January 25, 2011
Listen to Audio (29 min.)
Brown is also an author. In 2008, her autobiography, The Naked Truth: Young, Beautiful, and (HIV) Positive (Harper Paperbacks, $14.99), was published to rave reviews. And over the years, she has appeared on countless television shows, appearing on MTV, BET, America's Next Top Model, and even the Oprah Winfrey Show. She has also spoken at colleges, universities and other venues throughout the world.
This is Warren Tong, reporting for TheBody.com. If my guest today had a nickel for every time she said the words "I'm HIV positive" to a group of strangers, then she'd surely be a millionaire or pretty close to it. Marvelyn Brown, welcome to This Positive Life.
Thank you for having me.
Can you start by describing how you found out you were HIV positive?
Certainly. I found out I was HIV positive on July 17, 2003. At the time, I had been sick in the hospital for about two and a half weeks. The doctors did a series of tests. I was given a CT scan, MRI, spinal tap; and every test they gave me, it just kept coming back negative, negative, negative. They actually had told me I had 24 hours to live. The priest was called in to give me my last words.
Then it was discovered that I had pneumonia. I think what people should realize is, I had pneumonia, and it had absolutely nothing to do with HIV. I just happened to be sick with pneumonia, but was tested for HIV at a time, which I'm really grateful for. Because I never cared about HIV. I did not care about it until they told me, right then, I was positive.
How old were you?
I was 19 years old.
Wow. I pulled a quote from your book that very much highlights this. It says, "How did I not know that this virus was sexually transmitted? I felt I had been robbed by my community, my school and my church. The mantras I had heard over and over again growing up -- 'Don't do drugs; don't get pregnant; don't smoke' -- suddenly seemed so worthless. 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." Could you expand on that a little?
I had only heard about HIV on the news, when I'd see this helpless kid in Africa. I knew that white gay men were getting it. I remember Philadelphia, you know.
Yes. At that time, I was very irresponsible, too. I was selfish. I felt invincible. So HIV was everyone's issue but mine. I really didn't care who got it. As long as it wasn't me, and it wasn't affecting people like me, I just didn't care.
Did it register at all with you?
Not at all. I had other stuff. I had prom. I had Mom issues. I was into guys. I had other issues. HIV wasn't one of them. You know? [When you're a teenager, the first thing on your mind, that you're concerned about, is not health.]
So, in the hospital bed, when they told you that you were positive, what was your reaction?
I really didn't have one, because I didn't really too much know what to think. Because I truly did not know what HIV was. I could tell that it was something more serious than I had ever took it for. But that was it.
Did you realize that you were at risk at all?
Not at all. The funny thing about it was, I had no idea how I contracted this virus. At the time, I was working at a daycare. You know, kids constantly come in, and they're sick, and they're ill, and all these things. So the thing I'm thinking, on my mind, is: I got it from one of the kids.
I really did not know how that virus was passed, so the last thing [on my mind was that I got it] through sex. I had always heard "STDs [sexually transmitted diseases] and HIV." And I'm like, "Why is HIV so close to STDs, but it's not under the umbrella?" And I said, "Oh. That's because gay men get it, and prostitutes get it."
Eventually, you did find out who you got it from, right?
Yes, once I had been told, "You got this virus through sex."
And then it started going through your mind, "These are the people who put me at risk?"
Were you able to talk to whoever infected you about it?
Well, once I had been told, "You got it through sex," and told the amount of time the HIV had been living in my body, I knew who I got it from. And it was the guy that I was dealing with.
But I did not want to tell him.
Why is that?
Because I still didn't think I got it from him. He looked too good. He smelled too good. This was my Prince Charming; this was my everything. So I did not want to believe that he and HIV could even be in the same sentence.
So even when I called him, it was still this thing that, in the back of my head, that it's no way. You know. It's no way.
But I called him and I told him. And he wasn't surprised.
No, he wasn't. I told him, "The doctors just told me I'm HIV positive," and he said, "I'm sorry."
Just like that? He's sorry?
And what happened then?
