What's the biggest change you would like to see in HIV treatment, prevention, or education for African Americans?
Taking it seriously. I mean, I'm seeing some trends now within the African-American community, in faith-based organizations. For a long time, they kind of put their heads in the sand about this. We don't want to deal with this. When people would come to them, the leaders in the church wouldn't even want to deal, wouldn't even know how to deal with a person who was HIV positive.
I'm seeing changes now -- matter of fact, today I just came from a faith-based initiative, where a collaboration of faith-based leaders on the South Side comes together and tries to figure out how to address issues around HIV. That's the most empowering thing the city does, taking it seriously.
You know, it's become a non-issue somewhat for our government legislators. We're not taking it seriously. We're not properly funding HIV prevention and care. We're actually losing ground there, and we're going to suffer the consequences. They think they are saving money, but actually in the long run, it's going to cost us more by not putting prevention and care in place. I guess the main thing is just to keep it up front, keep it in the forefront.
When you see our leaders, such as Oprah Winfrey, or media people and movie stars, and they do some very good things with HIV, but most of it, to be honest with you, is overseas, in Africa. Which is good; I'm not knocking that at all. I love to see that. They need the help; just give it to them. But you don't see that kind of energy right here, under our nose.
We seem to forget our own people are dying right here under our nose, and we're looking overseas. I think we need to refocus some of that energy on the south and west side of Chicago, the African-American community. You know, let's look at home, too. Africa's good, too. Don't get me wrong. But we have got so much that we could be doing right here.
Back to the church part. Do you attend church?
No, I don't. I don't attend church. Not that I would say that I don't like church. I'll tell you why. When I was addicted, I was trying to find any way out. I tried Narcotics Anonymous, and I just didn't seem to fit in because I was HIV positive, and I had this huge secret.
There was a guy that gave me a book. I was praying one day, and reading the Bible. I got a knock on the door and lo and behold -- you get a knock on the door, a lot of times it's Jehovah's Witnesses. I let him in and we started studying the Bible. He invited me to study. I started attending meetings. I actually got about six months of sobriety doing that, at one point. But it was a lifestyle for me, because it wasn't just going to church on Sunday. It was about five meetings per week, plus a lot of studying. I put in about 20 hours a week, just studying to be a Jehovah's Witness. That carried me on to when I first got sober. I was in a relationship. It was a little difficult, because you're in the Jehovah's Witnesses. There were very few people that understood addiction, and even less people that understood what it meant to be HIV positive. So I was kind of missing something there.
I found [what I was missing] in Alcoholics Anonymous; I got a sponsor. I started practicing the principles. Right now, with the teachings of Jehovah's Witnesses -- and a lot of the teachings I do believe -- but a lot of things in there caused me confusion about doctrines. And putting it all together and trying to figure out which religion is right. Should we celebrate Christmas? Should we not celebrate Christmas? How should we properly worship God?
I just decided to take a step back from church, and to try to just put in place in my life spiritual principles. I don't have to figure out what's the right way to worship anymore. All I got to do is try to live right on a daily basis, applying the 12-step program -- and even that, I'm veering off from that.
Lately I've been going after other teachers, like Steven Colby, Principles, Sin and Lifestyle. All of them say the same thing -- going back to religion. It's all grasping onto principles such as honesty, integrity, being proactive, getting out and being responsible. All those kinds of things -- just trying to learn and grow that way. That seems to work for me.
So that's where I'm at right now. I'm not saying I'm going to stay here. I'm still evolving, still growing. I may end up at another church at some point. But right now, I'm just trying to keep it very simple and apply spiritual principles. I'm a long way from perfect. I just try to do better than I did yesterday.
What's the most important thing someone just diagnosed with HIV should know?
I would just say that the first thing someone just diagnosed with HIV should know is that they are definitely not alone. When we get diagnosed, the first thing you think is, "Oh, shit. I'm the only one in the world going through this. Nobody else has had to do this." Get some support. Get somebody to lean on, somebody to talk to, somebody that's been through this before, to kind of guide you. A good friend. Whether it's your pastor, whether it's somebody else that's HIV positive -- whatever it is, you need to get some kind of support. If you are newly diagnosed, and you isolate yourself, it's maybe good to do that temporarily, until you go through the grieving process. But after that, you need to start reaching out to people for help.
How do you do that?
You get out and you ask. You can go to the Internet. You can ask where the HIV services are. You can tell them, "I need help with a support group. Do you know where any support groups are?"
