Listen to Audio (41 min.)
- Getting Tested for HIV
- Telling Others
- Going Public About Life With HIV
- HIV/AIDS and Dating
- Work Life
- HIV Treatment
- AIDS Activism
- Military Life
- Advice for Others
Hello and welcome. This is Bonnie Goldman, Editorial Director of TheBody.com. Welcome to This Positive Life. I'm here today with Justin B. Smith. Today I'll be talking with Justin about what it's like to live with HIV. Welcome, Justin.
Let's start at the very beginning. Can you start by describing how you found out you were HIV positive?
I kind of had an idea that something was wrong with me anyway. I was sweating in bed and I didn't understand why I was sweating so hard. "Why am I sweating? I have satin sheets. This doesn't make any sense."
Then I woke up and as soon as I sat up, I threw up twice on the side of my bed. I ran to the bathroom and I threw up on the side of my toilet and I finally got the last one inside the toilet. [laughs]
I knew something was wrong. I decided to go to the clinic -- to Us Helping Us, People Into Living, Incorporated, in [Washington] D.C., which specializes in LGBT [lesbian, gay, bisexual, transgender] testing, awareness and education targeting African Americans.
Do they have free HIV testing?
Yes, it's free testing.
How long ago was this?
I went to them in 2006. I used to work there back in 2004. I went there to work as their administrative assistant. I knew I could trust them. I had friends there that were still working there. I went there and I called my friend Brian. He was off. I went in, got the test. It was a 20-minute OraSure test.
It was a swab test where they swab inside of your mouth and then they test it.
So this is a rapid test and you could immediately find out if you're HIV positive?
Yes, in twenty minutes.
What was your expectation while you waited for the results?
A million things were running through my mind. "I'm 26 years old. You know, there's no reason why..." Ignorantly, of course, I had thought I couldn't be positive. "My name is Justin B. Smith. How could I be positive? Dada dada dada. I'm Justin B. Smith. How could I be positive? I'm an example."
I thought about my past behavior. [laughs] "I went out and I drank a lot and I used to do drugs -- cocaine being my drug of choice. I used to lead a very dangerous life, I guess.
Going home with somebody when you're high or drunk, you really don't think about a lot of the things that you should be thinking about, like condom use. When I was getting my HIV test, I think I smoked about 20 cigarettes.
While you were waiting for your HIV results during the 20 minutes? It's kind of hard. [laughs]
[laughs] Yes, 20 cigarettes in 20 minutes. Yes, it was really hard, but I did it. [laughs] A whole pack!
How long had you been doing drugs and going out?
I was doing that for about a year and a half. It was actually after I had gone through a tough breakup. I was alone so I felt like I was like, "Eh, I'm free. I'm single. Yay, I can do whatever I want."
Were you living at the time in Washington D.C.?
Yes, this was in D.C., which you can get into anything you want to here. [laughs] Anything you want.
Were you very out as a gay man back then?
Oh yes. Oh yes. I was out. I was even out in the military. When I was in the military from 1999 to 2003, I was out. My people knew I was gay. It wasn't like it wasn't that obvious anyway. But I was out and nobody cared as long as I did my job.
Before we talk about your military experience, let's go back to the drama of waiting for your HIV test results for those 20 minutes. What else is going through your mind?
I was waiting for my friend Brian because I was hoping that he would get here before the 20 minutes was up because I needed his support.
He's my best friend and I decided that I need him to be here with me. So I was like, "OK, what am I going to do if it's positive?"
What did you think you were going to do?
My mind went blank. Then I knew 30 minutes had gone past. I got up there and I said, "Brian isn't here, so let me just be a man and find out. Let me do this. Whether I find out if he's here or not, I'm going to have to find out anyway."
I went to the room and a woman, the tester, said, "Mr. Smith, are you ready for your results?"
"Sure," I said.
She said, "Mr. Smith, you've tested positive for the HIV virus."
I said, "OK," and it didn't hit me at first. Then I cried for about 10 to 15 minutes.
First, my thought was, "I won't be able to have any children."
That was my first thought. I won't able to have any children. I was really upset about that. Still am, sometimes.
