Table of Contents
Tell us a little about your life.
I currently live alone, but I'm very close to my mom and my mom's side of the family. I am recently re-establishing a relationship with my father, and I have a brother and sister by my dad as well, so I'm re-establishing those relationships. I've been an associate editor at Positively Aware, an HIV treatment journal from the Test Positive Aware Network (TPAN), since June 2005, and I have a kitten. His name is Hemphill, for Essex Hemphill, the great black gay author and AIDS activist who died of AIDS in 1995.
What's the community like where you live?
It's very diverse. I live right around the corner from TPAN -- different kinds of people, economic ranges, class ranges. I can walk down the street and have people offer to sell me crack and have people ask me to buy it for them.
Where did you grow up?
On the south side of Chicago. It was difficult because I've known all my life that I'm attracted to men, and, at the time, I was interested in keeping it a secret and hopefully ridding myself of those thoughts. However, even through that, I was this very creative, active, outgoing kid.
What did you want to grow up to be when you were a kid?
I wanted to be an audio engineer, specifically for Janet Jackson.
What kinds of work have you done?
I was the head cashier for Sport Mart when I was in high school, and I worked at McDonald's and Subway. Before I was at TPAN, I was a claims adjuster for Allstate. I was also the manager for a skating rink, which was probably the most fun.
What kind of work did your parents do?
My dad was a mechanic, although he wasn't really around. Now he's an electrician. For the majority of my youth, my mother was a stay-at-home mom, and my stepdad worked at the post office, and he took care of us. Then she went back to school, and now she's an administrative assistant for an energy company.
Who are the most influential people in your life, both professionally and personally?
Charles Clifton [former Positively Aware editor and executive director of TPAN, who died in 2004] was definitely one of the most influential people. Also, my grandfather. My mother is very influential, even in those ways where I'm like, "I'm never going to be like her." That's influential too. Dr. David Malebranche -- I'm just smitten by him. Dr. King, definitely. People, period, influence me. Because I am a social-work major, I study people, and I'm changed by people's behavior.
What activities are you involved in at the Test Positive Aware Network?
Aside from being an associate editor, I also helped organize an outreach campaign known as TRADE -- Teachin', Reachin', Advocatin', Demonstratin', Empowerin' -- geared toward brothers who get down with other brothers. We are looking to open up the dialogue about safer sex, safer drug use, and just greater responsibility. From that, we have developed a Chicago Black Gay Men's Caucus that is all encompassing of the black gay or same-gender-loving experience. We have business owners, researchers, activists, advocates, the health department, community-based organizations, and club owners. Promoters come to the table regularly to discuss how we can address the epidemic in the black MSM [men who have sex with men] community.
Being involved with TPAN and these men's health projects has helped me to grow and learn and to give back what has been given to me in terms of support, understanding, and compassion, because I think we lack that, especially when we talk about the MSM population.
Do you consider yourself an AIDS activist? What does that mean to you?
Well, somebody told me that you have to go to jail in order to be an activist. But, yes, I do consider myself an activist because I am committed to eradicating this virus, specifically from communities of color -- as Malcom X said, "by any means necessary." If it means going and sitting my black ass on the steps of the White House to draw attention to the fact that nobody is paying attention to HIV in communities of color, that's what I'll do. And we've got some pretty radical stuff planned that I'm usually told I'm going to have to tone down, but at this point, I'm not in the business of toning anything down if it's going to get the job done.
What do you like to do in your spare time?
I love spending time with family and friends. I like to drink and party. I love to go clubbing. I love to read, and I love music and movies. I like to bowl, roller-skate, and I like to boy-watch. I love to travel.
Are you a religious or spiritual person? Do you attend church?
I don't attend a church right now. I have this very weird Joan of Arcadia relationship with God -- I don't know if you're familiar with that show. I feel as if God talks to me all the time, sometimes in a masculine voice, sometimes in a feminine voice. But I can always distinguish when it is God and when it is my ego -- because, you know, they can sound alike. I feel that we have a very good working relationship, in which there are some things that I accomplish for Him and there are some things that She does for me. I wake up in the morning and talk to God in the shower, and it's a very real "You know what, I feel like crap today. Can we do something about it?" kind of thing.
