Thursday 3rd March 1988, I was 23 years old and told I had been diagnosed HIV+ and to make the next five years count. The next few months were a bit of a blur. You see, back in 1988 HIV was a killer, there was no cure and if you got HIV then it was very likely it would lead to AIDS and you would die. I knew this as a fact as many of the men on the gay scene who I knew were dying. At one point it was not unusual to hear of at least one person in my wider group of friends had died.
I knew I would have to tell my friends and decided to do it when my friends and I had a flat warming party. It made sense to me as I had everyone I loved in one place and felt we could all support each other. One by one a friend was asked to join me on the stairs in the hallway, I think I got drunk while my best mate mopped up the tears.
A turning point came for me when soon after I was offered to go on a drugs trial, at this point I was showing no symptoms related to the unset of AIDS and so was eligible to go on the trial. I wanted to be one of those who could potentially help in finding a breakthrough. You see, only approved anti HIV medication at the time was a drug called AZT, but it was really toxic to those already ill with AIDS and so for many people it only hastened their death. So, it was and brainer to take part in the study.
I was told the group would be split into two, one would have the medication, the other would have a placebo. During the trial the doctor got very excited with my results, everything was improving. I was also getting some of the side effect associated with this medication as well. So it came as a huge surprise to both me and the doctor when at the end of the trial it was revealed that I was in the placebo group.
I took this as a sign that I should do everything in my power to stay well, positive thinking was going to be the way forward. I know that in reality I had a lot of luck on my side too but I was determined not to die.
By the end of the decade AIDS eventually caught up with me, I remember one day feeling really ill, it hit me out of the blue. Soon after I started feeling a lump on the roof of my mouth, I convinced myself the lump had always been there, I was in such denial that I was even considering asking my friends if they too had a ridge on the roof of their mouth. However, the lump grew and I knew something wasn’t right but I really didn’t not want to admit it to myself let alone to tell anyone else, because to do so would be to admit that I was dying. So I went into total denial that this was happening to me and told no one. At first it was easy, then I began to lose my appetite and I lost a lot of weight. At first I was able to get away with it, I was even pleased that I could fit into a 30” moleskin pair of trousers. But then the weight kept coming off and I started to look ill but still I told no one.
Eventually a friend intervened and took me to Hove hospital where they had a specialist HIV/AIDS ward.
I was taken to a private room, two doctors came in, one shone a torch in my mouth and said, ‘Ah yes, KS classic kaposi’s sarcoma.’
Suddenly everything I was in denial about was laid out in front of me, getting a KS diagnose was defyining sign that you had moved on from having an HIV+ diagnoses to an AIDS diagnoses. Because of my denial I had not brought anything with me during my hospital stay, so my mate had to get the stuff for me.
I was in hospital for about a month while I was monitored, it was the build up to Christmas, which back then was not a favourite time of year, so I was pleased to be in that little private room, it even had an ensuite!
When I was discharged I had a course of radiotherapy and the KS went. Everything was fine for a while then I got ill again and was taken back into hospital (this time I did not get the ensuite)! I knew I was very ill an invited my mates up to say my last goodbyes, I even planned what I wanted read at my funeral, a passage from the little prince, which ends:
‘Goodbye,’ said the fox. ‘And here is my secret, a very simple secret: It is only with the heart that one sees rightly; what is essential is invisible to the eye.’
I think I was determined that there should not be a dry eye at my funeral.
But then everything changed, a doctor came and spoke to me to say there had been a breakthrough with an antiviral medication. Through this combination therapy, six tablets twice a day I got better. Throughout the following decades I would get very ill and go back to hospital, but that determination that HIV/AIDS would not get the better of me gave me the determination to make everyday count. As the tattoos on my arm say, Carpe Diem and Memento Mori.