I remember the comfortable anonymity of living in New York City and so I've often envied those of you in big cities who feel free to reveal your location without the fear of singling yourselves out. Many years ago I left the big city and moved to a very small place and so now, comfortable anonymity is a thing of the past. But, after much soul searching, I've finally decided to share with you the "Jewel of the Irish Sea" - the island where I live. Living with HIV in an island setting is a central theme to my life and it is therefore a crucial ingredient of my blog.
I often say that I've been living in the UK for nearly fourteen years now, but that's not entirely true, it's just a smoke-screen I've been hiding behind. It would actually be closer to the truth if I told you that I live in the British Isles. You see, there's a 572 square mile pile of rock and sand in the middle of the Irish Sea and that's where I live. That rock is a tiny little country called the Isle of Man - Ellen Vannin in the native Manx tongue.
The Isle of Man is a beautiful and diverse windswept land. There are sea-side cliffs and sandy beaches, mountainous hills, peaceful glens, boggy marshlands and sunlit plains. Approximately 75,000 humans share the island with a rich variety of flora and fauna, including acclimatised palm trees, purple heather, wild wallabies, tailless Manx cats and basking sharks.
Six different kingdoms can be seen from the 2,036 foot top of Snaefell Mountain; Scotland, England, Wales, Ireland, Mann and Heaven - weather and Manannin's cloak permitting - and on a clear day I can see Scotland and Ireland from the beach just yards from my home. From the window next to my computer I look out over a seventeenth century courthouse, a pub, a castle and a heather-clad hillside. Oh, and seagulls. I can see seagulls - hundreds of the noisy little beggars.
My island home is beautifully tranquil, but it can be a difficult place to be a person living with HIV. Our medical care is patchy and social care is non-existent. There is not one single support group, agency, case or social worker to address our needs. We are pretty much on our own. Although we have a Genito-Urinary Medicine (GUM) clinic, we do not have our own HIV or ID specialist. An HIV specialist is flown in from Manchester once a month, but if anything happens in between his visits, we're at the mercy of non-specialists. Island life is small town life amplified. Confidentiality is a minefield of huge proportions and problems associated with confidentiality play a big part in why we do not have any social support.
I'm working towards change. I have the support of HIV organisations on the mainland and a few individuals here, but I'm the only positive person on the island at this moment in time who is actively involved. Tim Horn, Peter Staley and Andy Velez from Aidsmeds have also given me unlimited support and my time on the forum has given me the strength and courage I've needed to be able to put myself forward for the work ahead. I will be forever grateful to them - and everyone - for that support. I know that no matter how alone I may feel on this rock, I'm not ever truly alone.
This has been a difficult entry to write. When I agreed to write this blog, I decided that I would write about my journey on the island. This subject matter I've set myself hasn't been difficult because of the disclosure aspect directly, but rather more because the diplomacy aspect. To be able to see changes in HIV care and management here on the island is one of the driving forces in my life right now and there's no way I could write an honest blog if I left this subject out. I have to be diplomatic because I don't see the people behind the need for change as enemies and I sure as heck don't want them to see me as an enemy either. I have to believe we all share the common goal of having a happy, healthy HIV positive population.
Whew! Now that I've gotten that out of the way, maybe I can get on with the blog!