We hung up. Because, at this time, I had already told people before I told him. I told five people: I told two friends, my sister, my aunt and my mom. And basically, on the same day I had found out, the rest of my national community found out, as well -- or at least, that's what I felt like. Because those five people told five people; and those five people told five people; and so the word, you know, just kept spreading.
He had caught wind of that, too; or, he understood that. And even though he probably knew, when he said he was positive, [that] he gave it to me -- like, all this other stuff -- he didn't want to have anything to do with me, because so many people had known my situation. He was that much in denial. He didn't want to have anything to do with me.
Now, you're implying that he already knew he was positive. Is that right?
Yes. I believe that he knew.
So he was knowingly going out and having unprotected sex, even though he knew.
Looking back on it (and this is just my opinion), he found out his status and didn't believe it, didn't want to believe it. Like, literally, he was that much in denial. I don't think that he's this evil person who was thinking, "I'm going to infect every single body." It was more like, "I just didn't believe it when the doctors told me." You know? Because he later explained to me that I kind of made this real to him.
He wasn't like, "Oh, I'm going to infect everybody." It was kind of, like, "There's no way I have this. The doctors got it wrong. I'm not going back. I'm not listening to this foolishness."
I think that's a very common reaction that a lot of people have.
Yeah. Yeah. Yeah.
Who was the first person you told?
The very first person I told was my best friend.
And what was her reaction, or his reaction?
Her reaction was one I had never heard. We lost a mutual best friend together from suicide months earlier. And for me to tell her, "I'm HIV positive," I had not heard this sound in her voice. It was a scared sound: "Oh, Lord, not again." You know, it was a lot of different things in her voice. She then told me she was at work and needed to work and would come and see me when she got off.
She thought you were going to die.
I think she did. Yeah. But, see, I was shocked, because I thought she knew more about the virus than I did. Because I didn't even think I was going to die! I didn't know. I didn't know. I just didn't know anything. You know? I just really didn't.
So you just started telling people, and ...
I was really telling people in hopes of somebody saying, "You know what? Things are going to be OK." Because when that doctor walked out of the room, I was scared. I'm like, "What have I got myself into?" I'm so used to getting into stuff, and my mom gets me out of it, or my basketball coach gets me out of it.
Marvelyn (right) at her graduation from Whites Creek High School in 2002.
You know, you're used to, in life, getting second chances. And I'm like, "What have I done now?"
Who was the doctor who informed you that you were HIV positive?
It was an infectious disease specialist who did the testing. But the doctor who came in to give me the results, he was an emergency room doctor. His name was Dr. Gonzalez.
And he didn't give you any information about it? He just said, "You're positive," and that was it?
Believe it or not, he, being an emergency room doctor, one who isn't used to giving people HIV tests on a day-to-day basis, he really couldn't answer all my questions. He told me he needed to give me more information.
But he didn't?
Yeah. He didn't.
Was there a level of shock involved at all, about everything you didn't know? Or everything that you were finding out?
Yeah. I felt, why didn't I know this? How was I misled so much? Why didn't anyone step in and tell me this? You know? So I was very shocked.
You were very open about it, at first. But did you close yourself off a little, afterwards?
I did. I feel like, yes, this is my purpose, and what I'm supposed to be doing. But I also feel like I'm this accidental activist. Because I only told five people; that's all [the people that] I wanted to know. But when my word starts spreading, and people start talking, I was not prepared for that, and I did not want that.
I was never like, "Oh, my God. I'm going to be this out here activist, who will share her story," and all that. I did not want that. But after those people found out that information, I kept hearing things, like, "Marvelyn's dying." "Marvelyn's losing weight." And I was just in hiding. But every day I was looking in the mirror, thinking the same thing they're thinking in their head; but that wasn't reality. I was looking good. I was growing into a woman.
I realized that I wasn't the only one who was misinformed -- because I felt that way. I'm thinking, "Did I skip class that day? What am I doing differently in the bedroom?" I didn't do anything but have sex! I have sex and get HIV. My friends have sex and get pregnant, or get an STD, and it goes away with a shot, or a pill.
