October 2004 Archives

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!

Tony Bennet left his heart in San Francisco and won a Grammy for his trouble, Bob Dylan was Blowin' in the Wind and Big Girls Don't Cry played on car radios as the nation mourned Marilyn Monroe. Western Samoa, Rwanda, Burundi, Algeria, Jamaica, Uganda and Trinidad and Tobago all gained their independence and the US Army ensured James H. Meredith was allowed to exercise his civil rights as the first African American man to enrol at the University of Mississippi.

A loaf of bread cost twenty-one cents, a gallon of gas was twenty-six cents and the average annual American income was $5,556.00. The first ecumenical council of the Roman Catholic Church in 92 years was convened and the Cuban Missile Crisis was in full swing. John F Kennedy was in the White House, Harold Macmillan resided at Number 10 Downing Street and Indira Ghandi was India's first woman prime minister. John Steinbeck won the Nobel Prize for literature while the Beatles and fallout shelters were both becoming all the rage.

Along with Marilyn, the world also lost Ernie Kovacs, Lucky Luciano, Vita Sackville-West, William Faulkner, Hermann Hesse, e. e. cummings and Eleanor Roosevelt. The global population was approximately 3.136 billion and helping to swell the ranks were Jim Carrey, Axl Rose, Garth Brooks, Sheryl Crow, Vanessa Feltz, Jon Bon Jovi, Darryl Strawberry, Matthew Broderick, Emilio Estevez, Roger Clemens, Patrick Ewing, Jack Dee, Melissa Sue Anderson, Demi Moore and Jodie Foster.

Oh. And me. The year was 1962 and I made my debut as Debra Ann Smith at five minutes past six on the blizzardy Fort Wayne Sunday afternoon of November the fourth. I spent all of eighteen months in the fair state of Indiana and was the only Hoosier in a family of five Buckeyes. My only crystal-clear memory of this time is one of being bathed in a bathroom sink and getting my arm burned on the hot water faucet - it's true. When confronted with the memory many years later, my mother said, "Damn, how on earth could you remember that? You were only a few weeks old!". I'm told my big sister dropped me on my head during this time, but if I retained any subconscious knowledge of the incident it only showed in my little-sisterly persecution of big sis from the moment I learned to crawl. Speaking of crawling, I do have another memory of my infancy, but it is more a composite of the rage I felt when forced into a dress. I can think of no torture more terrible for a crawling infant than to be made to wear a garment your knees catch on, stopping your progress across the room to pull sister's hair or steal her toy. To this day I dislike wearing a dress.

From sometime in mid-1964 onward, I did my childhood thing in various leafy suburbs of Cleveland, Ohio. It was a time of dysfunctional family living and Girl Scout Promises, child-psychologists and camp-fire sing-a-longs. It was the beginning of a journey, one that would eventually lead me to live an ocean away from my roots.

I try to sit and watch a movie about the trafficking of women in Eastern Europe but I can't settle. The screening of Sex Traffic on C4 coincides with threads in the forum spewing forth hate and misogynistic rants and my mind flits back and forth. As I observe the violent scenes I mentally scroll through the forum and watch as the one who rants in turn becomes the target of yet more hate.

I witness two small eddies in the cycle abuse and hatred that makes the world go round in a downward spiral of death and despair. People like Saddam Hussein are held up as examples of people we should hate with self-righteous impunity because they 'deserve' it. A trafficked woman is told that to disobey - to refuse to be raped - is to risk her infant son's life. A poster advocates the extermination of people living with HIV and he is told in a thinly veiled wish that Karma would dictate his own infection. Women are traded like cattle against their will for the gratification of men who will turn around and call them dirty whores to hide their own shame.

All this and more goes through my head as I watch what I can bear of the film. Only a few hours earlier I was thinking how there were very few truly evil people in the world and now on a television screen in my own home I witness unspeakable evil happening to young women.

I search my heart. What do the men who perpetrate such evil deserve? Or to "morph the concept" what should happen to these men that shouldn't surprise them? What shouldn't surprise men who spread hatred on the internet? I don't have the answer, but I do know that I wish them no evil. Two evils don't make a redemption.

I find I am angry, but I cannot bring myself to hate. This is not altruism, this is self-preservation. Hate is a virus I can't afford to harbour. I already have a deadly virus eating away at my body; I don't want another eating away at my soul. I might not be able to control what happens to my body, but I can choose to love or to hate. Love nourishes my soul and so that is what I choose.

Mahatma Ghandi encouraged us to be the change we wish to see in the world. It is a tall order, one that is harder to live by than it might seem at first glance - and believe it or not but the most difficult thing is the fact that real change moves at a glacial pace. Plus ca change, plus c'est la meme chose. If I choose to hate because everyone says that in certain circumstances it is just and right to do so, all I am doing is making more eddies in the cycle of abuse. If I choose to hate when I know how self-destructive it is, then all I am doing is spiralling out of control to my death. I choose life. I choose love. I choose to be the change... even though I may not witness real change in my lifetime.

If we were all to choose to be the change, then perhaps together we could stop two epidemics with one pure spirit. Now. In our lifetime.

Be the change... I'm doing my best. If I fall through my own folly or if I am pushed, I get up and love again. I want to live, so I have no other logical choice.

I have to confess that I don't read blogs. Oh, I've come across the odd one in my forays into cyberspace and spent an hour or two before surfing off into another direction, but I've never gotten addicted. For this reason, I hope you'll forgive me if I don't conform to whatever blog etiquette there may be. I'm sure I'll learn, but in the meantime I'm just gonna do what feels right. Sometimes that might be a story from my childhood, sometimes it might be my thoughts on a subject that interests me, and sometimes it may be a mundane rundown of my latest clinic visit. What ever it is, I hope we can be honest with each other.

Anyway, is there such a thing as Safer Blogging? I'm sure someone will let me know.

Peter Staley approached me several weeks ago with a new idea for the Aidsmeds website. He envisaged a selection of blogs written by people living with HIV and I was thrilled to be asked to participate. Then came the hard part; I had to sit down and write about my life.

I've been wrestling with this task these past few weeks, trying to decide how much of me to share with you in these pages. I am a 41 - soon to be 42 - year-old woman living with HIV but that isn't the whole of me. The label of HIV positive doesn't begin to describe the length and breadth of my life, nor does it tell you with whom I share my life or where on this planet I do my living. In writing this blog I hope to help you to see beyond the label, to understand that those of us who live day to day with this virus coursing through our veins are more than nameless statistics. We are your friends, your neighbours, your co-workers and your families. In order to show you this, I have to let you in and I have to trust you - and I'll tell you now, it's scary. It's a leap of faith in the over-all goodness of humanity.

We are all Living in the Time of HIV and this is my story of my life in this era. This blog is my voice, one warbling alto in the chorus of millions. We might not always agree on the song and our voices may sometimes clash, but I invite you to come sing along.