Although it's not true. [laughs]
Yes, although it's not true. Right, and at the time, I wasn't really educated about that. But it's true, I still can probably biologically have children. It just takes a lot of money. [laughs]
Yes, it actually cleanses your sperm so you're able to fertilize an egg without it being HIV infected.
Of course, we both know they cost a lot of money though. [laughs]
My second thought was, "What are my parents going to think?" Because they brought me up to know what was responsible and what was not, especially when it came to sex. I was raised with a silver spoon in my mouth.
I was raised spoiled as a kid, but my dad sat me down at the age of 13 and gave me my first condom and said, "Here, be responsible." I knew that and it felt like, "What is he going to think of me now?"
My third thought was that I was going to die. It's always been something about me to put other people's needs in front of mine sometimes. Sometimes that is wrong. A lot of people would disagree with me about doing that. I thought about all these people, and then I thought about myself.
I was like, "What am I going to do now?" My friend Brian came, and I cried in his arms. Then we went to the bar and got a drink. [laughs]
Brian said, "What are you going to do from here?" I said, "You know what? I'm just going to live."
How did Brian react when you told him?
Oh, he was really cool.
You knew that you could trust him?
Yes, yes. I knew that that was one of my support systems. He was the first person I ever told. I mean he was there.
Did you ever worry that he would tell other people?
No. Brian and I have been best friends for five years now. He's been an awesome friend. I knew he wouldn't go back and tell anybody, especially nobody in our circle of friends.
Then what did you do?
I didn't know what I was going to do. I got a little depressed. [laughs] Then my apartment was in shambles. I contemplated suicide, but I said, "No, that's just not me. That wouldn't be me." I couldn't do it.
What was the first thing you did that helped you come to terms with your diagnosis?
I actually started telling people.
Had you told your parents yet?
No. I told friends. My mistake was that I told a friend of mine who actually went back and told my mother.
Yes, exactly. I got a call from my family. It was my stepfather. He asked me, "Do you have AIDS?"
I said, and being honest, "No, I don't." [laughs]
Because your diagnosis was HIV, not AIDS.
I said, "No, I don't."
He said, "Well, your mother's over here crying." Then my brother got on the phone and he started crying. They asked me and said, "We heard you had HIV."
I said, "Well, that is true. I do have HIV."
So they started crying more. Then I told my family, "You know, listen. I need you guys to be strong with me. I don't need you to cry for me." From that point on, they've been the biggest supporters I've ever had.
How long after your diagnosis was this?
Oh, wow. A couple months.
Did you have health insurance at that time?
No, I did not actually. I had to get free services through ADAP [AIDS Drug Assistance Program].
Had you done anything like that at this point or were you still just figuring that out?
I was just figuring that out. I never had to do that before.
After the free clinic test at Us Helping Us, I went over to Whitman-Walker Clinic. The clinic actually referred me to them to get all those numbers.
Is Us Helping Us a free clinic?
Yes, and Whitman-Walker is also a free clinic. But they have more services. Now actually, as of today, I sit on the board of directors of Whitman-Walker Clinic in D.C. I went over there and they told me my CD4 count. It wasn't too bad. The initial one was about 500 actually. My viral load was 77,000. Which actually wasn't too bad.
Did you think that you had been infected a long time or a short time?
Probably a short time. When I was infected, it was early 2006, so I actually know who infected me.
Have you ever confronted them?
Yes, I did actually. And I took him to the clinic. Supposedly, he didn't know. I believe him when he said that.
But you weren't mad at him?
No. Because I believe that being mad or being angry at somebody is a waste of time. I think that if you keep that energy inside you, it's only going to consume you. It's only going to bring out the worst in you.
Also, when you were with this man you didn't ask for protection, right?
No, I didn't.
So it's kind of a 50-50 responsibility.
Right, exactly. So how can I blame him? How could I be mad at him? I was mad at myself. I was mad at him. I couldn't do that to myself. Mentally, it would make anybody go insane.
After the phone call your family, how were they with you? Were they wary about sharing cups or kissing you?
They seemed to be knowledgeable about HIV transmission?
Yes, they weren't at first, but now they are. They were knowledgeable. But I think that some of them that were in their 40s or 50s automatically thought that I was going to die within five years. Back when it was a death sentence, back when you couldn't live past five years. It was almost unheard of. Back in the '80s and '90s people were dead within five, two years after getting diagnosed.
