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How did you find out you were HIV positive?
It was back in 1994, and I was working as a salesperson in a motorcycle shop in Harvey, Ill. My supervisor noted that I had a very foul smell on my breath. Also, I was getting sick, having night sweats.
With the constant pleading from my mom and my girlfriend to go get it checked out, I said, "No. It's just a cold. It will pass." It lingered on for over a month. So I finally decided to go in and that's when I received the diagnosis. I stayed in the hospital for two days. The second day, I was diagnosed with HIV.
What did they first think it was?
They thought it was all kinds of things. When I think about it, it was actually more than two days. They did a bone marrow biopsy, which was extremely painful. They knew something was wrong with me, but they couldn't put their finger on it. They finally decided to do an HIV test. I knew something was wrong when the doctor came back into the room. Just looking at his face, you knew something was off. I still remember what the exact words were, "I'm sorry, Mr. Braxton, but you have AIDS."
At that point, it seemed like my life just came to a screeching halt. That was definitely a turning point in my life.
How long do you think it takes to process an HIV diagnosis?
To fully process a diagnosis of HIV, it took me several years. That's only because my grieving process was kind of hindered through drug abuse. So I never did come to terms with that immediately. It took a while, until after I got my addiction under control. Then I could start processing my feelings of living with HIV. Before that, I tried to numb it out, and just didn't deal with it.
What drugs were you addicted to? How long were you addicted?
My drug of choice, I guess, if you want to call it that, was crack cocaine. I became an alcoholic at an early age. I wasn't even aware that I was an alcoholic, but I was, looking back on it. And that was just to overcome severe shyness, to be able to have normal relationships -- a girlfriend and everything else. Well, the alcohol gave me that. But it progressed, and I started dabbling with cocaine in about 1985 or so. I got really heavily addicted to it around 1992. It was only up until five years ago that I was able to break that habit.
You were diagnosed with HIV at what point in all this?
At the point I was diagnosed, I was heavily dependent upon crack cocaine. I lost many jobs due to alcohol and drug addiction, including being a Chicago policeman.
My crack cocaine addiction really took off when I was driving trucks. I was kind of proud of myself that I could go into any city and, within a half hour, find some drugs. That was actually true -- 45 minutes, tops. When you're dealing with drugs like that, you have to look to somewhere to get some kind of self-esteem. Although that's really twisted, I kind of prided myself on being able to do that. Not the most healthy way to look at it, but that's the way I did it.
How long were you a Chicago policeman?
I was on the force for three years. That was a fun time for me. I didn't really take that job seriously. I think I did always want to catch a burglar, which [never happened]. I did sincerely want to help people. Other than that, the job for me was just a way to have fun. I was young, and I lived for the moment. I was extremely shy, coming up. And then I discovered alcohol. It brought me out of my shell. I was also into fast motorcycles and girls, and the job just seemed to foster that kind of lifestyle. So to me, it was just a fun time. I was an alcoholic, but at that time, I had very few consequences. That's why I didn't know I was an alcoholic -- because it was all fun and games for me.
There was a little voice in the back of my head, though, that told me that someday, I'm going to have to pay for this. I kind of ignored it, but it was just a constant small voice in the back of my head. I really wasn't being responsible; I was just out to basically have a good time.
What advice would you give someone who has just found out that they are positive?
If someone came to me and told me they had just found out they were HIV positive, the first thing I would say is, "Allow yourself to grieve." You're going to feel grief. You're going to go through a process, and I'm just saying that it is a process. You'll go on the dark side of the moon, but you will resurface. The main thing is to get linked with support -- you need emotional support. If it's drugs that you've been abusing, actually, you need help in that area. And you need medical support. You need to stay on top of this.
But I would say, just allow yourself to grieve, and then, when you get through grieving, realize that HIV/AIDS is no longer a terminal illness. You're not going to necessarily die -- if you take care of yourself. You can live a -- whatever a normal life is, I don't think it's a really normal life, but you can have some semblance of that.
It's going to take a lot of work, and a lot of effort. It's definitely going to change you. ... There are lots of ways it can actually change you for the better. I know it's hard to believe, but that's the way it was for me.
Do you think it's harder for African Americans?
Oh, yes. Definitely. African Americans are dealing with so much weight on their shoulders -- social, economic disparities, and a higher stigma attached to HIV. When you think of HIV, you think of homosexuality and that's a big stigma within the African-American community.
