There is no HIV in my neck of the woods. Or so I lead my neighbors to believe. I am a straight, white woman in the heart of preppy New Jersey horse country. I’ve also had HIV since 1995. Good health prevents my body from giving me away. But concealing my status still demands undercover tactics worthy of a Bond girl.
Fear keeps me quiet. Most people in my world are conservative, Republican and barely aware of AIDS, a word that appears here only in such contexts as “This melon sorbet wonderfully aids digestion.” How can I tell a bunch of palate cleansers I have a disease with more stigma attached to it than the state of New Jersey? I’m afraid they’ll ostracize me, changing my life in ways I won’t like.
Half the time I’m not sure why I think they’d react this way. My family didn’t. Besides the belly-deep shriek my mother released when I finally told her, she has been nothing but strong, understanding and a font of hope. The first thing my sister did was take me to Burger King and dip her fries in my ketchup -- an act of solidarity I’ll never forget. My father sat ramrod straight, then wrapped his arms around me and told me I’d be OK.
But family can’t dismiss you the way a stranger can. For years, I’ve envisioned people pointing, whispering, yanking their kids away from me. I’ve imagined my boss firing me, my landlord evicting me, my gas-station guy wiping down the nozzle after I fill my tank. I worry that even if people seem OK, they’ll be secretly pitying and disgusted.
Yet despite these fears, I’m exhausted from forever taking my meds on the sly, watching my tongue, or holding it. Like wine gone bad, the secret inside me threatens to rot the cork. More and more, I want to hurt out loud.
Last year, I wrote an unsigned POZ cover story about my life with HIV ["Lines Composed in a Looking Glass,“ September 2002]. I just wasn’t ready to put my name to it. But writing it was so liberating, I decided to start ”coming out" in small steps. And to write about it -- undercover, for now.
First step: volunteering for the Equestrian AIDS Foundation (EAF), which helps HIV positive riders. My lifelong love of riding deepened when I bought my own horse, Andy, after my diagnosis. Sitting astride a creature that loves me unconditionally is an elixir I can’t live without -- especially as I’m still seeking such love from a human partner. When I ride, my virus ceases to exist.
I hoped that through the EAF I’d meet some locals who shared my love of horses and my disease. Of course, as I drove to meet the group’s executive director, Janise Gray, at the barn where she rides and trains horses, I hardly intended to say as much, lest the news spread faster than Potomac Horse Fever. I’d just pose as a fellow equestrienne looking to help our field’s “less fortunate.”
But when Janise, a tall, beautiful African-American woman with closely cropped hair, stepped out to greet me, something else happened. She introduced me to her horses with a kid’s excitement. It was instantly clear to me she loved the animals the way I did. We sat down on tack trunks to discuss EAF. And no sooner had she mentioned how hard it can be for people with HIV to support a horse than I’d told her I knew firsthand, because I had HIV myself.
There was a long silence. She stared at me with what seemed equal parts disbelief, sadness and polite reserve. Then she asked the next logical question: Did I need or want help?
I make a decent salary, but after paying Uncle Sam and my own HMO, I have so little left to house and feed Andy and me, I’d been thinking of selling him. That I might not have to brought me near tears. Did I want help? God, yes!
Promising that only she would know my identity, Janise said the board would be pleased to know someone had come forward: “The hardest part is finding the people who need us.”
My first check came in a plain envelope, enough to care for Andy for one month. Instead of feeling shame at “taking charity,” I felt like an angel had alighted in my life.
Only at the bank’s drive-through did I suddenly notice “Equestrian AIDS Foundation” printed boldly across the top of the check. The middle-aged teller glanced at it, then at me. I thought of what she might be thinking, and doubted it would include that I was positive.
An old part of me was relieved by that. A new part of me felt pathetic. Our eyes met through the green glass that separated us. “I have HIV,” I mouthed.
She leaned down to her microphone. “Don’t worry, it’s our little secret,” she whispered, smiling. She didn’t seem disgusted. Or even anxious to wash her hands after handling my deposit.
“Thank you,” I said before driving away. I’d done it. I’d told her the plain fact. And she wasn’t even family.