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Regina Brandon
Los Angeles, California
 


Regina Brandon
  Regina Brandon, whose 1990 HIV diagnosis set her on an upward path from brutal street life to outreach work and professional speaking about HIV among minorities in Los Angeles.
Rising Up From Drug Addiction Before being diagnosed with HIV, Regina Brandon had survived many traumas, including her biological mother's drug addiction, a near-fatal shooting incident against her father, sexual assault and her own struggle with drug use and street life. But it was her HIV diagnosis in 1990 that set her on a new life path that included addiction recovery, a close friendship with a young HIV-positive man who served as her mentor, and the discovery of her own powerful voice as she began to share her story with other people at risk for and living with HIV. Now a speaker and outreach worker with Minority AIDS Project in Los Angeles, Regina considers her life to be blessed by the presence of HIV, and uses her gift for speaking as a witness to her spirituality.

In addition to her speaking, Regina sits on the boards of two AIDS organizations that focus on women: Women Alive and Women at Risk. She has plans to develop an AIDS ministry for use in church communities. When not writing poetry and working on her autobiography, she enjoys dancing with her Siamese cat, Brandy.

GOING PUBLIC

Who have been your mentors?

First, would be Jesus Christ, my redeemer, because He's the model of who we should be. After Him, I would say Mary McLeod Bethune, for she accomplished so much amidst such hardship. Even in the face of so many challenges, she wasn't afraid to be all she could be and she emerged victorious. Then, my dad!
"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 made you decide to speak out publicly about your HIV status?

Well, I am a very spiritual person, and God has been so good to me and has brought me through so much. I have an amazing testimony, and sharing it is a spiritual gift for me.

I want to tell you about Scott McTaggart, because he's really the one who brought me to this place. Back in 1990, I met Scott through a buddy support group, and he took me by the hand and introduced me to the HIV world and taught me so much about treatment and survival with HIV. He'd come by my house and flop down on my couch with his big bag of meds and say "Give me a glass of water, Gina, and we'll talk about these pills!" I watched him go out and tell his story, and I was like "Whoa!" After he died, I picked up his torch and went on by sharing my own story. He was probably no more than 27 or 28 when he died ... he was just a beautiful spirit, in the body of a frail little white boy with freckles and a big red afro.

What do you think is unique about your story?

My story is basically a story of survival. I survived my father being shot as I sat on his lap; I was five years old. I survived putting a .45 in my mouth and pulling the trigger, twice; the second bullet scaled my face. I survived another suicidal "cry for attention" attempt during a centurion blizzard in Georgia. And now I've survived this AIDS diagnosis thus far. I'm living today, and I'm as happy as I want to be.

What do you think is unique about the audiences you try to reach when you speak out?

I work with a lot of different people, from grade school students to medical professionals, to church groups and open community forums, so all the audiences are unique in their own way. 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?

What's the best thing about sharing your story with others?

The best thing about sharing my story with others is that they might share what they've learned with yet others. God gave me this ability to share in a way that reaches other people, and I enjoy doing it. It's such a blessing to me, really! And if even one person can connect with me and learn from what I have to say, then I've accomplished my mission.

What's the worst thing?

Never enough time to say it all ... looking forward to finishing my book.

What do your relatives feel about you speaking out?

My family has been so inspired by me -- apparently my sister in particular, since she nominated me for this award! My HIV status inspired and motivated them to speak out and get involved as well. When I first told my mom that I had HIV, she sent me a get-well card. Now, she calls me to give me updates on new advancements -- she says "Gina, have you heard about ... ?" And I say "Yes, Mom, I've heard about that!" My sister is a nurse, and now she works sometimes with HIV/AIDS patients. That surprises people when they first hear it, because a lot of people still don't want to be involved with caring for people with HIV or AIDS, but she's comfortable with it. She even wrote her dissertation on HIV/AIDS, and she called me with questions about my experience and treatments. They think I'm like some kind of icon who has all the answers, which, of course, I don't. Sometimes they forget I'm sick and they push me too hard, but mostly they just seem to enjoy being around me.

What does your partner/spouse feel about you speaking out?

My boyfriend and I have been together off and on for about 10 years, but he's never heard me speak in front of an audience. He's become involved with some research studies on partners, so he participates through things like that. He tells me I'm his superstar, and asks me where all the royalty checks from my speeches are.

What have you learned since you began speaking openly about your HIV status about yourself? About HIV? About other people either with or without HIV? How has speaking out helped you, and how have you changed as a result?

