This Positive Life: An Interview With Brenda Chambers

Welcome to This Positive Life Video Series! We have with us, Brenda Chambers, the HIV Program Specialist at the Indian Walk-In Center in Salt Lake City, Utah. Brenda Chambers, 47, embodies the term "survivor." This mother of four, recovering crystal meth addict and sexual abuse survivor did not allow for her 2003 HIV diagnosis to stop her from living. In fact, she used it as a means to stop using drugs, regain custody of her children and become an AIDS activist.

When was the first time you found out that you had HIV?

Well, it was July 1, 2003. Someone had given me a ride from my boyfriend's house. And they had asked me, "Well, did you use condoms with him?" And I'm like, "No." And he said, "Well, I didn't either, and guess what? I have HIV." So, he didn't disclose that my boyfriend had HIV; he just disclosed that he did, and that he was having sex with my boyfriend.

So this was a man who was having sex with another man, who you thought was your boyfriend.

Right.

Did you think he was monogamous?

I did, because he told me he was.

Where did you go get tested?

Salt Lake Valley Health Department actually was doing testing in the jail, because I was a substance abuser for years. I never used injection drugs, so I did not get it from injection drugs. I only was with the guys that I was with at that time, and had been with the guy for two-and-a-half years.

And what sort of substances were you using?

Mostly alcohol, but towards the end there it was meth. Meth kind of kicked my butt. But I've been clean from meth since just before my diagnosis.

What year was this?

And so what was the first thing that you did after you found out that you had HIV?

"It wasn't until I went to an HIV-positive women's retreat that I saw positive women, living positively. There was one lady there that was an advocate and she really inspired me. I could see she had had it for 20 years, and she was still out there, fighting. For me, it was very inspirational, because I could see that there is a life beyond being told that you've got HIV."

At first, all I could do is feel sorry for myself. I wrote letters to my family, saying, you know, "This is what's going on. I'm sorry for everything I've done," because I thought I was dying. And I thought that I might never see them.

It wasn't until I went to an HIV-positive women's retreat that I saw positive women, living positively. There was one lady there that was an advocate and she really inspired me. I could see she had had it for 20 years, and she was still out there, fighting. For me, it was very inspirational, because I could see that there is a life beyond being told that you've got HIV.

Were you living with your boyfriend?

No, I lived with my family, and saw him.

Did you ever confront him?

I did that night. But at the time, I was using meth and I was high. And when I asked him, he said, "Oh, no I got tested when my son was born two years ago." But he didn't tell me what the results were, and I didn't ask that.

So he never acknowledged infecting you.

He did, a couple years later. The thing about it is, instead of being angry for a long time about it, someone told me that forgiveness is more about me than it is about the other person. And so it took some work, but I forgave him, and we even talk now.

So what did you know about HIV when you got diagnosed?

"I take my medicine at night, so if there are side effects, I sleep through it. It's amazing because I not only work full time but I'm a half-time student. So I go from around 7:30 in the morning to about 10:30 at night. It doesn't have to stop you from living."

All I knew was I hung around with gay friends for years; so I watched them take a lot of pills and be really sick. And so that was the image that I had in my mind. And even when they wanted me to start meds, I was all freaked out, and e-mailed all the girls from my retreat. And they e-mailed me back, saying, "Now, it's nothing. It's nothing like it used to be."

I found that to be true. My side effects are very minimal. Actually, I take my medicine at night, so if there are side effects, I sleep through it.

It's amazing because I not only work full time but I'm a half-time student. So I go from around 7:30 in the morning to about 10:30 at night. It doesn't have to stop you from living. It actually gave me a new lease on life, because it made me realize that I wanted to be clean and sober so that I would not be existing in a fog. Because that's what I was when I was using substances -- I was just in a fog. I hadn't lived any life. So it wasn't taking a life away from me; it was giving me a life, in a way.

At the time, I didn't even really comprehend that. But I had started in a spiritual path, so I asked for help with dealing with it. Because dealing with anything without the use of drugs and alcohol, I didn't know how to do.

