Listen to Audio (68 min.)
|Photo: Ara Howrani of Ameen Howrani Photography|
Table of Contents
- HIV Diagnosis
- Personal Bio
- HIV, Health Care and Treatment
- African-American Identity and HIV
- Disclosure, Relationships and Sex
- Adventures, Wishes and Likes
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.
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.
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.