Not long after I began to write my own blog a close friend and I were having a conversation, I had sent him the link to the blog early on. We had been chatting on Facebook about what each of us was up to.

He was very complimentary about it at the time but it was only a few weeks later while attending a mutual friends birthday that he really opened up about how he felt about the blog. He told me that I was making a huge difference to people by being so open regarding my status and my journey since diagnosis.

As I have said in my blog it was really a way for me to continue therapy when the sessions I had been allotted by the health service came to an end. However when I started writing I felt that I should put it out there and if it did manage to give someone a little help then that was a huge bonus.

My friend said to me that he thought what I was doing was heroic. As flattered as I was, I felt that he was being overly generous. But it got me thinking about people I know who to me truly have been heroic within the world of HIV. So over the next few weeks in the lead up to World Aids Day, I will be introducing some of my HIV Heroes. People who are making a huge difference, not just to me but have really helped to change the world.

Garry Brough and I have been aware of each other for about 12 years, but we have only met in the flesh about 3 times. But we share similar interests and have been facebook friends for a while now. We share a taste in music and our love for early synth music, particularly Japan. But there are two things about Garry that I truly dislike. He is always above me on the leader board on Bejewelled Blitz and he is impossible to beat at online Scrabble.

Garry was diagnosed in 1991 at the age of 23.  Back then HIV was a death sentence. Knowing how poorly equipped I was to deal with my diagnosis at the age of 38, a life sentence not a death one, I am in awe of his story.

HIV in some ways has become Garry’s closest friend but there have been times it has been his worst enemy. He was diagnosed with full blown AIDS; he had to be treated for both PCP and Kaposi Sarcoma in the early years, undergoing weekly chemo for conditions that would have wiped others out.

Battling an addiction with alcohol and drugs prior to his diagnosis gave him an inner strength that is probably the real reason he is alive today. When meds became available in 97, Garry started his journey back to health. He had begun to volunteer with Positive Health, working with others in a similar situation, helping them regain strength after life-threatening bouts of illness. He realised that this was the path that he wanted to follow. The satisfaction in helping people find a passion to live must have been intoxicating,

In 2000 Garry became a founder of the Bloomsbury Clinic Patients’ Network, the same time as he started to re-train as a Pilates intsructor. The clinic was keen to get patients involved in their own treatment and wanted to hear from them and get feedback on the services being offered. As a clinic in central London you can only begin to imagine the diversity of patients and the Patients’Network was key in ensuring that the needs of such a cross section of people were being met. Garry is still co-chair of the Patients’ Network. It now employs two full time staff, operates workshops and produces newsletters for people living with HIV.  But probably the most invaluable thing the Patients Network provides is peer support, people with HIV helping each others. The volume of experience within the Patients Network means that anyone who opts in can effectively be given direction and helped to access the services they need. And with Garry having experienced peer support first hand with AA it was a no-brainer to expand this concept within the community.

In 2002 an opprtunity came up to go on staff with Positive Health.  He applied for and got the job.

Garry’s main drive is eliminating the shame and stigma that is associated with the virus. And he believes, as do I, that while we keep quiet about HIV, it gives others power to persecute. So he will not shut up until more people speak up.

Three years ago an opportunity came up for him to join THT, one of the UK’s longest established HIV charities.  It's named after Terrence Higgins, who was one of the first people in the UK to die from AIDS. The charity was established in 1982 and has been at the forefront of HIV awareness and prevention ever since.

Over the years, it became a victim of its own success and got stuck in bureaucracy. In the last five years this is something that they have been determined to address and I firmly believe they have had great success in doing just that. Garry was aware of its faults when he applied for the job. His attitude of change from the inside has probably made him a charming thorn in the side of some of the management. But they could only benefit from having a mouthy poz man working from within. His desire to join was based in a need to do something more and bigger and reach more people than he was with Positive Health and the Patients Network,

Initially his role was working with six north London boroughs to offer community-delivered support in collaboration with HIV clinics. He explained to me just how tough it was. Not everyone is open to change and getting in the door and reassuring people that the object was not to replace services but to add to existing ones can not have been an easy task.

