Living the Questions
A year — 365 days, the passing of 12 months, four seasons, a birthday, holidays of our choice, each a quantifiable measure of the passing of time. I have for years used these markers to essentially measure the year in question or whatever arbitrary schedule I was on. From grade school to college, the first to the next, relationship to being single, each evaluated through a year, perhaps over many, sometimes only one. The questions were “What was I doing then?” and “What job did I have?” and “Where did I live?” and the respective answers were often the measure of success, failure, or simply progress. December 1 came so quickly, but it has felt like 10 years since I pressed “share” to update my status on Facebook and told the world I had HIV. And here I am 365 days later thinking, How do I measure this year?
I chose World AIDS Day for obvious reasons. It’s a time when many mark all things related to HIV or AIDS. For some, that is remembering those who have been lost — nearly 25 million to date. For others, it’s a renewed charge to end the stigma and prejudices that still accompany this disease. There are those who focus on the research, the science that has in 20 years taken this illness from a death sentence to manageable for most. My measure of success was simply to start a conversation, one that has no doubt been carried on and supported by others for nearly 30 years. But when I found myself unexpectedly thrust into this community, I grew painfully aware that while World AIDS Day is no doubt a call to action, the other 364 days of the year seem awfully quiet ... too quiet. I had already lived with this reality for nearly two and a half years, and with a simple update on Facebook about my real status, a short narrative of my story, and pictures to put faces with the support I had been given privately, I would attempt to start a conversation in places it didn’t exist before.
The reality is, most people likely have not thought much about AIDS since we talked. A few have been reminded, perhaps through AIDS Walk New York or this column. But we all have our own lives — the expectation that even those close to me would live my conversation day in and day out would be ridiculous.
But my reality was just that — each morning, day and night, I have been living with HIV, now for nearly four years. This year I lived it publicly.
And just maybe, this year is best measured by what happens when one person shares one story, simply because he didn’t know what else to do. Because he felt bad for feeling bad, scared of getting sick, shamed by the loving act that resulted in his truth, and so regretful of the path he was letting it take. He sat alone on November 30, 2009, angry at everything, suddenly mentally challenged by a secret that was destroying him — a secret he knew he was responsible for. A truth that could be treated with medicine — everyone would tell him to get over it, be thankful you have that pill. The measure being the simple click: “share.”
And maybe still, this year is measured by the tears he still sheds, writing this very column. Tears that do not ask for pity, tears that are grateful for his good fortune, his good job, his support, and, yes, that pill. Tears that are hard to explain because it’s a sadness that can’t be measured. One that will no doubt will be mocked by those critics who simply see him — as one so eloquently put it — as “an irresponsible unthankful slut.” Tears that are real.
It's no doubt each of these measures together that speak of this year. The numbers that seem to mean nothing. Each of the questions we all asked. From the worst in human moments. To the Michelles, Lesleys, Adams, Deutsches, and Michaels of the world, who show us the best in human moments. To the person who simply wanted to start a conversation to help end the veil of silence that is still frightening to those who are positive, working against the tremendous efforts of prevention and awareness.
And so on this Worlds AIDS Day, we no doubt remember those who have passed, celebrate the advancements and work that has been done, and take note of all that is left to do. But we also measure this year and the ones ahead by the conversations we started, leading to answers that will get us closer to what has become our most daunting question yet — how do we live with HIV? So I end where I began — “There are an estimated 1.2 million American living with HIV. I am one of them. Living my way through the questions, and perhaps unexpectedly, without knowing to the answers.”
- Read Tyler's "coming out" e-mail from December 1, 2009.