Rae Lewis-Thornton has been living with HIV/AIDs more than half of her life.
Photo by George E. Curry / NNPA
Rae Lewis-Thornton: The Face of AIDS
By George E Curry
NNPA Special Contributor
CHICAGO (NNPA) — On January 4, 1987, northbound Amtrak Train #94, en route from Washington, D.C. to Boston, slammed into a set of Conrail locomotives in Chase, Md., 18 miles northeast of Baltimore, killing 16 people and injuring 175 others. At the time, it was the deadliest accident in Amtrak’s history. But many people were not acting like it and that troubled Rae Lewis-Thornton, then 24 years old.
“There were reports on television about how there were blood shortages because we knew that you could get HIV through blood,” recalled Lewis-Thornton, who was working at the time as a field organizer in Washington for the National Committee for a Sane Nuclear Policy (SANE) “People were saying, ‘Oh, no, I’m afraid to donate blood because I think I’m going to get HIV.’ I thought, ‘How silly,’ so I asked my boss if I could organize a blood drive.” The request was granted and the young organizer got tested along with her activist colleagues.
“About three months later, I was coming home from a late day, a 12-hour day, and there was this letter from the Red Cross. In fact, I didn’t even open the letter up. I just threw it on the counter, went about my evening and at some point before the night was over, I went through the mail and opened the letter. I had assumed it was a thank-you letter and it was a letter that said, ‘Something is wrong with the blood you just donated. Would you please call.”
Lewis-Thornton did call but got only a recording. She called again from work the next morning and was urged to come into the Red Cross office
“The entire meeting took five minutes,” Lewis-Thornton stated. “She said to me, ‘The blood that you donated tested positive for the HIV antibody.’ And I didn’t have a lot to say. And I remember this woman saying to me, ‘Are you okay?’ I said, ‘Yes.’ She said, ‘Are you sure?’ I said, ‘Yeah, I have HIV.'”
But it was what the Red Cross staffer said next that stuck in Lewis-Thornton’s mind.
“She said, ‘Well, you’ve been tested for the HIV antibody – it doesn’t mean you have AIDS. You only have HIV. You may never get AIDS.'” She gave Lewis-Thornton a telephone number to enroll in a HIV trial at the National Institutes of Health (NIH).
“I remember walking out of that Red Cross, that massive white building, walking down those stairs saying, ‘Okay, God. I only have HIV. I can handle this. Don’t ever let me get AIDS.'”
Just as she had a sense of urgency to respond to the train crash in Maryland, Lewis-Thornton felt a greater urgency to inform the man she was dating at the time, a minister attending graduate school at American University in Washington.
She had washed his clothes and they had agreed that he would stop by her apartment that night to pick them up.
“The moment he walked into the door, I said to him, “I donated blood a few months back. I went to the Red Cross today and they told me that my blood tested positive for HIV.’ And he said, “Excuse me?’ He had not been in my house for two minutes. It was a sense of urgency. I couldn’t delay it. He needed to know, I needed to get it out. I needed to tell him. I said, ‘I have HIV.’ He said, ‘Stop playing.’ I said, ‘No, I have HIV.’ He said to me, ‘You b—-‘ I said, ‘Excuse me?’ He said, “You b—-‘ I said, ‘We used condoms, so you don’t have HIV. I haven’t given it to you.’
“And in that hurt, I still did what I had to do. I gave him the telephone number that they had given me at the Red Cross to refer him to NIH where he could go to get tested. I gave him that number and he snatched the paper out of my hand and he took his clothes and he walked out of my house and that was the last time I’ve seen him.”
Speaking slowly, Lewis-Thornton recounted, “That was the first sign for me that the HIV carries a lot of stigma with it and it was the first lesson in keeping the secret.”
By her own admission, Lewis-Thornton was in denial, knowing that she was HIV-infected but clinging on to a thread of hope: She was only HIV positive, she didn’t have AIDS. Meanwhile, she was a walking contradiction.
“It was almost like I was living this dual life,” she said. “The secret was wearing me down emotionally. Here I am, an activist, I’m fighting for people’s rights. But I’m just halted. I can’t fight for my own rights as a woman with HIV.”
She continued, “When I eventually started taking medicine, AZT came along at some point, maybe a few years after. I would take all my medicine and I would take the label off the medicine and tear the label up, flush it in the toilet stool and threw the pill case away – that’s just how deep the secret was. It was weighing me down. It was the thing that was killing me quicker. I said it often: the secret was killing me quicker than the disease.”
Lewis-Thornton transitioned from HIV to AIDS in 1992.
“It wasn’t that the doctor told me that I had AIDS that took me from my denial,” Lewis-Thornton explained. “It was that AIDS showed me what it was made of. And that was the thing that took me from my denial: When AIDS stood up in my body and said, ‘I’m here and I’m here to stay.'”
To make sure that she stayed around, Lewis-Thornton took 23 pills a day. And that’s just the beginning.
“Two years ago, I had to take medicine that I injected twice a day in my stomach,” Lewis-Thornton said. “That, by far, has been the most difficult medicine for me to take. It’s a twice a day injection. When you inject, the injection itself hurts, physically hurts. And once you inject, you get a nodule that grows. The nodule can be from the size of a penny to the size of the bottom of Coke bottle.
“The nodule stays from one to seven days. You can’t inject it into the same nodule; you have to go to another site. So, I’d get two nodules a day. Sometimes when I was on the medicine, I couldn’t inject in my stomach because I had no free spaces. So, I’d inject in my thigh. Injecting in my thigh is complicated because I have no fat in my thigh – HIV has taken all the fat from my legs and my buttocks.”
There’s also an emotional side to having AIDS.
“One’s own culpability is a major issue,” Lewis-Thornton explained. “How did I get myself this jacked up, fighting for my life for the rest of my life. That’s hard…It requires a lot of therapy to get you to the place where you can be kind to yourself and say you can accept some responsibility, but don’t kill yourself, don’t beat yourself up, accepting that you could have done something different to have had a different outcome.”