The day after

Yesterday was World AIDS Day, an occasion that i am disinclined to let quietly pass by.

It's been twenty six years since reports of the outbreak of a mysterious disease first called GRID (Gay Related Immune Deficiency, a/k/a Gay Cancer) began to appear. i remember quite clearly those times. It was 1981, the year i graduated from high school. The year after i'd begun the process of coming out and also first had sex with another guy.

Those were times of ignorance and fear.

1981 also turns out to have been the year after my beloved partner, whom i met in 2002, sero-converted and began a new chapter of his life. Today he's a healthy long term AIDS survivor in addition to being one of the best (and most handsome!) men i've ever been blessed to know and love.

HIV/AIDS has shaped my adult life in ways that i could never adequately convey. From the early panic, through years of AIDS service volunteering and the peculiar survivors' guilt of the HIV-negative, past the times when i oddly felt that i was entitled to just chuck safe-sex practice and take my chances, this disease and our society's response to it have intimately touched my experience.

A few years ago a young gay friend of mine, Matthew, asked me what those early days of AIDS were like. i told him about a family that invited me to dinner at their home during the early eighties. I had long stopped hiding the fact that i was gay in the small West Virginia college town where i lived. When dinner was served my meal arrived on a paper plate accompanied by plastic utensils. The rest of them ate on regular china. "That's awful!" said Matthew, "What did you do?" I told him i shared a lovely meal with them, because in that time of ignorance and fear they had opened their home to me when many others wouldn't have even shaken my hand. I was a gay man in a time of intense stigma, when gay men who appeared healthy one week were all too frequently dying only weeks later, looking like victims of Auschwitz. And the people we expected to provide good information, the doctors or scientists, seemed to know nothing or could only contradict each other.

In 1985, when it was common in my twenty-two year old life to watch friends suddenly and inexplicably sicken and die, my doctor told me that my lymph glands were chronically swollen in more than three areas of my body. At that time, it was one of the recognized indicators that a gay man might have been exposed to AIDS. She told me i might have AIDS, i might have lymphatic cancer, or that it could be nothing to worry about.

I took my first Western Blot (or was it an ELISA - i can't remember the protocols then) test to find out if antibodies to the virus were present in my body. Then followed a tense week (that was how long it took for results). i remember borrowing my friend and roommate Milton's car and driving out into the West Virginia woods for a good long sob. When the results arrived, they were negative. Turns out i have an overactive immune system and the swollen lymph glands were part and parcel of the way my body works.

My friend Milton Stiles died of AIDS in Pittsburgh in 1988. I consider it one of the blessings of my life that i was able to find a way up to Pittsburgh to see him just a month before his death. He was always an odd duck, and to this day remembering him brings a smile to my lips. I can still see him in some tacky outfit that he thought was the height of fashion, smoking his Meerscham pipe, raving over some old Star Trek episode that he thought summed up a revelatory truth about life. I ask you, can anyone under the age of thirty (or fifty for that matter) smoke a Meerscham pipe without looking ridiculous? Bless you, Milton.

My friend Randy, a chaplain serving those living with HIV, a man living with AIDS himself, and a fellow parishioner at St. Michael's, spoke last night at an interfaith service held at the MCC Albuquerque. This morning he sent me the link to a speech by Sean Strub, the respected AIDS activist and founder of POZ magazine, delivered in 2005 in San Francisco at the National AIDS Memorial Grove in Golden Gate Park.

An excerpt:
As we stand here on World Aids Day, in this magnificent setting, our theme, and my assigned topic, is "Embrace Life." But I may not address it in quite the way the organizers intended. I find it hard to Embrace Life when...

...A judge in Mississippi, this past summer, barred three children from living with their aunt--simply because she has HIV.

...I find it hard to Embrace Life when, just two weeks ago, the FDA succumbs to religious conservatives and announces plans to require warning labels on condoms, casting doubts on their effectiveness in preventing disease.

…And how can I "Embrace Life" when last month, Gary Carriker, a gay man living with HIV in Georgia, was sentenced to several years in prison. His crime? Not disclosing he had HIV to sexual partners. None have sero-converted. But that didn’t matter. Nor does it matter, under Georgia and other states’ laws, whether condoms were used. Or how risky or safe their activities were.

These horrific examples of stigma and fear-mongering tell us much about where we are today in fighting AIDS in the United States. Even while there have been important medical advances and expanded access to treatment around the world, people with HIV now face political opposition more extreme than anything we’ve seen since the start of the epidemic. This is not just rhetoric. Many of our hardest-won victories, from science-based prevention to health-care access to basic human rights—have, with the rise of George Bush and his evangelical constituency, been rolled back. Five years ago, for example it was unthinkable that America’s war on AIDS would become a war on condoms. Today it hardly makes headlines.
Read the rest of his speech here.

Several years ago my mother was sharing her feelings about getting older, and especially about what it was like to watch so many friends pass away. i gently told her "Yes, i know what that's like." The look that crossed her face reminded me of the sound of a needle skipping across a record album. Then i watched the realization dawn in her eyes. "Yes, i guess you do," she said, her voice full of love and grief.

Remember those who are no longer here and tell their stories. Tell your stories. Keep fighting until there is a cure. Until there is, keep promoting PREVENTION!

Wormwood's Doxy, who works for AIDS.gov, recommends that EVERYONE make HIV testing a routine part of their medical care. Especially if you know you are not at risk for exposure - so that others will see there is no stigma to taking the test.

1 comment:

Grandmère Mimi said...

Scott, my cousin, a straight man, contracted AIDS from a blood transfusion during by-pass surgery in the early 1980s, before there was a blood test. He later became ill, and my mother went to visit him in the hospital and asked what was wrong. He laughed and said, "The doctors think I might have AIDS," never believing that the test would be positive. He did not live long after that. My mother was worried about visiting him, whether she could have been infected.

His family never said what he died of, but we all knew anyway, because of those words he said to my mother. They were ashamed. His wife left town.

I can't imagine what it must have been like to lose so many friends, many of them so young. We've come a way, but we have a long, long way to go.

Peace to you.