A year in and a new role was created (THT Membership & Involvement Officer), a position he was well qualified for. This new role included conceptualising a new website for people living with HIV, a safe members’ space that created a forum for people to share with others their own experiences. The whole peer support concept that Garry is so passionate about was being rolled out across the country. The website is called MyHIV.org.uk and is a wonderful site, virtually hooking people up with others who are experiencing similar issues. For Garry the satisfaction lies in seeing people blossom, come out of themselves and grow to accept their status, no longer seeing it as something to be shamed by.

I asked Garry what is the single most important development he has seen over the 21 years.  He was unequivocal in saying that just being alive and having a future to look forward to is most definitely the thing that makes him happiest.  But that’s closely followed by the reduction in stigma and the increase in social understanding and protection under the law, specifically with regard to disability at work legislation and also the equalities act. Additionally the ability to travel to countries that not so long ago barred access to a person with HIV.

The biggest negative? Again he was forthright in damning the media for their attitude, sensationalising our condition to sell papers. Equally concerning to him is criminalizing transmission, and policing what goes on in a bedroom. His view, which I have the utmost respect for, is that they are trying to prosecute reckless transmission and there has been no proof of deliberate transmission. It’s a topic that I wish I had had more time to discuss with him.

I was able to tell from the smile on his face that Garry was not exaggerating when he told me that being positive has enabled him to enjoy more success in every area of his life than he ever thought possible. He is now in the job of his dreams (until the next big challenge comes along), happily married but with a wonderful past to look back on with fondness, and an exciting future. 

Without people like Garry fighting the way he does, my life would not be as easy as it is. So, online gaming aside, I take my hat of to him and am glad to have him in my corner as someone who gives a damn as well as being a friend.

So the answer is YES, there is room for another hero, and Garry, you embody that word fully.

Now I am not talking about Thatcher/Reagan, Blair/Bush and certainly not any special relationship that our current Prime Minister David Cameron thinks he might have with a certain world leader called Barack Obama. But my personal developing special relationship.

 

It’s 6.30am on a cold crisp morning and London has never looked more beautiful to me. And I have just taken my 246th dose of combination therapy. That’s 1,230 pills since I embarked on my treatment.

 

Just this week I have been thinking about the drugs I take. 5 pills per day,

 

2, 400mg tablets of Darunavir

2, 400mg tablets of Raltegravir

1, 100mg tablet of Ritonavir

 

Since I call my personal blog www.halfalifetime.com I had been thinking about personal landmarks in my life but also got to thinking about stuff I still have to do. You see, if I truly have got the same amount of time left as I have lived to date, and if I were to fit as much into the next half as the first, then DAMN I am going to be busy.

 

But as mentioned, I thought about pills. Just assuming I stay on the same therapy for the remainder of my days and the numbers stay the same, then I have got another 76,600 anti-retroviral's to swallow over the next 43 years, (I have added in the extra days for leap years)

 

So far I have cringed swallowing every single pill. I dislike the fact that I am  bound to them and they me, I detest  the fact that it is the one relationship I can never end. I feel like throwing my phone across the room every day when that alarm goes off reminding me it is time to take those five pills. We are in this together and we are in it for life. Almost makes me think that there should be vows recited when you first commune. As, this one is for keeps. This relationship will endure longer than a lot of friendships, and should I meet the man of my dreams TODAY, and we spend the rest of our days together, this special relationship will always have been longer and more intimate than any I have had or any I enter into.

 

However, I have to say I LOVE the fact that I am more healthy now than I have been in years, I LOVE the fact that I have a possible 43+ years left to me and I LOVE the fact since starting on combination therapy (which initially ran in tandem with Psycho Dynamic Therapy) that I have managed to regain control of my life and met more new people and made new friends in the last 10 months than I had in the previous 10 years.

