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Tell us a little about your life. What's the community where you live like?
I live alone near the border of West Los Angeles. It's a very congested, very diverse area with its fair share of gang activity -- but we know each other in the neighborhood. I'm disabled now -- not so much from HIV as from hep C and other stuff -- so I can't work. But I started an AIDS ministry at my church, Ward AME [African Methodist Episcopal]. It's called PEACE -- People Enriching lives, Advocating against AIDS and Conquering in Exhortation.
Where did you grow up?
Texas. We lived in Dallas until I was six. After my dad was shot and almost died, all the kids got split up. I went to live with my aunt in Midland, Texas, until I was 16. Then I returned home to care for my dad.
What did you want to be when you were a kid?
I wanted to be a doctor so I could take care of my dad. Amazingly so, most of my life, I've worked in the medical field.
What kinds of work have you done?
Medical assisting for five years, certified nursing assistant for 10, and security for four years. Also phlebotomy and medical billing. For the last 12 years, I've done HIV counseling, testing and advocacy.
What work did your parents do?
My father was a mechanic -- he managed a Texaco franchise. My mom worked for the newspaper and Mary Kay, and my stepmom is in real estate. My real mom's been deceased for a long time.
Who are the most influential people in your life?
Professionally, I'd say Cynthia Davis. She's an assistant professor at Drew Medical Center. She's done so much in the HIV community. She's traveled internationally, runs a mobile HIV-testing unit, started this doll-making sisterhood project for girls in Africa, and holds fairs and does all this teaching. She gets a lot of flack from some of the grant providers because she wants to fund a broader base of HIV programs here in Los Angeles, which is still heavily focused on the gay male community. I applaud her so much for all the work she does.
I also look up to Mary MacLeod. She was someone who struggled through it all -- born to slaves and working in the cotton fields -- and still, she reigned at the top, educating about racial equality and advising presidents.
In my personal life, my father was my hero, because as a kid, I watched him get shot. He was paralyzed from the waist down as a result of it. And still he raised all seven of us children.
Are you a religious or spiritual person?
I am a very spiritual person, and God has been so good to me and has brought me through so much.
Do you attend a church? How does it address HIV?
The church that I'm in, where I started this AIDS ministry, is somewhat open about it, but it's a new arena for them to work with, so we're taking it one day at a time. Thus far, all is well. I think as time goes on, we will be more compassionate and welcoming and able to understand.
Do you feel accepted as a person with HIV?
Yes, for the most part. I can't say I that feel totally accepted.
Do you consider yourself an AIDS activist?
Yes. It inspires me when I get calls from people asking me to share my story. When I can talk with someone who's newly diagnosed and I'm able to share what I've come through in a way that enables them to use that information for themselves, it fills me -- sometimes you can't see the good in you for yourself, but someone from the outside can show it to you.
I have my down days, like everyone else. I get sick a lot, I get fatigued, I get depressed. But every day, I know my being HIV positive is a "lemons-to-lemonade" story! I don't do the things I used to do anymore because of HIV, and I can be proud of that.
What does activism mean to you?
Lobbying, rallying, writing letters to your congresspeople. Getting on that bus, marching. Going around, talking about it. If you hear something that you know is wrong, don't just allow it to escape, correct it if you can.
What do you like to do in your spare time?
I like to write poetry.
How did you find out you were HIV positive?
In July 1986, I was hospitalized for a hysterectomy. On the last day of my stay, the doctor called me on the hospital telephone as I was preparing to leave, and she told me, "You've been exposed to HIV, and when you get home, see your doctor." I thought "exposed" meant like it was in the air, you know, so I didn't do anything when I got home. I spent the next four years doing everything I had been doing before, which was a lot -- the drugs, the men, the crime, everything. That was in Texas.
And then, in 1990, I moved to California and I went to the Clare Foundation in Santa Monica for drug detox. I moved on to Pacifica House, where a man from the Red Cross came by to teach us about HIV. The man talked about "exposure" meaning "infection"! I tell you, my hand shot up when he said that, and then the staff said I needed to get tested and that they could do that right there at the facility.
So I got tested and they told me that my test came back funny and they were going to have to test me again. I checked out! I left Pacifica House, checked into a hotel, got drugged up, and tried to kill myself with a .45. I put a gun in my mouth and pulled the trigger -- but the hammer jammed. I'm a country girl -- I know guns, so I oiled the hammer and tried again.
