Rae Lewis – Still Fighting Aids at 50
By Freddie Allen
NNPA Washington Correspondent
WASHINGTON (NNPA) – During the of summer of 1992, Rae Lewis-Thornton, barely 30 years old and at the height of a promising career as a political organizer, decided it was time to tell her closest friends and loved ones that she was dying.
At the very top of that list were former presidential candidate and civil rights icon Jesse Jackson and his wife, Jacqueline.
“These were people that I knew and loved and they loved me,” said Lewis-Thornton.
Telling the Jacksons, would be more painful than telling the step-grandmother who had reared her.
Jackson had hired her as an intern before his first presidential bid in 1984. She would quickly move up the ranks, becoming his national youth director during his second presidential bid in 1988. But for Lewis- Thornton, a young woman who grew up abused in a broken home, Jackson was a positive father figure in her life. She became like a family member and at one point, she even lived in one of the family homes.
Standing at the island in the middle of Jackson’s kitchen in his South Chicago home, the usually confident and assertive Lewis- Thornton was petrified. And the sharp-eyed Jackson could sense it.
“He said, ‘What is it? You pregnant?’ I said, ‘Nah, I’m not pregnant,” Lewis-Thornton recalled. Summoning all of her energy, she blurted out: “Reverend, I have AIDS.”
Jackson thought she had misspoken.
“He said, ‘You mean you have HIV?’ In his mind, everyone he saw with AIDS looked like they were dying. ‘No, I have AIDS.’”
Lewis-Thornton began speaking rapidly, trying to quickly recount that she had donated blood in 1987 and discovered she had tested positive for HIV. She rushed to explain how she would rip labels off of prescription bottles and flush them down the toilet to keep others from learning of her disease. She talked about her sudden fatigue as her immune system began crashing. In 1992, she said, her HIV status crossed over to AIDS.
“Finally he said, ‘Stop.’”
Lewis-Thornton took a deep breath and looked directly at Jackson.
“He said, ‘Rae, I loved you before AIDS and I love you after AIDS’ and then we prayed,” Lewis-Thornton recalled.
Finally, a sense of calm came over Lewis- Thornton after she shared her deepest secret. “Once I told Reverend and Mrs. Jackson, it didn’t matter. I could tell anyone after that,”
she explained. Lewis-Thornton was infected with HIV the
same way 85 percent of African-American women are infected today – through heterosexual contact.
“I’d never had a one-night stand. I never had sex on the first date. Over the years, I’ve made some mistakes, most women do, but for the most part I was doing what normal women do,” said Lewis-Thornton. “You meet a guy, you think he’s wonderful, you have sex. Eventually, the relationship ends. You cry about it and you go on to the next Mr. Right and the cycle keeps going until you get married.”
In 1993, Lewis-Thornton quit her job as the field director for Chicago mayoral candidate Joe Gardner. That stint followed her years with Jackson, working for Democratic presidential nominee Michael Dukakis and the campaign of Illinois Sen. Carol Mosley Braun.
By 1994, AIDS was killing more men between 25-44 than heart disease, cancer, homicide and liver disease. It accounted for 32 percent of deaths of Black men and 20 percent of deaths of White men. It was the No. 1 killer of Black women and the fifth- leading cause of death for White women (6 percent).
“We were going to funerals every day, back then,” said Lewis-Thornton. And she feared that her own funeral wasn’t far away.
“You have to make a fundamental decision on whether or not you’re going to allow [AIDS] to take everything from you, or if you’re willing to fight for your life,” Lewis-Thornton explained. She chose to fight.
It wasn’t an easy fight. In six months, she had dropped eight sizes, to a size 4. Chronic yeast infections, herpes, and fatigue were her constant companions. She developed cervical dysplasia, pre-cancerous cells that had to be surgically removed. Peripheral neuropathy, a disease of the nervous system, set her arms, legs, and back on fire.
Still, she would not give up.
After a chance meeting with Susan Taylor, then editor-in-chief of Essence magazine, at the Black Women’s Expo in Chicago, Lewis- Thornton landed on the magazine’s cover in December 1994. There she was, dressed in a simple black sleeveless dress and dark-red
lipstick. “I’m young, I’m educated, I’m drug-free, and I’m dying of AIDS,” the cover lines read.
There was immediate buzz around the issue and a new awareness about what AIDS looked like. “We made history,” Lewis-Thornton said. “We changed the face of women with AIDS. We showed Black women that they were at risk for HIV. It was one of [Essence’s] best- selling Decembers.”
She won a local Emmy in 1996 for her first-person television series on living with AIDS. She was a repeat guest on ABC-TV’s Nightline. After the media whirlwind, Lewis- Thornton began averaging 15 speaking engagements a month. The more she spoke, the more press she received. But as her in-demand status skyrocketed, her health plummeted even faster.
Lewis-Thornton survived three rounds of Pneumocystis pneumonia (PCP), a common opportunistic infection that often results in death in people living with AIDS if left untreated.
“Young people think they’re invincible. They can’t see their future. Thirty is old to them. They have a hard time connecting those dots.” Lewis-Thornton paints the picture for them with the hard brushes of her life.
“I don’t say, ‘Don’t have sex,’” she explains. “But when I tell them I’ve had 21- day menstrual cycles, you see the girls cross their legs.”
The girls did that and more after Lewis- Thornton mesmerized them with unvarnished candor.
“I was the hottest thing and everybody had to bring me to speak,” Lewis-Thornton said. She never said no to anyone, and she never canceled, even if it meant dragging herself out of bed with triple-digit fevers and wheezing her way through workshops and public speeches.
She admits that her phone rings less frequently these days, her provocative AIDS workshops are yet another victim of a down economy and budget cuts. Lewis- Thornton predicts that she’ll do five to seven workshops this year, a third of the invitations she received in the 1990s.
But she is adaptable. Instead of appearing before as many live audiences, Lewis- Thornton has brought the audiences to her through Twitter and Facebook (she has nearly 5,000 friends and more than 5,800 likes on her fan page). Her blog, “Diva Living with AIDS,” gets 36,000 views per month.
“I tweet pictures when I’m fabulous, and they get pictures of my IV,” Lewis-Thornton said. She often walks her 7,300 followers through her day, step-by-step ,to humanize her experience. “I have people tweeting me saying, ‘You make me want to be better’ and they don’t even have HIV,” she says.
When the income from her speaking engagements dipped, Lewis-Thornton was forced to sell all of her furniture and move from a three-bedroom apartment to a studio unit. She opened an on-line store on e-Bay to sell the designer clothes she collected over the years.
“I downsized my life,” she said, admitting to a “spend, spend, spend” mentality fueled by her own mortality. “I was living too large.”
The “Diva Living with AIDS” celebrated her 50th birthday on May 22, an incredible milestone considering her HIV diagnosis spans four decades. She’s working on a book now and continuing to grow her custom bracelet business.
“I still have goals. I have so much work left to do,” said Lewis-Thornton. “I’m just waiting to see what happens next.”
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