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This Positive Life: An Interview With Bernadette Berzoza

September 15, 2011

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How did you tell your family?

I went to the lawyers and talked to them about a will. They said, "You and your husband need to talk about who you want to take your kids, because if you don't, they'll be warded to the state if you both die." My husband didn't want his family anywhere near our kids, because the majority of his family were drug users or alcoholics. We decided to ask my oldest brother, who had five kids who were already teens or young adults.

I called my family up and asked them all to come to my house. They had seen my husband getting sicker and sicker. I had confided in my sisters -- not my brothers or my mom -- that he was a drug user. They thought it was his drug use making him sick. He had had cancer when he was younger, at the base of his spinal cord, and it came back. Around that time he started getting sick from that. So I was telling people that he had cancer, to keep the secret.

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When everybody came over to my house, I said, "We need to talk to you. He's getting sicker, and this is what's wrong with him. He has HIV. I also have it."

They were in shock, I think. Slowly, after that, everybody reacted differently. It was hard on everybody in the beginning. They needed to be educated about HIV; they needed to understand it.

The first one was my younger sister, who's worked at Sisters. She said, "No matter what, I'm going to be by your side. I'll always be there with you, sister." She went through the class to educate herself and change her life -- because she was going down the same path I was on. She was living with someone who was using drugs. He was addicted to cocaine. It was a domestic violence situation, too. Her kids were babies, and it took a toll on her. The she told him about me, and he was very judgmental. He didn't want his kids around me, because he didn't know anything. He was afraid. She had to educate herself; she became a very strong advocate for women also.

To be able to tell them and clear the air was a relief. It was like a ton of bricks taken off me. I still wasn't ready to tell the world, because I still had young kids and I still knew that people were going to be judgmental.

As I continued to educate myself and become more aware, and go out and do this education for women, there was something in me that said, "Bernadette, you need to tell these women your story. You need to share with them what's going on in your life." I think a lot of women were thinking like me: "That's my life, I have to live it. It's not risky behavior."

I got sick in '94. I got thrush really bad, and it went into my esophagus. I got pneumonia. I wound up in the hospital and my T cells were at 10. I wasn't on any medication. In the hospital they tried to put me on AZT, and I got sick, sick, sick. I almost died. They did a resistance test. I was resistant to AZT. Now they tell people, if you and your partner are both infected, to still have protected sex, because you can reinfect each other. Nobody ever told me that. We were still having unprotected sex. I'd been infected with a type of HIV that was resistant to AZT, and I got sick. I became resistant to penicillin and amoxicillin, because that's what they treated him with when he would get opportunistic infections.

I've always been kind of chunky. For people to know me chunky, and see me go from being heavy to really skinny, scared everybody to death. I lost about 70 pounds in two months. I was wasting. That's when I got diagnosed with AIDS.

They put me on treatments. They tried all sorts of things. I can't remember what. I started to get better. As I got better, he got sicker. By the end of '94, the beginning of '95, he started to get sick more often. At that point, he was very determined to not live. He had seen what HIV/AIDS was doing to me, and he blamed himself. He was like, "I should die. I'm going to hell." I said, "You can't think like that, because you have kids. Be here for the kids." He tried really hard, but it started to take its toll on him and he started to give up. He wasn't fighting anymore. He died October 12, 1995.

We'd moved out of the housing projects and into a regular home, a little bit farther west than I had been living. I started working for the substance abuse program I had been doing outreach for. I started to go to school to become a substance abuse counselor. They paid for my classes. While I was doing all that, I was doing Sisters of Color. We ran the program voluntarily for all that time. We met once a week at the recreation center, and we did the classes.

A lot of people aren't able to come out and talk about their HIV status in public. What has given you the strength to do that?

One day I just said, "I'm not ashamed of who I am. I'm not HIV-Bernadette. I'm Bernadette, living with HIV. People need to see that." I'm not a bad person. We're not monsters. Not anybody living with HIV is a monster. We might all have different backgrounds, different ethnicities, different races, different genders, but we're all human beings. We deserve to be treated with dignity and respect. If I have to put that face on it -- I could be your aunt, your cousin, your best friend -- then that's what I have to do. For my community. That's why I came out publicly -- so people don't have to be interviewed 10 or 20 years from now about how dreadful it is living with HIV.

I've heard people say "Getting HIV has been a blessing." It hasn't been a blessing for me. It's been a reality check, and it's been a journey. But I wouldn't change it, because I've learned so much. I've met so many wonderful people. This is the journey that was meant to be; and when it's done, it's done.

This interview originally took place in June 2008, and has been revised, updated and edited for clarity. Additional reporting was provided by Olivia Ford, the community manager for TheBody.com and TheBodyPRO.com.

Send Bernadette an email.

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This article was provided by TheBody.com.
 
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