And so I was like, "I have to set the record straight." I was going into this kind of very selfish, the first time I ever put my story in the paper. Because I'm thinking, "If I go in and I clear it up, I can go back to my old life. People will accept me now, because I'm going to tell everything like it is."
I went in, and it was kind of one of those things: Oh, you're going to talk about me; can't nobody talk about me better than me.
And so I put the story in the statewide newspaper, The Tennessean. And the reaction I got was a bit overwhelming. I never looked at myself as a leader, as someone who could be inspirational. I never looked at myself as any of those things. And so the response that I got from that newspaper article: that's when NAPWA was telling me they're giving me a Youth Leadership Award, and all this other stuff. I didn't know what I had done. I really didn't. And so I never thought it would go outside of Tennessee.
Really, even now, looking at it, I didn't think it would go outside of Nashville. I didn't realize The Tennessean went across the entire state.
That article almost didn't happen, too, right? Because you wanted to pull it at the very last second.
Marvelyn, age 8.
Yeah. Because I realized that it was permanent; there was no turning back from it. That is what I realized, this is like, "Oh, my goodness gracious." I was scared. I didn't have any support at the time, either.
What was the best response that you got from sharing your story?
Oh, that I made HIV real to them. It's always wonderful to know, not only who's hearing my story, but who's impacted by my story. And for someone to tell me that I made it real to them and it's now something that they're going to take seriously, that's why I do it. I don't do it to be on the back of Doritos bags. No, I don't.
You're doing it to help and educate people, of course.
And those who were like me, those who were uneducated, misinformed -- that's who I'm talking to.
Do you ever get bad responses? What's the worst reaction you've gotten?
I've never gotten any bad responses.
Not when I do a speaking engagement, or anything like that. Now, I have gotten hate mail and all kinds of stuff. But I couldn't even tell you what those things said, because they didn't impact me in any way. If anything, it motivated me to really feel like my work is not done, and there's more that I need to be doing.
When you're not Marvelyn Brown the speaker, and all that -- when you're just a normal person on the street -- do you ever get recognized, or anything like that?
Oh, yeah. Yeah, I do.
And how do you react? I mean, especially with all of the stigma and just wanting to be by yourself. How do you react when people recognize you?
I don't know. I kind of just go with the flow. But most of the time I'm laughing, because I think it's so funny. I'm like, these people think I'm important! [Laughs.]
Well, you are.
Yeah, I am, but I don't look at it like that. I really, really don't. I mean, you look at it like a job, like this is what you're doing. It's just weird. Anybody who will tell you they met me, they'll tell you I laughed.
But I listen to what they have to say and I respond. Sometimes I tell people it's not the place [to discuss personal matters.] I guess they see the strength in me that they don't necessarily see in themselves. And they automatically want to open up to me. I'm like, "This is really not the place for you to be telling me what happened last night with your boyfriend and his mistress."
Has being this public HIV activist affected your personal relationships at all?
Marvelyn with children in Tanzania.
How has it affected your family, for instance?
This had a great effect on my family. I mean, my nieces are in high school. And they've been in different incidents where their friends make fun, and do and say all these things all because I'm public; all because I'm sharing my story. Now they have to deal with it. And they don't see. They only see, "Oh, you know, my aunt's on Top Model," or, "My aunt's here; my aunt's there."
They don't see the e-mails that I get that I don't tell them about, or the stigma that I face that they don't know about. And so when it happens to them, they're automatically in this defense mode.
Yeah. And they don't understand it. They don't understand it. "I like my auntie. I love Marvelyn. Why don't you?"
Have you spoken to them about HIV? Do they know everything about it, and all that?
Oh, yeah. Oh, yeah. Like a book. Yeah, they do.
Great. Has this sort of reaction spilled over to your personal sex life or relationships?
You know what? I don't think I would have a problem with a relationship or a guy if I just wouldn't have told nobody, if you want to know the truth. I think most guys are really intimidated by the simple fact that so many people know my status, and that goes for positive and negative guys. I mean, it's really weird.
