The Truth About My AIDS
February 26, 2014
This piece originally appeared in Rae's blog, Diva Living With AIDS.
When people look at me they don't see death. In fact, people really don't see illness. Even when I'm having a bout of something or other, I'm often told, "Girl, but you look good." I've always had mixed emotions about that over the years.
This is true mainly because it keeps people in denial about the support that I need on the one hand, and on the other, young people look at me at a gig and think, "AIDS ain't so bad, she looks great." They think I got it going on, which of course I do, but having AIDS is no joke and requires a lot of work. For sure, my life would be different if I didn't have AIDS. For these reasons I am so candid about my journey. I want people to get the full understanding of this disease. Pictures in my case, can be a tad deceiving.
Which brings me to the point of this blog. Yesterday I posted the article that The Elizabeth Glaser Pediatric AIDS Foundation did on me and my work for Black History Month. I was so honored that such a prominent organization thought enough of my work to feature me. You can read the article HERE. Anyway, they used the Essence cover in the article, lending an historical perspective on my work.
My heart skips a beat to date when one is physically fine but says they are "Dying of AIDS but fighting stigma... tying to add those words up but nothing comes still. My Step-father died of AIDS, he had MDR TB and PCP Pneumonia. My uncle died of AIDS he had PCP Pneumonia and Crytococol Meningitis, My cousin Died of AIDS and she had TB, Pneumonia, Malaria and Herpes Zosta.
Let me say, I felt on one level that there was a bit of a challenge in what and how I do what I do. The shade hit my spirit like a ton of bricks. I'm so glad that God speaks to me when I least expect it. People always coming for me. After I answered her politely, I pulled out the laptop. I see this as a teaching moment. Instead of seeing a liar living a contradictory life, why not see that I am a walking miracle? I'm always sadden when another person comes for me who is also infected. Mainly because I've lived the span of this disease and have lots to offer. Secondly, this was a celebratory post, why bust my bubble?
First off, this is what I got from the comment:
She was saying that I am living a lie. On the one hand, I say that I'm fighting stigma, but on the other hand, I say that I'm dying of AIDS and yet I look perfectly fine. The fact that I say that I'm dying leads to the "Stereotype" that people with HIV/AIDS are dying. The fact is, if a person is not diagnosed early or does not get into care and stay in care and treatment, they will die from AIDS related infections. That is an undeniable fact. Unless they get hit by a bus first.
But let me take my case from the top. This blog is long, I'm sorry but I had to be thorough. The Essence article was written 20 years ago this year. While I saw the picture before it was published, I never saw the finished copy. So when I received my copy of the magazine from Essence I was jarred by the caption, I'm Young, I'm educated, I'm drug-free and I'm dying of AIDS. I stood in my living room, stunned, Essence had declared that I was drying. I understand today, together we made history and changed the discussion about HIV/AIDS among black women and I will always be proud of this boldness.
My doctor had never told me that I was dying, but Essence had dared to speak a truth that no one else would. At the time that I wrote the article, my T-Cell count was 66. Because magazines are ahead of themselves, by the the time the article was actually published, my T-Cell count had dropped to 30.
Back then, T-Cell counts and infections were all we had to go on to measure the disease. Viral Load is a newer understanding of HIV/AIDS and disease progression.
Let me explain, an AIDS diagnosis is a T-Cell Count of 200 or below. The average person has a T-Cell count of 800-1000. So AIDS is a T-Cell of 200 or below or and Opportunist Infection (OI), which is an infection that is particular to people living with HIV/AIDS; there are a list of them Click HERE to read.
Back then, if you made a transition to AIDS within 3 years you were dead. That shit was real!! HIV anti-viral medications were mediocre at BEST! There was no expectation for life. The best a doctor could do was try to prevent infections or catch them early. Some of the AIDS related infections are treatable, but for sure many will kill you.
After the Essence article was released, for sure I took some flack from the AIDS community. "How dare you say that you are dying!" Was said to me, "That only helps to create stigma" but the fact of the matter, clinically I was. That was a hard fact that I had to live with. I remember another female AIDS Activist here in Chicago stopped speaking to me for over 15 years. Then about a couple of years before her death, she just started back out of the blue. I was happy that she had made peace with whatever her issue was with me. I always liked her and thought highly of her work.
Back then and today, my response is clear and concise. Don't make me lie because you can't handle my truths. To deny the truth would be in fact to live a lie and the purest that I am just won't let me.
Let me be clear, the two years following the Essence article I was on the timeline to an AIDS death and to most people I looked pretty damn good.
I will call the row!
1) I have had 3 bouts of PCP (Pneumocystis Carinii Pneumocystis) AIDS Related pneumonia. I was hospitalized 2 times and on one of those, I stayed in the hospital like 23 days.
2) I had AIDS Related Wasting, I had no appetite and could go all day and not feel hungry. I went from a size 12, to an 10, to a 8, to a 6, to a 4, to a 2 to a 0. The suit I'm wearing up top was a size 2 and it was to big, but I look good. LOL, What a contradiction. I can't explain it, but GOD. Most people with wasting looked like they were wasting away. The miracle of my physical beauty cannot be denied. I never had any issues of my hair thinning or skin discoloration that is common among people with advance AIDS, but I did have really extreme dry scape and extreme dryness in my face. I must have gone through tons of shampoos and face creams back then.
3) I have AIDS Related Peripheral Neuropathy. I have tingling, numbness and neuropathic pain in my feet, toes and up to my legs. Sometimes in my hands. Back in the day it was so bad I would take my shoes off and rub my feet no matter where I was at.
Today I still have this numbing and tingling in my feet all the time! BTW, with an undetectable viral-load it should have gone away, but it never did. I just don't complain about it anymore. So most days my feet have some tingling and numbness.
4) Women with AIDS have a host of Gynecological issues and I was no different. I had Dysfunctional Uterine Bleeding. My periods would come a week early. I would have 2 periods in one month. Sometimes I would bleed for an hour and other times days. Once I had a cycle for 22 days.
I had Cervical Dysplasia, which is a precursor to Cervical Cancer. My doctor believed early that women with HIV had different issues then men with HIV, that's why she founded the Women and Children HIV clinic in Chicago. As a result, she gave me a pap smear every 6 months and we caught the Dysplasia early.
I had yeast infections back to back. No sooner than I was finished with a 7 day treatment, 3 days later it was back. I contracted genital herpes in college and for the most part it was not an issue. I had outbreaks at most every 3 years. Then, when I transitioned to AIDS, herpes outbreak were common every 3-6 months or so. No immune system meant that I couldn't fight these infections off.
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