We also have a lot of our young African-American men in the prison system. And things happen in there, and they can come out -- I certainly believe that we have a lot of African-American men that may have sex with men, and live somewhat of a double lifestyle. [They] identify as straight -- and in my heart, I believe they are straight, some of them. But for whatever reasons, be it drugs or incarceration, they may cross certain lines. There's a lot of guilt and shame attached to that. I think it's one thing that's not talked about enough. Look at that not just mentally; look at it scientifically, and put prevention methods in place to deal with that population. We don't even know how prevalent it is, because everybody's afraid to touch it.
You mean the "down low," as they call it.
Yes, if you want to call it that. When you use this term, it's not just about African Americans. It affects all ethnicities: the Latinos, they have this machismo going on. Caucasians, as well. But that's one thing that we really need to address. And I don't think we're doing enough about it, because there's so much emotional energy charged to that. You hear a lot of gay communities speaking about, "Well, they're not really one of us. They don't want to be treated. Leave them alone." And [there is] a lot of hostility from women [about men on the down low]. So it's a very sensitive issue. What we need to do is try to look at HIV prevention and care [with] a non-judgmental attitude.
How do you think you got HIV?
I got HIV from just being wild and crazy. I didn't inject drugs. Half the time I was drunk, I was heavily addicted to prostitutes. Some of those prostitutes might have been men in disguise. Any time you're going out at night, and you're having sex with five prostitutes, that can be a major risk factor, to say the least. ... At 18 years old, everybody was having sex, and I was scared to talk to girls. I only had one or two friends in high school, and no girlfriends. Alcohol brought me the girls. Once I started having sex, I just took it to the extreme. It was a form of addiction, in a way -- you know, the sex, the drugs and the lifestyle that goes with it. My behavior was pretty wild, to say the least.
Do you think it's easy for African-American women to demand condom use from African-American men?
No, I don't think it's easy. It's easier said than done, depending on what culture you're coming up in, depending on what you're trying to do. For some women it is a lot easier than others. You take Africa: that's extremely hard for them to do that culturally, there.
But you also take it here when, for instance, women who are addicted to crack -- their motive is to get to more drugs, plain and simple. They don't care what the costs are; they just want to get another hit, right now. They know that if they're going to turn a date with a John to get some money, and then they ask him to put a condom on, they're going to probably lose that money, because [he's] going to go to the next [woman].
So that's a huge aspect here. All these things kind of tie in together. The women -- it depends on: Are they having multiple sex partners? What's the situation with their significant other?
So we're all over the map. I don't think there's really an answer to that. But I think in many situations, condom use is difficult to negotiate. One of the things that could empower women, until they come out with microbicides, is actually thinking about using the -- some people call them female condoms. That gives some kind of empowerment back to the woman. She doesn't have to request that the guy use a condom; she could already have one in place. If I was a woman, personally I may be thinking along those lines to protect myself.
Did any of the sex workers that you went with ask you to wear a condom?
Only if they knew I was HIV positive.
But you didn't know at the time.
Well, I did after a while. After '94, I was still addicted to the drugs, and I was still addicted to prostitutes. The only thing is: I didn't really have a lot of sex then. Not that I was dangerous, to say the least, but I was trying. At that point, the cocaine was more important than the sex. As many people know, when you're using cocaine, after the first couple of hits you're no good, anyway, because of erectile dysfunction.
So I didn't do too much of it, anyway. In a sense, that was kind of a blessing in disguise. To be honest with you, had I been able to function fully, I probably would have caused some serious damage.
That's just being totally honest, because when you're on the drugs, you're not thinking in your right mind. You just want to forget everything and experience the moment. That cocaine -- it kind of really tore me up. When you take it, you become extremely paranoid. You can't hardly talk. You can't have sex. All you can do is just kind of sit there and stare. For the life of me, I can't figure out what the fun was in that. But that's what the reality was; it was a living hell.
How did you finally manage to get off drugs?
I had tried treatments several times, and going to treatment [finally worked].
Which treatments did you try?
I tried Haymarket Center. I went in there the first time, and I did a 28-day program. When I came out, they advised me that I needed long-term support. I didn't believe them. I said: I'll just go to meetings, I'll be all right. That lasted about a week.
