October 15, 2008
By Bonnie Goldman
Welcome to This Positive Life!
When were you diagnosed with HIV?
I was diagnosed on November 23, 1991.
It's amazing you still remember the exact date.
It's part of a celebration of my life, so I have two birthdays. I cut a cake when it's November 23 and I celebrate that I'm surviving.
I imagine you saw a lot of people die in those years. That was before treatment was available.
Yes. Unfortunately, I just recently lost a friend two weeks ago.
Was this another person who had had HIV for a very long time?
Yes. I think since 1996. Unfortunately, she had cancer too and they were doing chemotherapy. It didn't go too well.
Tell me what it was like in 1991 to be diagnosed with HIV.
I was diagnosed when I was 21 years old. They told me back then that I had one year to live. I really thought it was the end of my life.
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What was your CD4 count? Do you remember?
Let me think. It's been a long time. The last number I can remember is 600, a few years after that.
Yes, but they gave me that prognosis because they assumed that HIV means "dead," so you're going to die regardless. They just didn't know a lot about it.
How do you think you were infected?
I know how I was infected -- it was by my fiancé at the time. I met him and I asked him if he was positive, if he ever tested, and he said, "Yes, I'm negative." Then I started to have a lot of yeast infections for a whole year, vaginal infections. The doctor thought that I had cancer and he said, "Go and get tested for cancer. Do a biopsy, because I'm sure you have cancer. Do HIV just to rule it out." The biopsy came back negative and the HIV test came back positive.
When I went home and I told my fiancé, he said, "I knew I was going to take someone with me. I never thought it was going to be you." He knew all along that he had it!
What did you do?
I reacted to it. It didn't hit me until later on. I still was going to marry him for a few reasons. For one thing, I didn't think anyone was going to accept me with HIV. And I was in love with him and my heart doesn't know how to hate someone.
But the week before the wedding I found him with someone else in bed. He passed it to her too.
You found out later from her?
No. I found out later on from someone else that she had it.
Did you break off the wedding when you saw them together?
Yes, I did. He passed away two years later.
He left a big trail behind him.
Yes, he kind of did.
What happened then? What a traumatic way to end a relationship!
It was really hard because that first year, I really struggled a lot. We were going to get married right away after we were diagnosed; then this happened. I was with my mother in her house, and she had to do everything for me because I said, "Well, I'm going to die in a year anyway." She had to feed me because I was so depressed that my mind threw me in bed.
What happened is that someone from church passed around. They took me to a retreat and I felt that God healed my soul.
How long was this after you were diagnosed?
A year passed.
When you were first diagnosed, who did you tell?
I told my fiancé first because he was my partner; then I told my mother.
Was your fiancé much older than you were?
Eight years older.
When you told your mother, what did she say?
My mother is a very religious person. When I told her, I was trying to be calm, telling her everything was going to be OK. I remember I had to step out. When I came back, everything in the house was all over the place. She was enraged, but she was calm and said everything's going to be OK.
It's been a learning process since then. She's been OK because I'm OK.
Did you go to any doctor after you were diagnosed?
After I was diagnosed, it took me a while to accept my diagnosis. I got retested six times. I went from New York to Puerto Rico six times because I thought, somewhere, they were doing something wrong.
Where did you get tested, in New York or Puerto Rico?
The first test was in Puerto Rico.
Were you and your fiancé living in Puerto Rico at the time?
Yes, we were.
How did your fiancé get HIV?
There were so many different behaviors, so to this day I'm not sure. He used to use drugs for a long time before I met him. He had tracks on his arms and everything. I don't know if it was from that. He was also in prison, so I don't know if he had sex with men in prison because he was there a long time. He used to do stuff on the streets, so I don't know if women would come and do sexual favors to get stuff from him.
I didn't know about any of this behavior when I met him.
You found out later.
How long did it take you to go see a doctor?
I went at the beginning, and then after that I didn't go. I take care of myself now, but I kind of block some of the time out, so I cannot pinpoint if I used to go all the time. Then I moved to New York. When I was there I saw a doctor for a little bit, but that was it.
When did you start treatment?
Actually, I'm not on treatment.
You never took treatment?
I don't take medications. I was diagnosed with AIDS two years ago because my T cells went down. They came back up. I never took a medication, I never had a symptom. I do holistic things.
Are you in any long-term studies of people who don't progress very much?
Yes, I have been. I'm not anymore, but I was in a research study with the University of Miami.
Why do you think it's important to be public about living with HIV?