I have the same problem with those who are positive [as I do with those who are] negative. Neither one of them is easier, and there are a lot of similarities. But on the flip side of things, it's helped me weed out a lot of guys. Like, I don't have to do dating. I don't have to go through that dating period that most people go through. All I have to do is tell them I'm HIV positive. If they stay, it's a good sign; if they leave, it's a bad sign. And I don't say it's a bad sign because, oh, they don't want to be with me because I'm positive. But if you can't look past the simple fact that I'm not HIV -- it's just a virus that lives in my body; it's preventable -- then you had another agenda.
Is it that they can't deal with you being public about it?
So many people knowing, yeah, and being public.
Can we talk a little bit about your health since your diagnosis? How are you doing? How are you feeling?
My health is great. Last time I checked, I had 1,010 T cells.
I'm undetectable. It's one of those things. I go out and I help others, but I am helping myself, too. I do a lot of stuff for myself, and I love myself. I care about my health. So I do what the doctor tells me to do, whether I like it or not.
And how did you find your doctor?
Actually, she was my infectious disease specialist.
So, the same one who was present when you were diagnosed, right?
Yes. Her name is Dr. Lea. She was called in to do the serious tests on me. She's the one who discovered I had pneumonia, who later told the doctors, "She's HIV positive." And when she came in to give me more information -- this is after I had already had the pamphlets and the booklets that the emergency room doctor had given me -- she got to talking, and I was like, "You're stuck with me."
She started laughing. I said, "No. You're stuck with me." You know, because I was on my deathbed. They told me I had 24 hours to live. It was the end for me. And I looked at her like: I trust you. You saved my life. Matter of fact, you actually saved me a lot of money, too. Because if they would have done another test on me, I would have been in debt for the rest of my life. Like, thank you, but you're stuck with me.
It's really surprising that they did all these other tests before a simple HIV test.
Marvelyn after winning an Emmy Award for a Kaiser Family Foundation/MTV Think PSA in 2007.
They never thought I was positive, ever. I was a healthy, young woman who had never been to the hospital a day in my life. I was an athlete. They say it's because I had insurance. You know, like, all these things.
Oh, I see.
Yeah. Which is no excuse, but ...
Which is no excuse, of course. Thankfully, you're OK now. Are you on meds?
Yes, I am.
What are you taking?
I am on two PIs [protease inhibitors] and a non-nuke.
Which ones, specifically?
I don't ever get into that. I don't because I get a lot of e-mails from positive people that are like: "What medication are you on? You look good. I want your medication!" But just because it works for me doesn't mean it will work for you. I need you to take your virus more seriously and see what you need to be on.
And medication is only part of the reason why I look good. I mean, I've got to give my mom and my daddy some credit.
Good genes. What else do you do to keep healthy? Obviously, you exercise, being an athlete.
Yeah, and I eat right.
Is there a special diet, specifically?
No, no. I'm not really on a special diet. And it's really hard, because I'm constantly traveling. But I make sure to eat a lot of greens. I eat organic as much as I possibly can. And I don't eat a lot of fried foods.
Good advice. So, we've alluded to all the work that you do. What specifically is it that you do? How would you classify it?
I'm an author and a public speaker.
I read that you started your own organization. Can you tell me about it?
It's called Marvelous Connections. And I tell people all the time that it's not a dating service, because people think I can hook them up, but I cannot. I just called it Marvelous Connections because the tagline is "Connecting Ignorance to HIV Education." And with it I do consulting work for media companies about fun and individual ways that they can put HIV into their programming so that it relates to young people. That also involves HIV testing, going out into the communities, doing HIV 101, and relating my personal story.
Also, currently, I'm the ambassador for this really great campaign. It's called Greater Than AIDS. It's a campaign that lets people know that they are greater than the virus. It's a really good campaign that's getting a lot of attention. And they just released phase two of the campaign, which is called Deciding Moments. I'm just so happy to be involved to the point where it will be featured on billboards, and on bus stations, and magazines. The "deciding moment" is just the moment that someone felt that they were greater than AIDS -- and my deciding moment was reaching others with my story.
