When did you first realize that you were an African American?
I have always had an awareness that I was black, and I choose the word black consciously. To say African American -- to me, it just feels like a sociopolitical assertion that I'm not really interested in making. I'm black -- that is what I grew up as and feel that I always am.
By definition, African American excludes any group of people who are not in this country, [even if] they are also African-derived populations. Up to the last 10, 15 years of my life, whenever I thought "black," I thought all black people. I never thought in terms of, "I'm an African American, and they're African Caribbean." As far as I'm concerned, they're just other black people.
To what extent have you experienced racism in your life? How have you learned to deal with it?
I grew up in West Texas, and it's built into the system. There's a lot of open racism there.
It was nothing to hear the "n" word, or get that looking-down-their-nose feeling, or outright anger or hatred pointed at me, for no other reason than because I am what I was born.
College was very odd for me, because I had grown up in a predominantly black environment. College was the first time that wasn't true. And there were some things that occurred that completely caught me off guard. A number of times people tried to run me over with their truck, and I was just walking on the sidewalk. They yelled stuff at me that made it very clear why they were trying to run me over. So you had to pick and choose when you were going to walk around campus at night.
How have you learned to deal with it?
Mostly by my solitary existence. I just take myself out of harm's way, as it were. It's just easier not to deal with it than stand up and make myself a target -- especially in those situations where I wasn't immediately in imminent danger.
What do you think is the biggest challenge facing African Americans today in terms of HIV?
A lot of the people that I knew had issues not just with HIV but even with just being gay. If you don't fit the expected role -- if you're a man here's what you do, and anything outside of those rigid stereotypes can get you in a lot of trouble with your family and the social circles in which you travel. Getting to the point of not denying, and accepting these people, would be a huge move forward in that respect.
What HIV risk factors are of special concern to African Americans?
The whole denial/acceptance thing put me in a place of, "I can't let anybody know that I do this thing," so you keep it hidden, and you end up doing a lot of things that, if you were able to do it in a public manner, in a way that was acceptable, you could make better choices. You could make safer choices. So that one thing alone would guarantee that a lot of the risk factors I engaged in wouldn't happen, because there would be better opportunities.
Are there any specific aspects of African-American culture or identity that give you strength as you learn to live with HIV?
Well, the thing is, I have only ever been black, so it's very difficult for me to understand what that means. For me, the only difference I see between black people and anybody else is that we're louder on occasion! I understand that my skin is darker and some of the cultural remnants that are "African-ness" have been brought through history to us and with us, but outside of that, it's no different than any other social or ethnic group. I simply am who I am.
What is the biggest change you'd like to see in HIV treatment, prevention or education care for African Americans?
It all goes back to that whole denial/acceptance thing. If they would acknowledge it, a lot of people might be more willing to help in getting information out there, and better prevention efforts, and the types of things that would go a long way in keeping this from becoming an even bigger pandemic than it already is.
Do you think the Bush administration is doing enough for the black epidemic?
I don't think they're doing enough for HIV in any community.
How would you grade Bush's performance?
I would give him an F, because the administration has had to be forced, embarrassed, to even make them acknowledge HIV and AIDS -- not just in this country, but worldwide.
What are some of the main myths about HIV that you hear in your community?
Before I became positive, I had a complete lack of understanding as to what was going to happen or what treatments were available. All I had were those images from the early '80s, all I could think about was, "This is a death sentence." But as it turns out, it isn't the death sentence it once was. The quality of people's lives is better, to be certain, even though a cure hasn't been found -- or at least a way to turn this into a long-term, manageable disease.
What are your fears and hopes for the next generation of African Americans as they face the risks of HIV?
That they become more informed. That they understand that making a choice to engage in less safe sexual practices is the same as saying, "I think this is worth dying for," potentially.
What has been your experience with HIV treatment?
I've not been sick from any HIV-related issues. I've had to deal with weight-related things -- high blood pressure, cholesterol, triglyceride issues and stuff like that. Some of the medications I've had to take have been far worse on me than the HIV itself. The medications continue to keep the virus suppressed and my numbers are fine. As soon as I started taking medications and my numbers started to come back in line, my swollen glands went away. They're still a little puffy, but I was like, huge -- like holding air in my cheeks. Other than that, I didn't feel sick. So as long as the medications continue to work, I'll be around for some time to come.
How do you feel about your meds?
It's a very odd thing to get up every morning and walk to the cabinet, and here are these pills that I have to take every day. It seems almost surreal, but I have to do it. And I understand that, intellectually and practically. It just feels somehow unreal because I don't feel sick.
Have you experienced side effects from your medication?
From my first combination, I was fine for a few months, and then one day, I just started to get nauseous, and it would not go away. Every day was nothing but all-day-long nausea. And once that happened, it was like, "Oh god, I've gotta live the rest of my life like this?" And so I called the doctor's office and talked with them for a while, and he asked me to stop taking those. The nausea went away after a few days, and after a few weeks I went on a new combination. And I've been on it for almost seven years now.
How would you rate your ability to take your meds on schedule?
I'm very good at it -- my entire world is centered around having a routine.
Do you have any special rituals or preparations that help you remember to take them?
I keep the medications in the same cabinet in the kitchen next to the refrigerator. It's better not to have them in the bathroom cabinet because of all the moisture that can get into them form the shower. I always look at the refrigerator in the morning, so I've gotten used to this visual cue. When I'm on vacation, I'm more likely to forget.
How did you choose your doctor?
I'm under an HMO [health maintenance organization], so it wasn't really a choice.
How often do you see him?
Every three months.
Do you think you are getting the best care possible?
Yeah, I'm getting the best care possible, but again, it's an HMO, so in a couple of years I could be seeing a different doctor. This is my fourth doctor in almost eight years: I get a doctor, and I get comfortable with them, and then for whatever reason they move or pull out of the HMO, and I go back to ground zero. So this year I changed to a PPO [preferred provider organization], because I can go outside the network if my doctor does.
Is your doctor an African American?
No. He is gay, though. I discovered quite by accident. I feel a lot more comfortable somehow with a gay doctor than with the straight ones. He seems to understand better -- not in terms of medical training and background, but there's just an additional level of comfort. There are issues that I have that may not quite be medical, they might contribute to or be a consequence of [something medical]. I feel more comfortable communicating that to him than [I would from a straight doctor].
Does your doctor treat you like a partner in terms of making decisions about your health?
Yes he does -- and that's something the first two doctors, who were straight, didn't. I would say, "Here are my feelings on this, and this is how I would like to work on this," and it would turn into -- it felt like talking to my dad when I was little, like, "I know what's right, and this is what we're going to do." I understand I had a right to disagree, but it always felt like such a confrontation.
Whereas, with [my current doctor], it just feels more like I'm having a conversation with him than anything else. And he makes the extra effort on occasion to reach through if I'm feeling unapproachable. And I enjoy that very much.
Do you have a particular health regimen that helps you stay well?
No, but I do feel better if I do anything that contributes to my health, even if it's just walking 30 minutes a day. I don't do it consistently, though, because I always get myself caught up in work projects that need to get done and there's this deadline, so health issues get pushed onto the back burner. But even when I'm taking medication that makes me feel bad, I feel a lot less bad if I'm doing exercise. And it doesn't have to be, "I'm going to the gym and I'm pumping iron and I'm doing aerobics." Just doing something where I get a chance to do this thing and I'm breathing. It helps me feel better physically and psychologically.
Do you participate in an AIDS service organization?
I don't participate in any organization. Well, the football parents' organization, but that's not quite the same thing.