The second time, I couldn't stand it. In the middle of the night, I walked about 10 miles home, because I didn't have any carfare, and got high that night.
The last time I went to Haymarket Center, I didn't go in because I wanted to get sober. I went in there because I owed a huge drug dealer on the South Side of Chicago a lot of money. He knew where I lived, and I had to get off the street. That's how I ended up back in treatment. While in there, I decided, well, as long as I'm here, let me try to make something of it. I started applying some of the principles that I learned in there, and tried to make application of them. That was a key for me.
When I got out, instead of staying in my old neighborhood, I went into a supported living program called AIDS Care. With the extra support -- not only peer support, but staff support -- I started branching out at Test Positive Aware Network and other agencies. I had to go to support groups and 12-step meetings, and I got a sponsor. I started getting involved in some HIV advocacy work, and slowly but surely, my self-esteem started coming back up. That's how I got sober. That was about five years ago.
Tell me about the housing. You didn't have money. How did you find out about a place that would house you and pay for all this?
When I got out of the treatment --
The treatment was free, right?
Yes, that was free. They had a specific funding source with HIV. But when I got out, I knew I had to keep busy, because I wasn't working. I couldn't go back to my job to support my habit -- which was delivering pizza. I was making about $100 a day. I could not risk going back there because, although I could make some money, there was just too much temptation. The whole scene -- I wouldn't have lasted.
So I tried to fill up my time. I started looking for services for people with HIV, and I found out about these massages that they were offering on the North Side. I never thought I wanted to live in a supportive environment. But I went there. It was a beautiful place on North Lake Shore, right off the lake. It's a mansion, as a matter of fact. There were a lot of nice people there. I started going there every day, for massages. Anything they'd offer in the community, I would go for. I happened to be there four or five days a week. That kept me sober.
Were all these free services?
That was all free at the time. Now, you can't get anything. So much has been cut, as far as funding. You'd be hard pressed to find that kind of service today. I came in on the tail end of it, when things were kind of good. I looked at the place and I applied for it. It took a while to get in, but I finally got in. I moved in, shared a room with another person who was a nice person. I got a chance to stabilize myself, to sit still for a while, and to start working on the spiritual side of me. I also tried to start getting involved in different HIV advocacy work.
How long did you live there?
I lived there for about two years -- almost two years. Then I applied for Chicago House, where I work now.
What is Chicago House?
Chicago House is an agency that typically supplies housing, case management and substance abuse counseling for people with HIV. They own four properties, one which is a treatment facility, and two for families -- for people that have families. One supportive living residence and one independent living residence, which is a studio apartment. [In the independent living residence] you have minimum case management. You probably have someone around there three or four days a week -- as opposed to supportive living, where you have case management around the clock. It just basically becomes your own apartment.
That was a stepping-stone for me -- to go from supportive living into independent living. I doubt I would have made it, going straight to independent living, because I wouldn't have had any support, any restraints. I probably would have relapsed. It was a nice stepping-stone for me, to go from there.
While there, I went back to school and I got my bachelor's degree. I did about a year term with AmeriCorps, with the National AIDS Fund.
How did you pay for school?
The school, I paid through student loans, grants, Pell grants, just a financial aid package ... all that good stuff. I already had about two and a half years of college at Chicago State, which I did in the early '70s, so it wasn't long before I was able to graduate. I thought I wanted to go on and be a certified alcohol/drug counselor, so I first went to Harold Washington. I did an internship at the place I got sober, Haymarket, and found out that it wasn't for me. I continued school at National-Louis and got a degree in Applied Behavioral Science.
Right after graduation, I went to apply for an AmeriCorps position, which is a volunteer position where they do pay you a stipend. I did a year term with AmeriCorps, and I served at the Haymarket Center as a health educator.
The Haymarket Center -- isn't that one of the largest treatment centers in Chicago?
I never got numbers on that but I would go out on a limb to suggest that I strongly believe it's probably the biggest treatment facility in Chicago. Everybody knows where the Haymarket is. I was there three times as a client. I was there two more times -- one time I did an internship for the CADC, and another time, I served a year there as an AmeriCorps worker. I have got kind of a long history with Haymarket Center.
Now I'm going to ask you some questions about your health since your diagnosis. Did you go on HIV treatment immediately?
No, I didn't. When I was diagnosed, I had an AIDS diagnosis from the outset. In a way, that was good, because I didn't have to worry about going from HIV to AIDS. I was already there.
