Table of Contents
Tell us a little bit about yourself.
I live with my lover, Ken, in Baltimore. We have been together for four months. Baltimore is just ... black. But this is like the suburban part, right on the edge of the city -- four blocks up starts Baltimore County where it gets really nice. So I'm right on the edge of that. I need that security when I move anywhere because I can't be scared to walk out my front door.
I am doing a few different things: First and foremost, I just started my own publishing company, SSJ Publishing. I am also finishing up my third book of poetry, The Dawn of a New Day. Also, I am starting a magazine called Invisible, to be targeted to the LGBT [lesbian, gay, bisexual, and transgender] community of color on historically black college campuses across the nation. I'm also studying journalism at Morgan State University.
Where did you grow up?
Newark, New Jersey.
What did you want to be when you were a kid?
What kinds of work have you done?
My work experience, mostly, is in accounting. My longest actual job was in New Jersey at the African American Office of Gay Concerns as the administrative coordinator for them -- payroll, budgets and writing grants. I coordinated volunteers. You name it ... I did it. Now, here in Baltimore, just to supplement my income, I write for the local gay paper, Gay Life.
What work did your parents do?
My father was a garbage man, and my mom was a drug addict and an alcoholic -- she had a job here and there but never anything stable. My father was a functioning drug addict. He went to work Monday through Friday and on the weekend he did his drugs.
Who are the most influential people in your life?
Personally, Grandma ... hands down! My grandmother, my father's mother, made me realize what it means to actually love somebody regardless -- no clauses, no nothing -- just because you're family -- because I am an extension of her.
Professionally, it would have to be my old boss at the African American Office of Gay Concerns, Paul Wright. From day one it was a lesson on how to operate -- how to do HIV prevention, deal with kids, adults, the state, anything. Anything that I needed to do professionally, Gary Paul Wright taught me.
Are you a religious or spiritual person?
I am a spiritual person. I am not necessarily religious.
What are your feelings about the church?
Well, I grew up a Baptist. My grandmother took me to church every day. So once I realized that the people that they were talking about as devils was me, once I was old enough to say that I didn't want to go to church and not get sniped down to the floor, I stopped going. Then I tried to go back, but the more I listened, the more I realized that they were sitting up there talking about me. They want to call me a devil, they want to say that I am going to hell, and they want to say that my life is an abomination -- and then they want me to pay them! I was just like, "I'm not going to pay you to talk about me." That's just stupid. I'm just like, "That is the last thing that I will ever do. If I am going to go somewhere for a fellowship, it's not going where you can use the Bible the way you want it."
What do you like to do in your spare time?
I write! On top of everything else, when I get a spare moment I sit down and I write. I have a blog on my Web site, www.sheltonjackson.com. I'm in the process now of trying to write my first novel. I have three very different ideas about how to write it, so I am writing three different books at the same time.
How did you find out you were HIV positive?
My partner tested positive, and we were in a monogamous relationship so I kind of just knew. We were two years into our relationship so we had stopped using protection: If he was positive, I was positive. But that didn't make me go get tested. My friends actually made me go get tested, because I knew, but I didn't want to know.
What were your feelings when you were first diagnosed?
I ignored it, to be completely honest, because my partner found out when he got pneumonia. When he came out of the hospital, he still wasn't 100 percent. So I just devoted all of my energy to taking care of him. I just forgot about me, which is what I wanted to do anyway.
How did your feelings change over time?
They changed during the third year after my partner tested positive -- he got pneumonia for the third time and we didn't think he was going to make it. For me, the only thing that made being positive okay was him. Because my idea was, "If you get sick, I'll take care of you. If I get sick, you'll take care of me." But when it looked like he wasn't going to make it, I was going to be alone. So it was either take care of myself, or I would die by myself.
How long do you think it takes to process a diagnosis?
It's different for everybody. I went into denial for three years. Then it took me another year to say it to anybody else. So it was four years after I actually tested positive before I even did anything about it. I honestly don't believe that it should take that long, not if you have the structure to support you.
