World AIDS Day 1st December 2018: Dearest Mark

This is an article that I originally wrote for Baseline Magazine, an HIV and Hepatitis Community Magazine in Autumn 2011.

Autumn 2011

My first boyfriend Mark died from HIV when I was just 18 years old. I have come to the realisation that Mark is still alive in me. The love and compassion I have for him is still alive today. He is the person who helps me find the drive for my work in the HIV community today.

Sometimes I feel like an 18-year-old stuck in a 33-year-old’s body. At 18 I felt like a baby on the gay scene in London. Spending the weekends partying did not feel soul destroying. Though, reflecting now, I went from being a loner at school to suddenly having lots of men loving the way I looked, how I dressed, how skinny I was, how I was able to dance and how I loved the music on the dance floor.

Then suddenly Mark was there; we had a very intense six months; then he got a bad chest infection and lost lots of weight. Mark knew something was wrong. I was so young and very naïve then, but in my soul looking back now I knew I was losing the beautiful man I had met. I will never forget the day we sat in the waiting room for Marks HIV test results a week after the dreaded blood test. He asked to go in to see the health adviser alone, and then the Health Adviser invited me into the room. Mark looked like the carpet had been pulled from under him. Mark could not bring himself to tell me his diagnosis. The Health Adviser eventually said that Mark had HIV and that that I just needed to have a test as a precaution. Mark’s results indicated bad news; CD4 65 and viral load in the millions. They wanted to put Mark on medication straight away. Mark took the medication reluctantly and showed no sign of improvement. My results came back clear and this provided Mark some hope for a short time, but at the time the medication was only just getting better.
At the time I was not out to my family, although Mark had encouraged me that nothing would fall apart if I did come out. I was leading a double life, part-time ‘straight’ son and at other times having to seek the support of friends, pretending to stay with them, so I could spend some days and nights with Mark.

I came over to Mark’s one afternoon and he had written to his family explaining he was very sick. I went over to his place a few days later and rang the bell, his landlord/ housemate told me he no longer lived there. His family had come to get him to take him home. Mark did not have the best relationship with his family, they were very homophobic, and he did not care to talk about them very much. He left his address, we became gay lover by letter and then the letters suddenly stopped coming. A few months later I got a call from his mother to say Mark had died a few months before, she said the family did not want me or any other gay freaks at the funeral.

At 18 the only place I could escape to the gay scene in London. Partying the night away was my escaping the pain I was feeling and working in catering provided me a function. I felt I had nowhere to take this; I was slowly coming out to my parents. I felt with what I was going through I was mirroring stereotypes they made about gay people and the AIDs epidemic. Somewhere on my journey of loosing myself in the scene I managed to get HIV. But reflecting this is no surprise as I didn’t look or feel too great about myself.

When I go on the gay scene these days, I find it a task. Depending on the venue there is a code; you must wear a certain outfit even to be able to get into some venues. In my fast-reaching mid-thirties the energy put into having nights out, having the skinniest body are no longer as important to me. If I can look at my reflection in the mirror, in the morning and be proud of the person looking back at me; that is what matters. Having good friends and my family around me where we can share both our happy and sad times, are both so very important.

Writing and speaking about my first partner is relatively new to me, my way of dealing with my loss was to close and shut out the world around me. By sharing my story, I hope it will give you as the reader, the time to remember those you have loved and lost, or those who are still alive living with HIV.

December 2018

Aged 40, re-reading what I published now 7 years on, my final comments remain the same. What I have learnt and what Mark would have wanted still counts, that it is so important to me now to celebrate every minute and make every minute count with those you love. But also celebrate it whilst we are still here, as we are likely to be here for longer then anyone expected now over thirty years on from the epidemic.

My favourite line from the film Dirty Dancing is when Johnny gets Baby for the final dance. She’s sitting in the corner with her parents who were mad at her. Jonny turns to Baby and says: “Nobody puts Baby in the Corner”. Don’t ever let anyone push you to keep a part of you in the corner and give HIV stigma the finger.

Written in loving memory of Mark, friends, lovers and all those wonderful people we have lost in our community due to AIDS and HIV.

With Love Joel

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