What was your CD4 count?
Sixty, at that point.
Did they do a viral load back then?
No, they didn't do viral loads, but they did do a T-cell count.
So you had 60?
Sixty T cells, right. Because of my drug addiction, I could not stay adherent to any of the HIV medications. When I would go to the doctor, he would put me on a new regimen and I would fill it. He would say, "Are you taking your medications on time?" I would say, "Sure," because I was ashamed of my drug addiction.
But the fact remained that I would come into my house and know that I had to take my medications, but I had $20 to $30 of cocaine in my pocket. I could not wait to take the cocaine or I'd start vomiting. That's how strong my addiction was -- just in anticipation. Then, once I took the drug, I was pretty much dysfunctional. That's why I didn't have a lot of sex at that time. I would just stare at the walls. That's how it was for me.
Next day I would double up, take the medication twice. Of course, that's not how HIV meds work. I would get on each new trial study that came out. I would get on it, because I was failing. Within a few months, I would be resistant to those medications, as well.
Even at this point, I would end up in the hospital two, three times a year, for pneumonia, histoplasmosis and all kinds of crazy things. My blood pressure at one point was 70-over-something. I needed blood transfusions. I came close to death many times. My parents would come to see me in the hospital, and they would look at me and cry. I would think, "What's wrong with these people?" You know, I'm not getting ready to "check out." But I was very close to death.
In some kind of way, I would seem to recuperate. It would take a long period -- six months -- and I'd be back to [the way I was before]. I'd go out and get high again, and within a few months I'd be back in the hospital.
At one point, I even ended up in a nursing home. I did notice that one time, I was sick in the hospital and I could barely walk, couldn't do a push-up. I got angry, and I started doing bicep curls with the desk chair in the hospital.
When I would get healthy, the days I wasn't using drugs, I would try to put some kind of exercise routine in my life. After I got sober five years ago, I rarely went to the hospital. The drugs I was using, the cocaine, etc., were killing me quicker than the HIV -- much quicker. The combination of the two, really.
When I stopped using drugs, for some strange reason, I didn't find myself back in the hospital. I would continue on with my exercise program and try to build my body up. I think it helped me because, even though I was sober, the HIV medications still weren't working. My viral load continued to escalate to over a million copies, and my T cells dropped down to one. I didn't have much hope, but I did do a lot of exercise and cardio strength training. It seemed to keep me relatively healthy.
When the researchers came back from Barcelona, Spain -- there was a huge international AIDS conference down there -- I heard about the new drug, Fuzeon [enfuvirtide, T-20], and that's when I got a little hope in my life. I started thinking more long-term. That's when I actually decided to go back to school.
So what was your regimen once Fuzeon was approved? Or were you in a clinical trial?
So you were getting the drug for free?
How were you getting the rest of the medications?
I was getting the rest through Medicare and Medicaid. I got right into SSDI before then. It didn't take me long.
SSDI is Social Security disability?
Right. A lot of people have to fight for it. But I was so sick, they said, "Y'all give that guy Social Security. He won't be around long anyway." So it didn't take long for me to pick up SSDI. That's how I paid for my medications.
What was your regimen? Fuzeon with what?
At that point, I had been on just about every drug out there. I don't remember. If you name it, I probably will know it. Right now, even now, I'm on experimental drugs. Actually, I'm just coming off of one because it just got approved by the FDA [U.S. Food and Drug Administration]. But I'm still taking Fuzeon.
Do you take darunavir [Prezista]? It used to be called TMC114.
Yes, that's what it is. Right. That's what I'm on. I just came off the study, so this is the first time I'm actually going to have to get that medication through a prescription. But with the combination of that medication boosted with Norvir [ritonavir], with the Fuzeon, and Epivir [3TC, lamivudine], I'm undetectable today. And my T-cell count is hovering right around the 200 mark.
You're undetectable for the first time since you were diagnosed in 1994.
Right. My viral load just continued to escalate over the years. Just until about six months ago, or six to eight months ago, when I became undetectable.
How's your adherence now?
