More to Me Than HIV

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More to Me Than HIV

First published in Gscene July 2020 For last years World AIDS Day I put together a public project of work joining other people living with an HIV+ diagnoses at Jubilee library.For last years World AIDS Day I put together a public project of work joining other people living with an HIV+ diagnoses at Jubilee library. For the project I spoke openly about my journey having being           Read more

More to Me Than HIV: GScene post Aug 2020

More to Me Than HIV is a project that aims to breakdown the stigma that has historically been attached to this virus.  When I saw my piece in last months Gscene to promote the More to Me Than HIV project, I was extremely proud, but a small part of me was filled with anxiety; but why should I feel this way? I have been on effective antiretroviral therapy since the Read more

More to Me Than HIV: first published in GScene July 2020

For last years World AIDS Day I put together a public project of work joining other people living with an HIV+ diagnoses at Jubilee library. For the project I spoke openly about my journey having being             diagnosed HIV+ 32 years previous. Back then there was no treatment and a lot of fear and misinformation concerning how HIV was transmitted. As such stigma was rife, Read more

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Make the next five years count.

B12B22CB-90F0-4988-B414-808F27A4D418_1_201_aThursday 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. 

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Writing everyday in October: My Tattoo Obsession

 

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I have always had a fascination with tattoos. My dad, who had been in the Navy, sported a tattoo of a snake wrapped round a dagger whichIMG_3742 I really liked. My uncle Eric had a small heart on his wrist which he was able to cover up with his watch. But it was years later when I had moved to Norwich and had gone to a gym; while changing, a burly bloke was also getting undressed. It was only when he took his shirt off that I took much notice as he had a hunting scene covering the whole of his back. At the top were hunts men on horse back, in the middle hounds where chasing down towards his lower back. The tattoo was completed with a fox tail disappearing up his bum hole.

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A couple of years later, living in Brighton I was sat round a table at my mates Davey and Rob and we got talking about getting a tattoo. In that moment we all agreed we should have a sun tattoo each. I was very excited at the idea and went off and got one. Davey and Rob never did!
What many people who get a tattoo will tell you tat once you get one, you want another. Some people want lots more; I’m in the latter category.

After the sun, I thought i’d get a moon on the other arm to match, which I really liked. A few more months passed and on impulse I walked into a tattoo studio in Brighton, saw a Buddha style tattoo and decided that is what I wanted next.
This was when I learnt the lesson not to pop into a tattoo shop and get inked ad-hoc by a tattooists you have not really spoken to before. The Buddha looked very odd, particularly as it looked like he was wearing a sock half hanging off his foot.
My next two tattoos where done from a guy in Nottingham, My mate Wayne had a Celtic tattoo on the back of his head, while I got two men, conjoined on my arm (I’m not a Gemini, I just liked the design) and later a tribal looking design on the back of my neck, again just done because I liked the tattooist’s work.

IMG_3739 IMG_3740 IMG_3741 By this point I started to think back to the hunting scene. I hate blood sports but thought I should just go for it and get the whole of my back tattooed. Around this time a new tattooist shop had opened, called Angelic Hell. Back then it was a room just big enough for two people. The tattooist was a fierce, female biker called, Natasha. Together we decided a devil would be a great. The one thing I remember clearly about Natasha was her barking at me to keep still as she punched ink into my upper lefthand shoulder: the end result was great. After a couple of sessions the ink was complete and Natasha suggested I had a demonic looking Jesus bursting out of the middle of my back. I politely said no and said I’d be back when I had thought it through. When I did go back, Natasha had gone, deciding instead to go traveling on her motorbike and so I started looking around for a new tattooist and was told there where two guys, Wurze and Scrow, from Tattooing at Gunpoint in Hove who I should check out.

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I chatted to Wurze, a wise cracking, skull tattoo loving, brilliant tattoo artist. Very quickly it became apparent that Wurze had an idea of what style of tattoo I wanted and over the next few years has been my go to man to get inked. First he balanced my back with an ageing angel, which he followed up with a heaven and hell scene inspired by Gustave Dore’s illustrations of Dante’s Divine Comedy. The theme of my tattoo’s progressed with these elements of light and dark and were followed by similar interpretations of this theme with fire (dragon) and water (Koi Carp) which covered up my earlier tattoos.

I had a break for a good number of years, but as many people with tattoos will tell you there is always a pull to get another and decide that now my back was complete, what I really wanted was a tattoo sleeve. First came my latin/Vision-On inspired tattoo, Carpe Diem, reminding me to ‘Seize the Day’, followed by a collection of flowers (life) and skulls, (death) carrying on the dark and light theme.

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When I reached the milestone of 50, I had another latin/Vision-On tattoo, this time: ‘Memento Mori’, this time reminding me, “One day you will die” which prompts me to look at my Carpe Diem ‘Seize the Day’.

My most recent ink follows that theme in an abstract way with a Death Head Moth (Silence of the lambs) heading towards a screaming flower (inspired by Terry Gilligan’s art work).

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Tomorrow I get the screaming flower finished and that will be my sleeve complete….but i’m sure that will not be the end of my tattoo obsession.

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