This interview has been altered from its original format. Statements have been re-ordered for clarity with permission of the interviewee.
When and how did you find out that you were positive?
I found out I was HIV positive maybe three months before my 20th birthday, about March of 2004. It was kind of funny how I found out I was positive, because I had a lot of stereotypes about how people became HIV positive, one being that only promiscuous people get HIV. I think that was the biggest stereotype that I had, that only promiscuous people get HIV. I never really thought about HIV, because I really didn't think it pertained to me. I wasn't a promiscuous person, and I was in a committed relationship. So, HIV and me didn't belong in the same sentence. [Laughing.] And then at the same time, at age 19, I was very, very cocky, very big-headed at that time. Like, "Oh, I'm me. Look at me! I can't be HIV positive!" I think a lot of young people have that overconfidence at times.
That feeling that you're invincible.
Yes. So, I got tested. It was kind of funny, because that is not what I went there for.
Where did you go?
I went to the Horizons Project at Children's Hospital of Michigan to be tested. Throughout my relationship at that time, my partner and I had discussions about using condoms versus not using condoms. [There were] things I would allow myself to do because, for the first time in my life, I felt like I was in love. I felt love for the first time that was unconditional. ... I was really in need of somebody -- [in need of] being loved. So, anything that would jeopardize that, I was reluctant [to do]. I tried to not let anything jeopardize that.
When did you and your partner get together?
I was about 17, a junior in high school.
Did you meet him in high school?
I was in high school, but he wasn't in high school. He's actually [about] 10 years older than me.
When I graduated from high school, I had a full-ride scholarship to Florida A&M [Florida Agricultural & Mechanical University]. I passed [it] up because my partner, at the time, felt that we couldn't have a long-distance relationship. Like I said, I felt love for the first time; this was my first love, my first sex partner, my first everything. I didn't want to let that go. I passed up my scholarship, stayed in Michigan and continued my studies [there].
My partner and I had mentioned being tested together, on more than one occasion, because my partner didn't like to use condoms. I did [like to use condoms], and I was really particular about that; I was really adamant about being tested together. We let time pass and let time pass. My partner, at the time, didn't get tested. We never got tested together. I ended up going to get tested by myself. I came and showed my partner my results and told him, "These are my results. I'm negative right now. What are your results? Have you gone to get tested yet?"
Now, me being naive and [having] a lot of things going on, personally, I really felt like I can trust my partner. I can trust him when he tells me, "I took the test and my results are negative." I took that word for what it was, and trusted my partner's words. I figured he loved me, just as I loved him, so I figured my partner wouldn't do anything to jeopardize or hurt me. I took my partner's word for it, and we started having unprotected sex.
A few months later I had some speculations that my partner had cheated on me. So, immediately, I told my partner we needed to use condoms, because something's not right. A few months down the line, we had the same discussion again -- the same events took place. I went and got tested again, by myself. [I] again took my partner's word for it [that his test was negative], in spite of the fact that I had reasons to believe [he] had cheated on me once before. [Both times I suspected him of cheating, I made] very strong accusations with minimal proof. It wasn't that I caught him doing anything, it was more so that things just didn't add up.
Like I said before: I was naive and in love. I didn't want anything to jeopardize that. I was in love for the first time. I wasn't going to let anything jeopardize ... that love -- which, at the time, seemed to be unconditional -- from a person who didn't necessarily have to love me. Your family, for example, you expect them to love you because they're your family.
I was getting that same love from someone who didn't necessarily have to [love me], who wasn't part of my family. So, I wanted to keep that. I wanted to hold on to that. I ended up getting tested again by myself, showed my partner my results and, naive again, took my partner's word [that his test was negative]. A few months later we ran into the same thing, but this time I actually caught my partner in the act of cheating.
Well, we went our separate ways. Everything between us discontinued, except for the fact that we were still living together, at this time. I couldn't afford the apartment by myself, and my partner couldn't afford it by himself, so we moved everything to separate room[s]. We were just sharing living quarters.
So, you became roommates?
How long had you been together at this point?
At this point, we had been together for about three and a half years.
At the same time, my social worker would come over to the house periodically because I was still in the foster care system. But I was more on my own, paying everything on my own. It's called the independent living program, where I was living on my own -- taking care of myself, making my own meals and things like that. So, I had a social worker that would stop in periodically, just to check on things and see how everything was.
Your foster care social worker was coming to see you even though you were no longer a minor?
I was still in the independent living program. At 18 I moved out of my cousin's house and got my own place. Instead of them paying for me to live with my cousin, [the state of Michigan] was paying for me to live on my own in addition to me working and going to school. ... For me, they [extended the program] because I was in school and still working. Actually, they extended the program until I was 20. ... The judge was very pleased with my work and continued to extend it for me.
Also, at the same time, I noticed that my health started to decline. At the time, I was being treated for a stomach ulcer, or what I thought to be a stomach ulcer, that would never get better. I was in constant pain. I couldn't stand up straight. At the same time, my diet was reduced to maybe crackers and water everyday. I had very little energy.
Every time my social worker would come over, [he] would see me lying down. My social worker would ask, "What's the problem? Why are you always lying down every time I come over? Is something wrong? You don't hang out anymore or do anything. Where are your friends at? Do you need some friends?" So, my social worker took it upon himself to do some research to find some support organizations for gay youth.
