HOW TO LIVE WITH AIDS: A Personal Story By Rae Lewis-Thornton

Jet, Feb 14, 2000

AIDS is "an ugly, difficult and painful disease," says nationally recognized AIDS activist Rae Lewis-Thornton.

And Rae Lewis-Thornton of Chicago knows what she is talking about. She has been living with HIV and AIDS for 15 years.

She was diagnosed HIV positive in 1986 at age 23 after a routine blood donation to the American Red Cross. She says she contracted HIV through heterosexual contact a few years before she was diagnosed.

She is now 37 and has had full-blown AIDS for the past seven years.

The last time the public heard from her, she was in deteriorating health and said she was near death.

Four years ago, she told high school students, "By the time your freshman class graduates, I will probably be dead or too frail to take care of myself." She notes today, "Those students are now juniors in college."

Today, she is a walking miracle from God. She is vibrant, healthy and happy as she continues to battle AIDS.

She continues to speak about the horrors of HIV and AIDS and urges people to take control of their bodies, their health and get tested for HIV.

She candidly reveals the state of her marriage: "I talk a lot about living healthy, and I don't think I could in my right mind, in good conscience, talk to women about living healthy while I was living in an unhealthy marriage," she says.

The first national story on Rae Lewis-Thornton and her battle with AIDS appeared in EBONY Magazine in April 1994. She has since been featured on numerous TV shows, including "The Oprah Winfrey Show," "Nightline with Ted Koppell" and has appeared on several national television documentaries and news shows.

She won an Emmy Award for her work on a series of her life, "Living With AIDS" for WBBM-TV, a CBS-owned and -operated TV station.

She grew up in suburban Chicago, received good grades and graduated magna cum laude from Northeastern Illinois University before she began a promising career as a political organizer. In 1984, she worked as the national deputy youth director for Rev. Jesse Jackson's presidential campaign and served as the national youth director in his 1988 campaign. Later, she worked in Carol Moseley-Braun's senatorial campaign.

Below, with candor and honesty, she shares with JET readers her personal story on "How To Live With AIDS."

"People still don't know what AIDS looks like. I remember a few years ago I walked into a college auditorium and asked the young men in the audience, `How many of you find me attractive?' All their hands shot up in the air.

"I then asked them, `How many of you find me to be sexy?' Again almost all their hands went up.

"I finally asked them, `How many of you would like to go on a date with me?' Again, all their hands shot up in the air.

"I then told them, `Guess what? I have AIDS.' You could hear a pin drop.

"They were all shocked. They didn't think that I looked like I had AIDS. I was still young, attractive and vibrant. And that's just the point; nowadays you have to be careful. You don't know who has what. The face of AIDS is not always a visible face. You can't always look at a person and tell his or her HIV status.

"I have been HIV-infected for 15 years. I've had AIDS for 7. Three years ago, I was very, very ill. I was a size 2 and for all practical purposes, I was wasting away. I had two bouts of PCP (pneumocystis carinii pneumonia) in four months. PCP is the No. I infection that kills people with AIDS. I couldn't maintain weight. I had no appetite. When you cannot maintain weight, you start to have a whole host of other malfunctions with the body. My T-cell count was 8 where the average person has a T-cell count of 1,000. An AIDS diagnosis is a 200 T-cell count and at a 200 T-cell count your immune system is so severely impaired, you have nothing to help you fight infection. Mine was 8. My viral load, which is new language in AIDS research, was 397,000. Viral load is how much of the virus that has copied in your body. The more the viral load, the sicker you are. It's the opposite of T-cells; the lower your T-cells, the sicker you are.

"So today my T-cell count is 211 and my viral load is 3,000, which is a world of difference. I am a size 6 and the quality of my life has drastically improved. I am still at-risk for infections, a lot of them, actually. But the chances of my body malfunctioning are a little slimmer right now because my immune system has had a reprieve from the virus.

"Now optimally in AIDS language, you want your viral load to be nondetectable, which means you can't get a standard count. The viral load is below 500 or 1,000 when it is undetectable. But HIV is still in the blood and other parts of the body.

"I have to take 18 pills a day. It is a new class of medicine called protease inhibitor. I take a cocktail--a combination treatment of crixivan, zerit and epivir. It is a hard regimen. You have to take the new medicines every day, on time. You can never miss a dosage. If you do, the virus may develop a resistance. If you develop a resistance to one class of drugs, you develop a resistance to all drugs in that class. Although the drugs have extended the lives of people with AIDS, they are very toxic and everyone cannot tolerate them. It took me about six months to find a regimen that worked and had the least amount of side effects. My early side effects were vomiting and diarrhea all day. There were days when I was so weak, I couldn't hold my head up.