This Positive Life: An Interview with Efrain Carrasquillo

Welcome to This Positive Life! We have with us Efrain Carrasquillo. In 1990, like most of society, Efrain, then 25 years old, believed that HIV was not a heterosexual man's issue -- until he tested positive. Because stigma was so staunch, he only disclosed to his immediate family, refused to date and lived in silence about his diagnosis for five years. It wasn't until 1995 that he found the courage to disclose to others. And once he did, his life completely turned around for the better. This Bronx native talks about the importance of having a strong support system; how HIV/AIDS work changed his life; and how his wife and her children have given him the family that he never thought he would have.

Welcome to This Positive Life. I am Kellee Terrell reporting live for TheBody.com and today I have with me Efrain Carrasquillo.

Excellent, excellent.

Thank you for taking time out of your schedule to speak with me. So let's get started. Can you describe the moment that you found out that you were positive and when was it?

April 11, 1990. [Sighs] Yeah I still take a deep breath when I remember that date. I was 25 years old and at that point in time in my life, I was really looking forward to having kids. Having a son, to carry on the last name. Or I would have been very happy with a daughter -- don't get me wrong. But unfortunately that was not the case.

In the 90s there was a high level of stigma going around as it related to HIV/AIDS. So, back when I was told by the counselor, the only thing I remember is standing up and was looking up to the sky and saying, "Wow, I can't have kids."

Wow.

That's all that came into my mind. I mean don't get me wrong, I was numb, like shocked. It was one of the worst days of my life -- I need to say that. I am not going to say that it was easy.

Why did you get tested?

That's a good one. I was with some friends, I wasn't going to get tested, and I was just going to support.

So you were just showing up?

Yep, I was at the right place at the right time. Yes, I will say that. So the counselor mentioned that if you have had sex with men, unprotected sex, get tested. If you have had unprotected sex with women, get tested. And that rang a bell, because I was like, "OK, yeah," because that was usually my experience back then.

Unprotected sex with women?

Unprotected sex with women, yes. So I said, "You know what? What can I lose by getting the HIV test?"

And had you known anyone who was positive at that point?

At that point in time? No. I just say that I truly believe that I was going to come back negative. So I said, "Let me get that paper saying that I am negative." So that was not the case. So in two weeks I went back ...

And this was before rapid testing ...

Before rapid testing, the AZT era. When I went back, they called me in and they told me the results that I was positive. And I had 500 T-cells left.

So you went back to get your results ...

"I was numb, like shocked. It was one of the worst days of my life -- I need to say that. I am not going to say that it was easy."

Yes, and the only thing I remember was standing up out of my chair looking up to the sky saying to myself, "Wow, I can't have kids." It's almost half my life.

So you said that when you got tested, your CD4s were ...

So how long did they think that you had been living with HIV?

I would say that at least at the minimum 3-4 years.

Wow.

Because I was a late tester. I wouldn't say late-late, but 503 can speak for itself.

And so during those earlier years had you ever thought...had you ever had a symptom? Did you ever feel run down or have the flu?

No, I just got tested.

And so what happened after you got your results?

My life changed.

Tell me what that means.

My life changed. I was living every day, looking to see if I had lost weight. I was ignorant, I didn't know much. The only thing that I had heard was people were dying within 6 months. So I was waiting to die in 6 months. Don't get me wrong, I had stopped eating, I didn't want to wake up. I would look at myself in the mirror; weigh myself, expecting that to be the process of death.

And who did you tell?

No one.

You didn't tell anyone?

No and I didn't date either.

People didn't notice that you ...

I was just trying to be neutral to my best ability. I told my mother about a year later.

What did she say?

I don't know. She was in denial because I didn't have the "appearance." I weighed 190, I ate like normal. You know they say that "AIDS doesn't have a face."

So you weren't disclosing to anyone, were you seeking any type of support? Support groups?

No, no. I didn't dare talk to anyone. I didn't know anything about support groups and HIV; I just tried to live life. I was on medications though, I was on AZT. I had a doctor, but I was so discreet. I would take my AZT, but really really on the low, I didn't want anyone to know about that part of my life. After a year, just my mom.

So were you lonely?

Yes. Very much so. But what kept me occupied was my love for sports. I am a chess player. I tried to utilize different venues to avoid that feeling of loneliness. I would flirt once in a while to see if I was still looked at that age by women. But I wouldn't proceed.

That's like your prime.

Yes, it was very hard for me. I found out the very basics of transmission. Oh, so you can't get it from dancing. So I just continued to dance, but I wouldn't take it any further than that.