I think that all started when, despite what the church might say, I questioned God. I was 17 or 18 years old, wondering how in the world something as big as HIV could come into my life, and how God could allow for all these atrocities in the world -- poverty and young children being abused sexually, physically, and emotionally, and wars. I just began to question God. And I got this smart-ass remark back in this very clear voice that I was sure was God, which simply said, "How could you allow it?" That kind of kicked off our relationship. I was like "Oh, that's how you're going to play! Okay, fine!" And that changed everything.
How did you find out you were HIV positive?
I was a senior in high school, a member of the Senior Boys' Council. We did an annual Lifesource blood drive, but I hadn't planned to give blood, so my girlfriend at the time punked me. She talked about me being a leader, but not walking what I was talking. So she punked me into donating blood. A couple of weeks later, I got a letter from Lifesource saying not to donate blood anymore and to make an appointment.
Then I made an appointment and had to travel all the way from Hyde Park to Lifesource out by O'Hare Airport. I went in, and that was the news I got. There was a little post-test counseling, but I zoned out, so I don't even remember what that was like. So there was this long ride there, wondering what the hell was going on, and then this long ride back, knowing. It was crazy!
What were your feelings when you were first diagnosed?
Initially, on the train ride back home, I had this odd feeling. Although the protease inhibitors weren't on the market yet and HIV was still viewed as a terminal disease, I had this feeling that everything would be okay. But I still had some doubts and this whole idea of dying young and all of that went through my head.
How did your feelings about living with HIV change over time?
When I was first diagnosed, I thought I needed to live as if I were about to die. I dropped out of school, focused more on working full-time and partying. I was just kind of existing. And then I got to a point where I realized there were medications available that could help me live longer, and I just started to change my whole outlook.
How long do you think it takes to process a diagnosis?
Forever. It's an ongoing process that has different stages. And as long as there's no cure, you'll still be processing that diagnosis.
What advice would you give someone who has just found out he or she is positive?
Tap into whatever support networks are available. I know that's what kept me alive -- the support of my family, friends, TPAN and the support groups. And educate yourself.
What conditions in your life put you at risk for getting infected?
Besides the physical, I also dealt with a great deal of self-esteem issues. I was sure that my sexual orientation was bi, but I was very uncomfortable with it, and I really didn't want that to be. So in trying to hide and keep that away from the people closest to me, I put myself at risk for HIV.
What is the first thing someone should do when they find out they have HIV?
Pray! A big part of that support base is spirituality, so tap into whatever spiritual base you are comfortable with and begin to really seek a higher being.
When you look back, what would have prevented you from becoming infected?
Being secure in who I was. If I'd had someone who was a little older and more experienced sexually -- and who was not trying to have me, which was a huge issue then -- but who was simply trying to guide and counsel me in what it meant to be a man who has feelings for other men ... well, I think things would have been a lot different.
How has HIV changed you?
HIV made me question life. HIV made me question God. And it made me take on a whole new outlook. My life right now is very good, and I'm not sure I would be able to say that had HIV not entered into it, because it really made me explore who I am, why I'm here, and find purpose.
African-American Identity and HIV
When did you first realize that you were African American?
Now that's a good question because I was this light-skinned child and my family talks about how I one time put a note on the bathroom door that said only white people could use the bathroom -- and by "white," I was referring to myself and my cousin Joyce, who is also very light. So believe it or not, that is my memory as a kid: Somebody ruining my whole picture by saying, "Dude, you ain't white!" I had to be about three or four years old when that happened -- when I first realized I was black, because I was like, "What do you mean I'm not white?"
To what extent have you experienced racism in your life? How have you learned to deal with it?
I have on some levels experienced racism. However, I believe that because I am articulate and intelligent, I don't experience it on the level that a lot of brothers and sisters do. I get that "You're not one of 'Them'" mentality from a lot of people, which is just ridiculous. I mean, if I were still that three-year-old kid who thought I was white, it would be great: "You're right! I'm not one of 'Them!'" However, that's not the reality. I am "one of 'Them.'"