"When the counselor asked me how I thought people get HIV, I said, 'Promiscuity, that's how they get it. They're out being a ho \[whore, prostitute\]. If they're out being a ho they deserve it.' Which was very ignorant \[of me to say\] but I felt really strong about that."
This is how you ended up at the Horizons Project?
Right. We ended up going to the Horizons Project, which was a support group for HIV-positive youth. Immediately, I was turned off because [I thought], "Oh, this is not me. I'm not HIV positive. I'll never be in this group. This is not the group for me. I need to get out of here." Then I sat down and talked with the counselor. The counselor brought some things to my attention. One thing -- I remember it like it was yesterday -- [was] when the counselor said, "OK, tell me what you know about how people can get HIV. Tell me what you've heard."
At the time, I knew little to nothing about HIV. All I knew about HIV, was that it was the human immunodeficiency virus, and that was because I had to study it for a test in high school. That was the only reason I remembered it, because it was on the test. I never tried to do any other research, because [I thought] it didn't pertain to me anyway. Why do I have to do research on something that doesn't pertain to me, because I'm not promiscuous?
So, when the counselor asked me how I thought people get HIV, I said, "Promiscuity, that's how they get it. They're out being a ho [whore, prostitute]. If they're out being a ho they deserve it." Which was very ignorant [of me to say], but I felt really strong about that.
The counselor said, "So, I take it that you're in a relationship."
I said, "No, I'm not in a relationship now, but I've been in a relationship for the past three and a half years, a committed relationship."
And he said, "So, you've been [in] a relationship of three and a half years. You're not in one now. What happened?" Before I could say anything the counselor said, "Think about this: You've been with this person, only been with this person. Has this person only been with you?"
[His question] kind of clicked, because it brought to the surface the reason why we broke up. It really brought some things to light. They said, "It only takes one person to introduce something into the relationship, such as by cheating or other things. So maybe, maybe you wouldn't think it was possible that your partner introduced something into your relationship ... [except for] the fact that your partner was cheating." That really hit home for me. Because it did, I decided to get tested that day. I got tested, and that was the longest two weeks of my life.
Why two weeks?
The reason it was two weeks was mostly my fault. My results came back a week later, and the counselor called me on the phone and said, "I want to set up a time for you to meet with us, so I can give you your result." Because of the inflection of his voice, I was really nervous. Even though I was cocky and I thought it couldn't happen to me, because we had [had] that discussion prior to taking the test, I was really nervous and scared. So, I got to the place and I sat in my car for about an hour and a half before I went in. This was a week after I got tested. I went in, and then I turned around and left. I didn't come back for another week, and that's why it took me two weeks to get my results. It was the longest two weeks ever.
"I went in, the counselor gave me my results and basically said, 'As of this moment you are HIV positive.' Everything he said after that sounded foreign. The walls started to close in. I really don't remember it. I was in the room by myself. I couldn't hear anything. I couldn't see anything. I couldn't move. I was really surprised and shocked and upset and scared."
What was it like when they told you?
I came back the second week and got my results. I stayed outside about 30 minutes this time, then I went in and got my results. The only reason I went in and got my results was because I said, "Hey, I'm me. I'm not promiscuous. I'm going to prove to them that I'm not positive." So, I went in with this big head, overly confident. I went in, the counselor gave me my results and basically said, "As of this moment you are HIV positive." Everything he said after that sounded foreign. The walls started to close in. I really don't remember it. I was in the room by myself. I couldn't hear anything. I couldn't see anything. I couldn't move. I was really surprised and shocked and upset and scared. I couldn't even know which way to go, I was so scared. They had a doctor on site. They set me up with a doctor's appointment -- my first doctor's appointment [for HIV]. I was admitted into the hospital.
I had a CD4 count of 65, a viral load of 400,000. I had pneumonia in my lungs. I had a stomach ulcer. I couldn't stand up straight. I was about 95 pounds. My liver enzymes were very, very elevated, which means that, [if] they had given me any other medication, it would have affected my liver. I wouldn't have been able to handle it. So they put me in the hospital for two weeks of close observation, and after that they started me on my first regimen.
How long did it take for you to process the diagnosis?
I never really processed it until I started working as a case manager and advocate [at The Horizons Project], because from the time I found out my status it was work, work, work -- work on getting me healthy again. It was a lot of work, a lot of doctor's visits and appointments. ... So, I really didn't have time to reflect on my diagnosis, my personal diagnosis. Then shortly after that, I started working as a case manager and advocate, where I couldn't focus on me anymore. I had to take my energy and focus on helping someone else. I had to set my own problems aside, so that I could help somebody else with theirs. [That] was really therapeutic for me because it really helped me to be strong and confident, and because there [had been] a point where I felt that I would never tell anybody [my status]. I was HIV positive. Me: HIV positive. Me? HIV positive? That would never happen. I could never tell anybody I was HIV positive. Because of the experience of working with other people that were HIV positive, I was able to open up and share things about myself that I never thought I would be able to. That was therapeutic for me.