So, if you visit the Web site, greaterthan.org, it's letting all people tell what their deciding moments were, and how they feel they are greater than AIDS.
A Greater Than AIDS highway billboard in Philadelphia featuring Marvelyn.
What has doing all of this work taught you?
Oh, it's definitely taught me to really accept myself for who I am, and to realize ... I look back at me as a child, and there was just no way that I was going to be a leader. It's shocking to me because constantly, as a child, I had people telling me what I wasn't capable of, or what I would never do. And this was even before HIV. Then when the HIV came, it was just like, "Oh, you're really doomed now." So to be able to tell my story, and it impacts people, is great.
As a child, my mom had me involved in all kinds of crazy stuff, from dancing, to acting, to singing. So I was put on a stage before I was even ready, or really knew what it was. And I feel like everything I did, including playing sports, has led me to be this activist that I am, and has helped me in that way.
So through it all, I've really learned to love myself, accept myself, and also to really take responsibility. Because I think that taking responsibility was the one thing I was so scared about when it came to being a leader. I didn't want it. Put that on someone else!
Do you ever get tired of it? Do you think you'll stop?
No, I don't.
Why do you think that you're only one of the few young, black, positive women out there speaking about HIV?
People ask me that all the time, and I have no idea. Other than this is what I'm supposed to be doing, and I've got God behind me. Because I come across so many young people who have stories and I'm even mesmerized by their stories. I'm like, everyone's paying attention to mine! I can't explain it.
There are a lot of issues in HIV today. Which are the most pressing? Which ones need to be addressed more?
Since I'm more on the prevention side, I really try to stay away from policy and politics. I definitely see issues that need to be addressed and be of concern, but I really leave that to my colleagues. Because HIV is so broad, and I just don't want to step outside of the prevention thing that I'm on.
Well, from a prevention standpoint, what do you think needs fixing?
Oh, HIV needs to be talked about more in the schools. Like, I'm sick and tired of going into these schools and kids having to have permission slips to hear me talk. Or, the state doesn't approve my programming, so I can't even come in there and give basic HIV 101 -- you know, basic comprehensive sex education. This needs to be happening. There are a lot of things on the prevention standpoint.
In your book, you spoke about what you call the duality of HIV where, on the one hand, you're inspired to make a difference, but on the other hand, you don't want to be defined by your disease. Could you talk about that a little?
Yeah. HIV is not an adjective. It doesn't define me. It's not who I am. It's just a virus that I have. I don't want to be defined by it, because it's not an adjective. I want to be defined as being marvelous. That's the adjective that defines me.
Could you talk about how you feel about HIV now, as opposed to your feelings when you were first diagnosed?
Although HIV is manageable, it's still very, very hard to live with. So I take it very seriously. I take my virus seriously. That's the only way that I can continue to kick its ass. I have to stay one step above it. And so I do. I take it very seriously now. In the beginning, I didn't look at it any differently than I looked at cancer, diabetes, or anything like that. I know now that it's a lot more serious.
That's good. Is that the advice you would give to anyone else who just found out he or she was positive?
Yeah, absolutely. I would let them know that it does not define you. And life goes on. And HIV will do what you let it do. Yes, you now have it; however, you can live with it. You can deal with it, and you can overcome it.
That's great advice. What would you tell people who are HIV negative?
Stay that way. Stay that way. You do not want this. And if I hear one more person say one more time, "You know, it's one pill, once a day." Yeah? I can't even take that one pill, once a day. I take seven horse pills each and every day of my life. And even if it is just one pill, once a day, I'm pretty sure it has side effects and everything else. And you still have to deal with the stigma of being HIV positive.
You don't want it. So if you're negative, stay that way because you do not get a second chance for this. You do not get time off. No vacation. It's not a child; it cannot go off to college 18 years down the line; your little sister cannot babysit it. You have to be responsible for it 24/7.
Well with that, this interview will come to an end. Marvelyn, it's been a great pleasure talking to you.
This transcript has been lightly edited for clarity.
Warren Tong is the research editor for TheBody.com and TheBodyPRO.com.