But I had some really good examples of how to stay sober. The lady who came into the jail and did the testing and gave me my results was also there when I got out, and she helped me become an HIV tester and counselor. And that's how I ended up working in the field. She was like, "I think you can get a message out there to women that it doesn't have to be the way it is." And so it started me on this road.

So what's your background? Are you originally from Utah?

I was born in Texas, but my dad and his friends robbed a federal bank, so they went to federal prison, and my mom moved back up here, where her family was. And so I was about 9, I think, maybe 10, when I moved to Utah.

"There was not only substance abuse, there was physical and sexual abuse. That's something I've found that kind of has a little string in a lot of the women that I know that are positive -- that they've had either physical or emotional or sexual abuse in their backgrounds."

So you had a rough childhood.

Yeah. My dad was an alcoholic, and so we were raised in . . . yeah. It was a different kind of an atmosphere. I didn't realize that it was different until later on in life -- that it wasn't a normal way of life. And there was not only substance abuse, there was physical and sexual abuse. That's something I've found that kind of has a little string in a lot of the women that I know that are positive -- that they've had either physical or emotional or sexual abuse in their backgrounds.

Were you sexually abused when you were young?

I was, by several different men.

Were they all relatives?

Some of them were my dad's friends, and some of them were relatives.

And so did you enter therapy?

I did. Well, actually, I went through Odyssey House.

So that's a drug treatment center.

It is. It's a nationwide drug treatment center. And I actually am doing my internship for social work there, so I get to use what I learned to help others.

So you're going to school for social work now?

I am. I am. It was something that, when I was in high school, I wanted to do. But at 16, I had twins, and so after that I was 23 when I had my daughter, and 29 when I had my son. And so I was a full-time mom, a full-time worker. I didn't have time for anything like that. Now that my kids have grown, I get to go back to school and do the things I want to do.

So what happened to your kids during the time that you were using?

I still had them up until about . . . well, I guess it would have been 1998. And they took my son from me, my youngest son. And my daughter had been in and out of foster care, because she kept running away from home. And my oldest son had taken care of all the rest of the kids. So basically, it was him that was the parent. And just recently, he's let me back into his life, which has been really kind of cool, but . . . .

How old is he now?

He's 29, and going through a divorce. I actually moved in with him last month to help him with my grandkids. And so I get a chance to kind of make up for some of the things that he went through as a child.

So it must be great to be with your grandkids.

Oh, yes. I love it. I love it. My grandkids are awesome.

How old are they?

I have one that's 10, one that's seven, one that's almost five -- he's going to school this next year -- one that's four, and one that's three, and one on the way.

Wow. So you have a big family.

I do have a big family.

Have you found love since you tested positive?

You know, I was in a relationship with somebody. It was a long distance relationship for three years.

Another positive person?

Uh-huh.

Where did you meet that person?

On HIVNET. And it worked well for me at the time, but I've done a lot of changing and growing over the last six years, and I kind of outgrew him. And it was really hard, because the long distance thing; I had come out . . . he actually lives just north of here, about 50 miles north of here. And I saw him while I've been here, but there was no spark there now. But, yeah, it was great.

And I found that after trying to date somebody for about three months and then telling them that I had HIV, that that didn't work out so well.

Meaning, HIV-negative people?

Right.

So what happened when you did it?

He was like, "Oh, that's no problem." But I didn't hear from him. It was just like, uh . . .. And so I shot him an e-mail, saying, "OK, you know what? At least have the respect for me to say, 'You know what? Maybe it's not OK with me.' And that's all right. It's OK if it's not OK with you." Because I don't know if I were a negative person, whether I would want to be with someone positive, even if I got to know them. And I understood. But it still hurts.

So I decided I'm just not going to date any negatives. I'm going to stay with dating positives -- which is hard, because there's not all that many straight men out there that are positive.

Where do you work now?

