Rae Lewis-Thornton: A Diva Living with AIDS

Spread it!

Share

Email This

At the age of 23, Emmy Award-winning HIV/AIDS activist Rae Lewis-Thornton  was at the top of her game. A classy, diva with an impeccable style she was doing it all.  Teen political activist turned field organizer in Washington for the National Committee for a Sane Nuclear Policy (SANE), she knew she was living the life that she dreamed about.

But life as she knew it came crashing to a screeching halt unbeknownst to her on January 4, 1987–the same day a northbound Amtrak train slammed into a set of Conrail locomotives killing 16 people and injuring 175 others. In response, Rae sprung into activist mode and organized a blood drive to aid the victims. Little did she know that giving a part of herself to the victims would lead to the discovery of a lifetime.

Three months later, Rae was forced to add two more adjectives to her glowing list of attributes—she was HIV positive. Who would imagine that this bright, energetic, loving young woman would be diagnosed with this fateful disease? Not Rae.

But the news didn’t scare her.

“Originally I wasn’t freaked out. Let’s be honest I had grown up in an incredibly dysfunctional household. So I walked away with this feeling of  ‘ok God, don’t ever let me get AIDS and I went back to work that day.”

For Rae, living with a false sense of security allowed her to believe that having HIV was manageable and that keeping it a secret was the best thing. But the transition of the disease to full blown AIDS in 1992 gave her a dose of reality.

“When I made the transition to AIDS, that is when I had the major issues. I went from taking  three pills a day to twenty-three. I went from a size 12 to a size 6 in six months. I was tired all the time because of the medicine. It was rough and I became clinically depressed. I woke up in the morning crying, and went to bed crying. That’s when the shift happened and AIDS just consumed me out of nowhere. It set center stage in my life and that became a journey.”

In coming to terms with the disease and vowing to fight it with a vengeance, Rae was finally ready to tell those close to her. Only a handful of friends knew from the beginning, but as the numbers of those who knew rose, so did the gossip.

“Why didn’t you tell us? We’ll be there. That was the response. But I was still gossip. People still talked about me being infected. Living through the gossip was hard. But what I found out that l people were going to gossip no matter what you do.”

While telling her friends and colleagues seemed to be a breeze, nothing compared to telling her Mama. Rae, the daughter of a white mother and a black father, both drug addicts, was raised by her step grandmother, Georgia affectionately known as “Mama” after the death of paternal grandfather Alfred Lewis, Sr.

Although she had and her mama had a somewhat tumultuous relationship, Rae knew that her mother should hear the news of her illness from her and not from the world.

“If I could have figured out a way to do what I do without mama knowing I would have done it. But there was no way. It took a minute for it to sink in for her. Once it sunk in two weeks later, my mother was true to who she was. She blamed me for my HIV status and never really supported me.”

As if the reaction from her family and friends ranged from shock to indifference wasn’t enough, Rae also had to approach dating in a new light of having the disease.

“What I found was that it was more baggage, not so much having HIV but being such a public person with HIV. It’s the darndest thing. Everybody wants to be with me, but don’t want anybody to know that they are dating someone with AIDS. That saddens me that I haven’t had a problem finding sex, but I’ve had a problem finding commitment. If you can’t walk in the park in the daylight, you can’t have no coochie in the dark.”

Cue the academy music for award of the year for best phrase. Ever.

Rae eventually married and later divorced.

It is through Rae’s activism and story that the deadly affects of HIV/AIDS come to life. As a living legacy, she is attacking disease head on with grace, courage, and dignity.

Appearing on the cover of the December 1994 Essence magazine telling her story “The Face of AIDS”, she leads her own unending crusade to educate and challenge young and old audiences to take control of their own bodies, futures and health.  A future for many, especially young African American women that can be destroyed in a blink of an eye if proper sexual precautions are not taken. According to the Center for Disease Control (CDC), “In 2007, for female adults and adolescents, the rate of HIV/AIDS diagnoses for black females was nearly 20 times as high as the rate for white females and nearly 4 times as high as the rate for Hispanic/Latino females.” This is in essence why we honor today, March 10, as National Women and Girls HIV/AIDS Awareness Day (NWGHAAD).

To throw out some statistics:

Every 35 minutes, a woman tests positive for HIV in the United States. Every 35 minutes.

AIDS is now the leading cause of death for African American women ages 25-34.

African American women are over 21 times as likely to die from HIV/AIDS as non-Hispanic white women.

Is there a link missing between HIV/AIDS prevention? Do people just not care? More specifically is the Black community apathetic to fighting the cause?

The answer, according to Rae is, no.