 

I LOVE the fact that by embracing my status as a part of me, and that by no longer denying its effect on me that I can be Positive about being Positive.

 

I am under no illusions that it will always be a relationship in such harmony as it feels today. There will be days it makes me physically sick, there will be days I cannot leave the house due to having to stay close to the toilet, there will be times it interferes with my social life, and there will be times I weigh up the pros and cons of where to go and what to do and whether I should bring a little box with me ‘Just in Case’. I am proud of the fact that since beginning my regime that I have began to be a voice in the world about something important. I cherish the conversations I have had with people who talk to me frequently about how HIV has impacted their lives. Some of these people have been friends that I had no idea were positive and had no idea about the struggles they where having.

 

In many qways, combination therapy has taught me a lot. Maybe in the future I will not be quite as selfish and controlling in relationships as I have been in the past. Maybe just maybe, those 5 little pills at the same time everyday have taught me about the value of life and being able to relate to others.

 

It's November, it's grey and raining and we are now on the countdown to the time of year I am really not inspired by. Cold, dark, wet mornings seem to stretch ahead into infinity. Christmas and birthday loom just a few rapidly passing weeks ahead.  But maybe this year I will get into the spirit of things, maybe this year I have something to celebrate…

I think we have all had a day like this. A day when you are walking around in touch with reality, then something happens, and it is like you have gone off grid; suddenly you are an extra in a Matrix movie, suddenly you feel like you are walking through treacle or that everyone is moving around you with a purpose and pace you cannot comprehend.

The couple of months leading up to my day were stressful. I had moved house, changed jobs and attended the funeral of my best friend who had committed suicide. To say I wasn’t in a particularly clear-headed state of mind at that time would certainly be an understatement.

It was Wednesday, August 1, 2007. I had a day off and was wandering aimlessly around Central London. I don’t remember what I had been doing; I just remember that I was killing time until I was to meet a close friend for drinks when she finished work.

It was around 5.45 and, at a loss for something to do until 7pm, I sat in Soho with a book I wasn’t enjoying reading, a little wired on caffeine. I remembered that there was an HIV testing drop-in that evening at Soho Sq. It had been about 9 months since my last test, and although I wasn’t concerned or worried, I just decided to go have a check up.

So along I walked and signed in, took a seat and waited about 15 mins until I was called. The nurse was a chatty guy called Chris, a real sweetheart. We talked briefly about what I would do if I tested positive and he did the pinprick test.

Chris told me it would take about 15-20 mins to get the results and I could wait outside or go get a drink and come back. I chose to wait outside, went back to reading the rubbish book and waited.

They were having a busy night and seemed to be understaffed so I didn’t give it much thought when it took a little longer, but I was eventually called back in after about 35 minutes. I had not even sat down when Chris explained to me that it had come back positive. The words didn’t register at first; I had to ask him to repeat himself. When it finally made a connection I sat down with an audible exhalation of breath and asked him “what do we do now?”

It’s funny looking back, having always been very diligent with testing, I had come to treat it no more seriously than sending the car for an MOT. There had actually been times in the past when I felt like I had got away with murder, as I had been careless at times, yet always been negative. This particular night I was expecting the same result as usual and was not prepared for anything else.

Chris went on to explain that there was a 2% chance of a false positive so he would have to take more blood, and the results wouldn’t be back for 24 hours. Then he said something to me that I wasn’t sure made me want to cry, laugh or bitch slap him across the room.

“If it is positive, at least you wont have to go through this anymore”

So he took more blood, what seemed like a rather large amount at the time, but was nothing compared to what they take these days. And off I wandered into a totally new reality. Suddenly there was a shadow hovering over my shoulder. I had to make it through the next 24 hours until the results of the full screen came back.

I was holding onto that 2% with everything I had. Now the thing is with a 2% chance of the result being wrong, the flip side is it has a 98% pass rate. But that night I couldn’t see that; all I could see was a glimmer of hope that it was wrong. The rest of the world suddenly shifted to the other side of a transparent screen, I could see everything going on through it but I had no way of breaking through it to participate in NORMAL life.