But didn't you have that support?
I had it, but I wasn't willing to engage it because I was the support structure for all my friends. I was the one that everybody came to with all their problems. So when I had a problem, I didn't think they were strong enough to deal with my problems and their problems.
But when I finally told them, it was the best thing that I could have ever done. I live in Baltimore now and if I was to pick up the phone and say, "I need somebody," in two hours there would be a knock on the door saying, "Let me in. I'm here ... what's wrong?"
What advice would you offer someone who has just tested positive?
Basically, the advice I would give to someone who just tests positive is that you need to reevaluate your life, because more than anything it makes you focus on what you haven't done, what you want to do, and the importance of time -- you no longer have the luxury of it.
So it really just makes you focus. You have to make the decision whether you want to live or die -- because if you don't do anything about it, you're going to die. So if it's "I wanna live," then take the steps in order to keep yourself healthy, and not just live, but live the life that you wanna live.
When you look back, would you have done anything differently before either of you tested positive, in terms of the use of condoms in your relationship?
Yes, I would have used condoms. But for me, I was young and na?ve, and the only thing that mattered to me was that there was this other person who loved me like I loved him, so I thought that love would conquer all. So I was blinded by that notion -- and let down my guard. I did not realize that I could still love him and not get infected.
What is the first thing someone who has just found out they have HIV should do?
Call your best friend and pour your heart out and tell him, "I need a hug ... come get me."
How has having HIV changed you?
It's completely changed my life, actually. Because I was infected so young, it just made me look at everything differently. Again, it made me realize the importance of time and the things that I wanted to do with my life. I always looked at it like, "OK, I have a limited time in which to do this, so I have no time to waste." Through the last eight years, I have realized that I can live as long as I want to but I am still very cognizant of the constraints that I feel because of time ... because I am HIV positive.
When did you first realize that you were an African American?
I guess when I realized that everybody in my area looked like me, but when I went downtown or to the bank, no one did. Everybody in the bank was white! Then where it really hit me was in college, at Montclair State University, and we were literally the minority. It was an all-white school and there were 200 of us out of 1,000.
To what extent have you experienced racism in your life?
All of my run-ins with racism have been internal, within the black community. It's not with white people. That came in when I self-identified as gay. That's when I noticed the difference between -- like my family, as a perfect example, when they stopped talking to me. I was the good kid in the family. I was the smart one. I was the one that everybody brought their kids to for tutoring. The moment I self-identified as gay, I ceased to exist. I was no longer part of the family.
What is the biggest challenge facing African Americans today in terms of HIV?
That is a two-parter. It is the lack of health care and the black church. Because once people test positive, there is so much stigma that people are scared to get into health care or health care is not available. That is compounded by the black church, because everything else in the black church is OK except being gay. Being gay and being HIV positive are directly related in the black church. And the black church does not teach tolerance and no matter what we say, the black church is still a cornerstone of the black community. Until they say it's OK ... that it's tolerable and we are not devils and we are not going to hell, then it will never be okay for the community as a whole.
What HIV risk factors are of special concern to African Americans?
Lack of knowledge. For some strange reason, these young kids think that HIV is a flake. They don't take it seriously until they are personally affected by it. They have this superiority complex that it can't happen to them. The second would be the stigma again. There is just this stigma about HIV that we as black people just can't seem to get over.
Are there any specific aspects of African-American culture or identity that give you strength?
My support system: My grandmother is my greatest source of strength. When I came out to my family, they all stopped talking to me -- except my grandmother. I really had to look at my family and my own self-esteem to go, "OK, am I strong enough to overcome my family turning their backs on me?" My grandmother was a big supporter. She still calls me to this day, "What you eating? What was for lunch ... breakfast ... dinner?" and I never realized how much that telephone call helps me realize that somebody loves me regardless.