I work at the Indian Walk-In Center. So I get to do HIV prevention and education for Indians all over the state. It's a big deal that they trust me with their sexual secrets, basically. I'm very honored that they allow me into their . . . I mean, they've allowed me onto their reservations, and they treat me very well. But it's not the norm for a white person to be treated well by Indians when they're doing something as sensitive as sexuality. So I know I've just been really blessed, all throughout. Ever since I was diagnosed, things . . .. Pretty much, I keep walking, and things kind of lay down right in front of me and I just have to walk. I don't have to do . . .. It doesn't seem like it's hard work, but nothing's as hard as it was when I was out there using.

Did you tell your family about your diagnosis soon after you were diagnosed?

As soon as I . . . well, yeah. I wrote them letters saying, "I just found out I have HIV. And I'm sorry for everything I've ever done to you." Because, like I said, I thought I was dying.

And what was their response?

They were all scared.

That you were going to die?

Right. And my daughter, still, if I get a sniffle or anything, she's like, "Oh, no, Mom." I'm like, "I'm fine." I mean, I get sick like everybody else.

Do they understand the facts about HIV?

"I do have to admit that, like, at conferences like this, where they have the AIDS quilt, it hits me, and it makes me a little sad. But in so many ways, it enriched my life."

Yeah, they do. And my daughter, in fact, she's become a real advocate of using condoms and dental dams and female condoms.

Don't you get sick of dealing with HIV? I mean, you live with HIV; you talk about HIV all day.

I don't think about the fact that I've got it very often. I do have to admit that, like, at conferences like this, where they have the AIDS quilt, it hits me, and it makes me a little sad. But in so many ways, it enriched my life. I know that sounds really weird. And people think it's kind of weird. But it gave me a purpose.

And so are you a religious or spiritual person?

I'm very spiritual.

And how do you use that to help you?

"I pray every morning and every night. I have found compassion for others through my spirituality. But I have found that everybody I know that is living with HIV -- most of them do find a spirituality."

Well, because I believe that nothing happens by mistake. And I believe that we're given hints in life. Sometimes it takes really big hints. I like to call it, like, getting hit upside the head with a two-by-four finally. OK, wake up! You've got a problem. You need to do something about it.

I pray every morning and every night. I have found compassion for others through my spirituality. But I have found that everybody I know that is living with HIV -- most of them do find a spirituality. It's pretty amazing, because it's a strength that we can draw on.

And is this an organized religion?

No. It's just the 12-step programs. And I'm not real picky. I go to AA, mostly. But if I'm out of town and there's another kind of fellowship, I go. I just go, because the 12 steps and the spiritual principles are all the same. And I use that in my daily life.

What's the worst reaction you got when you disclosed?

It was the guy who I was dating for three months. That's been the worst. Most people, at first they are shocked, because they're like, "But you're white, and you're a grandma."

But it's always an opportunity to teach. I spend a lot of time learning about HIV so that I can give them as accurate of information as I can. And I do that. I also really teach my clients when they come in to be tested. I have only had one test positive so far out of . . .. We've had 873 Native Americans test.

That's great.

Yeah. It's been awesome. Because there was no one doing any testing for Native Americans in my state. And we have five tribes in my state. So I went up to the state and they gave me a grant to do it. Because they believed, and I've pulled it off. Part of it's being positive.

"I feel very passionately about the fact that we really need to prevent this. It's a preventable disease. And if we don't come out and tell people, 'I've got it; you can get it too,' that whole stigma of who it is that gets it is still there. And we've got to break down that silence and the stigma so that people will be tested as a routine part of their health care."

And what made you such an activist? I mean, you had no background in activism.

Yeah. I feel very passionately about the fact that we really need to prevent this. It's a preventable disease. And if we don't come out and tell people, "I've got it; you can get it too," that whole stigma of who it is that gets it is still there. And we've got to break down that silence and the stigma so that people will be tested as a routine part of their health care.

