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.