Did anyone you told during that time act badly?
I did get one comment from a friend of mine. It was really, really rude. I told her that was really insensitive of her to say.
I was flirting with this guy. She said, "What are you doing?"
I said, "I'm flirting, obviously. You know, I'm [laughs] trying to get this guy's number."
She said, "But you have HIV."
And I said, "Yes, so? But I'm still human." That's why it's called human [immunodeficiency] virus.
She said, "Well, you know, that's how you got in this problem in the first place."
I said, "That was the most insensitive thing that anybody's ever said to me."
Later on, maybe 30 minutes after she actually thought about what she said, she said, "Oh well, I'm sorry. I apologize."
That's what you have to do with people. You have to tell them. You have to be open with them and say, "You know what? That was uncool." Or you have to be open and honest with them. If you're not open and honest, you're not going to get an honest response.
Mostly you told everybody and your family and you didn't notice any difference in the way they treated you?
None. Actually, this is kind of funny because recently my little brothers found out. Little brothers. One just turned 13. One just turned 11.
They didn't know you were HIV positive?
No, they had no idea. I kept that from them on purpose because I wanted to protect them and I just wanted to protect my image of myself from them.
What do you mean?
I mean I didn't want them to look bad upon me because I am their big brother. I do like to lead by example. It was a little bit of a pressure point there where I wanted to tell them so bad and I didn't know how.
How did you tell them?
[laughs] Well, they found out via MySpace.
Because as you know I started being open and honest about my status that I started doing it in the most unconventional way, which is through YouTube, and blogging and what have you. I came up with Justin's HIV Journal.
I started thinking about it two years ago because I actually looked online and I couldn't find any videos of somebody day to day doing their life -- their medication, their clinical visits, the medication specialist visits, just the beginnings of being infected and what you might have to go through. I looked that up and I couldn't find anything.
I found journals, like written books and things like that, but I couldn't find a video journal. So then I thought, "I should be doing this. [laughs] You know, I'm newly infected and I would like people to know what comes along with that."
Did you have a journalism background or video background?
Actually, no. [laughs]
How did you suddenly become this persona on the web when you had no real background in that?
I did write for an online newspaper called GBMNews.com, Gay Black Men News.com. And I started doing that. Then I said, "Huh. I've got a column here. I guess I got an idea for a column, Justin's HIV Journal. I guess that could be a column."
Then I said, "I wonder. Hmm. That's it. That's it." So I started that column. Then it grew into a YouTube page. Then it grew into my own JustinBSmith.com page, and MySpace, and Facebook and so on.
Did you have any negative repercussions from going completely public so that even your next-door neighbor knew the details of your life?
I did have one relative kind of say, "Oh well, I don't know about airing this business out like that. Are you OK with that?"
"Yes," I said, because I think the more we talk about it, the better our community will be.
Recently there has been a lot written about the fact that HIV is so much more stigmatized in African-American community, or that being gay is so much more stigmatized. So those on the outside tend to think that's a universal truth. But you are an example saying that there are terrific exceptions.
I'm not going to say that isn't true because a lot of African Americans don't want to talk about it especially, especially a lot of African-American churches. They don't want to talk about it because they associate HIV with homosexuality. I'm just going to very real and truthful. It's hurtful because once I tried to tell a woman who I've known for a while. She goes to church every Sunday, and she's very into Christianity, which I'm fine with.
Despite what she believes, we're still friends. I tried to tell her. I said, "Well, I need to tell you. I have a chronic illness. And that illness is --"
She responded, "I don't want to know. I don't want to know. I don't want to know."
I said, "Why don't you want to know?"
She said, "I don't want to know. I don't want to know."
I asked her, "Is it so much that you're in denial that you don't want to know about your friend's illness? How could you not want to know, if I'm your friend, if you're that caring and loving that you say you are? I just don't understand that." I probably will never understand that.
So are your parents regular churchgoers?
My father is a Christian and he is an elder, or a deacon -- I can't remember which one right now -- in the church. He's Presbyterian. My mother is an Episcopalian.
I would say yes. I think they do go regularly to church, my father especially.
Do you know if it's been addressed in their church or have you spoken in their churches?