Foolish me. The bullet just barely grazed my cheek, so you know God was there with me that night.
I went back to the Clare Foundation. I called the Red Cross. They sent a lady out to give me my diagnosis, with my counselor there for support. When they told me I was positive, I just dropped. Clare Foundation wasn't real educated about HIV at that time, so they sent me over to Tarzana Treatment Center, which was the rehab facility that was considered to be savvy about HIV. The positive people were classified as a certain "level" -- like no one else was going to know what that meant, right? Everyone knew we were the positive group.
The staff was not very educated about the basics of HIV. They didn't want to be too close to us, they gave us plastic utensils to eat with, our clothes and sheets were washed separate, all that. And this was "the spot" for people with HIV!
Anyway, I left there because I was angry with the way we were treated. I rejected a staff person's sexual advances and he started making trouble for me. I went through the PATH (People Assisting the Homeless) program; I got a job, saved my money and got an apartment. Life was just beginning for me, a new life. I called my dad with the news of my HIV, but he was so happy that I was doing well, he couldn't hear me cry. He told me he was proud of me and to stay in California. He died a few days later. I went to Georgia to be around close family, I got married, traveled, left that marriage, and eventually returned to California, where I still am today.
What advice would you give someone who has just found out they are positive?
My tips for the newly diagnosed are: Keep your head up! HIV is not a punishment. There's life after HIV! Don't let it monopolize your life! It's very important that you learn to love yourself. Live, because no one else can or will do you better than you can do you. There is no concern for blame -- the concern is, "How do I live?"
Also, make sure that you understand what you're being told when you receive your diagnosis. I'm so glad they aren't allowed to give you that news over the phone anymore, because you really need to get them to sit down with you and make sure you understand what that test result means before you leave. I've seen my hospital records from 1986 now, and it was written that I was HIV positive. But, as you can see, I didn't leave knowing what the doctor told me really meant. It took me four years to get that information straight, and during that time I was doing dangerous things with people. I'm grateful that I didn't infect anyone, but I would have to say I wouldn't feel totally at fault -- I didn't know I had HIV and I believe each person is responsible for themselves. If your partner won't use protection, you can.
What conditions in your life put you at risk for getting infected?
I had all of the high-risk behaviors -- transfusions, unprotected sex, needle-sharing. But all my sex and drug partners that I've talked with are negative, so I tend to believe I got it from the transfusions I received when I was hospitalized. This was before widespread blood testing, and I got hepatitis C too, so that makes sense to me. I got approximately 10 pints of blood during that stay, and that blood saved my life. If HIV was the result, so be it -- I would have died without it.
When you look back, what would you have needed in order not to get infected?
I don't think there's anything in particular that would have stopped it -- it was my fate. I can't say, "Why me?" I always say, "Why not me?"
What is the first thing someone who has just found out they are infected should do?
First, pray; second, pray some more. Then go talk with someone who's living with HIV.
How has HIV changed you?
HIV has changed my life totally. It's been a blessing instead of a curse, because I don't do the things I used to do. I'm particular about who I allow into my inner circle. I'm more close to my faith. I'm able to share my testimony, my story, and touch somebody's life. To me, that's the best. If I can keep one person from falling into what I fell into, then I've added a star to my crowning glory.
When did you first realize that you were African American?
I don't think I've ever not known. It's not something that registered. I'm black and that's who I am. But I grew up in an interracial family. My parents were biracial.
To what extent have you experienced racism in your life?
I'll share with you one experience I had. I had to return something at a store. There was a line behind me. I stood there debating what I had to return, and then this one white guy behind me said, "Oh, why don't you people go back to where you came from?" I looked at him and said, "Excuse me, I think that we were here first." The clerk, who was also white, tried to mediate. When she couldn't resolve it, she said, "Let me go get the manager." The guy in line says, "Good, go get the manager." When the manager came out, he was this real big black guy. He asked the guy to drop what he had and leave the store. So it turned out great.
How have you learned to deal with it?
To see it for what it is: ignorance. When you don't know any better, you can't do any better.
What is the biggest challenge facing African Americans today in terms of HIV?
Stereotypes. Erroneous beliefs about punishment, such as you get what you deserve. Some of us die without reason, visible reason, but we don't know what God has called for our life.