So I took that to the next step and said, "OK, my family is not on the same page with me. They don't want to be seen with me, that's fine. They can be replaced." I now have a new family. I have a gay mother. I have a gay father. I have seven brothers, three sisters, and a brother/sister, depending on the day. Just recently, I have three gay sons of my own, because I realize the importance of giving the younger generation a role model to follow.
What is the biggest change you'd like to see in HIV treatment, prevention or education for African Americans?
I would like to see more resources for after you get tested. There is this big emphasis on "get tested, get tested, get tested," but nothing much about the commotion of what happens after you get tested. If you test negative, they don't tell you there are resources out there to keep you negative. If you test positive, they don't tell you that there are resources out there on how to take care of yourself, live a normal life.
Do you think the Bush administration is doing enough for the black epidemic?
No. Not at all. He has completely different agendas and I could go on for hours about him. He is not my favorite person. Let's just leave it at that.
How would you grade Bush's performance?
What are some of the main myths about HIV that you hear in your community?
That is one I come in contact with every time I do a speech or talk about my book. It ends up turning into an HIV 101 session and you realize that these young kids still don't know the basics about HIV. They still don't know how you get it. They don't know the modes of transmission. They don't know if you can get it from oral sex. They don't know that it is not an airborne virus. I have only been doing HIV prevention for seven years. I am just baffled that people still don't know the basics.
You know, I just did my first official speech at Morgan in November, and the questions that came out of these kids' mouths were just like -- it has actually prompted me to make another project for SSJ Publishing, one of those pamphlets called the "Basics of HIV," because folks just don't know it.
What are your fears and hopes for the next generation of African Americans as they face the risks of HIV?
My greatest fear is that they will repeat the mistake that we have already made. I mean, it should not take people in this day and age three years to come to terms with the fact that they are HIV positive. I want them to go, "OK, I just tested positive -- what do I do?"
My greatest hope: Again, when I was talking to the kids at Morgan, they were asking questions ... something they weren't doing years ago. They want the information -- we just have to put it out there. Once we make HIV real and show them that it is a preventable disease, that will end the decades of HIV. I truly believe that. The HIV menace will be gone in the next 50 years.
What has been your experience with HIV treatment?
It has been wonderful. When I actually started taking medicine, it worked right away. The strain of the virus that I had was very susceptible to medication. My numbers shot down. I am now second-generation undetectable. I have 525 T-cells -- up from three just three years ago. I have had a little setback because two years ago I wasn't taking my pills like I was supposed to and I developed some resistance to a drug. But once I changed my combination, I stayed undetectable and my T-cells are just steadily climbing.
Have you been sick?
The only time I actually got sick was when I had an ulcer toward the last year of my partner's life. I was so worried about him that I stressed myself out. It really, really messed me up. It took me from 150 pounds to 100 pounds, but I recovered.
What HIV medication have you been on?
For the last two years, I've been on Viread [tenofovir], Norvir [ritonavir], Reyataz [atazanavir], Ziagen [abacavir] and Videx [didanosine, ddI]. It's about seven pills, which is a lot for this day and age because they have combined everything. My doctor actually hates my regimen because he says that I am on too many pills. But I'm like, "It's working and I take them all at night. If it's not broke, don't fix it." As a patient, I am very outspoken for myself. I think they tried to put me on everything at one point or another, so when something has a bad taste or the side effect doesn't rub me the right way, I am very vocal about saying, "I don't like this -- let's change it."
What kinds of side effects have you experienced from your meds?
One was from Epivir [3TC, lamivudine] -- the neuropathy, the tingling of the toes and fingers. That was the one that I actually developed a resistance to because I just stopped taking it because it just whacked me out! The other one was Sustiva [efavirenz, Stocrin]. It gave me really, really vivid bright colorful dreams. It was a little freaky for me, so I told them to take me off that.
How would you rate your ability to take your meds on schedule?
From one to 10? Um ... now ... 10! I am on it like glue now. If I'm not, my partner is right there on it with me.
Do you have any special rituals or preparations that help you remember to take your medications?