It was probably a year later when I went to the Ryan White National Youth Conference, when I finally did come to grips with it. I met a lot of different people from all over the United States, who were from different places but were going through the exact same thing. When I realized that I'm not by myself in this, I was able to accept it. I was able to share my story. I was able to really collectively bring up ideas, bring up strange ideas with other people. It really took me outside of my own neighborhood and let me see that this was a national thing. These people are just like me: from thousands of miles away, yet we have this connection. Not just HIV, but that we had this similar background [that] led us to this same point. I often say we take different paths to end up on the same road. I thought that was so profound.
What eventually happened between you and your boyfriend after you tested positive?
We didn't move out because -- although I was getting assistance from the state and working -- [I was] going to school and I had a car loan to pay, so the bills got to be a little much. I knew that I couldn't afford the apartment by myself. He was on the lease, [and] I was on the lease. We just decided to move him into the extra room that was there, and we kind of shared the living quarters until the lease was up, and then I moved out.
Did you ever confront him about infecting you with HIV?
At the time, I told him that I was HIV positive and I really didn't hold any animosity toward him for that. I felt that this was something that just happened -- it happened to the both of us. At the time, after I told him, then he ... I guess, acted as if he went to go get tested and he got his results and he determined that he was positive as well. So we just both took it as an unfortunate event that happened between the both of us. We kind of moved forward from that. It wasn't until probably a year after I found out I was diagnosed and I started working in the field as a case manager and an advocate doing outreach at the bar, when he approached me and told me that he wanted to apologize because he felt so bad. [He said he] was proud of me at the same time, because I took my status and dealt with it faster than he was able to deal with his status, because he knew he was positive the whole time we were together and didn't tell.
Did you forgive him?
At the time, initially, when we tested positive, I didn't even blame him. "OK, we have this, let's do something about it." We kind of persevered like that. But then, when he came and told me that he knew all the time, I ... it's hard to forgive him. I've come to realize that holding that animosity in my heart is only hurting me, and I don't want to be hurt any more than what I have already. I haven't completely forgiven him, but it's something I'm working on. It's a work in progress.
Are you still in touch? Do you know how he's doing?
No, I'm not in touch with him. I see him every now and again when I'm doing outreach ... I may run into him. I don't say anything. He tries to keep [up a] conversation, but it's difficult for me to talk to him. I really am very evasive.
It's been three years since you were diagnosed. How old are you now?
So, it's been a while since your diagnosis. How do you think being HIV-positive has changed you?
HIV has changed me because I have been through other experiences in my life where I really didn't look at helping other people or caring about other people. If I wasn't going to benefit from it or get something from it then I wasn't trying to be involved. It really took me out of that selfish mode and [taught me] to genuinely care for other people, which is something I never thought [would happen].
Also, once I became comfortable being HIV positive I was comfortable with myself, period. I found myself making more friends, talking to more people. I really began to have a social life. Through HIV, I found socialization, something that I always lacked.
Can you tell us a little bit about your background?
I am a male child, one of three. I was born in Seattle, Washington, and raised in Detroit, Michigan. I was raised in a single-parent home. [A]t a very young age I had to learn a lot of additional responsibilities. ... [M]y mom was always away -- she had to work and deal with family problems. My older brother wasn't at home, so a lot of the responsibilities fell on me, such as looking after my little sister: making sure she got to school, did her homework, that her homework was correct and things like that. I didn't have much of a childhood. I didn't have a lot of friends and I didn't do a lot of things in school. It paid off in the long run, [but] it sucked at the time because I couldn't be a kid. Being a kid didn't exist. I didn't know what being a kid was.
How did it pay off in the long run?
Other than not being able to develop social skills, one [way] that [having responsibilities at a young age] did pay off was it taught me at an early age to be responsible, which is something a lot of people don't learn until they get older. I was able to problem solve and things like that on my own.
What happened to your dad?
I never really got a chance to know him. Years later I found that he had passed. I was in about fourth grade, about 9 years old [when he died].
As I grew up and got older, my mom started staying home more often. She had a live-in boyfriend. He would help with a lot of the bills and stuff, so mom had time to stay at home. I think at that age I was about, maybe, 13. Mom was home more, and a lot of the things that had been my responsibility she was now taking care of. It was difficult for me to understand, because I had been [taking on adult responsibilities] for so long. My mom really felt like I needed to be a kid, but by that time -- 13, 14 years old -- I didn't really know what being a kid was. So, we had a lot of conflicts, me and my mom and her live-in boyfriend -- her fiancé now. We didn't always see eye-to-eye on things, which led to difficult conflicts; one resulted in me being a part of the Michigan court case for foster kids. My mom gave up parental rights and gave me to the state of Michigan.
Why did she put you into foster care?
That came about because, like I said, we had a lot of conflicts just going on in the household: Who was the disciplinarian? Who was to give orders and take orders? Because Mama was never there, I had no one to really give me guidance or really give me rules. I didn't have rules. I made the rules. So, when mom started coming home more often -- and giving rules that I didn't necessarily agree with or think were fair, at the time -- we exchanged words and [had] different altercations. [It got] to the point that it was just best we went our separate ways. So, my mom decided to give up her parental rights and give me to the state of Michigan.
How long were you in foster care?
I was in foster care for, maybe, nine months to a year. At that time, it was really difficult for me. I had a lot of emotional problems with that, because I felt really abandoned. I had always been really different growing up. I was the smallest kid, the skinniest kid, the one picked last because I was the shortest. ... I had always felt like the oddball around friends and family. When that [foster care] happened, I felt even more different and abandoned by my family. I really distanced myself from my family. After a year of foster care I was able to get out and find more stable housing with a relative. From there I went to school.
