Living with AIDS: Rae Lewis-Thornton
By Kathy Chaney
“A day in the life of a DIVA living with AIDS.”
That’s how Rae Lewis-Thornton usually starts her day when communicating with her friends and followers on the social networking sites Facebook and Twitter.
Her spirits are always high when detailing her good and bad days. She never shies away from telling it like it is as she invites you in her life via her Twitter, Facebook and MySpace updates.
“People talk about AIDS like it’s some theory. I’m living this b—- and it ain’t cute!!!“ I hv (sic) to face it – no matter what problems I face in my life, AIDS has a cruel way of reminding me that it will not be ignored.. Check Mate!” Lewis-Thornton tweeted on Feb. 1.
The 47-year-old was diagnosed in 1987 with HIV when she was 23-years-old and made the transition to AIDS in 1992. She contracted the disease through unprotected sex with a long-time lover and believes she was HIV positive five years prior to her diagnosis. She learned of her status after donating blood.
“AIDS is no longer a sexy topic. White American has moved on and Black America is in denial. We’re so paralyzed by the stigma and shame that we ignore it. That’s disheartening to me,” Lewis-Thornton said.
HIV/AIDS is the number one killer of African-American women between ages 25 and 34. African Americans are three times more likely to have HIV/AIDS than any other racial group; and African-American women accounted for an estimated 69 percent of new infections for women, according to the Centers for Disease Control and Prevention.
“I’m laying back and enjoying the wonder of the day and miracle of living with HIV for 26 years,” “Heading to the gym. Can’t be a DIVA living with AIDS and can’t fit my clothes!” “Just wondering – Do you know your HIV Status…The earlier you know the longer you live. A Fact!” stated more Twitter updates.
Then there are updates that bring the stark reality of the disease in your face: “Finally home from the doc office. 11 tubes of blood, a physical exam and a 1-1/2 (hour) interview. Having AIDS is a lot of work,” “It’s day 4 on this IV medication and it’s not cute!!! Waiting on a breakthrough!!!” “I have decided I hate the f— out of AIDS!!!“ according to her tweets.
When you visit her MySpace or Facebook page, you’ll see videos of what kind of day she may be having. There’s no sugarcoating when she reveals her life with the disease.
Lewis-Thornton kept her status a secret for years, became an AIDS activist and began speaking about the issue. When she opened up about her story, there was silence, said the former political organizer, referring to a speaking engagement 15 years ago where the audience must have overlooked literature that stated she had the disease in addition to being an activist.
“I worked the room before it was my time to speak. Guys, some alone and some with dates, were hitting on me and passing me their numbers. I just smiled and continued on the mission of why I was there. When I got to the podium and told them who I was, Rae Lewis-Thornton, and was living with AIDS, you could hear a pin drop,” she said.
It was that event that propelled her advocacy on a national level. A few months later she graced the cover of Essence magazine.
“As I walked off the stage, Susan Taylor (then-editor of the publication) pulled me aside and said she wanted to tell my story. No one knew who I was; my name or my face. Taylor said my story needed to be told. I was the new face of AIDS,” she said, suddenly realizing this month marks the 15th anniversary of her Essence cover.
That December 1994 issue with Lewis-Thornton on the cover reads: ‘I’m Young, I’m Educated, I’m drug-free, and I’m dying of AIDS.’
Shortly afterwards, her health got worse before it got better. She wanted to throw in the towel and sensed in her physician’s voice that she was dying.
“There was a time my size 2’s were too big. I had bouts of sickness because of medication I was on at the time and one day I was literally on my bathroom floor for about five hours. I couldn’t keep anything in my system and I was too weak to get off the floor,” she said.
Ready to leave the medicine alone, she called her doctor as she lay on the floor and told her she couldn’t do it anymore. Her doctor’s response scared her straight, Lewis-Thornton said as she began to tear up recalling the incident.
“She started screaming at me and telling me that I couldn’t give up and that she needed more time. More (enhanced) medicine would be available soon and she wasn’t going to let me give up. I could tell by the sound of her voice that I was dying. I found that resolve to make it through and I’m still here,” Lewis-Thornton said while a smile broke through the tears.
The key to prolonging life is the medication, which she must pay $2,400 each month as a co-payment, she said. She receives her medical care from Stroger Hospital’s CORE Center.
There are days when the medication still makes her weary, sick and she doesn’t want to take it. But, not taking the medicine is never an option, said Lewis-Thornton, also a minister who is known as ‘Rev. Rae’ by fellow parishioners at Fourth Presbyterian Church.
“I’m not confused about my status. I deal with the fact of my health. I take the dosage that I’m supposed to, on time, every time. You have to or else you’re putting yourself at risk. Just because it may give me headaches or other symptoms, I must still take it. I’ll then work with my doctor to find ways to deal with it,” she said.
When asked if she thinks there’s a cure for AIDS, the answer was a quick “No.”
“It’s one of the most intelligent viruses that exists. It replicates itself and gets stronger each time. It’s like when you throw water on a gremlin and it multiplies, becoming scarier. How do you get rid of something like that?” she asked.
“At the end of the day would I want to have AIDS, ‘No,’ but that’s how it is and I’m going strong. There’s nothing I can’t do. God has a purpose for me and I’m allowing him to use me for that purpose,” she said.
Her advice to everyone: “Have some personal responsibility and know your status.”
Photo: Courtesy of Rae Lewis-Thornton
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