The trick is this: You might not like the first place you go. But once you start reaching out into those fields, you'll find out other sources around the area. One thing will lead to the other, and then eventually you'll find your niche. Just be patient, and don't get turned off by the first place you go. But I would suggest, if you're interested in calling [and you live in Chicago], you might want to call the AIDS Foundation or Test Positive Aware Network. If you're newly diagnosed, call the HIV hotline and ask for resources.
Ask for help. You won't get help unless you really ask for it. Realize that you do need help -- that doesn't just mean getting medication with a doctor. You need emotional support. You're dealing with a life-changing disease, and to try to tough it out alone is not very smart.
By the way, how did you feel when you went to your first support groups? I bet it was hard at first to be a straight guy surrounded by a lot of gay men.
I felt discriminated against. Sometimes I still do. But you know what? I realize that I never really had animosity toward gay people, but I did have some certain biases and prejudices, and they came out when I was newly infected. I had some hostility against gays when I was diagnosed, because I'm thinking [about them], "Oh, this is why you got this," and all these kind of crazy thoughts. That will happen when you're sick.
But this disease has really brought me in partnership with the gay community. It's weird. When I had my wedding, I invited all my friends, which is strange, because I live in a kind of conservative neighborhood.
And all your friends were gay?
Yes. I had about 10 males there -- or friends. Yes, maybe 10, 12 males. I think only two of them were straight. My preacher, minister, he was gay. It made for a very interesting wedding. Especially [since] most of them are African American.
They're not used to this?
No. Not at all. I had one guy show up in a dashiki and a purple hat, and people were just amazed. They were amazed that everybody had a great time. And that's what we wanted to pull off. We wanted to bring cultural differences together, in a way, because me and my wife came from completely different backgrounds, and we pulled it off. We got people from my side and her side. Everybody that came, they ate, they drank, they danced, and they had a great time, which is a beautiful thing to see.
So you have acculturated to the gay world?
Right. You know, you get to the point where -- I didn't realize it until the wedding that most of my friends are gay -- but you get to the point where they're not gay anymore to you. They're just who they are. Like Jerome is Jerome. He's not Jerome-the-gay-person. He's just Jerome. He's got some good qualities about him. So you kind of lose sight of the fact that the person's gay, white, straight. It's like Alcoholics Anonymous: you're dealing with people that you have something in common with, and so you kind of focus on those similarities.
What do you think is a greater stigma in the African-American community -- being a former addict or being HIV positive?
I think being HIV positive.
Is the greater?
I think so. It depends if you're in secret about it. Now, that's changing. I think it's catching up -- substance abuse is about equal now. But especially before, if you are secretive, you're hiding it, people will start whispering about it. They find out here. That happened to me. Everybody knew I was a drug addict. But I had people coming up and saying, "Oh, so-and-so said you were HIV positive." And the way they would look at you: It was just a thing that brought a tremendous amount of shame. Again, you're trying to deny it. I was in my truck one day, and a girl asked me, "What's all those pills in there?" "Oh, that's my sister's medications, you know." Or they'd stand by you, looking at a person: "That girl, she's HIV positive." Oh, man. You tried to act like you were shocked. It's a lot of weight to carry. I don't have that weight now because I'm over it. I think it didn't hold that power over me anymore. So now, if I was to go back, the substance abuse would be greater for me now than anything else. But there are huge stigmas on both of those. One of them, you just kind of know. You know when a person's addicted. You can see it and it's kind of out in the open. With HIV, it's more hidden, and people whisper about it.
One of the things I wanted to discuss with you is the many myths about HIV's history and treatment. I know there are a lot of myths everywhere, but in the African-American community there's a great distrust of authority, and there are many myths about HIV. How do you deal with it? And what kind of myths do you think there are?
Well, the first thing that is scary about it is, if you have HIV, how do you transmit it? I'm sure most people have heard that it's transmitted through sex and injection drug use. But there's still that underlying fear a lot of people have about HIV transmission. They worry, "If somebody's ill and they sneeze, can I get it?"
Another perception is that if you have HIV or AIDS, you might be dying. I had some people, when I would tell them I'm HIV positive, say, "Oh, I'm sorry. How much longer do you have?" A couple of years ago, on World AIDS Day, I did a live radio show. I was talking about -- I was actually trying to put a positive spin on it, because there was so much dread with the previous guys who said, "Oh, I'm dying, I'm sick." I said, "No, I'm living my life here. I would advise you not to get HIV. But if you've got it, you have just got to live your life." And she would ask me, "Well, how much longer do you think you have?"
