AT FIRST I IGNORED THE CRATERLIKE SPOTS ON MY face. Black people tend to get dry skin, so I just went shopping for better lotion. As much as I rubbed the lotion, the spots just didn’t go away. At times I couldn’t go out in public. What I thought were spots were becoming large, painful, crusty sores that flared up sporadically. My friends tried not to stare when they spoke to me, but I could tell the spots had everyone sidetracked. It looked real bad.
Did you guys see the sores on Trick’s face? He probably got the bug. You know, with all those groupies he slept with on the road. Yeah, he probably has the virus.
Back then, people weren’t as educated about sexually transmitted diseases. So rumors about what caused the spots swirled. The first thing people would say when someone appeared ill was that he had AIDS. I was worried. I hadn’t lived the choirboy life. Magic Johnson had revealed his HIV status, and Eazy-E died of it in 1995. One of my brothers had also succumbed to the disease. AIDS was ravishing our community. If I did have HIV, I was determined to face it like a man. Hell, I had already survived riots, shoot-outs, and prison. I had seen everything but the wind.
Ted referred me to Dr. Betty Bellman. She ran a number of blood tests. Then she came back and told me I had discoid lupus.
“What!?” I asked, puzzled.
I had no idea what the hell lupus was or how to properly pronounce it. I was totally in the dark. When she broke it down for me, I thought my life had ended. This autoimmune disease caused my white blood cells to destroy themselves. My body was destroying itself. Ironically, I had spent so many years doing that in the streets now my anatomy followed suit. In its most severe form, the disease could reach my internal organs and kill me. My kidneys and liver were at risk. It caused my hair to fall out. The sun became my worst enemy. It’s like an AK-47 with a double clip on it.
The doctor put me on medication, but I soon stopped because the side effects were unbearable. For a moment I decided that this was the end of the road. The news took me back to that place in the desert I mentioned earlier in this story, where hope leads you without a pot to piss in.
Fate would give me a taste of happiness, but somehow pain just always had to come knocking on my door. Then I started doing my research on the disease. I and so many other people were in the dark about lupus for a damn good reason. I found out that I wasn’t alone with this condition. It killed hip-hop producer J Dilla.
The disease primarily affects black and Hispanic women. Little research has been done for the simple fact that it affects us. The powers that be don’t want to invest money to come up with a cure for a disease that targets my community. A lady that I considered my grandmother has the disease so bad she’s almost terminally ill. It’s affected her bones and spinal cord. As many as 1 in 250 black women are likely to get the disease. I figured the same way I was using my experiences in the streets to spotlight conditions in the inner city, I could use my current condition to bring awareness to a disease that is unnecessarily claiming the lives of millions of my sisters. It can be an embarrassing disease to have, but I’m letting people know they don’t have to suffer alone. I turned to family and friends for support. Joy became my anchor.