It is about 99.3 percent. That's a guess. I might miss a dose once every three, four months; I might forget a dose. But that's not bad. I don't miss medication because I set a routine, and once you get into a routine ... I just do it pretty much without thinking. It just becomes a part of your life. But the Fuzeon is a little challenging, because it takes time to mix it. I have to get up extremely early to make it to work, so I don't have time to mix it in the morning. I mix two doses at night, one which I inject. I put the other one in the IV, in the refrigerator, and inject that in the morning.
How did you find your current doctor? Did you have to look hard?
No. A lot of things in my life seem to kind of fall in my lap. I don't know why. I was going to the CORE Center for years, which is an excellent facility.
It's called the CORE Center?
Is it affiliated with a hospital?
Yes. It's affiliated with Cook County Hospital. That's the biggest public HIV clinic in Chicago, I believe. I'm pretty sure it is. They service a lot of people. The only problem with the CORE Center is, it's an all-day process. When you go there [for] a doctor's appointment -- especially if you're going to get your medication that day -- you might be there eight hours.
I was dating a girl at that time who was going to NorthStar. I had Medicaid insurance. She said, "Well, if you have got this, you can go to the NorthStar." I said, "Well, no. I want to stay where I'm at because this is what I'm used to." Anyway, she convinced me to try it; and that's probably one of the best things I have ever done.
What is NorthStar?
It's the largest private HIV clinic in Chicago. So you do have to have insurance to go there. Medicaid is fine. I was on Medicaid at that point.
They take Medicaid?
At the CORE Center, you don't need anything -- insurance, Medicaid, anything.
Right. You don't have to. They'll take it if you have it.
You just walk in and they'll take you.
Whereas, at NorthStar, you need to already be in a program.
Right. You need some kind of insurance group with SSI.
Right. But the advantage with that is a couple of things. Number one, they are always on the cutting edge of HIV. Some of the doctors there are HIV positive. They write articles for TPAN's magazine, Positively Aware. They are always on the cutting edge, and they are always the first to get these studies out. Also, when you go there, the huge advantage is, if your appointment's at 9:15, by 9:30 you're in the doctor's office, and by 10:00 you're on your way home. That's a huge advantage.
Right now, I'm waiting to get on another study. I just came off of one study, and I'm going into another study, which is a growth hormone to inject into your belly to make the lipodystrophy in the belly -- fat tissue around the belly -- dissipate. So I'm really looking forward to that one.
We just covered a new study about that. So, is your doctor an African American?
No. No, he's not.
Do you think it matters?
No, it doesn't. It's funny, because I never even gave it any thought till just now. You know, the most important thing is the relationship with your doctor, the development of trust. I'm getting to the point now where -- I just got married, August 19 -- I want to get my wife -- she's HIV positive -- into some kind of insurance. I really can't afford to bring her into my insurance, which is a PPO; to do that out-of-pocket is $400 a month, just for the premium, not counting the medications and co-pays.
You're on private insurance -- not Medicaid, then?
Right. Now I'm on private insurance since I went back to full-time employment.
Does NorthStar take Medicaid as well as private insurance?
They take Medicaid, they take PPO, but the only thing they do not take is HMO. I was thinking about switching to an HMO so I can afford to put my wife on it. But now I'm thinking about a different strategy, because if I went to an HMO, I'd have to leave that clinic. They have been very helpful for me, taking care of my health. I would hate to go somewhere else.
Does your doctor treat you like a partner, in terms of making decisions about your health?
Pretty much. He'll ask me, do I want to do this, do I want to do that? You know, we'll talk about it and come to some kind of decision.
How long have you been seeing him?
It's been about, I would say, three years. About three years now. I'm really comfortable with them because they know my history. I'm prone to respiratory infections and once I start coughing, and I start coughing phlegm -- usually in the wintertime -- if I don't get really aggressive with it quick, then I can end up in the hospital. They know that, so when I start getting my cough, I go in there, and they'll give me some antibiotics. And hopefully it will knock it out. But if I went somewhere else, they might want to run tests, wait two or three days. When that happens, I don't have two or three days; I need to act right now in order to keep that from escalating.
Since I've been diagnosed, I have become much closer with my mom. When I was diagnosed, I didn't hold back. Within 10 minutes of me knowing, I told my mom, and my family. My father was living at that time; he's dead now.
What did they say initially? Were they cool about it?
They were cool in front of me, but I'm sure it hit them like a ton of bricks. They tried not to show fear in front of me, because they didn't want me to worry. They were kind of walking a tight line. But when I would get sick -- and I did get sick back then -- my mom would come out to see me, almost on a daily basis. I was so sick; I would go weeks without eating food. She was always there.
