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This Positive Life: An Interview With Bernadette Berzoza

September 15, 2011

Lee en Español
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Did anybody reach out to you and offer you support?

No. I'm very stubborn. The outreach worker tried to introduce me to the programs that were available. I just said, "No. I don't need any help. I don't need anything."

He said, "Well, you need to go to the doctor." I told him, "I'm ashamed, I'm embarrassed." My fear came from the stigma of what HIV was, back then. People perceived it as happening to bad people -- "those" homosexuals, or "those" drug users. I was like, "Are they going to treat me bad because I love somebody like that?"

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There were a lot of things going on in my head. But I went to the doctor. The outreach worker took me to a community clinic near where I lived, where I'd gone for Pap smears and things like that. He introduced me to the social worker that was working there. She was a Latina. I told her what I'd found out. I think I was probably the first Latina that she knew with HIV at that time. She was very helpful to me, and she kept my secret.

At that point it was just my husband, myself, my family doctor and her, and the outreach worker that knew. I come from a very large family. I have two brothers and three sisters, and nieces, nephews and cousins.

What was it like keeping a secret from them?

It was hard, because it was like I was living a lie. I didn't want anybody to know, because I didn't know how they were going to react. I needed the support of my family because I was living in public housing. I was only working a part-time job. My mom helped me support my kids at that time, because my husband wasn't there most of the time. My family was very important to me. I didn't want them to push me away. I thought that's what they were going to do.

How was your health at this point? This was 1989 so they didn't have a viral load test back then, but did they give you a CD4 count test? How were you feeling?

They gave me a CD4 count. My CD4 count was in the 500s at that time. My doctor, not being an HIV specialist and not really knowing too much about it, said, "Come in once a year for your annual Pap smear, or if you're sick, with a cold or anything, you could come in for that and that's when we'll draw your blood and do your labs. If you have any other problems, just make an appointment and come in and see me." That's how I took care of my health, for the first, probably, three years that I was positive.

Toward the end of 1990 was when I kind of came out of that fog. I started to realize that I actually needed to do something -- research HIV, or find out what I could about it. I started going to the library. I made it an outing for my kids -- taking them to the library so they could check out books and in the meantime I would go and secretly look for articles or whatever I could about HIV and AIDS, without anybody knowing that's what I was doing.

I remember reading that bleach kills the virus. I wasn't really sure about transmission, so I was fearful that I could get my kids sick. My house was probably the cleanest in the housing project, because I bleached everything, every day. People used to come by my house and they'd be like, "Bernadette is cleaning again, because you can smell the bleach down the walkway." It's funny now, but back then it was my survival mode, for myself and my kids.

It took me to the point where I prayed. I asked God: "Help me. I don't want to die. I need to be here for my kids. Send me somebody; I need something." It happened to be about a week later that they were passing out fliers in my housing complex, for a program for young kids to come and do prevention awareness. By then my son was going to be 6 and my daughter was going to be 5. So I took them and I asked the person there, "Is it OK if I sit in the group with you?" He said, "It's really for young kids, but sure, you're welcome." They did gang prevention messages, substance abuse, no smoking, what alcohol does, stuff like that. I got to know the person that was doing the prevention stuff, and I started to come to the program. It was a substance abuse program that had moved into the projects where I was living, and they were doing all this education and treatment for the people that lived there. While I didn't need any treatment, I was still with an IV drug user.

At that point, in 1990, my husband had 0 T cells. He didn't start getting care until about '91. He was still out using and running around. Then toward the end of '91 he started to get sick. He got thrush; he had pneumonia. They had him on AZT (Retrovir, zidovudine). He would go into the hospital, they'd take care of him, he'd get out and then he wouldn't keep going to his doctors' appointments, so he would get sick again. He was getting sick a lot.

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