I don't think in those terms. I don't think about when I'm going to die. I'm thinking about living for today. I think less in terms of what I cannot do, as what I can do. That's the kind of message I try to get across, with people who limit themselves, and allow other people to limit them as well.
Of course, certain things, you know, being realistic, I can't do. I wanted to be a truck driver. But if I go on the road, I might get sick, and I don't have access to medical care. So I don't want to do that. But I can be realistic. I mean, well, I can do this: I can go back to school. I can get a degree. I can work in social service. I can keep my body healthy through exercise.
I can do this. I can do this, and I can do that. As opposed to: I can't do this, I can't do that. I'm sick. A lot of it is attitude. You know, where's your attitude at?
What do you tell people if they say, "Well, how do you know HIV causes AIDS?"
What I tell them is that there are a lot of myths out here. We have -- especially African Americans -- we have reason to be mistrustful, especially of the government. You think about things like the Tuskegee experiment, where people were used as guinea pigs, just to see what could happen if they go untreated. Those are highly unethical practices.
Today is different. We do have a lot of legislative bodies in place, or safeguards, in any kind of clinical trial study. But there's still a lot of suspicions about where it came from, and it's a conspiracy, that HIV doesn't cause AIDS.
I'm telling you this: Look at the facts. Look at the research. Don't listen to the hearsay, and what you heard your Uncle Joe say, and all this, that and the other. Look at the medical evidence.
I'll tell you right now, when I wasn't taking medications, or when the medications weren't working, I got sick. I had a high viral load. Now I'm undetectable because of taking medication.
Now, that's not to say I'm naive, either. You know, I have some mistrust myself. Sometimes I wonder if we're holding back a cure for this. It's much more profitable for some companies, pharmaceuticals, to take care of a person long term, because they have to keep coming back for meds.
But again, it's just a story. Now, I'm not saying that's true; I'm just saying I'm not naive, and I try to look at all possibilities. Sometimes you wonder, though.
But the bottom line is, I don't focus too much on any of that. I focus on taking care of myself, taking care of my health and emotional self, and trying to help others. That's what I focus on. A lot of people spend way too much energy trying to figure out where this virus came from. Was it man made or not?
When dealing with all these myths about HIV, I always go back to the analogy, if you own a house and the house is on fire, you're not going to worry at that moment about how the fire started. You're going to focus on how you're going to get the heck out of there. That's the kind of perspective I take on it.
So the analogy is, then, if you're HIV positive, the way to put out the fire is to get the treatment.
Right, get the treatment.
Then you could argue about all kinds of stuff. But just get the treatment.
Get the treatment first. Get the treatment. Get your T-cell count to rise. Get your viral load down. Then you can start looking around for other alternatives. If you want to go on some alternative, talk it over with your doctor and see. But don't think you're going to eat some wheatgrass or something else, and the HIV is going to go away. You have to do what you have to do to take care of yourself first -- which means getting HIV treatment.
With HIV, a lot of times the doctor's learning, too, because when HIV first got treated, the only thing they had was AZT [Retrovir, zidovudine]. It was treated as a monotherapy, which did not work. They were overdosing it, and people were getting sick, not only of HIV. People were actually dying from the overmedication of AZT. That's because it was new and research hadn't been done -- [nobody knew] what HIV was, or how to deal with it.
But as we go along, we have made tremendous strides in a short period of time. We're finding things that work. Now, these things that work, they still have side effects. So get out there and exercise and try to eat somewhat healthy. I have a huge belly now; that's the lipodystrophy. But I have hope that because the medications are continuing to evolve, hopefully one day, we won't have to take medications on a daily basis. But for now, that's just a fact of life.
And you're busy. I mean, you're certainly not lying down.
Right, right. I think that's the secret. It's all about balance. Being busy is very therapeutic for me. I don't get depressed because I'm doing something productive. But you have got to be careful there, because of the tendency -- especially coming from a substance abuse background, or an addictive personality, if you want to call it that -- to overdo it, go to the extreme, and get burned out. You want to be right in the middle; you don't want to go to either extreme. The most important thing is to take care of yourself, because if you don't take care of yourself, you're not going to help anybody else, either.
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