She knew you were addicted to crack cocaine?
Oh, yes. Yes, she knew it.
Where did you grow up?
I grew up on the South Side of Chicago.
In what kind of neighborhood?
An African-American community. I grew up in a middle-class society. There were gangs there, but it wasn't as bad as some other neighborhoods. But I found those other neighborhoods. I didn't hang out where I grew up, and where my parents lived. Of course I would go into the drug-infested communities; that's where the fun was. You know, run anywhere from the South Side to the North Side or West Side. I was doing things I wasn't supposed to be doing. I was kind of making a mess of my life back then.
What kind of work did your parents do?
Well, my mom worked for years at the Illinois State Employment Service. When she retired, she was an adjudicator for persons who were denied unemployment. She would adjudicate those cases. My father worked for 18 years as a CTA bus driver.
CTA stands for Chicago Transit Authority?
Right. After that, he had a short term with a Sears store, working as a repairman for washing machines, but transitioned for another 18 years with IBM, working on computers. He had a long career.
You have grandchildren, I hear.
Yes, yes. Isn't that something? I have one grandson.
Were you married?
I had a relationship. We weren't married. But I had two kids, and when I was diagnosed in '94, of course, I thought I was dying. I wanted to have a conversation to prepare my kids. I had no clue how to do that. I think I gave way too much information at that time, because they were young. I can just remember my daughter crying, saying she didn't want me to die. I was trying to prepare her for my death. But the funny thing about it: I didn't die.
It's just amazing that I now have a 4-year-old grandson. He's a beautiful kid. My son has grown up. He's working full time. He's going to college. He's getting As and Bs. My daughter is doing the same -- plus, raising my grandson. They really turned out well, in spite of me.
I did the best I can in raising them, but it wasn't too good. I would see them on the weekends. They would come over some weekends. But many days, I disappointed them. That was one of the most hurtful things of all during my addiction: telling them to come over for the weekend, and then we're going out to the show, to the movies. When they would get there I was on the street, and just never made it home.
I would come home on Sunday night, beat up on, with no money, just in a tremendous amount of emotional pain, especially where my kids are concerned. Those are some of the worst memories of my addiction.
Now you get along with your family?
Yes. Everything's good. Two beautiful kids are grown up. You know, I know I've had to face the cycle of my behavior, but my family haven't shown it outwardly. They've always respected me, for some reason. They've always given me a tremendous amount of love. Recently, they were at my wedding, which was the greatest thing. I had my family out. I moved out of Chicago. I moved up 63 miles north.
Tell me about how you met your new wife.
That was interesting. I was in a relationship, which was an unhealthy relationship, while I was sober. It was kind of a codependent relationship, and it wasn't going anywhere. I started getting bored, and I just started playing around with the HIV dating sites on the computer, not that I thought that anything would come of it. Matter of fact, my impression was that people that dated through the computer just didn't know how to talk to a woman.
I just started, you know, just for fun. I met some interesting people there, one who turned out to be kind of a pen pal. But then I got one message from a lady, and she said she was interested in my profile. I e-mailed her back, and she e-mailed me back, and I e-mailed her back. Next thing I know, I'm getting up at three or four in the morning, to run to the computer to see if she e-mailed me. I'm running home from work, trying to check my computer. We never stopped communicating. We have over, maybe three, four thousand e-mails. Two months later I actually got to talk to her on the phone. In another couple of months, I actually met her in person. We just hit it off and never looked back.
At that point, I was living in Chicago House, in the independent living program. I had just taken the job that I have now, which is a full-time position. I had to move out of Chicago House, because I couldn't be a client and a staff member at the same time. Around that time, I got engaged; the time was right. I just moved out of the city to McHenry. Now I commute every day, back and forth to work.
Did you ever imagine this would be your future?
Not at all. Not at all.
When you were addicted did you ever imagine you'd end up doing what you're doing now and living where you are now living?
No, not at all. Definitely not. When I was younger, I always got good jobs. My goal was just making money, having a good time, enjoying life. At the height of my career -- which I thought was going in the right direction -- I was a Chicago policeman. I was making good money. I had a lot of girls. I had money, my own apartment, but I was having too much fun. My world basically just crumbled, especially with the cocaine addiction.
