Table of Contents
Tell us a little about your life.
I'm 15, about to turn 16. I live with my mom and my older brother in the Bronx -- it's fun -- but my mom wants us to move back to Brooklyn. To tell you the truth, I wish I could live in Trinidad. I miss Trinidad. I miss the hot sun. I miss my grandmother's cooking, and her waking me up in the morning. I miss the beach, going on the boats, everything.
I'm in the 10th grade. Umm ... I'm talking to someone right now, and it is starting to get serious. He doesn't go to my school, but he knows about my status. Oh, and I had a pet. I want another one -- a puppy.
Do you plan to have children in the future?
Yes, I want two kids. No, as a matter of fact, I want four -- two boys and two girls.
Where did you grow up?
I grew up in the Bronx most of my life.
Any thoughts of college or what work you want to do?
Yes. I want to go to Harvard and I want to be a lawyer.
Was there anything that you wanted to be when you were younger that you totally changed your mind about?
I always wanted to be a lawyer because my godmother is. But I always used to like ... crime movies, mysteries. I like to solve crimes and stuff like that.
Who are the most influential people in your life?
To tell you the truth, I used to look up to my mother, and in a way I still do. But I look up to my godmother now because, you know, she's a lawyer and I want to be in her shoes.
What do you like to do in your spare time?
I like to talk on the phone, go outside, go shopping and have fun.
Are you a religious or spiritual person?
Yes, I am a Baptist. My family is a spiritual family.
Do you attend a church?
Yes, I do.
How long ago did you find out you were HIV positive?
My mom told me I was HIV positive when I was, what, 6 years old. She was like, "Raven, do you know that you are HIV positive?" And I didn't understand at that time what it meant. But I used to see ads on TV and stuff like that. And I asked her, "Are we gonna die?" And she was like, "No, there is medicine that won't take the disease away, but it will just take care of us." At first, when she told me I was HIV positive, I thought it was like a cold or something. I said, "Mommy, so it will go away?" And she was like, "No. It won't go away, but it is something that we live with."
You were born with HIV, correct?
Yes, I was.
How did you feel when she told you?
I felt sad, after a while. And when I started learning about it more, I felt sad and I didn't want to be bothered with nobody and stuff. Like, I really didn't know what to do.
How did your feelings change over time?
As I got older, I understood it more. And my mother, she's an outgoing person, and -- I'm not gonna lie. I had to deal with a lot of stigma and stuff, but my mom would always be at my side and say, "Well, you know, we have to do what we have to do and just get over it." But it was very hard for me to get over because a lot of kids used to make fun of me.
Sometimes my mom would be on Ricki Lake or Oprah, or they'd see us in magazines or TV, and they would be like, "Oh, Raven's got the monster," and things like that. I used to cry a lot. I used to come home. Sometimes I used to stay in the bathroom and not go to class and stuff. It's changed because now I'm in high school and now all of my close, close friends know.
How long do you think it takes to really process an HIV diagnosis?
It takes a while, because there are some people who don't know what to do if they find out.
What advice would you offer to somebody who has just found out they are HIV positive?
I would just say, "Keep trying. I understand how you feel because I went through the same thing. But you just gotta keep your head up. You're still a human being -- but there is just this one thing, that we have the virus."
What do you think is the first thing someone who has just found out they are positive should do?
If they think that they are [positive] already, they should talk to a psychologist, set up somebody to talk to. Let it out and stuff. Don't do nothing stupid or hurt yourself. I would tell them to talk to somebody -- or they could even come talk to me.
How has HIV changed you?
I have not changed my life, because I feel that I am a normal kid. I am a human being. And like I said, there is only one thing -- I have the virus and I have to take these pills everyday. But I feel like a human being and there is nothing else that is different about me.
Are you afraid of dying?
Nope. Because I am going to a better place and, to tell you the truth, I wish I was with my auntie right now. She passed away. She had cancer.
When did you first realize that you were black?