For me, personally, it's important to be public about living with HIV because it's part of my healing. That's what helps me to keep going: knowing that someone, hopefully, is listening and won't get infected. I think that's very important. I go to schools a lot and talk to kids. Whoever I talk to, actually, it helps me.
It might sound like a selfish reason. [laughs]
No, but it helps them, too.
Yes. It helps me to help them. That's my medicine right there.
When you say you do holistic things, what kinds of things do you do?
I take Chinese herbs. I have a hypnotherapist. I get hypnotized once a month. We visualize my T cells going up and the virus going down. I do a lot of meditation. I'm on a regimen of supplements and vitamins.
What kinds of supplements and vitamins?
I take Ester-C, omega-3, selenium, B complex, pre-natals, seaweed pills. I know I'm missing a few.
How do you educate yourself about HIV?
I don't like to read or anything like that. I moved here to Florida almost 10 years ago, and I started volunteering at a center where I was a client. Volunteering, getting involved in activities, I learned more about HIV and then I started working in HIV. That's how I learned more.
What center was this where you were a client?
We used to have it. They closed already, but we used to have Center One. That was in Fort Lauderdale, Florida.
Aside from your mom, have you told other people?
Oh sure -- it's been a long time. Slowly she's been telling her family herself. I tell other people.
Is she living in Puerto Rico?
Yes, she lives in Puerto Rico.
How accepted is it to be HIV positive in Puerto Rico?
It is not. [laughs] I don't know about now, but it was horrible then.
How was it horrible?
I was made fun of, I was pushed to the side, I was left behind on dates.
What do you mean "left behind?"
I would go out on a date and tell the person, "By the way, I just want to let you know I have HIV." I would have to take a taxi home.
They would just --
Leave me behind.
Walk away from you?
Yes. They ran away, not walked! [laughs] They ran away.
But you kept going out on dates? You were very brave! [laughs]
I had the great opportunity to meet great people and have great relationships. They didn't know anything about HIV when they met me, and they were willing to learn because they got to know me for who I am. That gave me the opportunity to teach them.
So not all of the men ran.
No -- most of them.
Most of them ran.
But not all of them! [laughs]
The good ones, we can say, stuck around.
I would say the open-minded ones, the smart ones, the ones who learned about HIV, yes.
You got very strong.
You know, you have to. No one likes rejection. I'm not going to lie: I would cry and I would not understand it. But after so many years, you have to learn that it's not about you, it's just that they don't know about the virus. Because I'm just like anyone else. I just have an illness that has no cure.
Right, and you got tested and maybe they didn't.
Exactly. Maybe they were running away because they were scared about something they did in the past, and they don't know how to face it.
Do you think there's a lot of discrimination in Puerto Rico?
I think everywhere, not only Puerto Rico. I think everywhere there's still a lot of stigma, a lot of discrimination. People don't want to learn about this disease. I really don't know why. I think they're scared to face their own behavior.
What's the worst thing that ever happened to you regarding discrimination?
I can tell you a small story. I can tell you the first time I disclosed. I don't know if this will be discrimination, but the first time I disclosed was two years after I was diagnosed. I was doing some things I was not supposed to do, because I was on the streets.
I remember this guy and we kissed. He pulled a gun to my head because he thought I gave him HIV through kissing. I really thought that moment that I was going to die of a bullet in my head. I had to calm him down, and we talked. What happened is that he had done some things in the past, and he was looking for someone to blame. He got petrified.
That's the worst thing that happened to me, I think, aside from the point that maybe some friends -- because we were so young -- would not hang out with me because I had HIV and they thought they'd get it. If I was drinking from a cup and they knew I had HIV, they threw the cup away. They wouldn't touch the cup right in front of me.
This is when you were living in Puerto Rico?
You said you were doing something on the street. Could you tell a little bit about that?
Not really. [laughs] We all have a past. It was just doing stuff. You're young and you're silly and you follow people. That's part of it.
How old were you when you moved to the United States?
It was always back and forth. I was diagnosed and I stayed in Puerto Rico another two years, then I went to New York. I was there for a few years and then I went back. Now I've been here 10 years in Florida.
You're happy in Florida?
I'm super happy!
I live in Deerfield Beach, closer to Boca Raton. I work in Miami.
Have you been able to form a community and find lots of people that you can talk with?
You know, I've been really blessed because, just before that center closed, I got to meet a lot of people. I have no family here in Florida, but I have -- in my circle of friends, my closest friends -- I have 30 of those people that you can call any time. I'm really, really blessed. I have 30 of those. If I need them, if I just need to vent, they're always there.
