To Be Young, Beautiful And HIV Positive
MICHEL MARTIN, host:
I'm Michel Martin and this is Tell Me More from NPR News. Last week, the International AIDS Conference convened in Mexico City. It's been more than 25 years since the world first learned about HIV and AIDS. Time has made people more aware than ever and science has allowed people to live longer and healthier lives than ever, and still the epidemic continues to grow.
In the U.S., African-Americans are being hit particularly hard. A recent report from the Black AIDS Institute reveals that more than half a million African-Americans live with HIV/AIDS, and 20,000 or more become infected each year. It's become the leading cause of death for black women aged 25 to 34.
The question is why. Why, after years of education and outreach, are so many young black people getting HIV? Here to talk about this are two women who bring personal experience to the conversation. It's our Wisdom Watch.
Rae Lewis Thornton is a well-known activist. She's been working to prevent the spread of HIV/AIDS almost as long as she has had the disease, which is almost two decades. She joins from Chicago. Also joining us is Marvelyn Brown. She was 19 when she tested positive for HIV in the year 2003. She's written a new book, "The Naked Truth: Young, Beautiful, and (HIV) Positive." Marvelyn Brown and Rae Lewis Thornton are with me now. Welcome. Thank you both so much for speaking with us.
Ms. MARVELYN BROWN (Author, "The Naked Truth: Young, Beautiful, and (HIV) Positive"): Absolutely.
Ms. RAE LEWIS THORNTON (HIV/AIDS Activist): Thank you for having us.
MARTIN: Marvelyn, I want to start with you. I think your book is very important because it answers a question a lot of us want to know. HIV/AIDS has been around the entire time you've been alive and many people just don't understand, you know, why this epidemic continues to grow. And in your book you describe the scene when you first learned that you tested positive. You decided to let all the men you had been with, that you had sex with, to let them know, which I think was very responsible of you to do.
And you wrote: "Not one of these guys, for one second, thought he had it. Only one even realized it was sexually transmitted. How had all of my generation missed this memo?"
That's a good question. How is it possible?
Ms. BROWN: Well, I know for me, like before that scene, I described me actually finding out that I was HIV-positive and really not knowing how to react because I didn't know what HIV was. Although it had been there my entire life, being so young, I was invisible. I was at a very vulnerable stage and HIV was the last thing on my mind.
MARTIN: In fact, the other thing you write in the book is you said, "I'd seen friends get pregnant at a young age and have their whole lives changed so that, too, was something I understood, but never had someone mentioned the possibility of me, Marvelyn Brown, contracting HIV from unprotected sex. I had seen it as something only Africans or gay men got."
You mean, in all the time you were in school watching, you know, Oprah or whatever, watching TV, never came into your head?
Ms. BROWN: I mean, HIV was probably all around me but what I'm saying, being 19 years old, I was more concerned about the prom, I played sports. My worst fear was getting pregnant. I'm pretty sure HIV presented itself several times, I just never thought it could happen to me so I didn't care. I didn't care about HIV.
MARTIN: Rae, I want to get your take on this. You were tested positive at the age of 23. You've dedicated your life since then to educating young people about HIV/AIDS, and when you hear Marvelyn's story, how does it make you feel?
Ms. THORNTON: You know, she's classic, and what I see and continue to see across this country is that there's been a disconnect on one's personal life with HIV. The earlier images of HIV really impacted America. We still by and large believe it's white, we believe it's male, we believe it's gay, we believe it's other, we believe it's, you know, women who are promiscuous, and we think it's not me and so I see her story as pretty much consistent.
That's why we have to begin to have different faces talk about HIV. We have to speak diferent language when we talk about HIV, and we really have to begin to talk about personal responsibility. The fact of the matter is you got to do something to get it.
MARTIN: But Rae, talk to me, though, about - I mean, there are all these groups that you hear about like Balm In Gilead, you hear of churches having outreach, you hear of HIV/AIDS Awareness Day, you have celebrities who've been very involved in raising awareness. And I guess I think about you, I think of the fact that you have been on television, you've been on the covers of magazines, you've given speeches all over the country or in schools. I don't know how - what, you're in a school like every week?
Ms. THORNTON: Yes.
MARTIN: So I guess what I don't understand is that - what? That people are talking and nobody is listening, or...?
Ms. THORNTON: There is a disconnect. The fact of the matter is is that people hear about HIV and we know about HIV but we never believe that HIV could happen to us. We don't believe that we have sex with people who could have HIV or the type of way I'm living my life could put me at risk for HIV. We judge the word "risk" as something out there that doesn't apply to me. That's something that's abnormal.
And what people need to realize, we need to begin to bring the message more hump(ph) - that's why I've always been very candid and forthright with the message, so that there can be a connection that this could be you, also.
MARTIN: Marvelyn, when you were growing up, did you ever see somebody like Rae, African-American woman like yourself, talk about HIV/AIDS?