To tell you the truth, I am black and Hispanic. And my mother is like, "You have more black in you." I'm mixed with so much stuff, but I call myself black because I'm brown-skinned. But until like the fourth grade ... one time I was talking to my homegirl and I was like, "Hey, nigga'." And my teacher was like, "Do you understand what that word means?" And then she went on to describe everything for me. And I was like, "Wow! She's describing us. We're black!" And then I really understood everything.
To what extent have you experienced racism in your life?
I have not had to deal with any of those kinds of things.
What do you think is the biggest challenge facing African-Americans today in terms of HIV?
From my point of view, when black people find out they have the disease, they don't know what to do -- and I think they just go ballistic, they try to commit suicide and stuff like that. They don't know how to tell their partner or their family, they don't know how people are going to react to them. So maybe they say things like, "What's the purpose of me living?"
Are there specific HIV risk factors of special concern to African Americans?
There are kids that don't know anything about this disease. And if they catch it, I don't know, they may just start to go crazy and kill themselves or do something stupid.
Are there any specific aspects of African-American culture or identity that give you strength as you learn to live with HIV?
My relationship with my mother gives me strength. I just hate taking pills every day. Some days I don't want to take them but my mom, she's like, "Come on, Raven, you have to do this." But I have my days when I don't want to do nothing. I just want to be like, "Leave me alone. I just want to be a kid. I don't want to take medicine." And she's like, "You gotta do what you gotta do."
What is the biggest change you'd like to see in HIV for African Americans?
I wish they could find a cure.
How about in HIV education and prevention?
I wish that, like back in my time, if a doctor had to tell a six-year-old, I wish that a six-year-old could be like, "Oh, I know what that means." I wish they could break it down so that a six-year-old could understand it more.
Do you think the Bush administration is doing enough for the black epidemic?
Nope! I don't like the president that we have right now. I wish we had Bill Clinton. I just don't like Bush. He has done a lot of stuff in this world that was just unnecessary.
So how would you grade his performance?
I would give him a negative zero times a zero. If I was to see him right now I would just tell him that I don't like him at all.
What are the top myths about HIV that you hear in your community?
Oh, like, HIV could make you turn ugly. Or you could die from it like within a week. I heard outrageously stupid stuff like that. And at first, when I was a little kid, I really didn't understand it. I used to believe those kinds of things. I used to always come home to my mother asking her new questions about it like, "Mom, can you die from this like within a week?" And she would be like, "No!" But I used to hear outrageous stuff, like it makes your hair fall out, it makes you lose your body shape, and stuff like that. And some medicines, they do make you lose your body shape, but they say crazy stuff like it makes your hair fall out and you lose a lot of weight and all that.
What are your fears and hopes for your generation of African Americans as they face the risks of HIV?
I think that if we still have this president that we have now ... I don't know! There are still a lot of kids in this world that don't understand this HIV virus. They think that you can't touch them or that you can't drink after them. Half of these kids probably don't even know what HIV is. They probably think it's the monster. And you could be like, "Do you know what the monster is?" And they would be like, "Yeah, we know what the monster is." And then you could be like, "What do you think it is?" And they will be like, "Oh?" And then if you ask them how you catch it, they would be like, "Oh ... by drinking off of them and stuff." I don't think that kids in this world really understand. You have to, like, really sit down with them and tell them what it really is.
What has been your experience with HIV treatment so far?
I've been good. When I was younger, I did have to go to the hospital. I had pneumonia. I was very sick, but so far I've been doing good. My T cells and everything is very good. I do take my medicine once in a ... well, I can't say once in a blue. I do take my medicine now. But at first, I did take a little vacation, because I didn't feel like taking them no more. But now I'm back on track. I've been on medication since I was, what ... six?
Do you have any other illnesses that have complicated your health?
What HIV medications have you been on?
How do you feel about your meds?
