Living the Questions
BY Tyler Helms
November 30 2010 8:35 PM ET
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.