September 15, 2011
"There was something in me that said, 'You need to tell these women your story,'" Bernadette Berzoza remembers. "I think a lot of women were thinking like me: 'That's my life, I have to live it. It's not risky behavior.'" Today Bernadette volunteers helping people newly diagnosed with HIV navigate the health care system. She co-founded an HIV and health education organization, still in existence, for women of color in the Denver area. She's got two grown and thriving kids, three beautiful granddaughters and a loving, supportive partner who is HIV negative. It's a far cry from the years following her 1989 HIV diagnosis, when she told barely anyone her secret. Here, Bernadette shares her journey from silence, shame and abuse to public speaking, advocacy and self-care.
Can you tell me the story of how you found out you were HIV positive?
It was in September 1989. At the time I was living in the project housing development in West Denver. I had a 3-year-old daughter and my son was 4. My husband came home and he had someone with him. He said, "I really need to talk to you. You need to sit down. We need to talk." My husband introduced the person that was with him as an outreach worker for a program here in Denver, called Project Safe; he did outreach and HIV testing for IV drug users.
My husband said, "I did the test a year ago, and, I never went back for the results." I was like, "So, is that why the woman from the Department of Health kept calling and trying to contact you?" I'd given him the messages but I hadn't known if he'd followed through. Finally I gave them the number to where he stayed when he visited his father. That's where they contacted him, apparently, and told him he that he was HIV positive. It took them a year to track him down.
He told me he'd tested positive for HIV, and I needed to be tested. In my world, HIV was foreign. I had heard about it, but I always assumed, like everybody else, it was a gay disease, and I didn't have to worry about it. My first thought was, "I'm not gay. And I don't do drugs. And I'm not sleeping with a lot of people. So, what do you mean?"
The outreach worker said, "You need to get tested, because you're still sexually active with him and he could have transmitted it to you." I didn't want to hear it. I was like, "No, no, this isn't happening. No!" I got very defensive.
I had found out probably about two to three years prior that he was using drugs. He was shooting heroin. When I met him I was 19 years old. I got with him when I was right out of high school. We dated for about 11 months. Before we could get married, I was pregnant. So he was my partner, and I wasn't with anyone else.
It was a good relationship at the beginning; then it started to take over my identity. Now I can say it was domestic violence, spousal abuse; but back then, to me it was love. He loved me so much that he didn't want me hanging around with family. He wanted me home. I thought that was part of a relationship. All he had to do was say, "I love you," and everything was fine. When I found out he was shooting drugs, I accepted it.
He'd come home after he'd be drinking. I'd get smacked, he'd pull my hair; but then the next day everything was OK. Then it started getting worse. By the time I had my second child I got beat up a lot. There was fear in me of questioning anything he was doing, because if I questioned it, I got hit. So I learned to act like everything was OK.
He never held a job. I was the one that worked and took care of the kids. He would come and go as he pleased. He would be gone for weeks. I lived this life for a long time. I never questioned anything that he did, until that September day, when he came and told me that he was HIV positive.
Finally they convinced me to get tested. I took an anonymous test and it came back positive. I told them, "Nope, I'm not positive. I want another test." A month later, I finally got the second test. The counselor that was doing the test wasn't very comforting. He was matter-of-fact: "Why did you come for a second test if your first test told you you were positive?" I said, "Because I don't think I'm positive." He said, "Well, you are positive. Here are some pamphlets that explain what HIV is. If you have children you need to make arrangements, because you might have a year or two to live. Thank you. Have a nice day."
At that point, everything faded to black. I know I walked out of the room, and I saw him, and I hit him. I said, "They just told me I'm going to die. What's going on here?" I went home and I grabbed my babies and I said, "How did this happen? How did I get here?"
Then the shame kicked in: "What did I do wrong? What are people going to think of me?" It was ugly. It was terrible. For the first year after I found out, I was in denial.
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?"
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.
Did you ever get your kids tested?
Yes I did. Him being at 0 T cells so soon and my T cells being lower, they figured that I had contracted it sooner than '89. So I had to take them in to get tested. Both of them are negative.
At one point he beat me up really bad. I was knocked out and when I came to the paramedics were in the house. I looked over and saw my son getting a paper towel, going to clean the blood, and I screamed, "Don't let him touch my blood!"
