WORLD AIDS DAY 2018: MICHAEL & BRIAN.
Michael Penn and his partner Brian were diagnosed with HIV at Christmas in 1986. Brian died only five months later aged just 39.
For me, World AIDS Day is about remembering Brian – my partner who died back in 1987. For the past 30 years, on 1 December, he’s been my focus. This year I’ll mark it in my own sweet way. I’ll take a walk with my dog Lucy to the river where my partner’s ashes are scattered and reminisce. Then maybe I’ll go to the local vigil organised by Terrence Hiins Trust.
When I sat with Brian the night he died, I said to myself, ‘This disease is not going to get me’, and so far it hasn’t. We had a wonderful 17 and a half years together. He died two months before his 40th birthday. He’d been showing signs of getting ill for some time and it all came to a head that Christmas. He had lost a lot of weight. I got him back to London and he was diagnosed with Kaposi’s sarcoma. I was advised to be tested, which I was, and it turned out that I was HIV positive too. But I didn’t even think about it – I had other things on my mind and I had to concern myself with Brian’s wellbeing.
It was a pretty rough time for the next five months until the May of that year when Brian passed away. Then I had to start thinking of myself. Not that I did, because I hadn’t been told I needed to take medication. It wasn’t for another three years that I was told I needed to be taking AZT. I’m amazed at the way medicine has improved over the years. I was eventually put on combination therapy and that’s all been wheedled down – now I take four drugs in two pills which I take once a day. And my viral load is undetectable which means that I can’t pass it on.
I was pretty frightened and scared at the time, trying to keep a good job going as well, and, looking back on it, it was a pretty horrendous time. But you have to get on with life and take it by the horns.
I remember the first World AIDS Day in 1988 very well. One of the churches near me in Ipswich opened a book of remembrance and Brian’s name was one of the first in it, which I was very touched about.
World AIDS Day is, to me, all about remembrance. Remembering the bad times, but also remembering the good. Remembering all the lovely friends lost to AIDS over the years. I was good chums with Kenny Everett and through him met Freddie Mercury. All those people who were such a big part of the 80s – it’s such a waste of life, but wonderful lives lived to the full.
I’m 77 now and have been living with HIV for over three decades; although I’m told I look much younger, which is always nice. I’m glad now that loss of life isn’t inevitable. That for any person, whatever their age and whatever their gender, being diagnosed with HIV is not the death sentence that it was back then. You can get treated straight away, the medication is very simple and you don’t have to worry about getting ill.
But I wish World AIDS Day got more attention as there are too many people walking around this planet who don’t know they have HIV. Yes, it’s a big thing still and I like to think of it as a remembrance day, in the same way as we think of the dead of the two World Wars and of all those people who have passed, but the press don’t give the subject enough prominence. If they did, more people would get tested and it would help people newly diagnosed know they’re going to be ok.
I wear a metal red ribbon all year round and I wear it with pride. It’s my way of saying, ‘This is to represent the people who have passed away with AIDS’, and it’s a reminder that I’m here and I’m living with HIV. I’m walking around and I have HIV and I’m going to talk about it if I get the chance. If anyone says to me ‘what does that ribbon mean?’ then that gives me the opportunity to open up.
And my memories of Brian? Fun. Very intelligent. Very theatrical. Everyone seemed to be attracted to him and he had a very rich speaking voice. He could be in a hall and the little old lady at the back who’s deaf could hear him.
When he was last in hospital, Diana Princess of Wales was coming to inaugurate the ward and his first reaction was – and this’ll tell you something about him – ‘I’ve got nothing to wear!’ So I had to rush down to Oxford Street to get him a jumpsuit he found suitable.
When she visited, she sat on his bed and admired this fabulous teddy bear someone had bought him, wearing a singlet that had ‘TOUGH TED’ on it. And Tough Ted had stubble on his chin, one of his ears had been bitten, he’d been in a fight and he had an anchor tattooed on one of his arms. And Diana sat and admired his teddy bear and it was all over the press the next day.
World AIDS Day has always has been, and always will be, about my much missed Brian.
Terrence Hi ins Trust’s current Can’t Pass It On campaign is all about raising awareness of what it means to be undetectable, to eradicate the stigma that surrounds HIV. The organisation is also currently running a free HIV self-test programme, where you can order free HIV tests to take and receive results at home, via test.tht.org.uk.