Listen to Audio (47 min.)
Table of Contents
- HIV Diagnosis
- Personal Bio
- African-American Identity and HIV
- HIV, Health Care and Treatment
- Disclosure, Relationships and Sex
- Adventures and Wishes
How did you find out you were HIV positive?
I found out in 1996. I found out when I was on my death bed in the hospital.
What exactly were the circumstances? You became sick?
What had happened was that I was in a relationship for a while with my lover, my significant other, for about 10 years and he passed away from complications of AIDS, opportunistic infections. After he passed away, I was in denial for quite a long time, for at least three or four years. Then I got very sick, went to the hospital, ended up with PCP [pneumocystis carinii pneumonia] and that's where it all started.
You didn't get tested until you were in the hospital?
Exactly. I kind of figured that I was positive, but I was going through the process of losing my partner and being more concerned about him than me ... being in denial and trying not to really take care of my own health and not paying attention. I waited until I was lying on my death bed in the hospital, and I still was in denial. I had ... pneumonia, but I didn't get tested for HIV. They let me go from the hospital, only treated me for a regular pneumonia. Three weeks later I was at home at my mother's house on the couch because I couldn't move any farther than that. I got to the point where either I blacked out or I went somewhere and came back. I was like, "Please take me to the hospital." So I went back to the hospital a second time. That's when I said, "Go ahead, do what you go to do." That's when I was diagnosed.
How long do you think you'd been HIV positive before you were tested?
I would have to say it had to have been over 15 years -- or more.
Do you think you were HIV positive during the time that you and your partner were together?
How did you cope with losing him?
Well, with support from my family, regular friends that supported me. Then there were friends that I didn't know were my friends until that crisis happened, when they became my friends. Basically, my survival instincts just kicked in. I was numb through the whole thing, but I did what I had to do.
Do you think your partner gave you HIV?
That's what I believe, but as far as my being HIV positive now, it's neither here nor there. [Laughs.] I am positive. I'm here, and he's not here. I could assume myself to death, but I have to move on with my life, not dwell on who gave whom what. I try to concentrate on the positive things.
Did you feel that way at the time?
At the time, I really didn't put the blame on my partner. I was more concerned that this person who I loved was going out of my life. I never really looked at this like, "He gave this to me," or, "Why me?" I couldn't blame him. I had to take responsibility for my own actions because it takes two to tango.
Did you take care of him while he was sick? You said you had the support of your family. Were you caring for him when he was ill?
Yes, I was taking care of him. He and I had just basically bought a condo together. The year after that, he was diagnosed. I think he was diagnosed in 1987. By 1990 he was dead.
I'm so sorry.
Life is what it is. You take the negative and you turn it around and make it positive.
When you were diagnosed, what was your CD4 count and your viral load? Do you remember?
When I was first diagnosed, my CD4 count was 62. My viral load, I really couldn't even tell you. Back then I didn't even know what my CD4 count meant. They said, "CD4 count." And I was like, "What are you talking about, CD4?" They had to explain that, too. I really couldn't tell you what my viral load was, but it had to be more than I needed. [Laughs.]
Tell me about your family.
My mother had three boys. I'm the middle child. I had an older brother, Calvin, and a younger brother James. My oldest brother Calvin and I are actually only 11 months apart. When I was diagnosed in 1996 and came out of the hospital, my mother and I got a call about my brother ... in Houston, Texas. He was incarcerated for some type of legal matter and he was definitely ill. They wouldn't discuss over the phone what it was. We ended up in Lubbock, Texas, which really didn't end up being one of my favorite places.
We got down there in the midst of a sandstorm, and found out that he was in intensive care, shackled to the bed, with guards watching him. The doctors told us he had full-blown AIDS and PCP. That kind of rang a bell for me because PCP is what I had just gotten over a couple of months earlier. That really hit me hard. Here I am getting over this, and he is getting ready to die of this!
I did what I had to do because he was my mother's first born. I had to just kind of roll with the punches. They had to carry me out of the hospital that first day. The next day I was a lot ... better. We stayed down there for a week. Then we couldn't stay down there anymore, so we had to come back and do what we had to do. My mother made the decision to pull the plug on him. It took her about a week and a half to make that decision, but she made the decision. He survived for a week a half. After that, he passed. Then we shipped him back to Connecticut.
What do you mean "pull the plug"? Was he on life support?
He was on life support. When he was there he really couldn't say much between his illness and the guards from the prison that had to be around him because he was incarcerated. My main thing was, "Wow. If you're dying in Texas and you're incarcerated, if you have HIV or you have full-blown AIDS, and you're incarcerated in Texas, you're going to be locked up." They had him actually shackled to the bed.
What was that like for you having your partner die and then losing your brother? How were you able to get beyond that and get to a place where you could still work in HIV and have the energy to help others?
It was a process I had to go through, and it took me a while. I had to educate myself about my disease. I'm the type of person, I want to know everything.
I'm experienced with doctors. My mother is a nurse. With the knowledge from her, and the knowledge from the Internet, just basically trying to find out information about my disease and to how to better educate myself and better educate others about HIV and AIDS.
You talked about your family being really supportive. Can you tell me more about your home life in general? What was it like when you were growing up? Where did you grow up?
I grew up in Stratford, Connecticut, which is a suburb. I don't know what's functional nowadays, but it functioned for me. [Laughs.] I had a mother and father. My mother and father ended up being divorced when I was 13 years old. We had a basic, everyday American life, a little twist here and twist there, but it was interesting.
How old are you now?
I'm 44 years old.
Do you have a family of your own at this point? Do you have a partner?
No, presently I'm not with anyone. The partner that I was with, he moved to Texas. Him and I just kind of went our separate ways, but we are still the best of friends. I've known him for 27 years. We had been together for four or five years. He recently moved to Dallas, Texas, but we're still good friends. We keep in touch, and draw from each others resources and stuff, so it's all good.