“The African-American community has always had issues addressing sexuality. Some of it is very much rooted in slavery and how we were perceived as a people. I think that in many regards we have spent a lot of time trying to fight the image of how people have perceived us and our sexuality. That has translated in some way in our ability to talk openly about sex and sexuality and what it means as a people. It’s really deeply culturally rooted for us and it’s not a quick fix.”

While Rae believes that scientists are doing everything in their power to stop a disease that is ever changing, she believes that the blame is also at the hands of the HIV/AIDS prevention community.

“Now, the AIDS community has to step up to the plate in a way that they have not and begin to really address AIDS in the African American community. People keep asking , “what’s the black community doing about AIDS? I want to know what the AIDS community is doing about AIDS in the black community. If the face has changed, the strategy has to change and how we educate and the tools we use. All of that has to change.”

But don’t get it twisted. Personal responsibility is at the top of the list in the HIV/AIDS battle.

Much of the time, people are hesitant to protect themselves because of the repercussions on the relationship of asking a partner to use a condom. Coupling that with the perception that HIV cannot become their problem can lead to a life of suffering in more ways than one for many.

“This is the other piece that people don’t understand about it. Living with HIV has been hard. Financially. Spiritually.Emotionally. Your HIV regimen itself, depending on what you are on, is somewhere between $10,000-$20,000 per year. I meant to say, $5,000-$10,000 a month. One of my HIV medicines alone is $20,000 a year.  If you could just write it off like that then you are lost. This kind of nonchalant thinking about just managing HIV by just popping a couple of pills is just naïve and I resent the hell out of that.”

Rae uses the negative and false perceptions surrounding HIV/AIDS as fuel to promote her message. After the disease forced her into retirement, she took her story on the road as a motivational speaker appearing on Dateline, CNN, Black Entertainment Television (BET), and The Montel Williams Show. She also served as a contributing editor for WBBM-TV, a CBS-owned and operated television station for an ongoing series of first person stories on living with AIDS which resulted in an Emmy award for her series.

But there is a new honor that Rae will hold near to her heart forever. On March 25 she will be honored for her work at the The Red Pump Project’s inaugural fashion show: Rock the RED: Bold. Fashion. Awareness. The Red Pump Project, was founded in March 2009 by Lovette Ajayi and Karyn Brianne Watkins to raise awareness about the impact of HIV/AIDS on women and girls.

“I am tickled pink. No I am tickled red that Red Pump is honoring me. I think highly of those ladies. I think they are an incredible group of young women. It always makes me feel good to see people who are not infected with HIV understand that we are all affected by HIV. So they have literally taken this thing by the horn and they are not slowing down and I love them for it. I love their energy, their enthusiasm, their passion for the work. So to be recognized by not just an AIDS organization, but an AIDS organization of primarily African American women, that have it on the ball is an honor. I so believe in the work of these ladies. ”

Now days Rae is taking her message to the social networking world. She recently launched her personal blog, A Diva Living with AIDSs,to give readers an everyday glimpse of what it is like living with the disease. She is also avid knitter and launched the RTL collection, a line of bracelets that she designed and handcrafted herself in January 2009.

Her number one goal is to keep living and thinking about what is next for her. After becoming a licensed Baptist minister in July 2000, Rae received her Masters of Divinity degree from McCormick Theological Seminary in June 2003. She is currently working on completing her PhD in Church History and launching the PROTECTED Project, a campaign to promote the use of protection during sexual encounters in order to prevent sexually transmitted diseases, particularly HIV/AIDS. It will emphasize open communication among sexual partners and personal responsibility. She is also a member of Delta Sigma Theta Sorority, Incorporated.

Although contracting HIV/AIDS can cause someone to travel down a path full of what ifs, and why me, Rae lives with no regrets and she urges everyone to live in the same manner.

“Everything I’ve done has made me who I am. All I can do is the best I can.”

But she also wants people, especially young people to throw arrogance out the window when it comes time to wrap it up as the soft music clicks on and the lights dim.

“There are consequences to every choice you make in life. The only person that can save you ,is you. Make smart choices. Keep yourself protected. You cannot redo a choice you made. It would be a shame for a young person to do everything right, to find themselves infected with HIV because they lived at a level of arrogance. Every time you lay down and have unprotected sex, you put yourself at risk for HIV.”

To learn more about Rae Lewis-Thornton please visit: www.raelewisthornton.com or follow her on twitter.

Tagged as: AIDS, HIV, Prevention, Rae Lewis Thornton

Article by Jenifer Moore

Jenifer serves as Editorial Director for The FreshXpress. A native of the Queen City, writing is her muse and she thrives on the Public Relations scene. While she is a lover of all music, she lives by the Biggie mantra "Sky is the Limit".

Jenifer has written 53 article(s) for us.