I was 17-years-old when I was infected with HIV. It was 1988, and being diagnosed felt as if my life had ended before it had begun.
Abandoned by my family who told me I’d “made my bed and had to lay in it” for being gay, my friends were my chosen family. They sadly all too often died because of Aids – would I be next? As I tried to emotionally process what was happening to me, people would say in an attempt to offer some solace: “Any one of us could be hit by a bus tomorrow”, and I would say back: “the difference is that I’m already in the middle of the road, I can see the bus coming, and I don’t know how fast it’s travelling”. However, the metaphorical bus took a detour somewhere – I can’t see it anymore, and I don’t even know where it is.
Before the bus took its miraculous detour it loomed right behind me, and I was a scared rabbit in its headlights. In 1995 I found myself in and out of hospital with a Pandora’s Box of Aids-related infections.
On one of those stays at a London hospital, I was infected with a multidrug-resistant strain of tuberculosis (MDR-TB) due to poor infection control. This led to me being placed in negative pressure isolation. I wasn’t expected to survive. I thought ‘this is it’, deteriorating to the point that one night, with a very high fever and fighting for breath, I asked the nurses if I had in fact already died. I truly believed I was dead, they reassured me I wasn’t. In the weeks following the TB treatment slowly started to work, and three months later I was discharged. Somehow, I managed to survive long enough to when effective HIV treatment became available – and like Lazarus I had returned from the dead.
Something happened to me on a very deep personal level in the isolation room. The person who came out had a very different attitude to the person who went in. As my health continued to improve, I decided to grasp the second chance at life I had with both hands.
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Today, I’m a published author of eight books. In my most recent book, Diary of a Modern Consumptive, I share my experience in the isolation room, told through a diary I kept at the time. It was published to mark the UN High-Level Meeting attended by world leaders which took place in New York on September 2018. Another book I have a lot of pride in, HIV Happy, aims to challenge some of the negative and self-stigmatising thinking commonly held by people living with HIV. It offers a self-help program to build a better sense of wellbeing and to help get started on a brighter life path.
These day I’m a very well-travelled HIV/TB activist. I do a regular slot on my local BBC Radio reviewing the day’s newspapers and I’m also communications director for TBpeople, a global TB activist network. Amongst my proudest achievements along the way are playing a pivotal role in reversing the ban on people living with HIV from entering the United States and being nominated by Stonewall as journalist of the year, I’m also proud to be a ‘Future Thinker’ for Gilead’s HIV Age Positively initiative. The programme aims to address the greatest challenges in HIV, aimed at supporting the next wave of HIV innovation
I blow my own trumpet only to illustrate to you how HIV treatment has transformed my life. We are the first generation of people living longer with HIV; many of us ‘long term survivors’ haven’t prepared for old age, we just didn’t think it would happen to us. All of us living with the virus will face new and unprecedented challenges associated with HIV and ageing.
As for the future, I shall keep on writing. I’m not J.K. Rowling by any means (yet), but what I’ve learnt is that anything is possible. Who knows what’s around the corner? I’m looking forward to the future I didn’t think I’d have. There’s still a lot yet I want to achieve. Hey, there’s time, I’m still a good few years away from getting my pensioner’s free bus pass.
For more information on the HIV Age Positively conference, contact HAPConference@90ten.co.uk or visit the website here
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