I never thought then about going back to school. Back then it was just more like surviving. You want to not get sick, and you want to get your drugs. That's what I was doing on a day-to-day basis, not ever thinking about going back to school or work in anything full-time. I thought about maybe one day driving a truck on the road again, or a cab -- something like that.
When I got sober, things just started falling into place. When things started happening like that to me, I realized that I was limiting myself. I was putting limitations on me. I'm actually even looking further now, going to get beyond my bachelor's degree and working full-time. I'm on the I-4 employment program, which helps people go back to work who are HIV positive. That's what I'm working on now. But right now, I'm going for a master's degree in nonprofit management. I'm taking a night course. As a matter of fact, I'm going to school tonight.
I'm also trying to get personal trainer certification. My goal is to help people with HIV and/or the aging population reap the benefits of exercise. I believe that it was very instrumental in my health, especially when the medications weren't working, and I want to pass that on. I want to create a program with an existing organization, or even start my own nonprofit organization. Those are my goals now.
How many hours a week do you devote to exercise?
It varies. I was going to work out last night, but I thought I was coming down with a cold. It turned out to be allergies. I try to set a schedule now, because I have a full plate, with full-time school and full-time work. I try to stretch it out.
I'll come home and normally try to work out about an hour a night. That's my goal. In actuality, it turns out to be about maybe three nights, doing it. Monday through Friday I'll work out the cardio mixed with some strength training. I kind of go all out on the weekend, one day out of the weekend. I might go up there for four hours; that's healthy for me. Because before I was working, I would actually work out about four hours per day -- which is too much, you know, but I was kind of addicted to that, too.
Now I'm trying to moderate it somewhat. I run down, do a little cardio, and the next day I'll do some strength training. I'll try not to do it on the weekdays more than an hour, because I have to do some studying at night and prepare myself for work the next day. It's just a matter of time management now.
I want to go back to asking about your family. How do you decide whether to disclose your HIV status to somebody? Do you always disclose?
For me, I am totally open with it now. It was a long process for me to get there. I told my parents and my immediate family, my girlfriend, right away. That would have been way too much pressure on me, trying to hold that in and deal with this HIV. So I told them. But it took many years before I would go out, aside from my immediate family. I finally started going to TPAN Agency, where I could talk to other people like me.
I started doing groups. I realized it was empowering, talking about HIV within the HIV community. I was good at that, but I wouldn't talk about it outside the community. But when I was going for my bachelor's degree, we had to write a mission statement. In the mission statement, I talked about working with people that are HIV positive. That's when I disclosed my status for the first time publicly, in front of a non-HIV setting.
When I did it, I read my mission out loud, actually sweating bullets, I was nervous. I got a lot of support from my classmates, which surprised me. No one ostracized me. From that point on, I just started to learn to open up.
Right now I'm to the point. I don't go around broadcasting my HIV status, but I don't hide it either. If somebody came up to me and asked, "Are you HIV [positive]?" I'd just tell him the truth. I'm to the point now where I always -- I would never say that I don't care what other people think about me -- but right now it's less important what other people think about my HIV status. Right now, it's just more important what I believe [about] myself. I don't have any qualms about disclosing that ... if it's an appropriate situation. I'd never go into a room of people and say, "Hi, my name's Greg Braxton. I'm HIV positive." I have to have some kind of a reason to disclose that.
What's the best response you have ever gotten from telling someone?
The best response was -- questions. That was the best response. They want to know how it is to deal with HIV. They have a brother or cousin who's HIV positive. They want to know how to deal with him. That's the best response for me, because I'm using it for something positive, maybe to help somebody else.
I love it when people come to me and tell me: "You know, I have a cousin who came to me, and I don't know what to tell him, where to go," and I can give them some kind of guidance. Or if they just want to know about it in general. How do you get it? Those kinds of questions. It opens up dialogue. The more you talk about it, the more it actually reduces the stigma that's attached to it.
When people start seeing me as Greg -- and not a person with HIV, but seeing me as Greg -- that takes the power away from the stigma of HIV. That's what's important for me: to chip away at the stigma. Because that's what fuels it. That's what fuels HIV power. This is just like addiction. If you don't talk about the addiction, if you hide it, it's going to have all the power in the world. If you start exposing it some kind of way, it loses the power.
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.
Click here to e-mail Greg Braxton.