No. I just try to keep it in plain sight so I can see it -- on my nightstand. It's the last thing I see before I go to sleep.
How did you choose your doctor?
When I was in New Jersey, a friend recommended a doctor he was working with. It was one of those all-inclusive programs -- doctor, nutritionist, mental health specialist, group counseling, help with your bills, everything. When I moved to Baltimore, one of the biggest things for me was, "I love my doctor ... I don't want to leave my doctor!" But when I got here I did the survey of the services in the area, and then asked a couple of people who were HIV positive where they went and about their experiences. I'm a very organized person, so when people say, "I go in there and I'm in there for hours," I say, "I'm not going there." If my appointment is at 10, I need to see the doctor at least within the hour.
How often do you see him?
I see my doctor every three months now.
Do you think you are getting the best care possible?
Yes I am, actually.
Is your doctor an African American?
No, he is not.
Do you think an African-American doctor can understand and treat African-American patients better?
My doctor in New Jersey was an African American. The only difference I see in the treatment that I receive there and here is that he would talk to me. He wanted to know what was going on in my life. He gave a damn, basically. And my doctor here is, "Is there anything wrong with you? Do you have any questions? Is there anything I need to know? No? Then let's take some blood work and go on about your business." He's very efficient. He is very good at what he does. But he doesn't take the time to sit down and chitchat and all that stuff. But from my black doctor, I actually felt like he cared.
Does your doctor treat you like a partner in making decisions about your health?
Yes. But that is because I don't give him any other choice. I am not one to just let people tell me what to do. If he suggests something and I don't know about it, I will agree for the moment -- but I am going home to do my research to find out exactly what he put me on. I'm still in contact with my old doctor, so it's easy to send him an e-mail saying, "What is your advice on this?
Do you have any wellness regimen that helps you stay healthy?
Being a writer, I don't get out much. So, every now and then I just need to stop working and get out -- even if it's just to take a bus ride downtown to the harbor and go have lunch outside and be amongst people. And to take that a step further, I try to get out once a month and do something gay. Just so I know that I am not the only black gay person in this area. Just so I won't feel so isolated in the house, because this is where I do all of my work and sometimes it can get rather lonely.
Do you participate in an AIDS service organization?
I work with the Gay and Lesbian Community Center of Baltimore. I am on the advisory board of a group called Kevon's Room -- a group of youth that run all the programming, do the HIV outreach prevention, pass out the condoms, set up meetings with other ASOs to combine services. I am also a mentor for the younger kids in the group.
Have these organizations been helpful in improving health?
To me, it really just lets me give back to the younger generation ... to the folks that are coming up behind me. Just the way my boss in New Jersey took me under his wing and taught me everything that there was to know about HIV. Just being able to pass on what I know as being a positive black gay person. That helps! That helps me a lot.
Do you consider yourself an AIDS activist?
Yes, I do. I do. People like that title. I'm not big into titles.
What does activism mean to you?
To me, it means a person that goes out and promotes HIV prevention or awareness And that I do.
We talked a little bit about your family and how they responded and how that went for you. How do you decide whether or not to disclose your HIV status to someone?
For the longest time I went under this rule that if we weren't having sex, that was none of your business. But the more I go out and I talk to people, the more I write, the more I realize that my coming out and disclosing my HIV status empowers other people. So now it's a common thing. It's not a big thing for me to say, "Hello, my name is Shelton Jackson and I'm HIV positive." Because just by coming out and saying that, you would be surprised at how it empowers other people. My oldest son, I met him in Atlanta at a scholarship that we had both applied for and we were roommates, and that was the way I introduced myself. From that moment on, he has been looking up to me. He said to me the other day, "I can't believe that you just came out and said that to me, like it wasn't nothing." I'm like, "It's not. It's just who I am."
What is the best response you have ever gotten from telling someone?
My son's reaction. That he looked up to me and that he was proud to just call me a friend. "I can draw strength from you. You seem like a real strong person who don't take no stuff from nobody and I want to be like that."
What is the worst response?