Everybody stopped. They said, "Why? What's wrong? What do you mean?" I said, "I'm HIV positive." They grabbed him, and they put these gloves on, and masks. It was terrible. That was the first time I had said it out loud, in the air. I had already known for about three years.
How did you get out of this terrible situation with your husband?
My angel came. [laughs] I started doing outreach for the substance abuse program, trying to get other kids and families in my housing development involved in it. I believed it was very important information for the kids to know, but it was more important for the women to know. I knew what was going on in my house was going on in other houses. A lot of the women there lived the same kind of lifestyle I was living: Some of them had partners that were in prison, or in and out of their households. There was a lot of violence, substance abuse, drug use, alcoholism.
One day I was introduced to a woman, Belinda Garcia, who had lived in West Denver; she had gone on to college and gotten her master's degree. She was a substance abuse counselor. She had all this education, but she came back to the community because she was worried that HIV was going to start to affect women.
When we met, she said, "I have some information that I want to share with women around HIV." Again, I was still undercover. I said, "I can do some outreach for you."
We made this flier and it said, "Come learn about AIDS." I started knocking on doors. People that I knew were like, "What's wrong with you? What are you doing this for? We don't need to know about this." I was like, "Well, that didn't work. How am I going to get people there?"
What I did was, the women that lived in the same area where I lived, I talked to each one of them individually. I said, "Let's go meet this woman and find out some of this information. If not then we'll just beat her up, or throw her out of the neighborhood." [laughs] I was young back then, and feisty. Those were my friends, my girls, and so of course they agreed.
There had been other programs that acted like they were coming in to fix us, like we were messed up and broken, the "bad people" in society. That's how I always perceived programs that were coming to the housing development. But Belinda didn't say, "I'm So-and-So and I have a master's." She introduced herself: "I'm Belinda, and I'm from the West Side. I grew up over here and I know people over there. My cousins are these people, and my grandma and grandpa " She really told us who she was, where she came from. That opened the door for all of us to be able to be who we were.
We weren't used to talking to strangers about our bodies, and what we do. But the way she did it was so non-threatening and so respectful that before we knew it we were telling her everything. A genuine caring came from her.
We went through the program, which was basic education and awareness of your body, your psychosocial development, what messages you got growing up, how you interpret all that stuff and how it makes you feel and think and react. We learned what our risk factors were for STDs [sexually transmitted diseases], HIV, substance abuse and domestic violence. But for us that was life; we lived it every day. We'd never seen it as a risk.
I grew up with my mom and dad. My dad passed away when I was 12 years old. They might have fought and argued, but every morning when I got up to go to school, my mom and dad were right there together. I learned, non-verbally, to keep secrets. What happens in our home stays in our home. You don't tell people out there.
When I started understanding all those dynamics I thought, "I can't let my kids grow up and live this kind of life. I don't want my daughter to be in a domestic violence relationship and put up with all kinds of bad things and then end up HIV positive. I don't want my son to be a drug user and hurt women." So I had to make it stop. I had to make a decision.
After we'd gone through all these classes, Belinda said, "I'm done. You have all this information. Go out and share it with people you know." I said, "Can't you keep coming? I'll do all the outreach. I'll bring more women. I know women need it. I know my cousins need it. I know some of my friends need it. I have sisters. I have nieces." That's how Sisters of Color United for Education was born.
This same group of women that you first brought to meet this prevention worker ended up starting this organization to reach out to women of color in your area?
During that time my husband was getting sick a lot more. This was around '92 now. One day Belinda said, "Are you OK, Bernadette?" I said, "No." I just broke down and started crying. I said, "My husband is HIV positive. But I'm not." She said, "OK. What do you need from me? Is there anything I can help you with?" She got up off the chair and she hugged me. I think at that time, that's all I needed. I needed to see that, even though I had this dreaded disease that everyone was saying was so bad, and only bad people got, that I could still get some affection or some care or concern from somebody else. After that I was able to confide in her.
Did you disclose to her?
I'd told her about him; and then maybe a week or so later I told her, "I have it too." She said, "I know you do. But that's OK. I'm here to help you." She was the very first person I disclosed to and told.
It was almost three years after you were diagnosed?
Yes. She's the one that helped me start taking care of all the things I needed to take care of. Because I knew I was getting sick. I wasn't taking any medications or anything.
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.
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.