[Editor's note: On October 9, just a few weeks after writing this column and while the issue was being mailed to subscribers, LeRoy Whitfield died of AIDS-related complications. Read a news story of his death on HIV Plus: Columnist LeRoy Whitfield Dies.]
As of late, one by one, I've been losing friends in the AIDS community--but not how you think. They've been claimed not by the disease but by their disgruntlement--even disgust--over my current decision not to take meds.
With my viral load hovering around 400,000 and my T cells basically nonexistent, it seems that every conversation I have these days with AIDS activists or caseworkers ends in a verbal showdown over me choking down the cocktail. And some have distanced themselves from me entirely.
After a heated conversation about the matter, one friend--now ex-friend--sent this terse text message to my cell phone: 'Ur form of denial is the worst kind,' he wrote. 'Let me know when u plan to get on meds.' That was two years ago. He's refused to speak to me since.
Then there was another 'friend' I hadn't seen in years. But from time to time we've exchanged e-mails or instant messages. One evening recently he rang my phone to chat. The conversation began to turn toward whether I'd started the meds yet. 'No,' I told him, 'and I'd rather not talk about it.' (Some weeks it feels like that's all I talk about. Sometimes I end up defending my choice to total strangers in the AIDS community.)
The caller pressed on: 'If you don't want to talk about it, that's fine. But I want to tell this to you before you die. I've had several friends succumb to this disease, and then I had to end up punishing myself because I didn't have the opportunity to let them know how I felt.'
I sensed an argument coming on, and I tried to avoid it. 'If you want to talk about your feelings of loss, I'm willing to listen,' I told him. 'But I don't want to fight about meds right now.' Before our conversation was over he called me 'dumb,' and before he slammed his phone down, he decided to end the call this way: 'I used to pray for you all of the time and wished you nothing but the best. But now that you're so goddamn stubborn, I hope that something terrible happens with your health just to teach you a lesson!'
I'm happy that he hung up when he did. Because what he said cut straight through my heart. And it bled for hours afterward.
Still another, an executive director of an AIDS organization, thinks that I'm not taking the meds just to be provocative. He thinks that I'm so trapped by the confines of my lofty column-writing that I can't handle real life.
Interestingly, in each case my AIDS-y former allies have told me that what they were going to tell me next was out of love and concern. (My family communicates to me out of love and concern, but they never have to preface it that way. I know where the sentiment is coming from.) Now when someone from the community utters 'love and concern,' I want to run the other way. With friends like them, who needs enemies?
It seems to me that now is the time my true friends should be coming closer to me, not falling away. But many in the AIDS community seem more bent on setting me straight. I can't sit through another Lazarus tale that I didn't ask to hear. Or an anecdote about a friend who didn't take the meds and died.
Frankly, I'm tired of folks telling me--but never asking--what I need. If they asked, they'd know that this is the hardest medical decision I've ever had to make. And I feel very alone and afraid making it. If they'd ever stop to ask, they'd know.