I have been lecturing, writing and performing a one-woman show about my life as a self-proclaimed HIV-enhanced goddess with a big mouth for the last 12 years. I weave messages of prevention, testing, self-respect—and, since moving to the country with my fiancé, my affinity for large farm equipment—into my talks. I’m pretty open about my life. So when Showtime asked to follow my fiancé and me around for a few weeks to make a documentary (as an openly positive/negative couple, we’re newsworthy), I thought it would be one more chance to open some hearts and minds about AIDS.
It was much harder than I’d dreamed. The ever-present camera recorded tooth-brushing at night and prayers in the morning. Besides filming our life verité, the filmmakers interviewed each of us in depth. When they asked me if my honey had been tested—an obvious question, right?—I was surprised at how I shut down. Here I am, this educated educator, and I can’t deal with my partner getting tested. I didn’t even want to think about it. Next question. It made me realize that I had plowed my fear of infecting this man who is such a treasure to me deep beneath all my acceptance of HIV.
Now, unbeknownst to me, he had agreed to get tested, camera crew in tow. He’d wanted to for a while, but hadn’t gotten around to it. Nothing like a film crew to help you keep appointments. One of his stipulations was that I couldn’t know. He understood that my fear was illogical, and he thought the least stressful way to do it was to wait until after the test to tell me. So off they went, the crew pretending to follow him to work. The same charade unfolded when he went to get the results, which happened to be the day before our wedding.
When he returned from that second trip, we went to get the kilt he was going to wear for the wedding. He asked the cameras to stay behind so we could have some privacy (he respectfully knew I wouldn’t want my meltdown filmed). I didn’t think much of it until he revealed to me that he had been tested, received the results that morning and was negative.
I felt betrayed. When we drove up our long driveway and stepped into our house, the cameras were rolling and I couldn’t even look at the crew. I was furious with them—and with my partner for going behind my back. I walked out to the trees at the edge of our property. With my back to what felt like a crowd but was really only six, I sat in a chair and cried. He was negative, for God’s sake—I couldn’t understand why I was so distressed. After letting my irrational feelings fly for about 20 minutes, my head cleared and I saw what was really upsetting me. I’d done what many people do around this disease: I’d lived in denial because I was harboring deep-seated shame that I was diseased, untouchable and harmful to this man I love. I felt I wasn’t deserving of the wonderful life we were having.
I felt like I’d uncovered an oozing, infected sore. I was stunned, disgusted—and relieved. The next day I married my honey in our backyard, walking down the red stone path he had just built, turning the corner to see all our loved ones standing in a field in front of the altar we had made together. The next week I went into therapy to help me keep that shame close to the surface so it could heal.