And so what was the turning point where this changed?

So five years later?

Five years later. I was 30 years old.

So between 25-30, had you disclosed to anyone other than your mother?

My immediate family.

What did they say?

They accepted me. That helped a whole lot. I didn't share that with any of my friends.

So when you turned 30, what happened?

" I was tired of living in the closet with this HIV virus. And, I just shared with a couple of people, who are not positive, and they accepted me, for who I am."

I moved to Albany, upstate New York. I had friend there, I met people. And I said, "You know what, let me take a chance." I guess I built up enough esteem and courage to disclose in 1995. I was tired of living in the closet with this HIV virus. And, I just shared with a couple of people, who are not positive, and they accepted me, for who I am.

They said, "Efrain listen, there are people walking around with cancer, syphilis, one leg, blind, you're a friend, we accept you for who you are." I remember the swelling up in my throat, my eyes got watery, I wanted to cry, and I remember that day with my friends. They embraced me; they made me feel part of.

Was it like a huge weight had been relief?

It was like a thousand pounds had been lifted from me.

Did your CD4s go up after that? They say this whole thing that if you disclose it helps your CD4s go up.

I don't know for sure, but I will tell you one thing. I started to get more involved. I was working at the Ramada Inn as a waiter and bartender during the night. During the day, at my clinic, the Whitney Young Clinic, I decided to take 8 hours of HIV peer training. They then sent me to training for the department of health. I actually have my first certificate here in my drawer as we speak. Yeah I have it right here. [Fumbles through desk]

Ah ha! 1995, department of health.

I hope you are in the right position where the camera was before. [laughs]

Ha! So that gave me a sense of empowerment. To know that I can't transmit this through saliva, sweat ...

So had you met people who thought that's how the disease was transmitted? Through saliva, sweating, kissing and hugs?

I met many people who have said, "Efrain, if someone with HIV comes over, they have to eat off a paper plate or cup." "Wow, you would, well I'm here to let you know." And a lot of people don't even know their status. I was wondering "Did he know his status?" in my mind.

Yeah, most people don't. Well I don't want to say most, not enough people know their status.

So true ... so 1995 was a big year, a turning point in my life living with the virus.

And so once you got your certificate, what did you start doing with that?

I did peer-education work, passing out condoms, brochures up in Albany. I remember my mentor, Harry Davis -- wonderful human being. He was my first mentor and my case manager at the time -- the one who gave me my first 8-hour training.

So when you got to Albany you felt more confident. Had you ever gone to support groups?

"I came back to the Bronx and felt more empowered. But I also knew that this was the type of work that I always wanted to do, and noticed that helping others \[helped\] me."

I sat in a couple support groups there. What had happened there at that clinic, I met a lot of other people who were positive. That was my first connection.

And so how long did you stay in Albany?

A year.

And so after that year was up, did you move back here?

Yeah, in 96 /97 I moved back here to the Bronx. I was in Albany for like a year and a half.

And so you came back and started a new life.

Yes, I came back to the Bronx and felt more empowered. But I also knew that this was the type of work that I always wanted to do, and noticed that helping others gave me the sense of ... it was helping me. It really helped me to deal and cope with the virus.

So do you know who ...

No, like I say, I pray many nights about that for that person. I don't know who. I was into dancing at a level, I was in the clubs.

You were young, that's what young people do...

Yes. Yes. That's what I was doing and unfortunately, I thought that HIV ... I was very ignorant at the time. At that age I was ignorant. I didn't know that heterosexual men could get it.

Well, it was 1990. The media was saying that if you were gay, or an IV drug user...

Or Haitian ...

There weren't really that many warnings for heterosexuals saying that this is something that you should be concerned about. So, even now. As much as things have changed, they really haven't. There are still a lot of straight men who just don't think that this has anything to do with that. I know you know that from the work that you do. So I wanted to jump back: You said this is the work that I want to do. You started where?

I got involved with United Bronx Parents.

And so tell me about United Bronx Parents?

I got involved with the Peer Training Institute 1997/1998. It was 6-month training; it was my first experience with hands-on training, not just one day a week. Ongoing training that taught me enhanced outreach skills, all level of HIV work, pre-case management, prevention ...

And the people. The love that I felt here in 1997 was amazing. The connection, the spirit, the energy. I said, "Wow, what an experience. This is I exactly what I want to do."

And given the location, which is the South Bronx, HIV/AIDS rates in this area are very high. And so when you first started working for United Bronx Parents, what kind of job did you have?