It's good, because at first I used to take eight pills in the morning and eight pills at night, and that used to be so hard for me. My mother had to crunch them up at night. But now, what I am on is easy for me to swallow and easy for me to carry anywhere. When I had to take those eight pills, I had to carry them in a tissue and swallow them one by one. And I used to be so embarrassed and stuff.
What kinds of side effects have you experienced from your meds, if any?
I had breakouts on my skin and I used to sleep a lot, and my body used to be weak. I've gotten through that, because they gave me vitamins and stuff like that. But I don't take the vitamins anymore. I still be a little sleepy, because the Sustiva makes you sleepy, but I'm doing good so far.
Have you ever had to go off treatment because of side effects?
No, not at all.
How would you rate your ability to take your meds on schedule?
I'm on schedule ... I'm really good. Sometimes my mother has to remind me, sometimes I remind myself.
Do you have any special rituals or preparations that help you remember to take them?
Sometimes my friends will ask me, "Did you take your medicine this morning?" Or my brother, he will ask me. Or sometimes, the night before, I will just put my medicine in front of my dresser so I know to take it.
Did you have any say-so in choosing your doctor, or was that your mom?
That was my mother. Since I was, I think, four years old, I've had the same doctor.
How often do you see him?
I see him within like two to three months. Personally ... he says, like, he really don't even know why he has me on medicine, since I am doing so good. I'm real healthy and stuff.
Do you think you are getting the best care possible?
Yes, I am.
Is your doctor an African American?
No. He's white.
Do you think an African-American doctor can understand African-American patients better?
There's no difference.
What kind of relationship do you have with your doctor?
A very good relationship! I talk to him like he is my brother.
Does he treat you like a partner in terms of making decisions about your health?
Do you have a health regimen that helps you stay well?
I'm gonna tell you, to be honest, I'm very lazy. But I do what I gotta do, though.
Do you consider yourself an activist?
How has doing this kind of work helped you to improve your life and health?
It makes me wiser, because when people used to make fun of me, I used to sit there and cry and let them make fun of me. But now, since I am older, I know what to say to them. I know to ignore them and stuff like that.
How have your relationships with family and friends changed since you were diagnosed?
OK, well, my family is excellent. No matter what, they love me. You know, I'm their niece, I'm their granddaughter. Nothing has changed. With my friends ... yes, I lost a couple of friends in school. But that was in elementary school -- now I'm in high school and I have all of my friends. When I was in junior high, when I was growing up, yes ... people used to make fun of me. Now that I have grown older, I know how to deal with it and stuff like that.
How do you decide whether or not to disclose your HIV status to someone?
If I see that you're very close and you're nice and you're not the type of person that will tell everybody, "Listen, that girl has the monster," I will probably pull you to the side and tell you up front, like, "Let me tell you one thing right now. I'm HIV positive and either you want to be my friend or not." But some of my friends, they are like, "Oh, Raven, you are just saying that to make me feel sad for you." And I'm like, "No, it's really true." So I'll bring in a POZ magazine, and they will see for themselves and be like, "Oh, wow," and they get emotional and all that kind of stuff.
How safe do you feel telling people about it?
Um, I do be scared, because I don't know how they're going to react. Like, suppose I be thinking that they will be like, "Uh, Raven, get out of here. We don't want to be your friend no more." And I think that it will go around the school. But then again, I know how to deal with stuff like that now.
What is the best response you have ever gotten from telling someone?
All of my friends that I told, they all got emotional and they all started crying. But all of them, they said, "No matter what, Raven, we will still love you and you will always be our friend."
What is the worst response to telling someone?
Oh, when I was in Catholic school, one of my teachers asked my mother if they had to wear rubber gloves in class. And kids used to make fun of me. One time a girl said, "You can't sit on that chair, 'cause we are going to catch it through your clothes." It used to be so much drama that I couldn't take it no more, and that's why I had to leave Catholic school.
Where do you go for support?
I get support from my friends, my family ... from everybody. Like when I'm down or depressed or whatever, all my friends -- they always have my back. They're like, "Listen, Raven, we understand." I have a loving family and friends.
