The End of Rae Lewis-Thornton's 'Secret'

CHICAGO (NNPA) – Essence magazine Editor-in-Chief Susan Taylor heard Rae-Lewis Thornton speak and immediately decided that her story needed to be shared with her magazine's readers.  The December 1994 cover of Essence uncustomarily carried only one story, "Facing AIDS: I'm young, I'm educated, I'm drug-free, and I'm dying of AIDS" by Rae Lewis-Thornton.
The secret that she had shared only with the closest of close friends would now be openly discussed in beauty shops, at social gatherings and around company water fountains. Because everyone else would be reading about the most intimate details of her life, Lewis-Thornton decided she needed to have a long overdue conversation with Georgia Lewis, the woman she called mama.
Lewis-Thornton's biological mother was White, her father was Black and both were heroin addicts living in Buffalo, N.Y. Her paternal grandfather, Alfred Lewis, Sr., brought Rae into his household when she was a toddler. By then, he was 55 years old and his third wife, Georgia, was 34.
But Rae's doting grandfather died of a stroke when she was 6 and Georgia Lewis continued to rear her. Though they had a tempestuous relationship, Rae felt it was only fair to tell Georgia the news before she learned about it elsewhere. At the end of the conversation, Lewis-Thornton wasn't certain how well her mother had processed the information. But that uncertainty wouldn't last long.
"Two weeks later, my mama called me and said, 'See bitch, I told you if you wasn't no whore, you wouldn't have AIDS."
But most of those who read the account of Lewis-Thornton's life were grateful, not critical.
"That took me national," Lewis-Thornton said, referring to the Essence story. "I became in demand as a speaker. People started to bring me across the country."
She was accompanied on those trips by Kenneth, her husband of four months.
"He said that I was his ministry," Lewis-Thornton said. "He believed that he was supposed to be in my life during this period and he was supposed to be there and watch me and be there to support me as I made my transition to death. And he was going to go around the country and talk about what it was like to be my caregiver."
But when Lewis-Thornton didn't die, the marriage did and the couple got a divorce.
When Rae decided to date again, she had to face a new reality.
She explained, "The stigma around HIV makes it complicated for men who are attracted to me to say, 'You know what? I can do this.' It's not them per se, it's the stigma."
Now if a man openly dated Lewis-Thornton, the whole world would know that he was dating a woman with AIDS, raising questions about his HIV status and whether other women will want to risk dating him.
"It becomes a very tiresome and a sad thing that men didn't want to be with me publicly, didn't want to say that, 'Yes, I date her and I think she's a wonderful person' as opposed to doing it in the dark," she said.
Lewis-Thornton is more than the sum total of AIDS. She was a political organizer as a teen, working on the campaign of Chicago Mayor Harold Washington and later the two presidential campaigns of Jesse Jackson. But the drain of AIDS cut short her career as a political strategist and altered the quality of her life.
"At the end of April, I started an intravenous drip, where you take an IV internally, in my arms," she said. "I had to receive the drip twice a day, two hours a day at home and infuse myself because home health care does not send out a nurse to infuse you. And that medicine made me sick and tired and lethargic. Some days I felt like I couldn't get up and brush my teeth.
"People would call me and say, 'How are you doing, girl?' I'd say, 'I'm tired.' And they'd say, 'Okay, I'll keep you in my prayers.' Has anyone thought that I can't stand over a stove and cook? Or, if I say, 'It took everything I had to get up and brush my teeth this morning,' they say, 'I'll keep you in my prayers.' People don't get it. I look normal and I sound normal, but managing HIV requires a lot of work. And you have to manage it well because it will mean the difference between life and death."
She has thought about both life and death.
"I'm not afraid of death, I'm okay with death," she declared. "It's the dying that's the hard part, the loss of your faculties, the loss of who you are and what you are and what you do. Unless you just get hit by a bus, a chronic illness that kills you is a slow process and there are so many stages to that. The death is easy."
But life isn't.
"I've had a lot of physical changes with HIV," Lewis-Thornton explained. "That's been a huge adjustment for me, emotionally, especially being an attractive woman. People say, 'Get over it, it's no big deal. You're still cute.'
"You go from a size 12 to a size two. At some point, I was a size zero. And I went back up to a size six. That was fine. And then, out of nowhere, I went to a size 12 at the top part of my body and I shrank to a size two at the bottom part of my body. And I got a hump in my back and I got a chin pouch and I looked like I was six months pregnant."
The uneven redistribution of weight happens when women, such as Lewis-Thornton, suffer from lipodystrophy, a side effect of a class of anti-HIV drugs called HAART.
She also suffers from peripheral neuropathy, which is damage to the communications network that transmits information from the central nervous system to different parts of the body. Generally, it creates severe burning and a tingling sensation in the hands or feet.  In Lewis-Thornton's case, it feels like someone is constantly sticking pins and needles into the bottom of her feet.  
"I had to fight with my HIV," she explained. "So the way I did it back then, I would say, 'Okay, I woke up this morning and all I could do was take my medicine and go back to bed.' Before the day was over, I had to make myself get up, brush my teeth, comb my hair and if I did that, then at least AIDS didn't take everything I had.
"So, there was this game I played with this disease, like, 'I can't let you take everything I've got.' And I still play it: 'I can't let you take everything I've got. I got to do something for myself.'"
Lewis-Thornton relishes her role as a pioneering AIDS activist, but refuses to be limited by that role.
"It's hard to divorce AIDS," she said. "What I'm trying to figure out now is what else can I do in addition to AIDS now that I'm still here."
Although the speaking invitations have slowed in recent years, Lewis-Thornton has not been idle. She earned a Master's of Divinity degree from McCormick Theological Seminary and is an ordained Baptist minister. Lewis-Thornton is close to completing her doctorate degree at Lutheran School of Theology in Chicago and has designed and crafted a line of AIDS awareness bracelets called RLT Collection (www.rltcollection.com).
She knows that regardless of what else she does, she'll always be known as an AIDS activist.
"My whole life has been ministry," Lewis-Thornton said. "I recognized very early in my life that there was a purpose for my suffering and there was a purpose for my life. God wanted to use me and I wanted to be used."

(To hear view excerpts from George Curry's interview with Rae Lewis-Thornton and other AIDS activists, visit www.youtube.com/blackaidsmedia  This series is made available as part of NNPA's support of Act Against AIDS and the Black AIDS Media Partnership's Greater Than AIDS campaign.)