My name is Jimmy; I’m 28, an ex-rock star, an HIV+ activist and a retail manager from London.
As far as I was aware rock stars generally don’t become ex-rock stars! I’m sure there is still some of that left in you – I don’t want to leave anything unsaid so why don’t you start off by telling us about your rock background?
Well I was a ska-punk trombonist to one band (Dr. 8Ball later Too Late Lucy) and later a front man to another (Cassio Avenue) I’m one of the first 100 founding members of the Featured Artists Coalition. My first band was my predominant success going on to Stadium tour across India to audience of 80,000+ a night but all came to an end by 2010; you can catch my old front man as a member of the Eastenders cast now as Shrimpy the market stall trader.
I never knew this about you! That’s quite an achievement. What has your life been like post-2010?
So I started working for [rhymes with ‘Hey-Man’] opening their first global store. I quickly grew a strong relationship with the global product team and went on to trend spot some key trends which I helped bring to market, I got to influence the eyewear industry immensely, from spotting the round metal trend, the club master trend which was my largest success as I managed to persuade the company that was about to pull the model that they were about to be massive having spotted a small but immensely strong resurgence amongst the east Londoners. Other trends I strongly influenced were the reintroduction of wood into frames, and flash lenses (coloured mirrored lenses) – In my 4 years there I’d helped the company rake in about £1Billion globally.
During this time I ended up getting into a very destructive, mentally and emotionally and occasionally physically abusive relationship with somebody who was severely bi-polar but clever enough to persuade the doctors to take him off medication. The problem with bi-polar is the swings. When I met him and got to know him, as our relationship got going it was great. There was an intelligence that was strong, conversation was interesting and stimulating.
On the 1st of November 2013 everything changed…
The day we moved in together into a new room in a flat with a live in landlord friend of his, who had also given him his first job. To try and sum the story up a little we were booted out by the landlord in the 2nd week of December due to my partner at the time being so destructive and rude in his behaviour, we were homeless just before Christmas. He lost his job not long afterwards and on New Year’s Day that year he tried to take his life whilst walking down a road in South London back to the tube station by taking a drugs overdose.
In the months that followed things got worse. During all this time since the 1st we grew sexually distant, he led me to believe that he could only have sex in a group situation. Not my cup of tea at all. But I was blindly in love. And had to watch it occurring multiple times a week and yet wanting the one thing I couldn’t have at the time, intimacy with my partner. This grew worse, and the arguments grew worse – Having lost his job I walked the 2 miles from East London where we then lived to get to work in Covent Garden and then back each day so I could save money on transport in order to put food on the table to keep us and to keep him alive, at this time his drug use was getting worse and id often come home early out of jealousy to find several men in the flat.
After a particularly vicious argument mid-April we ended up having sex out in the heat of the moment/argument. 2 weeks later the week before I was to take a week off as holiday I developed the worst flu I had ever had…
My new manager, a rather horrific piece of work and my area manager made me work through my severe flu before my week off, where towards the end of it I recovered and felt as though I’d had no break and I’d decided to seek out my doctor and ask to be signed off for the first time ever. I’m a work-aholic, but I needed to get out of London and do some thinking.
As I left the surgery I had a friend of my then partner pop up on Grindr and invite me over as he lived not far away. He studied at Cambridge with my partner, they were both Freemasons and he was a priest and a good ear. Everything that happened over the last year that for me I had been telling myself let’s get through each incident and deal with after, due to there being no “dealing with part” before the next incident occurred led it all to hit me all at once then and there talking to the priest, I had a mental breakdown.
I was taken in by him and his two flatmates and they looked after me for 3 months which I was signed off for whilst I got my head back together – Imagine being in a room with two conversations going on over each other and that was just too much for my brain to process, I would then literally wipe the memory from my mind. It was a scary time, I tried to go back to work several times before I was really ready to go back and by the time I did my first day back, the other 4 members of my management group were signed off due to “stress” so I was back doing the better of 5 people’s jobs at once, managing a £multimillion store and a team of 37 and then 4 days later walking down a street in South London with a friend next to me I got the call following a sexual health screen telling me that a few days prior my result had come back positive for HIV. That was at this moment of writing to you 1,485, 041 minutes ago, 24,750 hours ago which equates to 1,030 days ago – Nothing prepares you for that news.
I had gone in for a routine check, the day before my results came back my now ex-partner rang me and told me he had finally gone and gotten tested, I said “What do you mean finally?” As prior I would go and test like clockwork every three months and he would the same day go to his clinic and do the same, or so he told me. I later discovered in that call that he hadn’t and chose to go for a drink instead. So there was a little part that had prepared me for the news, the shock finding out is something that anyone diagnosed can never fully explain. You will never forget where you were, what you were doing, the way you felt (hot, then cold, then empty) – I got off the phone with the colour draining from my face at the harsh reality of what had happened and scared of going back into my mental breakdown caused by my abusive ex-partner. My friend Patrick saw how pale I had gone and asked me if I was ok and all I could mutter was ‘uh-huh’ – By the end of the road I said no, actually I’ve just found out I’m HIV-positive.
