"Your name has become synonymous with AIDS."
A friend of mine told me this yesterday. She has AIDS and is someone I have gotten to know working in the field. We have done several speaking engagements together, sharing our personal stories for high school students so they'd have a better understanding of the epidemic and maybe not make some of the choices we made.
Her comment took me totally by surprise, and for once in my life, I was rendered nearly speechless. I didn't know what to say. And I didn't know if I liked what I had just heard. As a matter of fact, I was kind of disgusted.
"I mean that in the best of ways," she continued, trying to fill the pregnant pause, trying to let me know she was complimenting me, telling me she was proud of me and my work.
I knew that, I knew she was referring to my advocacy/activism and to the level of my involvement, all of which have increased substantially in the last couple of years. Almost out of control. It's like, before I knew it, I was on a million committees and signing up for a zillion things and running a crazy fleckin' listserv with thousands of subscribers. Before I knew it I was being honored as an activist and as an advocate, before I knew it I was being asked to speak, I was being asked for my opinion, I was being asked to share, I was being asked to participate, I was being sought, I was wanted, I was needed, I was hired, I was necessary, I was leading the struggle, I was crucial, I was essential.
I was prostituted.
I was AIDS.
Before I knew it, I had become synonymous with AIDS. I had become AIDS. People thought of me and AIDS in the same sentence. This is who I was ... am ... me ... AIDS.
Eight years ago in August I tested positive. If you had told me then that my name would be so closely linked to this vile and disgusting disease, I would have said, "Uh, you got the wrong queen, missy."
I'm still a wrong queen, but now I'm an HIV/AIDS diva too. As in, DHIVA, as in, you can't spell DIVA without HIV. How fucking fabulous. How fucked up.
Is this what I really want? Do I want to be this disease-ridden poster child? How did I get here? What the hell was I thinking? No one to blame but myself -- I walked in every door that opened for me on my own. Many times I skipped in, or sashayed in, or jumped in -- but was I ever forced in? No.
I prostituted myself for this lousy disease.
I was talking to my boyfriend one day about work, going on and on and on about this and that activity I was involved in, such and such event, policy, legislation, the bullshit politics, the ideology, regime change, the fighting, the struggling, the squabbling, the backstabbing, community, the 60 million without health insurance, homophobia, racism, poverty, malnutrition, substance abuse, depression, disenfranchisement, disinformation, comprehensive sex education, abstinence only, the CDC, HRSA, NIH, ignorance, cynicism, complacency and burnout. The responsibility, the pressure, the pressure, the pressure. The meetings, the summits, the conferences. The pressure. God bless him, he's really interested, and he really likes to hear me go on and on and on about this stuff. Really he does. Go ahead, ask him.
Then there was a lull in the conversation -- catching my breath to start another rant -- and he asked me, in that moment of tranquility, "Are you ever tired? Do you ever feel overwhelmed?"
I burst into tears and sobbed, hard, for at least a couple minutes. "Yes I am tired. Yes I do feel overwhelmed." I choked the words out. "I don't think I can do this anymore. It's too much." I proceeded to tell him why it was too much, why I couldn't do it anymore, why I was tired, so tired, why I was so sick of it all. I substantiated everything. And he listened. And he said, "I understand." And he listened some more, until I was done.
The next day I woke up and got back on that horse. I'm mindful that I need balance in my life if I am going to continue ranting and raving about HIV/AIDS. And I am. I need to remember that I am not only those letters. Whatever others perceive, there is a lot more to me than simply what I bring to the cause. And I nurture those other things -- like the love in my life, like my friends, my interests, my hobbies -- so I can keep on fighting. Because, really, what else can I do? What else would I want to do?
You can't spell DHIVA without HIV.