What HIV risk factors are of special concern to African Americans?
Secrets. Too many people not telling the truth about what's going on in their lives -- their sexual habits.
Are there any specific aspects of African American culture or identity that give you strength?
Family and friends. Organizations and community that support the effort and advocate, and don't mind standing on the front line.
What is the biggest change you'd like to see in HIV treatment, prevention or education care for African Americans?
I want to see significantly more education for health care providers, social workers, case managers, and everyone else who's working with HIV, so they can really address the needs of HIV-positive people. Get off your duffs and educate yourselves if you really want to help. Also, it needs to be more culturally specific. A blanket statement does not work for all cultures.
What kind of messages should we be giving?
Guys are having their traditional roles taken away, which forces a woman to step out of her role too. Women today tend to be the aggressors, which allows the man to relax on his morals, and not stand in his position of faithful provider that God gave him. Then we wanna hold onto the man so bad that we don't care what he's doing. That's when women are at risk of HIV. I think we have to remember the days of old when we're giving out messages about HIV.
In prevention, I think early testing is important. Don't wait until it's full-blown AIDS. Go ahead and get tested when the thought enters your mind.
Do you think the Bush administration is doing enough for the black epidemic?
Let's just laugh on that one, OK? How many ways can I say no? I think he's done a couple of things, but not nearly enough. He hasn't even touched the tip of the iceberg.
What are some of the main myths about HIV that you encounter in your community?
One is if they have oral sex then they're not at risk, so they don't use a condom. Or if they use more than one condom at one time when they're having vaginal or anal sex, then it takes the risk away. Or like, out of Africa, they believe that if they have sex with a virgin, whatever disease they have will be removed -- they'll be spiritually cleansed.
What are your fears and hopes for the next generation of African-Americans as they face the risks of HIV?
My hope is that we as a people will be more united, have more in-depth communication. My fears are that things won't change. I would like to believe that this will improve in the future, but right now I don't see that. Right now is a hard time, especially for African-American women.
What has your experience with HIV treatment been like?
When I was first found to be positive, my doctor put me on AZT [zidovudine, Retrovir]. I took it for a few days and realized that this drug was not saving lives and threw it away. In 1994, I got PCP [pneumocystic carinii pneumonia] while living in Florida -- the doctors gave me bactrim, and I got better. In 1997, my doctors here in L.A. thought they might be able to eradicate the virus from my system, so I was put on a combination of indinavir [Crixivan], ddI [didanosine, Videx], and ritonavir [Norvir]. The outcome was noncompliance -- I hated it and it hated me.
Today, I'm not on any HIV medications. After a few months of meds in 1997, I decided to come off because my T-cells and viral load were stable. I felt that as long as I could maintain stability without medications, why interrupt that? If it's not broke, don't fix it. Mind you, my doctor does not agree, but I'm still maintained. I have a healthy T-cell and viral load.
Have you been sick? Do you have any other illnesses that have complicated your health or treatment?
Again, HIV treatment has been a problem for me, especially since I am also hep C positive. This makes it sometimes impossible to treat both illnesses at the same time, as both treatments employ -- and can destroy -- the liver. I've suffered many illnesses. Even though I've been positive 20-plus years, HIV has not been my biggest worry -- other illnesses have. I have hep C and depression and drug addiction, not to mention historic dysfunctionalism within my family.
How did you choose your current doctor?
I went on the Internet and did some research. She was very knowledgeable in most of the conditions that I suffer from.
Do you think you are getting the best care possible?
Is your doctor an African American?
No. I don't know if she's Caucasian, but I would say so.
Do you think an African-American doctor can understand and treat African-American patients better?
What kind of relationship do you have with your doctor?
Very open and honest. I wish I had my way a little bit more. I guess that's why she gets paid the big bucks.
Do you have a particular health regimen that helps you stay well?
Meditation, poetry, acupuncture, herbs, vitamins. I eat right, I get lots of rest, I do a lot of therapy groups -- group and individual psychotherapy -- and I talk about what's bothering me. I exercise, I walk. I work with others who are dealing with the same issues I'm dealing with.
Do you participate in an AIDS service organization? Have these organizations been helpful to you in improving your life and health?