It was really difficult for me to make that transition [moving out of my mom's house] because I felt like I was really close to my mom. My mom was my best friend. She taught me how to cook and she taught me how to dance. We really had a lot of fun together, and I was really confused and discombobulated by the whole situation. This person is the only person to understand me, and yet she gives me away to the state of Michigan. I don't understand that. That just didn't seem right to me at that age.
Considering how close you were, why do you think your mother felt like the two of you couldn't work things out at home?
It wasn't ... me and my mom that really had a lot of the tension. It was more me and my stepdad that had tension and things in the household. My mom had to make a choice [per court order] to either let him go, ... go to family counseling, or give me up to the state of Michigan. Out of the three that's the one she chose.
Why didn't your mom just choose to go to family counseling?
My mom really ... by this time she had completely stopped working. Period. My stepdad was the whole source of income in the household. That, in turn, gave him a lot of authority. [Family counseling] was something he wouldn't agree to, and because he wouldn't agree to it, ... she didn't either.
How did all this end up working out? You said that you lived with a relative and you went to school.
After a year and a half [of] being in foster care, my brother came and took me in, and I was living there [as a ward of the court]. ... At the time I was in the independent living program. [The Michigan foster care system] didn't acknowledge cousins as relatives. ... They paid my living expenses while [my brother] provided shelter for me as opposed to living in foster care. I was living with a relative and paying rent at that time.
You were living with your older brother?
He's not my [real] brother; it's something that he's grown to be because me and my [biological] brother didn't have a good relationship. ... He's my first cousin. His dad and my mom are brother and sister.
How old was your cousin when you were living with him?
My cousin was 26 years old at the time I moved in with him.
Were you able to finish out high school living with your cousin?
I was able to catch up. The whole foster care period really took a toll on my schooling. I had to put [school] on the back burner.
How many homes did you live in?
I was in the foster care system, however, I didn't live in any foster homes other than a residential housing facility for youth (a group home). I lived there for about nine months before [I] had approval to live with my cousin in his home as a tenant. I moved in with [my cousin] and was able to find stable schooling. Later, I graduated from high school.
You recently got a new job. What are you doing for work?
I'm currently working as an outreach coordinator for the Midwest AIDS Prevention Project in Ferndale, Michigan. As an outreach coordinator, my job is basically to go out into the community and ... establish and maintain rapports with other organizations, as well as [with] our clients or people that are [in] our target audience. [This way] we will be familiar with them and they will be familiar with us and know that, OK, this is the place we need to go to get tested. In doing so we do things like bar outreach -- go to different venues where youth congregate so they will be comfortable with us and basically [know] that we will be in the community, that [if] you have any questions we are here for that as well.
You encourage them to get tested and let them know what kind of services you offer?
Yes, making testing convenient for them by moving the office to them.
Do you take a mobile testing unit out?
What we do is: We have test packets that we take with us when we go, for example, to bar outreach. We pick a night on specific days of the month when we know everyone will be congregating -- on a pretty busy night -- and we set up to test people there at the bar. We also give out information, as well -- along with offering testing at that time if they want -- letting them know how they can get in contact with us if they want to get tested later.
What else are you doing? Are you in school?
Right now I'm not in school. I plan to go back [laughs], but I had to take a break for a minute for personal reasons, financial reasons. I just got a new job, so that was the biggest reason.
What do you eventually want to get your degree in?
I want to study public administration with a concentration in public health. I want to continue working in the field that I am working in -- human services -- and basically continue my work getting people tested, making people aware of HIV and educating people.
What other kinds of work have you done?
Well, my first job, what really got me into the field, was working as an advocate and a case manager for ... the Horizons Project. As an advocate, I basically facilitated support groups [and] helped adolescents and young adults between the ages of 13 and 24 who needed health insurance. [I helped them] get medication, housing and job postings. [I worked to] help them [become] productive people living with HIV, so that when they progressed out of our program they'd be able to independently take care of themselves living with HIV.
Are you a religious or spiritual person? Do you attend a church?
No, I don't attend a church. I wouldn't say I'm a religious person. I would say I'm more of a spiritual person. I think my connection with God is personal. A lot of time what conflicts with being a religious person is my own opinion. So, I chose to be more spiritual then religious.
Do you have a partner?
No, right now I don't. No, I don't. ... I was going to add on to [that], but that's OK.
HIV, Health Care and Treatment
What was your first treatment regimen?
Viread [tenofovir] and Reyataz [atazanavir], one pill [of each drug], twice daily. Also, at the time I wasn't working. I had to take some time off school, and I had to take some time off work. At that time, I was very, very, very sick. At the time, I was still functioning, going to work, but my doctor asked me to take time off so that I could focus on my health care. My doctor and my nurse have always been a team to me. No decisions are made without them being explained to me. I either agree or disagree or try to come up with some other plan or action that would work best for me, that will be conducive to my schedule. For example, when I first started my medication, I was taking pills twice a day; now I'm taking pills once a day because my schedule has been very hectic. I'm less likely to forget my medication if I know I only have to take it once a day. I fit it into breakfast time, or lunchtime or dinnertime, so I won't forget.