The worst response I got was probably from the people of Baltimore. Because it's almost like an oxymoron to be black, gay and HIV positive in Baltimore. For some reason it just seemed like I was the only black gay person and then, on top of that, I was HIV positive and wasn't afraid to say it. So I have had people talk about me relentlessly, call me all kinds of names, spread rumors -- you know, "Don't talk to him, he got the package" -- block me on the computer, like they could get it through the computer. I just thought that was hilarious.
Where do you go for support?
That's when I turn to my support system, my grandmother and my friends I have elevated to the status of family. I draw all of my support from them. When I am going through something, I pick up the phone. It's weird because I was going through something this weekend, and it seems like just a year ago, I would have been the one with all the answers. Now this weekend, I was sitting there listening to my little brother and I'm like, "Okay, you're getting wiser as you grow up." So it was nice to be on the receiving end of the wisdom than to always be dishing it out.
How has your sex life changed since you become positive?
Well, for the last seven years, I was in a relationship, so it didn't make a difference. My first partner, we were together for six years ... four years of that was positive, and then he passed away, and then it got difficult. I went through the whole thing with my therapist about how to tell people my status. We did the whole role-playing thing, but when the time came for me to actually play it out, it was nothing like what we practiced. My first time going out after my first partner passed away, Thanksgiving, I met this guy and I'm like, "Oh, he's so cute ... yada, yada, yada ... I ain't had sex in a year, this should be interesting." On the way home he asked me about my HIV status. It just completely floored me because I had forgotten that I was HIV positive. I was like, "Oh, snap, I need to tell you that don't I?" And I said, "I'm HIV positive." Then I turned around and I started walking back toward the train. Then he said, "Where are you going?" I said, "That may not have messed you up, but that really messed me up. So I'm just gonna go home. You have a nice life." He stopped me, grabbed my arm, and was like, "Well, wait!" He said, "I'm sure I have had sex with people that are HIV positive, but you are just the first person who has ever told me." And that ended up being my next relationship. It lasted about a year and a half.
Have you faced much rejection from potential sex partners?
Yes. I moved to Baltimore as a single person, and like I said, just being out about my status, it is not the "in" thing to do here in Baltimore ... to let people know that you are HIV positive. So there was no sex because people were afraid of me.
How do you deal with that?
I did something that I wasn't too proud of. I stopped telling people that I was HIV positive. Then my conscience got to me. I realized that I had become one of those people that I said I would never become -- people who just go around having sex with people and don't tell them. It took me a minute, but I was like, "You know what? This is not the person I want to be." So I started telling people again. I had my little profile on the online chat things and I put a nice, big picture of my face and said I was HIV positive.
Do you have a policy about how or if you tell a sex partner that you are positive?
For me, it always has to be up-front. Now it's an up-front thing because I am at this stage in my life where if you can't deal with that, that's your issue, not my issue. I know what I look like naked -- you're the one that's trying to find out!
How do you have that conversation?
It is a straight-up thing. You meet people and people's favorite question is, "Tell me a little about yourself." I hate that question now! But it's, "I'm 28. I'm a student at Morgan. I'm a writer. I'm HIV positive." We go from there. You know, "I'm slim. I'm toned. I'm this. I'm that." But it's there from the get-go. So I know that if they can't handle it, ain't no need to waste my time.
Tell us a little bit about your partner.
[He's] also HIV positive. This is my first time dealing with a younger man. He just turned 23 on World AIDS Day. All of the guys that I've dated have been older men. Then I met this little guy and we just got along. I mean, we were like really in tune with one another. I met him and a week later he was still at my house. I wouldn't let him go home. He would go to work and I would be like, "OK, you coming back?" He finally said, "Do you like me or something? You keep inviting me back." I was like, "You know, I guess I do." He was just like, "I've never had anybody to understand me." He is a smart individual. He is a computer person, so if you put him in front of the computer, he becomes this completely different person. I've learned that when he is sitting in front of the computer, leave him alone. Because to get his attention I literally have to sit on him. Because I am an attention hog. Anything that takes his attention away from me, I have issues with.