Ms. BROWN: No, I didn't, actually. I mean, like I said, again, it could have been there. Because after my diagnosis I had people tell me, oh, someone - because I was involved with sports and the coach was very involved with us. And he told me he had someone to come talk to us about HIV and there's no telling where I was when that conversation was going on.
MARTIN: You think the education might have been there but you tuned it out. You think you might have just tuned it out or you think it just wasn't there?
Ms. BROWN: I think a little bit of both because I still don't remember the conversation.
MARTIN: The other thing that I'm interested in is what Rae is talking about, the whole personal responsibility message. You don't consider yourself to have been, you know, promiscuous, which I know is a loaded word, right?
Ms. BROWN: Right.
MARTIN: But even as young woman at 19, you'd had a lot of partners and, you know, I mean, you know, what I'm saying - marriage doesn't seem to have been part of the conversation for any of these situations. Was it your thinking that - what, it's sort of OK to sleep with somebody you don't know particularly well as long as you feel - you know what I mean? Can you just talk to me about your thought process there?
Ms. BROWN: Well, I felt - and even I talked about it in "The Naked Truth" - how I was late when I started having sex because most of my friends had already lost their virginity. You know, some of them had been pregnant at the point when, you know, I decided to sleep with a guy. But normally, when you're in high school, if you have a boyfriend, you have a boyfriend for over month, it's a given, a known fact that you're having sex.
MARTIN: Over a month.
Ms. BROWN: Yeah.
MARTIN: That's deemed to be enough time to get to know somebody.
Ms. BROWN: I mean, when you're 16, 17, 18 - I mean, I know very differently now. But when I was there? Oh, yeah, I probably was in love and everything. This is teenage love, puppy love.
MARTIN: You know, some people, Rae, think that there's something called the Magic Johnson effect at work. No disrespect to him, but the idea that some people don't take HIV/AIDS seriously. They think it's like diabetes. It's manageable but survivable. Do you think that that's true?
Ms. THORNTON: I think that is true. And I think that Magic, unfortunately, has not done a very good job at articulating treatment and care and how it's impacted his life. And what people need to know is that you cannot just pop two pills a day and be OK. The longer you live with this disease, the more medicine you take. I take 15 pills a day. I just came off a four-month bout where I was hospitalized twice, one for eight, one for 15 days, and had to do a pickline for 35 days and an intravenous medicine for 13 hours a day.
So the reality is, is that we haven't really done a very good job. And I think the media, too, hasn't done a very good job at really talking about what it means to be HIV-infected, what it really means to have to manage this disease on a day-to-day basis. And so we have to convey the message that, yes, you can live with HIV, but the idea is that we need to begin to change our lifestyle so that we don't become infected, because managing HIV is a bugger.
MARTIN: If you're just joining us, this is Tell Me More from NPR News. I'm speaking with two women who are talking about living with HIV/AIDS, Rae Lewis Thornton and Marvelyn Brown. Marvelyn Brown has a new book called, "The Naked Truth: Young, Beautiful, and (HIV) Positive."
Marvelyn, the other thing that was interesting to me about the book is you talk about the fact that there really still is a stigma attached. I remember when Rae first was tested positive at, you know, 23, and how this whole business about people not wanting to eat, you know, off - having to wash your plate separately, people wanting to wash your clothes separately. There was this whole issue of some - even medical professionals being concerned about offering care to patients with HIV. Marvelyn, you experienced some of that. Tell me a little bit more.
Ms. BROWN: Well, I experienced so much stigma, and I actually still experience stigma to this day. But when I look back over I've realized that HIV was something that scared people around me, my family, my friends, and when it came down to it, they was not fully educated about HIV. But once they did educate themselves on the virus, they came back around.
MARTIN: The other thing, though, that I still find interesting is that when you called family members to tell them you're in the hospital, very sick, people have been very worried about you, and you called to tell them that you finally had a diagnosis, because nobody knew what was wrong. You know what fascinates me is that some people, like your older sister, your aunt, people who are not that much older than you, did know that this was something serious, but you didn't. And I'm wondering, you know, where is that gap? Is it just being a teenager and being clueless? You know, I mean, why is it that your older sister knew that this was serious business and you didn't?
Ms. BROWN: Well, my sister is 10 years older than me and she was - see, the thing is, they still didn't know about HIV. When they say it's something serious, they thought I was going to die. And I asked my doctor the same thing. I said, I have AIDS and I'm going to die. And he said, no, you do not have AIDS. You have HIV. And no, you're not going to die. And that's when I was like, well, what is it about this virus? And I began, you know, calling, you know, calling people, wanting a little bit more clarification that I was going to be OK.
MARTIN: How are you doing now?
Ms. BROWN: Oh, now, I mean, I'm marvelous.
MARTIN: As well you should be.
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Ms. THORNTON: Let me ask you. You were diagnosed with HIV. but what particular illness sent you to the hospital?