About myself, I've learned that I really do have a zest and zeal for going out and educating people. About HIV, I've learned that this virus is really fragile. It doesn't go looking to enlist you -- you have to go and sign up for it, kind of like Uncle Sam: If you don't have a life, you can sign to enlist in the army; there are great "opportunities" awaiting ... i.e., opportunistic infections.

The evolution speaking out has brought me has paved the way for greater heights and a new freedom, something I didn't know for years because of the stigma and persecution associated with being a black women with HIV. I even lost a job because of my status once -- a supervisor was being sexually inappropriate with me, so I told him "You want the goods, you have to want AIDS too!" He used my disclosure against me with other employees and threatened to fire me. I called my uncle, a corporate attorney, and he instructed me about what to do. The outcome was in my favor, but the experience crushed me emotionally for a time. Fortunately, it was during a time when Scott was available to me; he helped pull me back up from that place.

DIAGNOSIS

Can you describe your feelings when you were first diagnosed? Did you feel differently a few months down the road?

I was unmoved. You have to hear the story ... walk with me here for a minute.

In 1986, I was hospitalized for an operation. On the last day of my post-op eight-week 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. And then, in 1990, I went to the Clare Foundation in Santa Monica for drug addiction detox; I moved on to Pacifica House, there 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 present with me 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"; yeah, 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 P.A.T.H. (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 my 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.

Any tips for those who are newly diagnosed?

My tips for the newly diagnosed are: Keep your head up! HIV is not a punishment. It's not unto death -- 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.

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 right in there 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.

If you want to, can you share how you believe you acquired HIV?

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. The mystery is that I was found to have an opportunistic infection a few years later.

What do you believe was your biggest risk factor?

Like I said, I had all the risk factors except being born to a mother with HIV.

What do you think is the first thing someone who has just found out they have HIV should do? What's the second thing?

First, pray; second, pray some more, then go talk with someone who's living life with HIV.
"God gave me this ability to share in a way that reaches other people, and I enjoy doing it."

If HIV were a person, animal, or object, what would it be? Why?

A parasite! Self-explanatory, isn't it?

What do you think is the biggest problem facing HIV-positive people today?

Burn out of the front runners, and a lack of willingness to continue essential funding.

What is the biggest change you'd like to see in HIV care? How about in HIV education?

In education, I want to see significantly more education for healthcare providers, social workers, case managers and everyone else who's working with HIV. I want them all to be educated, so they can really address the needs of HIV-positive people -- get off your duffs and educate yourselves if you really want to help.

When you look into your crystal ball, what do you see in the future for people living with HIV?

Asking that today, I see doom and gloom. I would love to see a life worth living with HIV as a shared project between government, church and society. Right now, though, what I see is genocide. 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.

How do you maintain a positive outlook?

Well, I have to! When I look at where God has brought me from, where I am versus where I could or should be if I were left to my own devices, I have to be grateful. But 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 everyday 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.

TREATMENT

What has been your overall experience with HIV treatment so far?

When I was first found to be positive, my doctor in Venice 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 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 rigid combination of indinavir (Crixivan), ddI (didanosine, Videx), and ritonavir (Norvir), I believe it was. The outcome was NON-compliance ... I hated it and it hated me.

What is your current CD4 count and viral load count? What was your first CD4 count and viral load count?

Currently, I am at 700 T cells with an undetectable load. My first T-cell count in 1990 was 217; there was no such thing as logs and viral loads then.

What HIV treatments have you been on, if any?

Again, HIV treatment has been a problem for me, especially since I am also hep C positive. This makes it impossible to treat for both illness at the same time, as both employ and destroy the liver.

How often do you see your doctor? How did you choose your care providers?

I presently see my doctor quite often, as HIV is not my only adversary. I go to Dr. K. Sandler is in Beverly Hills; she came highly recommended, she is well-versed in many areas of the health field, not just specializing in HIV treatment.

What kind of relationship do you have with your care providers?

Again, I believe she ranks amongst the best of the best!

Do you have a health/wellness regimen that you feel helps you keep healthier?

Meditation, poetry, acupuncture, herbs, vitamins and exercise on some level.

Any adherence tips for other people on treatment?

Do what it takes to sustain life at all costs, if life is indeed what you want.

DATING

If you are single, how has your dating experience been since you were diagnosed with HIV?

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, but on-and-off dating a longtime boyfriend. 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. As I said earlier, I have down days more so than most, there are days I can't get out of bed; days when I can't eat; days when I just can't be bothered. Life is complicated for positive people, and it goes way beyond safety and transmission.

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.

How soon do you disclose your HIV status to the person/people you're dating?

Immediately, if I think it might be going somewhere.