How is your health now? You've rebounded, obviously. Do you feel better than you did when you were first diagnosed?
After a month of treatment, my numbers began to turn around dramatically. After a month, I went to a 200 CD4 count and a viral load of maybe 100,000. Now I have an undetectable viral load and a CD4 count of 625.
At the same time, after a month of treatment, my doctor (who was also the director and CEO of the Horizons Project) offered me a position as a peer advocate. At the time, I was really reluctant to take the position because I felt that I didn't know much about HIV, and I felt I was so stupid for being infected with HIV. How could I help somebody else? How could I be an influence to somebody else [who is] living with HIV when I can't even influence my own life? Besides, my knowledge of HIV was little to none. She saw something in me that I didn't.
She was your doctor?
Right. She was also the director of the Horizons Project.
Is she African American?
No. She's Caucasian.
Do you feel like you're getting the best possible care from her? Do you have a good relationship?
Yes, I wouldn't trade her for the world.
African-American Identity and HIV
When did you first realize you were African American?
[Laughs.] All my life.
Did you ever experience a defining moment in your racial identity?
All the time I have experiences with racism and racial profiling. Just based on how I look, people sometimes perceive me as something that I'm not. Even being discriminated against based on my HIV status. Some people know my status and don't want to socialize with me or talk to me because of that.
My first real encounter with racism was maybe two years ago, when I was in school. Something the instructor said really rubbed me the wrong way. I answered a question correctly, and he made a comment about, "We do have an intelligent one in our class. He's not from what they call, 'the hood.' He can speak like he's over here with us. You wouldn't think he's from what you would call the hood." Everybody thought that was so funny. There were only three African-American people in the class, including myself. That really didn't feel right, that he was trying to stereotype the fact that because I'm black I live in the quote-unquote hood and I couldn't be intelligent at the same time. I think that was my first experience [with racism]. I always knew that racism existed, but that was the first time I actually experienced it. It really brought something to the forefront of my mind: Racism is still here.
"One thing is that there is no such thing as a gay black man in African-American society. ... The fact that HIV is a gay man's disease, that puts us even lower on the totem pole."
What is the biggest challenge facing the African-American community today, in terms of HIV?
I think the biggest challenge is ignorance, stereotypes. Believe it or not, in the African-American community, I think the fact that everything is so segregated [is a problem]. You have your heterosexual men. You have your heterosexual women. You have your homosexual men. You have your homosexual women. "Because I don't fit into this class, or this group of people," [people think], "this information doesn't pertain to me."
I think that, within the African-American community, that's the biggest problem: stereotyping. It's commonly associated with HIV. One thing is that there is no such thing as a gay black man in African-American society, so [because we exist at all] we are already looked down upon. Then, the fact that HIV is a gay man's disease, that puts us even lower on the totem pole. I think the community is segregated and people look at it as a hierarchy. "Oh, I'm gay, but I'm not HIV positive. So the HIV-positive gay man is lower than me." I think that whole mindset is really detrimental to us as a race, because we are not given a lot of information or [we're] reluctant to get a lot of the information because we won't receive it [well].
Is there an aspect of African-American culture that gives you strength in your work with youth and HIV?
I don't really think that my strength comes from my culture, per se. I think my strength just comes from being a human being -- being an individual who wants to help people regardless of what color you are, your sexual orientation, what you've done in the past. I'm focused on what you want to do currently, and if being tested and being educated about HIV is what you want to do currently, then I'm the person to help. I don't really look at it as being a cultural thing or a personal thing. I look it as a people thing. I will help any person who wants to come and get information or come and be helped or wants to be tested or wants to help somebody else, in regards to HIV or just people in general. I think that's where my strength comes from: knowing that there are people that want to be helped, people that need the help and don't know how to get the information or just knowing that I'm out there to give the information to whoever wants to receive it.
What's the biggest change that you would like to see in HIV treatment, prevention or education for the African-American community?
The biggest change that I want to see is the fact that, a lot of times, the whole topic of HIV is kind of pushed under the rug, because it's so scary. People are in fear of what they don't know. If you learn about [HIV], you will no longer be in fear of it, but people are so in fear of it because the media and society has perpetuated [the image of] death all the time with HIV. "HIV equals death." That's not necessarily the case. ... You don't hear [about] ... the people who are doing well and living normal, full, fulfilled lives being HIV positive. You often hear about the people [who] are dying from [HIV] or having complications from medicine, or things like that. They [-- the media, society at large --] never talk about the [HIV-positive] people [who] are graduating from law school, or the people who are on tour like us [-- Operation: Get Tested, a U.S. tour of college and high school campuses where HIV-positive young people encourage students to get tested for HIV, sponsored by Who's Positive]. [Many people] are living fulfilled lives and having fun and living life to the fullest, just as if we didn't have HIV.
Don't get me wrong; I'm not advocating that people go out and get [HIV] because there are treatment options and things like that. ... I'm saying that I want people to know about it. I want people to treat it and embrace HIV-positive people the same way they would embrace someone who is suffering from breast cancer or someone who has lupus. Because so many different stigmas are attached to HIV and people are just in fear of it, they don't want to embrace it. I think that's the one biggest thing that will help with care: The more [people are] receptive to [learning about HIV], and the more they're willing to embrace each other and treat people who are living with it the same way they would give someone attention who is suffering from breast cancer.