Ms. BROWN: I just had a regular pneumonia. When I found out, I actually found out when the virus was only living in my body for three weeks. So I found out my diagnosis very early.
MARTIN: It's interesting because you can see that Marvelyn has benefited from some scientific advances. I mean, the fact that the testing was so sophisticated that they could figure out just how long - that the antibodies were present, right?
Ms. THORNTON: You can. Actually, you can, Michel. But the reality is is that it takes eight to 10 years for HIV to destroy your immune system and onset the disease AIDS. When I was diagnosed with HIV, I had been infected for four years. I didn't know I was infected because there was no test to test for HIV during those four years, those earlier years that I was infected. But I didn't even get sick until almost seven years after my diagnosis.
MARTIN: Rae, I wanted to ask you. Do you think this is an education issue or is it a self-worth issue? Was it an issue?
Ms. THORNTON: I think that it is a self-worth issue. I think that we miscalculate on this disease. We miscalculate our lifestyle and our behavior. And I think that there's a connection with how the earlier images of HIV were portrayed in the media and how we see that as relating to ourselves. I don't think that we have done a great job at disconnecting from white, from gay, from male, from IVdrug user, from prostitute, from people who live a lifestyle that's abnormal. And what I'm saying is, how we understood HIV first generation has not translated into what that means for me now, you know, three, four generations later.
MARTIN: Marvelyn, what would you like people to get out of your book?
Ms. BROWN: Well, my book is about me finding, you know, self-love through my diagnosis. And I do take responsibility for the actions that I played, which is one of the reasons why, you know, I do not blame, you know, my prince charming or I do not blame the school system or, you know, the media for playing a part on my diagnosis because at the end of the day, I had a choice. And I chose to have unprotected sex, so now I'm dealing with the consequences.
And unfortunately, I didn't care about HIV until that happened to me. HIV was my teacher. And I don't want HIV to be anyone else teacher because HIV is a preventable disease. You do not have to contract it.
Ms. THORNTON: That's a fact. And let me just say this. And Marvelyn, I, too, was a young girl out there having sex. And some of what I have had to say and had to come to grips with at 46 is that, yes, I had sex with men that I loved but I also had sex with men that I wanted to love me. And so we have to begin to candidly talk about that in a way so that women know, girls know, that every time you lay down with a man, whether you love them or you think you love them or you want them to love you, every time you lay down with a man without a condom, you put your life against that sexual experience. And that's the message that we have to get out. That's why, you know, I celebrate Marvelyn for, you know, taking the stand and doing the work. But we've got to just keep forging ahead because the statistics are looking gloom for black people.
MARTIN: Marvelyn, do you have any final word?
Ms. BROWN: Well, I just remembered when I very first start taking my story public. I went to go see Rae Lewis Thornton talk and I met her and what she told me stuck with me so, so much. She told me to find my message and to stick with it and I've done just that. And my message to young people is to get tested, get educated and be responsible.
MARTIN: Well, that's great. Well, Rae, see, you are having an affect.
Ms. THORNTON: Well, I hope so.
MARTIN: But, Rae, I have to ask, though, in a way, does it hurt a little bit...
Ms. THORNTON: Oh, yeah.
MARTIN: That after all the work...
Ms. THORNTON: Let me tell you a story. I was at the clinic a couple of years ago. There was a young lady there about - very pregnant, very pretty. And I spoke to her and she spoke and she told me that she had known her HIV status for two weeks. She found out on Valentine's Day. She was eight months pregnant and she was 19. And, you know, she started crying and I started talking to her and encouraging her and tell her how she can live with this disease.
I don't do this for people to like me, for kids to say, you were a great speaker. I do this so that you would never end up in the AIDS clinic with me. But for every one of those girls, there are 10 other girls who write me, who say, you changed my life. There are guys and one of my best friends now, he said to me, if I hadn't heard you speak at Jack and Jill when I was 16, I would have started having sex right then. And he waited until he was 21. And so, yeah, you can't save everybody, but you've got to keep forging ahead.
MARTIN: All right. Final thought from you, Marvelyn.
Ms. BROWN: Just simply, care enough about yourself to protect yourself. Love yourself enough to not let yourself go in the moment because I really feel like I gave the power and my future to someone else when I decided to have unprotected sex with them.
MARTIN: OK. Marvelyn Brown is an HIV activist. She is author of the new book, "The Naked Truth: Young, Beautiful, and (HIV) Positive." She joined us from our New York bureau. Rae Lewis Thornton is a long time HIV/AIDS activist. She joined us from member station WBEC in Chicago. Ladies, thank you so much for speaking with us and good luck to you both.
Ms. BROWN: Thank you.
Ms. THORNTON: Thank you.
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MARTIN: And that's our program for today. I'm Michel Martin and this Tell Me More from NPR News. Let's talk more tomorrow.