One thing that I pride myself on is that I'm the same person whomever I am around. Whether I am talking to someone I'm interested in dating or I'm out with my friends, it's pretty much all the same. I don't revert to slang talk when I'm in the hood, per se, not any different than I would when I'm on the job. If I need to use slang, it's for a reason, regardless of where I am.
What is the biggest challenge facing African Americans today in terms of HIV?
The stigma! The stigma about HIV, the stigma around sexuality, stigma, stigma, stigma.
What HIV risk factors are of special concern to African Americans?
Again, the stigma. Because if we don't address the stigma, people are not going to feel comfortable about their sexuality or about disclosing their HIV status, and we just keep this never-ending cycle going of "don't ask, don't tell" and new infections.
Are there any specific aspects of African-American culture or identity that give you strength?
One thing that both helped and hindered is the church, because the church perpetuates that stigma. At the same time, it's where I found my spiritual base. And definitely the strength of our ancestors helped. Black people, African Americans, have such a rich and strong heritage. You know, reflecting on Dr. King's legacy and then applying that to my own life gives me strength to continue to move forward.
What is the biggest change you'd like to see in HIV treatment, prevention or education for African Americans?
I would like to see a real dialogue. I would like to see us begin to put the real issues on the table: poverty, illiteracy, racism, sexism, classism. And then I would like to see more solid and sound research as to what puts people at risk. Whether we're talking about race or gender or sexual orientation, there's not enough research about the lifestyles of these people who are at highest risk for HIV. We're constantly trying to develop prevention programs, get people into treatment, yet we don't know anything about them. So I think we need to get more research-focused.
Do you think the Bush administration is doing enough for the black epidemic?
No, I don't think the administration is doing anything at all, and I think that is really unfortunate because there's so much they could do. The first thing is they could remove personal moral beliefs and issues from the picture -- they're getting in the way of the work that needs to be done.
How would you grade Bush's performance?
I'd be really, really, really nice and give him a D-minus.
What are some of the main myths about HIV that you hear in your community?
There are a lot of different myths about how HIV is and is not transmitted: Can you get it through oral sex? Can women transmit it to men? Yes! I still hear that it's a gay, white, male disease; that it was invented or concocted by the government to kill blacks and gays; that there is a cure and Magic Johnson has access to it. I hear all of that.
What are your fears and hopes for the next generation of African Americans as they face the risks of HIV?
I hope that we will let go of our prejudices and lift the stigma that currently exists around HIV, and begin to educate ourselves and mobilize to eradicate this virus from our community.
HIV, Health Care and Treatment
What has been your experience with HIV treatment?
When I was first diagnosed, I went on treatment almost immediately. My first doctor recommended it. And it was horrible! I was 18 years old -- I'm a social butterfly now and I was even more so then -- and it just completely took away my drive and motivation. I didn't want to get out of bed, it made me feel so tired. The pill burden was high at the time, and ddI [didanosine, Videx] was this chalky white thing that was horrible to take. You had some pills you had to take with food, some you couldn't take with food, some you had to wait an hour after eating -- it was just a horrible schedule that totally interfered with my young life, so I just said, "I'm not gonna do it. I would rather allow the disease to just run its course."
Did mistrust of the medical establishment play any role in your decision?
It did, but not a big role. I think I still have some mistrust, though -- and I don't think that will ever go away. HIV is a big business, and as long as people continue to get HIV, pharmaceutical companies, especially, will continue to make money off it. If I were a pharmaceutical company making millions and millions of dollars a year from people buying my drugs and I stumbled across a cure, I'm not so sure -- even being the good-hearted person that I am -- that I could let it go. So I know that somebody who doesn't give a damn about people is not going to think twice! That's just the reality of the world we live in.
That doesn't affect my views on treatment, though. Right now, we have to go with what's available. We don't have any other choice. So be skeptical, do research, continue to look for the cure, but do what you gotta do to stay alive until we get there.