... I think they have treatment options in a hierarchy as well. If you have cataracts you are on the top [of the] pole, and if you have HIV you are on the lower end. ...
Who creates this treatment hierarchy -- the medical profession?
To an extent, yes. A lot of medical professionals, ironically, don't know about HIV themselves, so they don't know how to treat people with it. Often times [they] shun away from giving the best care possible [to people with HIV].
Do you think they've created this hierarchy purposely or out of ignorance?
I think it's out of ignorance and fear, fear of what they don't know. As well as society -- people in general ... people just feel discriminated against because of being HIV positive. ... With (health) insurance companies they want to raise the premiums. It's illegal for them to kick you off the insurance because you're HIV positive, but they'll raise the premiums so that you can't afford it. A lot of times we have to turn to government assistance. Even with jobs, they want to lay you off ... because you have an ongoing illness, but if someone had cancer, they'd let them work until they can't work anymore. I think because they have fear of [HIV] and people don't know [how HIV is spread]. You can't get cancer from being around someone; they don't realize that you can't get HIV from being around someone. [It's] that fear of being around someone [who's] positive or interacting with someone because they know that it's a [disease spread through contact]. They kind of shy away and don't know and often discriminate against [HIV-positive people] even with housing and things like that. ... People don't want people with HIV living in their community. ... People aren't as accepting of it or as willing to provide as many services or [as much] care for people going through this, because they don't understand what people living with HIV are going through. They don't take the time out to learn or find out what's going on. I think that when that happens -- [Crying.] Excuse me.
It's OK. Take your time.
I think, when that happens, care and services for HIV-positive people will get better, but it has to start somewhere.
Working with youth, what are your fears and hopes for your generation, and especially for young African Americans, as they face the risks of HIV?
My fear is that, you know, a lot of times people say that this is an epidemic. Yes, maybe it's an epidemic now, but later my fear is that it will be pandemonium. Yes, it's an epidemic now -- let's get it taken care of now. I think that for our nation, or for our people coming up, the younger people, the information is getting out there. More people are talking about it. I can see the change from the older generation to the younger people.
The older generation has a mindset that if we don't discuss it, [then] it's not happening. [That] really wasn't beneficial to them, because a lot of the older people I talk to really don't know a lot about HIV. It's never too late to learn, but I want to say, "Alright, this [HIV] has been around longer than I have, and you mean to tell me that you don't know anything about it?" I find that very fascinating. It baffles me to see that.
I think, for our future people coming up, the information is getting out there. More people are aware of [HIV]. I think the more we talk about it and the more it becomes part of the general conversation, [the better]. ... The more you talk about it, the more information you learn about it, the less scared of it you become. ... I think more people are talking about it. I think it's in the news more than ever. A lot of research is going on for different things [related to HIV]. I think there has been a change. I think it continues to change. I just don't want to see a change for the worse.
Disclosure, Relationships and Sex
How have your relationships with your mother, stepfather and sister changed since you were diagnosed?
My relationship with my family has really gotten much better. I choose to not be a part of my family because they are still skeptical about my lifestyle in addition to my status. Sometimes you have to pick your fights, and sometimes I just choose not to pick the fight with my family. With my sister, I've always had a great relationship. That's my baby. ... It's always been good because she was always able to talk to me. When I first told her my status and told her what I was doing for a living and where I worked, we were close, but that brought us even closer. She shared some things she had been thinking about: having sex, wanting to know this, wanting to know about condom usage and what about birth control. We really had an adult conversation that she wasn't afraid to have. We were never afraid to talk about sex or anything of that sort. She explains to me often, "No, I'm not having sex right now but I've been thinking about it." All I want to instill in my sister and other people is that it's OK to talk about it. It's OK to think about it. You're young. We are sexual beings. We don't want to advocate going and having sex, but in the event that you do, know what you're doing. Know what to look for, and be quick. I'm just giving you the tools, necessary in your toolbox, so that when you go out you'll have the tools to face society. That's all I instill in young people and [that's] what I told my sister.
My mom, on the other hand, we talk more now, where we didn't talk at all at first, so our relationship is getting better. As far as my stepdad, we still don't talk at all. We're not going to try to talk at all. I just leave that where it is. My brother, I don't really talk to him at all, mainly because we never really had anything in common. He's eight years older than me, so we never really talked or exchanged words. We just know we are brothers because we have the same mom and same dad. We know we're brothers, but we don't really have that bond, or any type of bond established already. It's something I plan to do later in life. Right now, I don't foresee it happening.
I do talk with other people in my family all the time that I'm very close with, that I've always been close with, like my cousins and aunts, whom I shared my status with before I shared my status with my mom. We talk all the time, and we have a great relationship. Everybody comes to me when they have questions about sex or STDs [sexually transmitted diseases] or they want to get something clear that they heard about HIV. That's really cool because it lays some groundwork, and it lays a foundation. Through my HIV status I was able to build that bridge to information they probably never would have [tried to] get. They [may not] have known to ... get [the information] if they hadn't known I was HIV positive. I'm glad of that.
Tell us about your son.