I think that's really important. Your support system is what's going to get you through this -- and, of course, your faith. Without my faith I can do nothing. I'm very spiritual. My support system is great.
What do you think is the hardest thing about living with HIV?
The hardest thing about living with HIV is breaking with the stigma. It's hard. When I go and teach, I ask first how a person with HIV looks and how can you tell when someone has HIV? You still hear those things about, "You can see sores." Or the kids will say you can see pink lips, or red eyes, or something. I think the stigma is terrible.
Do you think it's worse in the Hispanic community than in other communities? Or is it the same?
I used to say it was the same, but then I got to work more with the Hispanic community here in Miami, and I think it's worse. Some people pass by the table where we have information and they don't even want to go to see what it is about because they see the word "HIV." I think it's because of the taboo.
I don't know if things have changed nowadays, but back in the day when I got infected we never talked about sex, we never talked about condoms, we never talked about anything. That's why I ended up getting infected. I think it's because they don't talk about it.
You think that talking about HIV is forcing people to speak about things that were formerly taboo?
Of course! Because then you have to talk about sex. Then you have to talk about behavior. Maybe my parents don't want to know; my mom never talked to me about sex.
What is the most important thing that HIV has taught you?
Wow. [laughs] You know, it turned my life upside down. I don't take anything for granted. I live like I'm a child. Every little thing -- yesterday I was walking on the beach and I saw a dolphin from far away. I'd never seen a dolphin in my life! [laughs] I looked like a little kid because I was so excited. Little things make my day.
So you're excited to be alive.
I'm excited even to wake up, yes.
Is that why you have two birthdays?
[laughs] When I was diagnosed I had to find a way to turn this horrible thing, this negative thing, into a positive. I had a choice: I could sit there and cry and let this thing eat me alive or I could just celebrate my life and beat it. That was my choice.
What would you advise somebody who was just diagnosed?
That's really hard to do. When I was diagnosed as HIV positive, a person that was positive came into the room and I didn't care what she was saying because it was not her, it was me. But I realized that there's hope. There's life after HIV. Your life doesn't stop. For me, my life began. I stopped smoking, I stopped drinking, I changed my life around.
It sounds like you grew up very quickly.
I had to. [laughs] Even though I like to act like I'm 18 -- that way I can try to look like I'm 18 -- I have to face life. The sooner you embrace it, the sooner you will really live life and enjoy it.
Because you had such bad experiences at the beginning, did you purposely seek out positive people?
Actually, no. After that happened to me at the beginning when I disclosed, everybody that I dated was negative until I moved here in 1999. The first person I dated was positive. Then after that they were all negative.
I was so fed up of disclosing and I was just tired of being rejected.
When I first moved to Florida, I remember I went to a women's group. The first thing this lady said was, "I've been diagnosed for a year, and I don't think I'm ever going to date again and I'm never going to have sex."
I remember I looked at her and I said, "No, you'll be OK. You watch, in another year you'll be fine." The next year she met someone and they're already living together. I said, "You see!" The person was negative.
There's hope. You're not HIV. You are you. You have a soul just like everyone else.
How does your connection to being religious help you in living with HIV?
I'm more spiritual than religious. I was raised Catholic but I learned other things when I moved here to Florida. I learned about reiki, which is energy, and Japanese healing techniques. That helped me to bring my T cells up and to be happy. I believe in God, because without Him I can't be here. That helps me to keep going.
What do you advise others to do about disclosing their status?
You've got to get to know the person at least a little bit and feel if it's worth it for you to tell them that you are positive. But if you are going to be intimate, then you definitely have to tell them you're positive. It depends on you. If you like this person and you think they're educated enough, you should tell them.
Well, you know, it depends on you. People notice here that I'm positive because of the kind of work I do, because I've done campaigns. They even have an intervention tool and I'm a participant on it. It's really cool. But if you were in a regular place and it's not necessary for you to disclose, why would you disclose?
I think some people mistakenly worry that it's their responsibility -- they're thinking, "What if I fall and I bleed or something?" They're not very knowledgeable about transmission, so they think, "Well, I should tell." What's your experience been?
I worked in the corporate world before I was with the [Miami-Dade County] Health Department and it was nothing related to HIV. I never told them because it has nothing to do [with my job] -- if I'm a receptionist, why am I going to tell them that I'm HIV positive? It's not like they're going to get it from the phone. You've got to educate yourself and know what type of risk you're putting people in. If you think you're putting people at risk, you should disclose it if that's what you want to do.
Thank you so much for talking with me.
This transcript has been edited for clarity.
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