So you stopped taking the meds and then ... ?
I believed that by some miraculous feat, somehow God would spare me -- until I got sick! Then I started to realize that this was serious and I had to do something or I was going to die. And at that point I was even okay with dying because I remembered what the treatment was like. And I was overcome by the stigma -- self-stigma included -- and I didn't want to deal with what people thought or said about me.
What happened when you got sick?
It started in 2002, when I was 25 or 26 and living in North Carolina. I'd gone home to visit my mom and grandma for Mother's Day, and I started to get ill all of a sudden with what seemed like a stomach flu. I had constant vomiting, constant diarrhea. I realized that I needed to see a doctor.
I didn't have health insurance, so I had to go through the public health system in North Carolina. Their resources are very limited and there are waiting lists. It took me about two weeks of calling every day at this set time between 8 a.m. and 9 a.m. to get an appointment -- and it was for about three weeks later.
I was losing weight fast, not able to hold anything in my stomach, and ended up in the hospital before I even got to that appointment. It was very deep and very scary. When I finally did see a doctor, I had 30 T-cells and a viral load of hundreds of thousands and was about 50 pounds underweight from the constant diarrhea, vomiting, nausea, all of that. I was diagnosed with MAC [mycobacterium avium complex, a serious AIDS-related opportunistic infection]. It took almost two years to get over that -- I was hospitalized several times for extended periods of time. Once I had MAC in my lymph nodes, and somehow my intestines wrapped around one of my inflamed lymph nodes and caused a blockage. It took my medical team forever to figure that out.
What HIV medications have you been on?
I started in 1994 with AZT [zidovudine, Retrovir], 3TC [lamivudine, Epivir] and ddI. Then when I tried to go back on, it was the combination of Sustiva [efavirenz, Stocrin] and Combivir [AZT/3TC] -- but I was allergic to Sustiva and it gave me a horrible rash. So I got off that. Then I had to try the protease inhibitors -- first Viracept [nelfinavir], then Reyataz [atazanavir], which turned my urine the color of Coca-Cola, so I cut that, and finally Kaletra [lopinavir/ritonavir], which seems to be the protease inhibitor for me. Viread [tenofovir] is the only drug that's been consistent throughout my whole regimen. And I'm back on ddI again, which is Videx-EC, a very easy-to-take, once-a-day pill now. It was reformulated so it wouldn't be that big chalky-ass pill!
How do feel about your meds now?
I'm very okay with my meds now. I educated myself on how they work, exactly what they do in fighting the virus.
Do you experience any persistent side effects?
Aside from what I talked about earlier, diarrhea is something that comes and goes.
How would you rate your ability to take your meds on schedule?
I would say I'm about 95 percent compliant. I have the most trouble, honestly, because of my schedule -- working full-time and being a full-time student.
Do you have any special rituals or preparations that help you remember to take them?
No, because I'm only on a twice-a-day schedule. I do the morning dose when I first get up and the night one when I go to bed.
How did you choose your current doctor?
I chose him through recommendations from TPAN. The doctor I was seeing before had some personal issues that really prevented him from giving me the attention that I needed. I was severely ill, and we were just sort of masking it with pain medications.
How often do you see your doctor?
He likes to see all of his patients once a month because he feels that it's better to be on the up, so if something's wrong or you're noticing an increase in viral load you can take care of it right away -- and I'm in agreement with that, totally. However, I don't like going in there once a month! So I see him about every six to eight weeks, and he's okay with that.
Do you think you are getting the best care possible?
Is your doctor an African American?
Do you think an African-American doctor can understand and treat African-American patients better?
No. My doctor is also gay and HIV positive, and I think that he is totally culturally competent and knowledgeable about HIV and about gay men's health, period, which enables him to provide me with the best care. I recommend all my friends to him, even those who are negative, because I think it's important for gay men to have a doctor who understands gay men's health.
It sounds like you have a good relationship with your doctor.