My baby! I think Pierre has been a motivating factor for me to continue to persevere. I have my times where I want to give up, but when I think about his face, or think about him smiling, or he calls and says, "Hey, Daddy! Let's go watch Spiderman today," that really keeps me motivated to go on. At the same time, he has been one of the things that brought me and my mom closer together. He's my mom's only grandson. When I do get him [as part of the custody agreement with Pierre's mother], we're over at grandma's house. [My mom and I] may be sitting on the porch watching him ride his bike and me and my mom will [strike] up a conversation, something we haven't done ... Now that I think about it, I can't remember us ever just [striking] up a conversation and talking. She may call me and say, "Hey, you got Pierre this weekend? Is he coming over? I want to see him. Can you go get him and bring him over? I want to barbecue and you all come over and let's talk and have fun." My mom never really invited me anywhere since we had not been living together, since the whole ordeal with foster care. My son has been really the bridge that brought me and my mom back together, as well as the bridge that keeps me going on, keeps me connected to life. ...
I had him at a very young age. I was 17 at the time. [This was] during the same time when I first came out. I was going through a lot of things at that time with my sexual orientation. Because of society saying that it's wrong for you to like men, it's wrong for you to be homosexual, I didn't know which way to turn. I didn't know if I wanted to be accepted by society or ... be a homosexual black man, or what to do. Then, a lot of people said, "You can't knock what you haven't tried." I tried the heterosexual thing, and in the process I had Pierre. People often ask me, "Was he an accident?" Initially, I thought it was a mistake because we were so young but ... [the] teaching and that upbringing to be responsible at an early age really played a big factor in how I brought him into this world. Now that I look at it, I regret ever feeling like he was a mistake, because he's been such a light in my dark corner.
How old is he now?
He's five now.
Was his mom your girlfriend at some point?
Well, no, actually, we were friends. Just friends. We just ... tried something.
How old was she at the time?
She was about 19.
Do you two have a good relationship?
We've always had a great relationship. She's my friend. We still have a good relationship, [but] it's not the best. ... Sometimes she doesn't agree with my [sexual] orientation, and sometimes she kind of throws that in my face. When it comes to taking care of Pierre, which is all that matters at this point, that isn't an issue.
How do you share custody?
Well, we alternate times. She might have him for three months, and then he'll come stay with me for three months and go over there on the weekends. Sometimes my mom will take him for a month or so, and he'll stay with her. I don't really have all the responsibility; we kind of share, alternate and give each other a break. My mom really steps in a lot, because that's her only grandson. Between me and her, we're often fighting for him. It's always a battle for who can get Pierre this time. "It's my turn! It's my turn!" I'm really thankful for that, because I still have a chance to be myself and be young, which a lot of young people [who have children] don't.
How do you decide whether or not to disclose your HIV status to someone?
Well, it depends. It's really at my discretion, a judgment call, basically. It depends. [I'll tell them] if I'm counseling and in the midst of our conversation I feel like the person might be kind of nervous or scared of a result or getting a test done themselves -- which a lot of the time they are -- and they're relatively close to my age and I feel they can really benefit from hearing, "Hey, it's not the end of the world. I'm HIV positive, too." I'm HIV positive and giving you this information. It's not as bad as people make it to be. It kind of gives them some level of comfort and kind of eases up the level of tension in the room. It kind of depends on who [they are].
If I'm dating, I kind of engage the person by bringing up topics about what I do for a living, which is a great thing because sometimes I might not want to tell this person or might not want to talk to the person after this conversation, so I didn't divulge any personal information that they can later take and divulge or use against me at a later date or something like that. I really gauge their take on HIV, assess if that's something they can handle. Of course, I don't tell them right off the bat, but I give it anywhere from a month to three months depending on how "interactive" me and this person have become. What I mean by "interactive" is how many times we go out, how much conversation we have when we do talk. When there's the vibe that I'm really feeling this person and vice versa, then I choose to disclose my information. Sometimes if I'm dating, [I] just give information when people say things like, "Well, I can tell if someone's HIV positive. I can look at their hands." It's just my duty to prove them wrong. So I play along with it and say, "Well, look at my hands. Can you tell if I'm HIV positive?" A lot of time if they're ignorant about something like that I really don't tell them. I kind of let them go and try to give them as much information as they're willing to accept and let it go.
What were the best and worst responses you have gotten from telling people you were positive?
The best response that I have gotten --and this was the reason I was kind of unsure when you asked whether I was dating anyone -- was [from] someone I'm talking to now, involved with now. When I first started working in the HIV field, I really wasn't too comfortable about my status and was nervous about whether people would accept me as an HIV-positive man. I was nervous because of the law and things like that.
Because of the law?
Right. We have a disclosure law here, that basically says that any person who is HIV positive, from the time they find out they are positive, they must inform all future and/or present partners of their status before they engage in any form of sexual penetration, for example, finger in the ears, finger in the nose, whatever sexual penetration. It's open to your own interpretation. An HIV-positive person must disclose his status to any and every future partner from the time they know they are HIV positive. I was kind of nervous about that law because it is a felony here in Michigan. I really felt like this person would be a really good friend and at the same time I was really unsure. I told the person that I was HIV positive, and the person immediately grabbed me and hugged me and wouldn't let me go. I think that was the longest hug, ever, in the world. For about two and a half, three hours he just hugged me and wouldn't let me go. He told me, "I think you're so brave to tell me that, because if the shoe was on the other foot I probably wouldn't have told you." I said, "Really?"