Knowing your status is so important. I actually saw one of the women at the retreat, and she was an activist. And she inspired me. And I got to see her at this conference, which is always really nice. And I got to tell her how much she affected me. In my early years of having HIV, I got to see her out there fighting, and I thought, you know what? I can fight, too.

So is that one of the most important things that has helped you survive HIV?

It has. It helps me deal with it. It's kind of my get-back-at-the-disease. If I can stop one person from getting it, it's like, I kind of feel like I'm going, "Nah, nah, nah, nah, nah." Sounds really juvenile, but you know what? It really works for me. Because the disease has had such a devastating impact. Even one person that doesn't get it; I just feel like that's so important.

And maybe, you know, people watching this, or listening to this, similarly, can hear your story and . . .

And that's why I have no problem telling people at all.

You don't mind being in your local newspaper?

No. I've been in the newspaper for HIV Testing Day, encouraging women of all races, all marital statuses. I'm like telling them, "It can happen to you. You need to get tested, even if you've been in a marriage for 10 years."

And you've had no reaction, no negative reaction, to being in the newspaper? Like, your neighbors?

No, actually, I haven't. And friends from my treatment center call me up and go, "I saw you on the news!" So they were really excited. Because for World AIDS Day, I tend to be on the radio, or on TV, to promote testing, because I believe testing leads to early treatment, which leads to less . . .. It's a prevention means.

So are you still in therapy?

I'm not. I don't really have time for it. Plus, where I work, we have social workers. And so if I'm experiencing anything, I can just run downstairs and talk to them.

Because you seem to have gotten so strong.

I think I always had strength, but I didn't know how to use it. And I didn't have a purpose. And now I have a purpose in life. And having a purpose, some place to direct my energy, instead of just letting it go, has been amazing to me. But I've got so much support, too. I've got all my friends from the 12-step programs. I have all my friends from the Odyssey House. And then I've got a bunch of professionals now that have become friends. People -- our local health department, our state health department, is amazing. It really is. And I've got friends that work there. And we talk like friends. You know, send e-mails back and forth, and jokes, and stuff. And I've been able to reach out to a lot of people. And I've got friends all over the world. It's so cool.

Do you do a lot of meth activism, as well?

"As women, we _do_ have some responsibility for our sexual health. Because of a lot of what we've grown up thinking, we don't think that; we think they're supposed to take care of us."

Not so much. I pretty much got my focus on HIV. I do talk about how substance abuse plays a big part in HIV transmission. In my story, it had a lot to do with it. It was because I was high, and I . . .. And the thing that I like to tell people is, just because he didn't tell me doesn't relieve me of my responsibility of asking whether he was HIV positive, or protecting myself. And that's the big thing. We have to protect ourselves. We can't expect other people to protect us. We have to take that responsibility.

That's what kind of makes me mad. Because, you know, as women, we do have some responsibility for our sexual health. Because of a lot of what we've grown up thinking, we don't think that; we think they're supposed to take care of us.

Well, you know what? If we want to have some kind of equality in this world, we have to also take equal rights to that level. I have the right to protect my body. I have the right to ask. And if you're going to be sexual with somebody, if you're going to get that intimate, that's not a hard question to ask: "Have you been tested for HIV?" Do it before you even start necking. This is what I like to say. Or before you start making out, that should be part of it.

I know that, like, when I was drinking, and stuff, I would never even think about talking to somebody about it. But you know, if you think about it, and you talk about it, you may not end up sleeping with somebody that you sleep with because you might be going, "Oh, wait. Is this really someone I want to sleep with?"

Right. And so what advice would you give to someone who was just recently diagnosed?

The biggest thing is, don't give up hope. Don't feel like you're going to die anytime soon, because you're not. There is a life out there waiting for you.

And something that somebody wrote, I read it somewhere, I can't even tell you exactly where, early in the time since I was diagnosed, was, "You get busy living, or you get busy dying." And I chose to get busy living, and you can, too.

This transcript has been lightly edited for clarity.