No, in my case this is where I did my training, but I worked at other places elsewhere. I came back to United Bronx Parents as an employee here actually in February, this year.

Wow, really? That's like 13 years later.

Yeah, in 13 years I've done a lot of work in the field.

What are some of the things that you have done in 13 years?

Oh my God: Testing, case management, substance abuse counseling, peer training, coordinating, program manager stuff, and here I am now, Director of COBRA Case management of HIV services.

And so what has changed in HIV from 1997 to 2011? Of course there are antiretrovirals that have saved people's lives. We know that certain populations have certain barriers accessing those drugs; we know that people of color, working class people and people living below the poverty line have barriers to getting tested, things like that. What's changed and what's hasn't?

"There are still some ignorant individuals out there that still look at AIDS as 'the monster,' total ignorance. That hasn't changed."

Well let's start with what hasn't. Stigma hasn't changed. There are still some ignorant individuals out there that still look at AIDS as "the monster," total ignorance. That hasn't changed. What has changed is that there is more education, prevention education. There is still advocacy going on, maybe not at the level that it used to be. I've noticed that too. But there is a level of unity in the HIV community that is emerging.

What are some of the barriers in the Latino community? There are certain cultural specific barriers in the African-American community, what are some in the Latino community that you have noticed?

Barriers, I will always look at culture as a main barrier -- access to care. For a woman, being in the Latino communityand it still happens, not as much as it used to, but there is something called machismo versus marianismo.

Explain that.

Marianismo is the submissive person, Machismo is the dominant person. The roles can be switched: The woman can be the machisma and the man can be submissive. However, with the Latino culture, especially 30-40 years ago ...

Do you find that gender oppression puts Latinas at risk? Let's just say you have a client who depends on a man to pay her rent and take care of her kids ...

Of course that plays a role. We flipped around the man too. If a woman says that she wants to use a condom, the man could flip it and say, "Oh so you are playing me dirty." Of course there is a problem there. It's the old school way of thinking. That needs to be improved.

With so much emphasis on AIDS being a black disease and AIDS being a gay disease, do you feel that Latinos get left out of a conversation about HIV/AIDS? They don't have the worst numbers ...

We are almost there; we are second. But what happens is that I think that, my perception is that people will include Latinos in the community of color, instead of separating it. All inclusive, people of color.

Do you think that's dangerous? Have you come across Latinos who don't think that AIDS is their problem? That AIDS is a Latino disease?

No.

That's good.

No that would be unusual. The people who I speak to know that it's a problem.

Sometimes I even feel like, "Am I doing enough Latino coverage?" Because I think there is something special and unique to focus and when I look at Latino media coverage, I don't see as much AIDS as I would like ...

"I don't see as much heterosexual men in that media. I am a stepfather. Where are the stories about heterosexual men raising kids?"

And I don't see as much heterosexual men in that media. I am a stepfather. Where are the stories about heterosexual men raising kids?

Well that could be your story. You could be the story. Let's shift gears for a second and let's talk about your family and talk about your wife and your stepchildren. So you had said earlier in the interview that when you first tested positive you didn't think you would ever be a father. Did you ever think that you were ever going to fall in love?

No.

So when did you start dating?

I started dating in 1997.

Kind of around the time that you disclosed.

Yes and people accepted me, and for the last seven years, I have been with one person. My wife. And I am a stepfather. It's amazing and great.

So where did you meet your wife?

At a conference in 2004. It was the Latino Commission on AIDS Conference.

Cool. So you spotted her across a room...How were you introduced?

"For the last seven years, I have been with one person. My wife. And I am a stepfather. It's amazing and great."

What happened was that I went into the workshop late and she told me, "Hey you, for the price of admission, tell me your name, the agency you work for and what you want to get out of this workshop." And this woman just put me on the spot here. I look around and I see just one man and about 50 women.

I had mixed feelings, but I also said to myself, "Wow, she is beautiful." Anyway, so that's how we met.

Is your wife positive as well?

Uh, yes ...

And so had you ever dated a positive woman prior to your wife?

No.

And how is it different than being with someone who is negative?

That I am in love with her. That's the difference. Other than that, we take our meds; we live our life just like everyone else. Of course, we have to watch our diet and take our medication as prescribed.

Do you feel like you guys each other's cheerleaders?

Yes, we have a great relationship.

And so what was it like? Was this the light bulb that went off, "This is who I want to marry."

We got engaged after like two months of dating. August 6, 2005. I am not good with dates here.

How long have you been together?

Six years.