He said, "I probably wouldn't have told you. I probably never would have told you. So, for you to tell me that ..." I think at the time I was about 21. He was like, "For you to be so young and confident and share that with me, I really take my hat off to you." He gave me a lot of affirmation and praise for that. I think that was the best experience. I think that's why we're still friends now. We're not dating, but we are working on it. [Laughing.] That's what makes it even more special or makes me anticipate the day we officially say we are a couple.
What about the worst disclosure experience?
The worst experience for me was when I had to tell my stepdad. It was really terrible because I didn't want to tell him. I thought that he didn't need to know, but the situation was that around the time I began to be [treated], I had to come home. I had nowhere to go. I had to stop working and things like that. I didn't want to be in an apartment with my ex, so I was looking for alternative places to go, one being my mom's house. So I explained to my mom what was going on with me, my health and things like that. She welcomed me with open arms, but out of respect -- because she's not the only adult there and [not] the only one paying bills -- she had to talk it over with her fiancé, which is understandable. Well, she explained that she wanted me to come there, but she didn't exactly tell him exactly why I needed to come back home.
[When I got home] she was looking at me and tears were running down her face. I was looking at her and tears were running down my face. She said, "Just tell him. Tell him what's going on." So, I told him, and he kind of jumped up from the table and snatched my glass out from in front of me because I was drinking some water or something. He took the glass from in front of me and threw it on the ground and said, "We need to sweep this up." He bleached the table and everything. I think that was the worst experience. "You mean, you got AIDS?" he said, really loud. He really took everything I had touched and bleached or disinfected it or smashed it so no one else could ever use it. When I would go over, it just really started happening where he would only let me use certain utensils or disposable ones. He had a section for me, when I would come over. He would say, "This is your glass." I think that was the worst experience. Now I can laugh at it, because he was so ignorant. At the time it was really, really, really painful to endure that.
Did he stop doing that?
Yes. About a month and a half ago.
[Laughing.] Unbelievable. Let me ask you, how has your love life changed since you became positive? What about your sex life?
My sex life has gotten better since I've known. Like I said, I really didn't have much of a sex life before. It's gotten better. I really don't have too much of one now, but the option is there if I should need it. It's not hard to come by if I should need it. [Laughing.] What was the other part of the question?
How has your love life been since you've been positive?
Well, dating for me has really been better, because it helps me to weed out people who won't be good for me later in life. I'm looking for somebody for the long haul. They need to know certain things about me. So sometimes when I divulge information it kind of scares some people away, which is a good thing because if you are just scared of HIV, then that ain't nothing compared to my attitude and my mood swings. If you're scared of HIV, it's probably best that you go your own way.
Adventures, Wishes and Likes
"Being HIV positive has been the greatest adventure I've ever had. I kind of want to say it's like being on a rollercoaster."
What's the greatest adventure you've ever had?
Being HIV positive has been the greatest adventure I've ever had. I kind of want to say it's like being on a rollercoaster. You know how it takes you up and down and round and round. By the end of the ride, you get off and you're like, "Yeah! Let's do it again!" On some levels, I'd do it again, but at the same time I wouldn't. I mean, I don't wish to have HIV all over again, but HIV has really brought me a lot of people who have been very beneficial to me and my life. It's helped me to take the most out of every day and not be upset and complain about everything and every situation, because I'm still living. Knowing where I came from and knowing where I am now, I can be thankful. If I hadn't ever gotten the HIV test, I probably wouldn't be living right now. So I'm thankful for that and everything it has brought into my life. I have had more positive experiences than I have negative ones. I have had more positive experiences since I have been HIV positive than I had before I knew I was HIV positive. Before I got tested, life was a bitch to me, but since I've been positive everything's been better, much better. I wouldn't exchange it for the world. I wouldn't exchange these experiences for the world.
If you were granted one wish what would it be?
Oh! One wish for me would be ... I don't know, because I can't narrow it down to one. [Laughing.] One wish for me would be, for me to be able to continue what I'm doing, healthy and positive and positive about it. I don't want to change that aspect of me, ever. Like I said, that part of me has been the most beneficial experience I've had throughout my life. I haven't been living that long, but long enough to have good experiences. [Laughing.] I think, one wish for me would be to be able to continue to work where I am and continue to do the things that I'm doing for many, many, many years.
Well, I hope you do. Is there anything else you'd like to share with our readers?
I just want to let people know to think positive, be negative and get tested.
Age: 22 Home: Detroit, MI Diagnosed: March 2004
D'Jaun Black was just a teenager when he says he "felt love for the first time; this was my first love, my first sex partner, my first everything." D'Jaun had been with his boyfriend for three and a half years when he found out the man he loved was cheating on him. So he decided to get tested. He was just shy of his 20th birthday when he found out he was HIV positive. His CD4 count was 65, and his viral load was 400,000. A regimen of Epzicom (abacavir/3TC, Kivexa) + Reyataz (atazanavir) has helped him achieve an undetectable viral load and a CD4 count of 625. Since testing positive, D'Jaun has dedicated himself to supporting HIV-positive youth and encouraging young people who don't know their status to get tested. His greatest wish is "to be able to continue to work where I am and continue to do the things that I'm doing for many, many, many years."