How does your church address HIV?
Our pastor, she's a lady. When I first told her ... well, it was my mom that told her ... she took it OK. She started praying for us and stuff, because at that time I was dealing with a little sickness. So, you know, she prayed and did spiritual baths for us and stuff like that.
Do you feel accepted as a person with HIV there?
Yes, they were very supportive.
How has dating been for you?
Well, I just got over one not too long ago ... last year. I disclosed that I was HIV positive to my boyfriend. At first, he had a suspicion because I told him how my mother got it. He used to always ask me, "Raven, do you have it?" And I always used to tell him no, because I did not want to lose him. But on New Year's night -- not the New Year's that just passed, but last year -- he came to my house and I told him. And it was like all of the emotions just came out of him. He started crying, I started crying. And like, he was scared that he had it at first. But my mother told him that he won't have it because, you know, this and that. And, yes, we did have sexual intercourse, but we used protection. But ... it was a lot of stuff that was going on between me and him, not just because of [HIV]. He didn't really know what to do with himself, so I said, "Whenever you're ready to come back in, you can come back." But right now he's dating another girl, so, I don't know. That's it.
Have you faced much rejection from potential partners?
No, not really. All of my partners that I go out with now, I tell them from the beginning. I tell them, "Hey, I'm HIV positive. Either you want to be with me or not." And sometimes they don't believe me. They be like, "Raven, you're lying. You just don't want to be with me." And I tell them the truth like, "Seriously, yes I am."
Do you have a policy about if or when you tell a potential boyfriend that you are positive?
No, because I will never go out with another boy at my school. Everybody in my school ... once you do something or go out with somebody, the whole entire school knows. I didn't think that he [former boyfriend] would do something like that, because he always told me, "No matter what, Raven, even if we hate each other, I would never disclose your business to someone else."
Was he older or the same age?
No, older. I was 14 ... he was 17.
How do you tell someone who you want to date that you're HIV positive?
I sit down and talk to them. I always ask them, "If you had a girlfriend that you really loved and then she told you that she had HIV, what would you do?" And at first, I hear how they act, like, "Oh, I wouldn't go out with her ... I wouldn't talk to her." And I'm like, "All right ... I know not to tell this person." And sometimes they are like, "Oh, if I really love her, I would stay with her." So then, right there I know that I could tell him -- and that's when I tell him.
Do you feel that if you practice safe sex, it is necessary to tell a sex partner that you are positive?
Yes. Because, God forbid, if something happens and he finds out before you even tell him ... So I think you should tell him.
Did you make any New Year's resolutions?
To pass all of my classes and to get out of school.
What's the biggest adventure you've ever had?
Wow! My biggest adventure I ever had was when my mother called me and told me that I am one of the Millennium Dreamers that McDonald's has. If you are a Millennium Dreamer, you are offered a trip to Disney World for like five days. She told me, "Raven, you're one of the Millennium Dreamers." And I was like, "Oh my goodness!" I was so happy. I was packing all of my stuff already. And I met Christopher Reeve. And I was like, "Oh, that's Superman!" I was so happy. I couldn't believe it.
When was that?
This was in 2000, I think.
If you were granted one wish, what would it be?
Um ... let me see ... my main thing right now is just to find a cure for this disease.
What books, movies, music or TV shows have had a big influence on you?
I like That's So Raven. I like The Parkers. I like One on One. Books? I like to read books with drugs ... where there is money, sex and all that kind of stuff. I like the movies Selena, Honey, Love and Basketball, and I like that movie Space Jam for little kids. I get into little kids' movies a lot, too! I like Finding Nemo. I like Cinderella. I like hip-hop, reggae ... any kind of music! I'm a Ja Rule fan. I don't like 50 Cent for nothing. But my husband is Li'l Romeo!
Is there anything else you'd like The Body's readers to know about you?
I'm a very cool person ... really nice. And I'm a loving person. I'm caring.