I cancelled my meeting with the friend I was due to meet, claiming some malady other than what was actually the case. The one person I wanted to ring, I had attended the funeral of 4 weeks before. I now realise I was in a classic case of shock. I called another old friend I had drifted apart from who is also positive and told him what had just happened. His response was ‘you’ll be fine, I’m in my 22nd year now.’ I have never felt more alone in my life.

I walked around for hours and eventually made it home, collapsing into bed exhausted and with a huge headache., to awaken after a few short hours. With a need to make the day feel as normal as possible, I went to the gym as usual. I turned up to work with a smile pasted on my face. And did my best to get through the day, waiting for the phone call that would dictate my future.

Inevitably I missed the call. When I retrieved the voicemail it was Chris asking me to call as soon as I got the message. I knew right then how badly the odds had been stacked and how the little hope I had, had just vanished. Had the results come back as a false positive he would have said so in the message.

Suddenly this NEW REALITY was all too real. I got straight on the phone to the friend I was supposed to see the previous night, leaving her a message and saying that I was sorry but I needed her to cancel whatever she had planned that evening. I needed to see her. She texted me back within minutes.

Some sixth sense told her I wasn’t messing about, and when we met she knew as soon as she looked at me! She held my hand as I told her the news, feeling oddly relieved that I wasn’t completely alone in this.

Strangely my main worry at that time was all about dating, I had been single for 2 years and was feeling ready to face that world again. But the enormity of what I had in front of me suddenly hit. I had so much to get used to. The headache of who to tell and when was something I knew was going to be a long way off.

Disclosure became my biggest worry, oddly enough. I wanted to keep it from those closest to me in case it changed things, yet I came close to blurting it out to complete strangers. It was as if I felt the need to try the words out, just to see how they sounded coming out of my mouth.

The shock wears off, of course. But HIV in the early days is an almost visible thing, it;s almost like Long John Silver’s parrot. Sitting on your shoulder making a mess on your best attempts to look civilised and butting into every conversation uninvited.

However slowly my world once again started to spin on the same axis as everyone else’s, and the misty veil between yours and my reality became much easier to traverse. However the next six months were going to be a huge learning curve. But that’s another post…

On October 9, 2011 PositiveLIte.com featured an article/review of the UK-based Count Me In HIV prevention campaign. One of the men featured in that campaign, Denis Robinson, contacted our publisher Brian Finch via Facebook. We asked Denis to write about why he agreed to become a spokesperson for this campaign and what the experience has been like for him.

Denis is 42 and comes from Belfast but has lived in London for the last 22 years. Watch his video at the end of this post. And learn more about the campaign here.

Since writing this post for us, Denis has joined PositiveLite.com as a blogger with his own regular column, London Calling.

Almost from the day of my diagnosis I was faced with a choice, I would either disclose my status to everyone or keep it as my ‘dirty little secret’.

I have known and loved and lost too many people over the years who have had own their battle with HIV for me to ever have kept it to myself. And also like many, I needed the love and support of those around me to get through the transition from thinking myself invincible to realising I was all to human - not superhuman.

Of course being so honest meant that there were causalities, people I had considered good friends suddenly vanished from my life never to be seen or heard from again. I was resigned to this happening and didn’t really allow it to concern me. I believe we all should have the people around us who we can lean on as much as allow them to lean on us.

For the first year or so I managed to slip it in to most conversations or just explain to those close to me how my reality had changed. And what that meant to me. I am fortunate enough to have some truly wonderful and inspirational people in my life who were hugely supportive as I adapted and started to understand this virus.

I have lived my life according to my personal motto. Inspiration. Motivation. Education.  Innovation. And as I adjusted and came to terms with HIV I began to consider how best I could shape it to fit my mantra.