Patrick stayed with me for two days and was a massive support. Support is crucial, it is vital and for me it was the difference between me being here and me doing this interview and me not. Having had 3 months off and only just returning to work I chose to disclose my status the next day to my area manager. She took it well I thought but on my lowest of days 3 weeks later she forced me into signing away my responsibilities, taking an hour’s cut of 40 down to 8 and a relevant pay cut through the fear that if I didn’t I would lose my job – everything I had worked so hard to do and achieve that I loved. I don’t know if you’ve tried paying London rent of £700 a month on 8 hours worth of work a week but let’s just say I’m yet to find a mathematician that can make that balance and work! The next two weeks I felt isolated and alone and eventually I went and sought out help. My clinic employed people living with HIV as peer support workers who had been phoning me and gently trying to get me to go in and see them and finally I did and I sat down and unloaded everything that had been going on. The realisation that the flu I had had was actually me sero-converting and that my abusive partner was the one who had in fact passed the virus to me. Very quickly I turned a corner, it was insanely quick, a week! Then all of a sudden I had an epiphany so which is scarier? The prospect of taking tablets for a virus that yes I cannot get rid of but can suppress or have the power to control and stop others from contracting it and to stop it from damaging my body versus the very real fear that I was still losing my mind. Now when you weigh those two up which is scarier? For me the answer was simple. The prospect of losing my mind, my intellect, my judgement and the one thing I valued above all else – the ability to think, was far scarier. I then decided to go onto medication on the 28th of November 2013.
I’m an elite controller. My CD4 was 1,010 and my viral load was very low but I didn’t want to run the risk of ever passing the virus on. This was my choice to take control and to do my part to protect others I knew and I wanted to go public to help dispel the myths surrounding HIV, so after telling my friends and family I chose to go public on the 2nd of October.
I took to social media and at this time I was fighting back at my HR department who refused to believe that I had been pushed into thinking I was going to lose my job so I sought out my area manager and asked to have my hours cut down. My area manager was not happy with me dealing with people several times above her pay grade and I suspect that she used my disclosure as the opportunity to push me out.
By the February of 2015 I chose to leave the company, depressed by working so little and only doing a shadow of what I was supposed to be doing. I was treated quite horrifically by my area manager so I chose to quit after I kept waking up to go to work once a week and trying to find reasons not to go in. That wasn’t me as I loved to work and get my teeth stuck in. The next two years were up and down, recruiters saw a strong CV and I would talk at great length and when asked about my current gap, I would be honest and the tone would change. Any follow up I would hit the same wall, that being “oh you’re too hard to work with” (in other words too much effort and I can’t be asked) this would then continue for some time. Recruiters are the untapped issue with HIV discrimination, although I feel I had one recruiter who went miles to help and ironically she didn’t get me my current job but I do strongly thank and back how amazing she was, she really gave me some light
My current employers today know my status and they are comfortable and supportive with that. Disclosing publicly did a few things for me, however, others that I didn’t know got in touch to ask and talk and others, such as those I went to school with as a kid saw my post and used it to ask and to learn for themselves and educate themselves. My doing it was a release for me, It was a release of choosing not to live in fear of my HIV but to break free. I owned the information of who did and didn’t know and I got to tell the world I never had to worry about that anymore.
I own my HIV, I don’t need to live in fear of it and I don’t let it define me. Yes I use it to help educate others but I choose to do that. I don’t live in fear of living. I’m now free to do that.
and to love.
Hearing your story made me not want to interrupt you and that was such a heartfelt story, thank you for sharing that with us. On the side I’d like to ask you about PrEP? We’re consistently asking interviewees about PrEP and on a side note I’d like you to add what your thoughts are?
PrEP is such an important and vital tool we have in our arsenal in order to help fight the spread of HIV. It is a tool that Scotland have chosen to use along with other countries. It is a tool we strongly need to use in England. For the first time a tool that has a near 99% ability to protect you from HIV transmission when used daily. We need to be using it and we should be using it; however, TasP (treatment as prevention) is even more crucial alongside breaking the fear of HIV testing in the widespread population. Through a mixture of these things and better education we have a very real chance of significantly changing the future and reducing new transmission in this country immensely. However a combination of all is needed to succeed.
PrEP is a tool and we need to be talking more about it, using the work that Greg Owen along with countless others to steer people towards online order-able generic PrEP is vital.
Let’s actually take this opportunity to give Greg a shout out as many of us have already heard of IWantPrepNow.co.uk but for those that haven’t you can find some great information on his site here
I want to ask you do you have any advice for the newly diagnosed before we wrap up this interview?
It may take a while to get your head around the news you’ve just found out however, trust me when I say as someone who is currently living with HIV and as someone who’s been to the dark places you’re in now and perhaps far darker… You will be ok. Choose not to live in fear of it, learn as much as you can and remember that education is the power to helping others, yourself, and also to be happy. And you can be happy. It may take some time but you and can get there. Don’t let it control your life, let you control your life, and go out and enjoy it, you deserve to as much as I do, and as much as the next person. You do have the strength and it may sound hard to hear right now but you will be great.
Jimmy has also requested to give Project 100/Positively UK a shout out, this isn’t the first time we have shown praise to Positively UK, we’d enourage any newly diagnosed individual to check out their website.
Jimmy on Positively UK – “a phenomenal resource for the newly diagnosed. It’s a network of peer mentors; I’m one of them that work nationally to help those newly diagnosed or struggling with their diagnosis”
If you’d like to hear more of Jimmy you can find him on Twitter @jimmyavenger
Want to take part in our #STIGMAWARRIOR campaign? Have your say on HIV stigma and get in touch: firstname.lastname@example.org
We are also working in collaboration with ‘But I Like It’ a local photography company who are a major contributor to our campaign. For those in the Greater Manchester/West Yorks area, you will be eligible for a free photoshoot with our good friend Johann who will be happy to give you a free photoshoot for those wishing to take part in our campaign.
If you’d like to check out ‘But I Like It’ tweet them here or visit Johann’s website here