Philadelphia and Tom Hanks’ character with the purple blotches all over his face (Kaposis Sarcoma) but, no matter how hard you looked, my skin was without blemish. Like most people, I too marveled over the fact that my beauty had been unchanged by AIDS. In the early days of this disease, I could have very well have had a host of things, dry peeling skin, blemishes, discoloration and thinning hair to name a few.
My body reshaped without my permission. I was embarrassed by this transformation. I went to my doctor for an explanation and she told me to “Get over it. So what, you are living,” she said dismissively. Then a few months later, I appeared on Nightline and Ted Koppel began the discussion with the very apparent changes in my beautiful face. I sat there, with mixed emotions, discussing the fat redistribution that was a side effect of my HIV medication. I was horrified that my face became his starting point, but at the same time, I knew we were educating millions that evening. Yet again, I had made my life transparent to help others but it was not cathartic. I flew back to Chicago overwhelmed with sadness and quietly asked God, “Who was going to help me?”
The next day, my doctor called to have a real discussion. I was told that I had Lipodystrophy. It’s a syndrome that occurs in individuals with HIV infection who are being treated with antiretroviral medications. I sat there and tried to digest it all but it seemed way too complicated. There are two different side effects. One called Lipodystrophy, which refers to abnormal central fat accumulation, basically a fat pad around the neck, abdominal, upper back and the breast. The other is Lipohypertrophy, which is a localized loss of fat tissues in the face (cheeks), arms, legs and buttocks. And the worst thing is that they had no idea what to do about it. The fact remained: doctors were a day late and a dollar short.
When they first saw this disfiguration of the body in HIV infected patients, they did not take it seriously. Now it was causing health problems other than vanity. So this meeting, while informative, provided no solutions. My body shape became as complicated as the diagnoses. I went from a perfect size 6 to a 14 at the top of my body. I was a size 2 at the bottom and my waist was a size 12. And, just when I thought that it couldn't get any worse, my cheeks started to sink inward and I developed a hump at the top of my back.
I was MORTIFIED! And I felt betrayed by God. “How could You set me up for failure?” I asked. I had lived so long with this disease without any serious defects to my physical appearance and now I looked like SpongeBob. No doubt I had been blindsided, literally overnight. AIDS proved to be a worthy opponent. I went straight into a depression.
That summer I almost never left the house. Not only did I not want people to see me, but I had absolutely no clothes that fit. I had spent one sad day trying to find clothes and walked away from the shopping experience feeling defeated. Then late that summer, I was introduced to Cornell McClellan, a personal trainer and owner of Naturally Fit Gym, who had a solution to my problem. I began an INTENSIVE training with him that included cardio, resistance training and diet modification. It took almost a year of working out 5- 6 days a week, but I started to see improvements.
Now, seven years later, I muddle through. There is a part of me that absolutely hates what AIDS has done to my physical appearance. Yes, I’ve had some acceptance, “This is what it is.” I fight back by making sure I’m well put together in all other areas (hair, make-up and clothes), and I work hard at trying to keep the fat under control. When I’m coming off a bout of illness, like last month, I’m at my highest weight, which means I look more distorted. I hit the gym hard to Get My Diva Back, as best as I can. But I must admit, every time I see a photo of me, I feel as if AIDS has won this round. I know that I am blessed to have lived so long with this disease. The fighter in me just wonders if I will ever shake this insecurity.