How long after you got engaged, did you get married?

March of '06.

Oh ok, so pretty quickly. So what is it like being a stepfather?

Rewarding, very challenging.

How old is your step-daughter?

She is 20 now, the other one is 32. I am a step grandfather too, one who is Papa Bear. The baby, he is going to be a year old next week.

And so when you are sitting at the table with your family, looking back to 1995, how does it make you feel?

I get overwhelmed at times. But I am grateful and appreciative.

You are very blessed.

I agree with you, 100 percent.

And so your family supports your work of course, and so, tell me about what you do right now?

I am the director of COBRA services.

And can you tell me what that is?

The services we offer are based on comprehensive case management that are based on referrals as needed to housing, pantries, food and clothing. Medical is number one, treatment adherence, case management. Advocacy, housing entitlements.

This is huge in New York.

Yes, this is huge in New York. This new law that came about where individuals have to pay half of their broker's fee, I don't understand how people are supposed to get by.

Broker's fees are so expensive. For people who don't live in New York, and that doesn't mean that you don't know what a broker's fee is, but in New York, the broker's fee could be 2 times, 3 times what the rent is, and for people who are living off of HASA and cannot afford to pay their rent by themselves, how are they going to be able to afford the broker's fee?

How are you going to be able to afford $550?

And that's just the minimum. And that's just not plausible.

How can that happen?

Hopefully, more advocacy will happen around this issue.

Yes, more advocacy. Perhaps we need to knock on Cuomo's door.

So you deal with HASA, what are some other things that your clients come to you guys for?

Medical, legal -- that's a biggie. Going to hearings with clients. There are free legal services for people living with HIV/AIDS. Education.

How grateful are your clients for this organization?

Very grateful I would say. UBP has been around since the '60s.

So why is this something that you find that you have to do?

Because it's in my heart.

It's that simple.

It's in my heart and I love what I do.

How is your health?

Good! Good! My last CD4s count went up ...

YAY!

So it's not going down, I am on a new regimen now and it's working it.

What are some of the difficulties of adhering to medication?

One for sure is the thought that for the rest of my life I am going to have to take meds. I guess that's one area, you can't tell yourself, "I only want to take meds for the next 6 months." You can't do that. That is not the case. You can grow resistant.

So that keeps you motivated to adhere?

That keeps me motivated and all together my health is good and I don't want to lose my health. And I love myself like that.

And you want to keep it that way ...

Yes, I want to maintain.

What else do you guys to do? I know that you said you guys are eating healthier, are you guys working out?

We dance a lot. We are salsa dancers -- she is my partner. We hustle, freestyle, you know back in the '80s. [Laughs] We play softball; my wife is a heck of a right-fielder. We do a lot of things. We go to the Village and just walk around.

So you are just active?

Yes, we are very active. We also like going to the beach. I love the water, that doesn't mean I am swimming in it. [Laughs]

What advice would you give to anyone who is newly diagnosed?

"It's not about how you die that counts; it's how I lived that matters. And I want that to be really remembered…I'm 46 years -- old, I am still here."

That we can live today. It's not about how you die that counts; it's how I lived that matters. And I want that to be really remembered. There are people who have been living with AIDS since 10, 12, World Trade Center, tsunami, victims. I'm 46 years -- old, I am still here.

I might not even die to complications of HIV/AIDS -- I might die of something else, natural causes.

What would you say to the straight men who think that this has nothing to do with them?

GET TESTED.

It's how you can get straight men involved in a conversation about HIV, when media and society keeps saying that it's either the down low disease or a gay disease. It's very difficult to crack that egg open.

Society will look at it like, "Oh yeah the man says he is straight, but has he been with a guy, once or twice?"

So the advice is to get tested?

Yes. Very much so.

And use condoms.

Yes.

"My work is a big reason in keeping me alive. It's keeps me going, day to day, when the chips are down and I am feeling bummed."

That's really the key. I think a lot of straight men don't think that HIV/AIDS is their issue, so they don't get tested and they don't use condoms because they don't think this is their issue.

Absolutely, and if you are straight and you are married and you stray outside of your relationship, please use condoms with your wife and with others. We come out of a womb, we have to respect women. We have to have that integrity.

If there was one last thing that you want for the viewer to know about you, what would it be?

My work is a big reason in keeping me alive. It's keeps me going, day to day, when the chips are down and I am feeling bummed. Besides the support from my wife, my family and friends, my work in the community keeps me at bay.

And with that, we are going to end this interview.

This transcript has been lightly edited for clarity.