Yes. I can call him anytime, about anything. Whether it's about myself or about a friend, he takes the time to listen, and he's just very open. Also he is very community-centered -- it's nothing for me to see him out at a social event or a club. And I really like that he's normal and down-to-earth, not puffed up about being a doctor.
Does your doctor treat you like a partner in terms of making decisions about your health?
Definitely! But that's also because I don't give him a choice.
Do you have a particular health regimen that helps you stay well?
When I'm stressed, I take long, hot baths. I can wash the stress away and allow myself the time to just be still and bring my mind and spirit to ease. And I read, and I make sure that I spend time with my family.
This may sound morbid, but one thing that I have really grown to love is to go to my grandmother's house -- where my grandfather passed -- and lying in his bed and taking a nap. I do that very often, especially when there's a lot going on in my life. I lay in my grandmother's bed, and I go to sleep, and I get close to him, and that helps a lot.
And I also drink dirty martinis in honor of Charles Clifton, because he is the person who I say birthed me into this HIV activist, and I always want to honor that.
Disclosure, Relationships and Sex
How have your relationships with family and friends changed since you were diagnosed?
My relationships with my family and friends have greatly improved. There is a greater level of honesty and openness. When I was forced to have a dialogue about my HIV status, everything else became, like, nothing. Sexuality, whatever, you know. I have really seen that I do have people in my life who love me unconditionally, and I think that has been the thing that has kept me alive.
When did you disclose to them that you are positive?
I told my mom and six friends right away -- in high school, there were six of us, three guys and three girls who hung together like glue. I told my mom first, and then invited all of them over and passed around the letter I got from Lifesource. But the thing was, I was like, "I'm giving you this information about me, but I don't want to talk about it and I don't want it to be brought up again." I didn't talk about it again for years.
I didn't talk with my girlfriend at that time. What I did was just break it off with no excuse or reason. And just recently, she was able to get closure on that -- because we're still close. She has two children now; I see her all the time. Recently I was able to disclose to her and talk about why I had to break it off at the time.
How did they respond to you?
My mom really took it hard, really hard. I never felt anything negative, just a lot of concern, and I felt that in some way she felt she was responsible somehow. My friends were all very supportive -- and very scared. One said, "You know, I really thought we would grow old together. I can't believe this is happening to you!" They were supportive, but very afraid, and rightfully so.
How do you want people to treat you?
I think they treat me exactly the way I want to be treated: I don't want any special attention, but I do want support -- support going through this masters program, working the hours that I work. I just need support, period, and I get that.
How do you decide whether to disclose your HIV status to someone?
Lately, I don't have a choice. Usually when I meet people, they already know because I'm a pretty public figure and I talk about it wherever I am. But there are moments when it is an issue, when I don't want to talk about it and I don't want to disclose it. It's when I'm meeting someone new, especially if we are meeting to date. It's kind of like "Okay, here we go ..." I usually start by asking them if they know their status, and then we go from there.
Now, if someone tells me that they don't know their status, I'm very unlikely to be intimate with him, because in this day and age if you don't know your status, you're not the person for me: You're not cognizant of the fact that you are a man who has sex with men, and we're the highest-risk population, so if you don't understand that, then our worlds are not going to gel at all. Then you don't understand re-infection, resistant virus, any of that. So we will be friends, and I will educate you and help you get tested. But as far as intimacy, we're not even going there.
What is the best response you have ever gotten when telling someone?
There was a girl in a class at the Chicago Vocational Career Academy when I was doing a presentation, and she was just overjoyed at the fact that I had the courage to stand in front of this class and say that. And there was so much love and so much appreciation in her words, and she wished me so much strength and well-being that I was almost overtaken. I hardly ever break down in presentations, but I almost did because of her reaction.
What is the worst response?
The worst was from someone who said that I deserved what I got for engaging in intimate relations with other men. I was giving a presentation, so I couldn't give him the Keith Green that the hood might know. But there was this all-eyes-on-him kinda thing, and there were a couple of folks in that room who got him together for me. I didn't even have to do it.
How has your sex life changed since you became positive?
