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?