A case of the old "Is it KS or just a bruise?" panic leaves Emily Carter proud to be an American -- and thanking her lucky Stars and Stripes for the freedom to disclose her status.
Recently I noticed a dark purple, thumb-sized bruise on my right eyelid. I couldn't remember walking into a door, having a fistfight or even plucking my eyebrows more vigorously than usual. Suddenly hypochondria -- a troublesome HIV-related symptom of mine -- kicked in, shrilling, "KS lesion." I made a doctor's appointment, but I had an immediate, more practical concern: I was set to teach a class that night. What if a student asked me about the mark? Should I preempt questions with a fabrication about a fender bender, opening myself to speculations about domestic abuse and denial? Or should I simply shrug and say, "Dunno"? For a moment I was truly tweaking, my brain a tangled knot of dissembling strategies whirling mix-master-style. Then I remembered: It didn't matter what I chose to tell my students, either about the bruise or about my HIV status. I wouldn't be stoned to death like Gugu Dlamini, the South African woman who came out on World AIDS Day in 1998 and was promptly killed, or shot in the head by my husband like Mpho Motloung, a South African teacher, in August. I couldn't even be fired. I got ready for class.
Of course, the decision to disclose or not is complicated for all of us by our ability to face our sexual identity and other personal demons. My uncle, a research doctor and closeted homosexual on the Upper West Side of Manhattan even in 1990, did not reveal his status until he was literally dying of AIDS. He kept it from his wife for years and then threatened his 14-year-old son with withdrawal of all fatherly affection if he told anyone. His best friend begged him to explain what was going on; my uncle ended the friendship. I am brimming with gratitude that these demons have left me alone. To be able to tell people I am HIV positive is to be able to tell them who I am. Naturally I don't disclose in a supermarket checkout line, but what makes all the difference is the fact that I can.
In terms of my sex life, disclosure is mandatory. Like many women, I tend not to have sex with people to whom I can't entrust even basic info about myself. This wasn't always the case, but now, nearing 40, I've learned to think of myself and my body as a pearl I choose not to cast before any old swine. Disclosure is a perfect prophylaxis against getting intimate with an idiot who may not really like me. And I won't talk to anyone who thinks AIDS is God's vengeance upon me for bad behavior. And I don't have to.
Many of the rights I enjoy here in the ol' U.S. of A. -- from my sense of personal safety to my health care -- I too often take for granted. The work of groups like ACT UP has helped make it possible for me to lead a comfortable life as an HIV positive woman. In light of the tragic crimes against women in Third World nations, I feel it would be a case of "white whining" to bemoan my status. I can disclose at will and my mother won't abandon me, my husband won't gun me down. I won't suffer financial or legal persecution or die in rags on the sidewalk. We would all do well to be grateful for these freedoms from time to time.
Disclosure is a right, inscribed in the Americans with Disabilities Act and immanent in the U.S. Constitution. It can't be stolen from us -- not by a raised eyebrow or an ignorant comment by a radio talk-show host. I cherish this freedom. And more, it makes me feel a sense of feisty patriotism. These rights come with responsibility, of course: the responsibility to be involved, to be aware and to vote against those who may tamper with them. And my right to declare who I am is a blessing -- not a spoiled child's 25th Christmas present. It's the best gift of all, and I alone can choose when to unwrap it.
As for the mysterious bruise, it was gone once I got to the doctor's office, and the expensive blood work offered no clue as to from whence it came. In the waiting room, I read about a clinic in Lagos where people were stacked three per cot, dying of a disease no one dares name, with no medical care, no family visits. I decided, for the moment, not to sweat the bruise.