In early 2010 I was diagnosed with depression and ultimately I had a complete nervous breakdown, being hospitalised in October of that year. I had lost my way and totally lost any sense of self and on the October I presented myself at the local emergency room. The depression was not solely linked to me being HIV+ but it certainly had played a part in it.

But on that night I was faced with a choice, and that was to live or to die. And thankfully with the help (bullying some might say) of friends I went to the right place. And thus began my journey back to being me.

I entered long term therapy. I fought my inner demons hard and with fire. Knowing how close I had come to ending my life made me realise there was no time to waste.

One of the first things to become clear to me in therapy was my need to do something positive with being positive. I felt that there had to be more I could do - in part to honour those before me, but also to help educate the community I lived in.

I am a firm believer in the universe supplying what we need when we need it. Around the time I was questioning what I could do, I came across a Facebook page, requesting people to participate in a new campaign by GMFA http://www.gmfa.org.uk/ called ‘Count Me In’. The page explained what they wanted to achieve and outlined the pledge. They were looking for ambassadors who would take part in a print campaign and also shoot videos for their website and YouTube.

I emailed them explaining my circumstances and volunteering myself as an ambassador. It turns out the communications guy from GMFA was an old friend I had not seen in years; we bounced some emails back and forth and agreed that I would get involved.

My thinking was ths: the campaign had INSPIRED me to take part, I felt my MOTIVATIONS, would help me as well as others, it was an opportunity to EDUCATE people about the reality of living with HIV and the campaign and pledge was INNOVATIVE. So for me it was a no brainer. It perfectly fitted my philosophy.

The shoot date was booked and along I went, careful to choose an outfit that would look good on camera (vanity vanity always vanity). It was an easy enough thing to do; the shoot went quickly and the video, although awkward (hate the sound of my own voice) was relatively painless.

To be honest, I hadn’t completely thought through how it was going to impact on my life. Soon after the shoot I got a text from a friend saying “I have just seen you in a magazine and wanted to let you know how proud I am of you”. And that was just the beginning. I had people I barely knew coming up to me in bars to congratulate me on the campaign, and also people wanting to know more about the pledge. My face was all over facebook and the campaign appeared in every gay magazine within a few weeks. One evening just after Christmas I went out wearing the same outfit I wore in the shoot. only to be stood next to a poster of me in the GMFA campaign. I have never worn that red hoodie again.

Pretty quickly, life went back to normal excepting the occasional “I recognise you’ from a comment in bars (but maybe that’s just guys trying to chat me up – I am useless at being able to tell when a guy is interested in me)

In autumn this year, GMFA decided to take the campaign national; in the first stage it had been London-based only. I saw the announcement on facebook about it, and the link to the new website for youcancountmein.org. I visited the site to see my face splattered all over the homepage, which was surreal. Over the next month or so I got many texts and emails from friends around the country saying they had just seen my face staring at them out of a magazines like Gay Times or Borderline.

Since all of this has taken place I have found myself in a new place in my life. The dark days of depression and feeling suicidal seem very dim and distant. I continued with my therapy up until a point when both my therapist and I felt I was doing well enough to go it alone. But that’s when I started to write. I had been spending a lot of time looking at blogs, not just related to HIV but many different topics. I realised that my voice might be able to make a difference. So I started a blog www.halfalifetime.blogspot.com as a way of continuing my therapy personally and with the hope that it might be stumbled across by someone who it will help.

I have discovered the power of social networks and the blog, even with its small readership, seems to have resonated with a number of people’s lives . It has also created opportunities for me to get involved with other people that I would never have either taken the opportunity or had the chance to meet. Most recently I was invited to be a guest speaker at the Samaritan’s National Conference to an audience of 500. And the feedback I have had is that it made a difference for many people there.

So deciding to be counted was a huge step I took, possibly too lightly, but it has given my own personal healing a momentum I could not have hoped for.

And if any off my story make one person stop and think about HIV, whether in a way that makes them more careful with themselves or makes others more mindful of those who live with the virus every day, then I am truly blessed in having shared it.