Becoming positive changed my sexual orientation in that I felt more comfortable dealing with and disclosing to men than I did to women. I understood that disclosing to women would also mean disclosing and having the conversation about sexuality, and I just really wasn't that comfortable in my sexuality. So I stopped having sex with women. That's the biggest change that occurred, though I definitely still identify myself as bisexual -- and actually recently have been more interested in pursuing a relationship with a woman and hopefully, possibly having children.
I also really had to look at what "safer sex" meant, so things just changed in the sense that what I would allow before, I absolutely could not allow now -- but those same things, I shouldn't have allowed before.
Have you faced rejection from potential sex partners? How do you deal with that?
There's been some, but not much -- and nothing that has in any way been harmful. I'm okay with it when it's related to HIV. I understand that some people are not as informed as others, and it's just a natural part of being HIV positive that I've come to accept.
Do you have a policy about if or when you tell a sex partner that you are positive?
I try to do that before we even begin to become intimate. That way, if we're in the moment, we're not stumbling over that.
How do you have that conversation?
Again, I start with "Do you know your status?" And of course usually the first thing that comes out of someone's mouth is "Of course! I'm negative!" And so then ... well, I'm not. So there's that whole "Here we are!" thing that goes on for a minute, and then we move on.
Do you feel that if you practice safe sex, it is necessary to tell a sex partner that you are positive?
I think that you should always give a person the option. I understand how people can feel differently, because I have been in situations where I haven't disclosed. There were two very specific people whose deal with me was "You took away my right to choose, and you don't have that right as a human being to do that to another human being." So I disagree that as long as you're practicing safer sex, it's okay not to disclose.
Resolutions, Adventures and Wishes
Did you make any New Year's resolutions?
I made one resolution, and that is to live in the moment. Last year was such a big year for me and so much was happening that a lot of it I missed -- the meat, the fullness of every experience. I'm always thinking about other things that have to be done, so I'm really striving to focus on exactly what it is that I'm doing at exactly that moment.
What books, movies, music, or TV shows have had a big influence on you?
Books: Tuesdays With Morrie, The Power of Now, The Seven Spiritual Laws of Success, and The Game of Life and How to Play It. Those are some of the books that have moved me and that I pass on to other people.
Movies: Besides The Color Purple, I'm a big Star Wars fan. And The Lion King!
Music: Marvin Gaye's "What's Goin' On?" -- so much so that I named my column in Positively Aware after it. I'm really moved right now by some of the hip-hop artists that are about change, like Kanye West, Talib Kweli. Erykah Badu's "Mama's Gun" CD is probably one of my favorites. Mary J. Blige's "My Life," Jill Scott's "World and Sound: Volume I." Janet Jackson's "The Velvet Rope." I like music with messages -- I probably own about 1,000 CDs.
TV: Noah's Arc, the first black gay TV series.
What's the greatest adventure you've ever had?
I'm pretty adventurous, so I'm going to have to think on this one. ... One Memorial Day weekend, at the spur of the moment, my partner and I decided to drive to D.C. And we decided to call his cousins in Detroit to see if they wanted to go with us, and they did, and they had a truckload of people who wanted to go too. So we got a van and drove to D.C., to Baltimore -- just hit the road for the weekend. It was big and exciting for me. I was about 20, and had never been to Baltimore or D.C. -- and it was Black Gay Pride Day in D.C., and I was amazed at how many black gay men there were in life, period.
If you were granted one wish, what would it be?
I have to be very careful with this one because I get everything I ask for. It would be to have another conversation with my grandfather. I would like for him to be able to see my life now. I think he'd be very proud to see one of his grandkids pursuing a masters, considering a doctorate, and having an impact on the world. I'd love to be able to sit in his lap and tell him everything I have going on in life, and have him just smile and be proud.
Anything else you'd like The Body's readers to know about you?
I really want people to know that, underneath everything, I'm a very simple man who wants very simple things: love, friendship, peace, unity. I have a love for people that I don't even quite understand yet, but I'm very moved by other people's afflictions and pain. And that's what drives me, my career, my educational goals -- that sense of deep love for the world that we live in, and wanting to see it be at peace.
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