Any tips for dating that you can share with other people who are positive?

First, be well-informed yourself. You can't educate about what you don't know about yourself, and most people you meet won't be educated about HIV. Don't wait -- if you're interested in someone, be upfront about it. But you still got to be careful about who you tell, so choose wisely. If you choose wrong, chalk it up to experience and grow from it. What doesn't kill you can only make you stronger, that's what my dad always told me.

AWARD

Who would you dedicate this award to, if you could?

My father. I have to tell you about my father. When I left Texas, he was a counselor with the Oral Roberts 700 Club. I told him I was on drugs and needed his help to get off them, and he said "Pray." So I prayed with a Bible in one hand and a pipe in the other, if you understand what I'm saying. I prayed for fourteen days, and on the fourteenth day, my dad calls me in and says, "I spoke with your uncle out in California, and he wants to help you."

Now, this uncle was a kingpin in the drug world, you know, so I was like "I have arrived!" I was gonna go to California and be big-time! He picked me up at the airport in his stretch limo, and I just knew I was going to be big timin'. But I got in that limo, and there was no liquor bar and no drugs ... I looked at my uncle and he said to me, "Baby Girl, if you want help, I'll help you, and if you don't, I'm gonna put you back on that plane." And then he threw away all my little hutchie-mama clothes and replaced them with stuff from the thrift store, and he checked me into the Clare Foundation!

After I made it through that program and got my own apartment, I called my dad and told him, "I got healed! I don't do drugs no more -- but I got HIV." I wanted to come back home, but he told me "No! You stay there in California, because you're doing good out there." Back in Dallas I would have fallen right back into where I was, so I knew he was right and I should stay in California. But I was worried about him in my heart, because his health was poor due to long-term complications after being shot.

The next morning, my brother-in-law called me and said, "Pack up a bag, I'm buying you a ticket so you can come home and see your daddy 'cause he's not doing so good." And later that night, I woke up all of the sudden at exactly 1:06 a.m., and I felt like he was there with me -- I could smell his cologne and everything! I got to Dallas and my brother picked me up and started driving me home instead of to the hospital. I told him I didn't want to go home, I wanted to go to the hospital to see Daddy ... and he just dropped his head, and I knew right then that Daddy had died. When we got to the house, I asked my mother when he'd passed, and she told me he'd died at 3:07 a.m. That was exactly when I'd woken up smelling his cologne, so I told her he'd come to see me when he died.

PERSONAL

Where did you grow up?

We lived in Dallas until I was six, and after my dad was shot 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.
"My tips for the newly diagnosed are: Keep your head up! HIV is not a punishment. It's not unto death -- there's life after HIV! Don't let it monopolize your life!"

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.

What kind of work do/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 step mom is in real estate. My real mom's been deceased for a long time, so it's my step mom I mean when I'm talking about my "mother."

What kinds of work have you done?

I've had lots of jobs. I worked as a medical assistant for five years, home healthcare for 10 years, and did security for four years. For the last eight years, I've been doing my speaking and pre- and post-test counseling for HIV. I'm also finishing up my B.A. in psychology.

Who were the most influential people in your life, both professionally and personally? Why?

Besides my dad and Scott, 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 all these 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.

What do you like to do in your spare time?

I like to write poetry and I love to dance.

Do you have any children?

No, I don't have any children of my own, but I do have plenty of God-children.

Do you have any pets?

Brandy, the singing and dancing Siamese cat! She's the best cat -- she loves to chat and dance when I sing to her; I've had her since she was 5 weeks, she will be nine years old on the 14th of April.

Where do you live? Describe your community?

I live near the border of West Los Angeles. It's a very congested area with its fair share of gang activity, but we are a very diverse community of people -- not an upper-class area at all, but we know each other in the neighborhood.

If you could live anyplace besides where you live right now, where would you live?

Outside America. Probably Australia ... my God-mom's been there and I have a trip planned for next year.

What's the biggest adventure you've ever had?

I flew over Las Vegas in a small jet with a friend doing lazy-eights, drops, flips, etc.

What are you currently reading? What book or author, if any, has had the biggest impact on you?

Right now I'm reading No More Clueless Sex, by Dr. Gail Wyatt. The book that's had the biggest impact on me is the Bible, which of course has many authors.

What kind of music do you like? Which artists do you listen to the most, and who has had the biggest impact on you?

Gospel, R&B, and the blues. I like Shirley Caesar, Smokey Norful, and Yolanda Adams, Anthony Hamilton, Calvin Richardson, Sir Charles... I'm ol' skool.

Interview by Laura Jones

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