Did you make any New Year's resolutions?
Ken and I brought in the New Year real quiet. It was just the two of us. He is my full partner in my publishing company and we were like, "It's going to be a really big endeavor, and this year is going to be big for us."
What's the biggest adventure you've ever had?
Adventure? My trip to London with my ex. It was the first time I had ever actually been overseas, and it was just beautiful to see the way other people lived, other things. I have this fascination with castles. So we got to go see all of these old castles, and I saw the Rosetta Stone and I was like, "Oh my God!" At the British Museum you see everything the British have stolen from everybody -- all their colonies. That was the first time I had real fish and chips in the little paper and everything. It was a wonderful experience.
If you were granted one wish, what would it be?
I would get real personal with that. The world has its own problems, but if I had one wish, it would be to have my father back.
What books, movies, music or TV shows have had a big influence on you?
I don't do TV. I turn my TV on for the Golden Girls and Scooby-Doo. And as far as literature, my first year at Morgan has been very enlightening. One book I got into was Invisible Man. I identified with the Invisible Man and the things that he was going through. Some of the things were stupid, but the underlying "I am invisible to everybody" just rang in my ear. That's one reason the magazine I am starting is called Invisible, because I think that the LGBT community on HBU [historically black university] campuses is just that: invisible.
Anything else you'd like the people reading this article to know about you?
People always look at me and go, "You have been through all of this and you have it all together!" But I try to let people know that HIV is a process -- a growing process. I wasn't always this strong. I wasn't always this vocal about who and what I am. There was a point where I sat in my room and I cried all day. Having to tell the doctor to take my partner off life support and then watching him die in my arms. That has a tremendous effect on you and what you do in life.
So, I don't want people to look at me and go, "This is the person I want to be," and then expect to make that change overnight. This process took seven years for me to get here. It took four years for me to say to other people that I am HIV positive. I just want people to realize that HIV is a process. It's a growing process. It is not going to happen overnight. Only you can determine how fast or how slow you go. I just want people to realize that I wasn't always this strong and I only got this way through the help of my friends, and just wanting to help other people in return.
|SHELTON'S POST-DIAGNOSIS MEDICAL HISTORY|
|CD4+ Count (May 2008): 150 Viral Load (May 2008): 100,000|
|Medications, Side Effects and Illnesses (chronologically)|
|April 1998: Diagnosed after two inconclusive test results|
|2001: Started meds -- Epivir (3TC, lamivudine) + Ziagen (abacavir) + Reyataz (atazanavir) + Viread (tenofovir) + one other (cannot remember)|
|2001: Lost 50 lbs. (went from 155 down to 105); diagnosed with AIDS wasting syndrome|
|2001: Diagnosed with ulcer of the esophagus; treated with Boot for weight gain|
|June 25, 2002: Partner passed away|
|2003: Developed resistance to Epivir|
|2003: Switched meds (CD4 3 / Viral load 199,000) -- Norvir (ritonavir) + Viread + Reyataz + Emtriva (emtricitabine, FTC)|
|November 2006: Stopped meds at CD4 638 / Viral load undetectable (stress resulted in not taking them correctly)|
|May 2008: Weight down to 129 lbs.; started meds -- Retrovir (zidovudine, AZT) + Emtriva + Reyataz + Norvir|
|I got comfortable -- too comfortable -- and started taking my good health for granted, which led me to stop taking my meds. My CD4 count and viral load went from 638 and undetectable to 150 and 100,000 in a year. I am currently fighting again to get my numbers back up and refortify myself. I see myself in the final stage of my evolution, evolving into the person that will carry out my destiny. I am not giving up because I know my struggles with HIV show others that it can be done. So, I fight the good fight and hope that others learn and grow from my struggles, my failures and my accomplishments.
Updated May 2008
Shelton Samad Jackson died on March 2, 2009. Click here for more information.