Difficult Things

"If you ask me what I came into this world to do, I will tell you: I came to live out loud." -- Emile Zola

One of the challenges of life is deciding who to trust with information that is sensitive or personal. We all have a history, and our stories can be quite profound. The episodes in our life that point to mistakes or problems can make us feel incredibly vulnerable. Yet they also are a source of enormous power. Handling them wisely can provide deep healing for past wounds, and handling them unskillfully can lead to loneliness or painful exposure. I have given much thought to whether and when I should share the pivotal story in my own journey through life, and have decided that now is the time.

This decision has been brewing for a while, and it crystallized during my September 17 training ride for Braking the Cycle, the annual bike ride from Boston to NYC to raise money for HIV/AIDS prevention and services. The late afternoon was cool and autumnal. The sky was remarkably blue, but dappled with low hanging gray clouds. These weren't rain clouds, but something simpler and friendlier. There was a brisk wind from the northeast, and the Hudson River looked like mercury, rising and falling in gorgeous silver choppy waves. The bike path and West Side Highway were eerily quiet, in spite of people and some traffic. Somehow, riding a bike in the midst of Manhattan, I was experiencing solitude. Within me, something rose up, something at once joyful and sorrowful. Yet the joy did not feel giddy, nor the sorrow unpleasant. I was riding strong, ready for the challenge to occur in the next week, doing something difficult but finding it relatively easy. It was a collision, as I came face-to-face with myself as I am, and found that there was no shame or regret in the encounter, but something tender and loving.

In that moment, I knew that I was ready to disclose the fact that I am living with HIV. Not that I hadn't disclosed my status before. I have been disclosing this since my diagnosis in 1991, but those disclosures were private, controlled choices. Somehow and for some reason, I knew that it was time to take a bolder step.

The basic story is simple. I found out that I was HIV-positive in 1991, although I was probably infected in the early 1980s. The week I was diagnosed, Magic Johnson was also diagnosed, and the media frenzy that ensued, and the conversations that I overheard, amplified my own challenges. I began treatment almost right away, but unfortunately, we didn't understand the medications and viral resistance very well, and my virus became highly resistant to commonly used medications. I completed my graduate work and moved to New York City in 1994. I loved living in New York, but my health continued to deteriorate due to uncontrolled HIV replication. No matter what we tried, the virus eluded treatment. I watched as my immune function gradually deteriorated, hoping with each new medication that came on the market that this would be the one. Finally, in what was essentially an act of desperation, I enrolled in a clinical trial in 2004, coupling a novel new medicine with an already available, but difficult to manage, injectable medication. Within two weeks the virus was undetectable in blood samples, and my immune system began to rebuild. Today, I am on a simpler regimen (no injections) that continues to work extremely well. My immune levels are normal, and my virus remains undetectable.

Why disclose now? The answer is complex, but a major factor is the transformative power I've experienced in doing and training for the Braking the Cycle bike ride. In my first ride last year, I made the decision to ride publicly as a person with HIV. I took the Positive Pedalers flag and placed it on my bike, announcing to all who knew the meaning that I was one of the positive riders. For three days, I received nothing but love and support from my fellow riders and the crew. This experience planted a seed, a suspicion that being public about my HIV status could be liberating and healing. This seed sprouted over the past year, and blossomed into full bloom as I rode my recent training ride along the river.

What the riders and crew do on Braking the Cycle is a difficult, challenging, and remarkable thing. Yet we find great comfort and meaning in doing it. Not shying away from the challenge, heading directly into something serious, silly, and strange, and finding solace and healing in the experience is both instructive and transformational. The hurdles that we encounter in life are essential to the path. They are opportunities to grow stronger and wiser. Shying away from difficulties is diminishment; embracing them is the way. It is scary, and it takes courage, but I've come to the conclusion that it is worth the risk.

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A footnote: there are family members, friends, and colleagues who will learn of my status by reading this. I regret that I'm not disclosing this information to you personally in a more intimate face-to-face setting, but after wrestling with the challenge of how to do that with what is a large number of people, I realized that I needed to just jump in with both feet. Please know that I will be happy to talk about it. An easy opener to the conversation is simply to say, "I saw your blog post."