father. He was just this sort of bossy figure, more of a boss. He never really accepted my sexuality. He found it very difficult when I told him I was going to die of this virus. Funnily enough, years later he actually really got on with my boyfriend Martin, and I sort of got to know him a bit better over the last few years of his life, but I sort of regret I didn’t have a bit more of a family feeling growing up. For example he never touched me in a sort of way like a father might touch his children - like lifting me up. I can’t remember any of that. They do say parents know if their children are different, and some parents won’t accept that their child is gay. But as my father got older I think things did change. I don’t know if he accepted my sexuality, but we got to know each other a bit better. I just regret we didn’t know each other when I was young.
London really shaped my life in a positive way. London changed my life - all the lovely people I’ve met - I wouldn’t have met them. I wouldn’t have met my boyfriend if it hadn’t been for HIV, because it was on the walk for life. It would have been completely different. My life is all about having HIV, its shaped my life, and I’m still dancing through life.
I decided a couple years ago to have an icon made - just a little remembrance of all my friends that had died, so they’re all rubies on the icon and I’ve set a diamond in it, and that’s me still surviving - just so they’ll never be forgotten. In my icon you’ll see me dancing, because that’s what I’ve been doing - dancing through life. For many many years I was very well known in the London club scene, I mean VERY well known (laughter).
I don’t know why I’m still here. Of course I’m pleased I’m still here, but I don’t think about it in the sense of it might be over tomorrow. Of course there are times when I’ve been very ill in hospital and the ghosts of my friends have come to visit me and I felt maybe they’ll take me away tonight, but they never did. A few times I’ve been very touch and go, especially with the Castleman disease, because it gets into the lymph system. One time they had to take my spleen out. I was in four hospitals over seven weeks and it wasn’t very nice, so I do have times thinking I’m not going to survive this one - but I think it’s the people around me - my family and the friends I have now – it’s their input in different ways that keeps me going I think. Being Catholic, religion is still a big part of the way I get on with life. I do pray every day, I pray really hard when I’m poorly or in hospital. I do think prayer helps. I’m not telling everybody that they have to believe in God - just pray in some sort of way to something higher than us - it helps, it’s always helped me - you don’t even have to join your hands together to just say a few words to the Almighty (laughter).
I can’t imagine living without HIV because it’s been more than half my life living with it, I think it’s actually made me a better person – it’s a bit of a cliché, but I don’t think I would be the same person. I’ve never been a bad person, but I don’t know - I don’t know how to answer the question, I don’t know why I’m still alive. I’m thankful to be alive, I try to help other people - be there for people who have been newly diagnosed. People will message me when something goes wrong and I’ll sort of put them at their ease - young gay men, anything between their 20s and 40s. With knowing that I’m a long-time survivor they contact me. I like to send them in the right direction and put them at their ease.
HOW DO WE GET RID OF THE STIGMA
How can you get rid go the stigma of HIV when there are still so many people who won’t accept homosexuality? There’s still so much homophobia. What you’re asking about HIV, it sort of goes hand in hand with homophobia, because when people think of “He’s got AIDS or HIV”, they’re talking about gay people, and in the old days when people find out you were gay they’d say “Oh he might have AIDS”. But I think it’s improving, I find gay people are more accepted in today’s day and age so the stigma must be getting - you know, it must be getting better. It’s still there, but its better. But I don’t think we’ll get rid of the stigma completely no.