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.
My story is not unique; there are men and women who have lived with this disease for 20 and 30 years. I am not self-righteous enough to assume my story might somehow change the world. I am mindful and respectful of those who came before me, who have passed on, who are less fortunate, and who didn’t contract this virus through a mistake of their own. But still, my story is relevant. The conversation is important, regardless of perspective and opinion to the contrary. Important, relevant, if anything, because it's real. But beyond a reality, I began to wonder how I would measure this year — successes, failures, and overall sentiments.
I could start with the numbers — perhaps quantifying this year by the estimated number of conversations. There were so many, they seem countless, and ultimately, not indicative of their impact. There is the money raised — in just four weeks for AIDS Walk New York. I raised $36,600. Impressive, no doubt, but it does not tell the full story. It’s just a number. There is the number of school visits I made — six in total, but that lacks the depth of engagement, the level of interest, and the longevity of the message or lack thereof. There are the e-mails and messages, over 4,000 to date. Perhaps it's 127 — the number of people who disclosed their positive status to me, supposedly for the first time, a step toward a more honest society, but hard to confirm and not a number to celebrate. Then there’s 365 — the number of mornings I woke up wishing I didn’t have HIV. Unproductive. Each number no doubt measures, but this year, this topic begs for something more.
I’ve struggled to articulate a metric for the moments that clearly reinforce the need for a conversation — the impact simply talking, sharing, and engaging can have. So much of this year, this unexpected journey, is measured in those moments in time that show us exactly who we are, for better or worse. It’s those very human moments that give us the best read on how we are fairing. If only there were a metric for the slightest pause, that hesitation and honest fear sensed, even for just a second, when someone sees the red ribbon that adorns my bedside table. Or perhaps a measure for the slightest step back that is taken by a stranger when you utter the words “I have HIV.” Imagine if we could actually measure the angst and burden this diagnosis places on even the most level-headed person. A number or scale to illustrate the ongoing mental turmoil one inevitably experiences and often internalizes for fear of ridicule of even the slightest show of self-pity.
But these measures would work both ways — when you see humanity at its worst, you will no doubt will see it at its best. Imagine if we really could put a number to the value of a stranger joining an AIDS Walk team and raising over $2,000, never once having met the people she was supporting. And if there was a ranking to measure the importance of a former employee turned lifelong friend who comes to get you when you can’t find your way back — in every sense of the way. Or a metric that would equate the value of a former boyfriend whose heart led him in a different direction but whose love always brought him back when you needed it most, who gave you an arm to grasp the first night on medicine or someone to call when you weren’t sure how to make the next step. To a company so tolerant, so compassionate, it allowed you the breathing room to live, the support to keep going, and the backing to tell the world. Or the worth of an unexpected friend who thought he was helping another through a breakup only to find he would be embarking on different journey — one that would lead a group of thoughtful and ambitious friends to be a part of something greater than themselves.
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.