I have an AIDS ministry in my church [Ward AME] called PEACE -- People Enriching lives, Advocating against AIDS and Conquering in Exhortation. I work with a lot of different people, from grade-school students to medical professionals to church groups and community forums, so all the audiences are unique. But I think the most remarkable thing about all of them is their ability to be captivated and caught up in a oneness with my story, even if their experience is very different from mine.
Sometimes when I speak at schools, teachers will take me aside and say, "Don't bother getting all detailed about your story because these kids aren't going to hear you," or "This person might give you a hard time if you talk about this or that." But I tell you, those kids' eyes are there on me! They sit quietly and hear it even if they don't want to hear it, you know what I mean?
How have your relationships with family and friends changed since you were diagnosed?
When I was first diagnosed, when I told my dad and [step-]mom, my dad sent me flowers and a "Get Well" card. I sat looking at this card, and I thought, "Hey, I'm never gonna get well."
More recently, my [step-]mom has got more involved, she knows a lot more about it now that before. And my sister has even worked with people with AIDS. They come out and support me when they hear me speaking or doing some kind of engagement. I do a lot of publicity now. I do commercials. I have done magazines. Lots of speaking engagements in colleges. I try and stay visible and put a face on it. As much as I can. I'm sick a lot, in and out of the hospital for one reason or another. But for the most part I have a lot of support. I don't hide it -- I can't!
How do you decide whether to disclose your HIV status to someone?
Usually I ask them first, "What do you know about HIV?" And if they seem to be a little savvy, then I'll go a little bit further. If they're not, if I feel like they're totally ignorant, I'll educate them. Then I'll let them know.
What is the best response you have ever gotten from telling someone? What is the worst?
The best response was when someone said to me, "It is not unto death," and I carry that to this day. While I live on this side, maybe I have this disease, but when I get to heaven, I won't have any disease.
The worst response is I lost a job because of it. My supervisor wanted more intimacy than I was willing to provide. So I revealed my status, to deter him. But instead of just leaving it alone, he publicized my status, and I ended up walking away from that job and getting in a big mess about it. But it was resolved amicably. That security business closed.
How has your sex life changed since you became positive?
Well, I don't sell it anymore! I am very careful about who I allow into my life. I am very much a one-man woman.
Have you faced rejection from potential sex partners? How do you deal with that?
I've been married and divorced since diagnosis. I've been single since 1998. In 2000, I got engaged, but chose to end it. I'm single right now. I have to say that I haven't found rejection to be such a problem since I was diagnosed, but I do tend to hold myself back from the guys I really want because of fear of rejection. That guy may even be walking to me on his own, but I'll turn and walk away rather than take that risk. I'm getting better with that, though, and I don't think that challenge is any different for any other woman.
For the most part, I haven't found guys to be afraid of HIV. For example, I was dating this guy I really didn't like so much, but it got to the point where we were going to get closer. So I told him, and he was like, "And?" I thought that would be my out, but it wasn't!
But I'm learning that I have choices, too. Most guys don't know a lot about HIV and I find myself educating them, and that irritates me. I tell them, "Go get a test, ask them all the questions you want to ask, and then get back to me." Most of them are not really afraid of getting HIV. They say, "All we gotta do is use a condom, right?" But they don't seem to get it that there is a person beyond that condom.
Some of my girlfriends have other stories. I think it depends on how you approach it. You have to learn how to read people -- you have to take care of yourself. There are times when you can let it roll off your back like sweat, but you have to think about your own attitude and how you're coming off to other people.
Do you have a policy about if or when you tell a sex partner that you are positive?
I tend to tell a partner up front, "Take it or leave it."
Do you feel that if you practice safe sex, it is necessary to tell a sex partner that you are positive?
Yes. Nothing is a hundred percent except abstinence.
What books, movies, music or TV shows have had a big influence on you?
My favorite movie is probably Crooklyn with Alfre Woodard. It reminds me of my own life growing up. I listen to gospel, R&B, and the blues -- I'm old school. The book that's had the biggest impact on me is the Bible, which of course has many authors.
What's the greatest adventure you've ever had?
Flying in a helicopter.
If you were granted one wish, what would it be?
To find true peace for the world.
Anything else you'd like The Body's readers to know about you?
I try and live so that my outside matches my inside. I'm honest to a fault. I am who I say I am.
Click here to e-mail Regina Brandon.