Actually, no I have not. [laughs] I think now that you mention it -- that would be perfect. We should go to both of their churches and actually speak about it because they do know me. They recognize me as a child and growing up in the church -- especially my father's church. You know, that's one place I haven't spoken. [laughs]
So tell me about your online presence. Have you gotten lots of e-mails from people who just found out? Tell me a little bit about that.
Oh yes, the first e-mail that I got was, "So you got poked by a dirty dick."
I said, "Uh, hmm, that wasn't very nice." [laughs]
That was the first comment that I got. It was after my first video. I said, "OK, well look. Oh wow, there's already 100 hits after the first day."
I said, "That's amazing." Then I got an e-mail from a 19-year-old boy and I'll never forget it. I still have it actually.
He said, "Justin, I commend you for your bravery. Thank you so much for doing this." It went along the lines of saying, "Before I saw your journal, I thought I was alone and I was going to kill myself" because he just found out that he was positive.
But I've gotten e-mails from a lot of people around the world saying, "Thank you so much for what you're doing. This is exactly what we need. A candid and involved look of HIV, a face to the name."
"We need to see exactly what goes on, and what is happening to people who actually have HIV, what they have to go through." Maybe it'll make people think twice about what they're doing behavior-wise, about the risks that they're taking.
These are negative people writing to you who find that you make HIV real?
Yes, yes. It makes it real. A lot of people are thankful for it.
Let's turn to another subject. A lot of people feel that their social life and their sex life will end when they find out that they're HIV positive because it's such a difficult subject to bring up while you're dating. How did you deal with dating once you found out that you were positive?
I was still dating actually when I found out that I was positive. I was open and honest about it. I was very upfront.
How do you do that? The problem is a lot of people have no idea how to bring up something like this or when it's appropriate to let someone know. It's an awkward subject, so how do you bring it up?
If I was dating somebody seriously, I would take him alone, to a place of comfort and say, "There's something I really have to bring up with you before we get serious. I need to know how you feel about it because it will make or break our relationship."
Usually that guy would say, "What do you need to tell me?" I would say, "Well, I'm HIV positive." Either they run or they stay. [laughs]
Have you had a lot of runners?
No. No, actually, no. I had one. I had one, one guy. I was out to dinner with him. After dinner, we drove to his house and I said, " I really would like to go home with you. [laughs] But there's something I have to tell you before we even step outside this car." And I told him, and he said, "OK, let me drop you off home." [laughs] That was fine because I was open and honest and so was he.
And you survived the moment.
You didn't feel humiliated?
No, no because the one thing is I believe that you should be given a choice. Everyone should be given a choice. That is your choice if you don't want to see me because of my HIV. That is your choice if you do want to see me just because of me.
Nobody responded with anger?
No, no. Nobody responded with anger because it's all about how you do things. It's all about how you say things and exactly what setting you're in. I mean I'm sure this is not a discussion I'd have over dinner, at a restaurant or what have you or in public per se. I just wouldn't do it.
So once you had gotten used to being positive, did you stop your drug use and partying? Did that change you in that way?
When I found out I was positive, I did it harder. [laughs] I did it harder. I was depressed. Oh, I was going out more. I was drinking more and I was doing a lot more cocaine. Then I decided "You know what? I can't do this to myself." So I kind of stopped drinking, and I stopped going out and drugging a lot.
When was it? What was the timing?
I think it was two months after I found out I was positive when I started doing a lot. Then I stopped. Then lo and behold, I met my partner, right after that.
Tell me about that.
[laughs] Well, it's been great actually. We're still together. It'll be about three years. But yes, we're still together. Actually, he was very supportive in me telling him about my HIV status. He was OK with it. He held me, and I cried. He was like, "It's OK with me. It's alright."
How did you meet him?
[laughs] I met him at a bar.
Did you tell him immediately?
I told him that night. I said, "There's something I have to tell you." And that was it.
And he was cool?
Yes, he was fine. He was totally fine.
Wow, that's amazing. So you really didn't have to deal too much with dating issues?
No, and the thing is a lot of people come to me and say, "How do I deal with this, with dating?" I try to tell them as best as I possibly can. What they probably might want to think about doing is focusing on themselves. A lot of people want to date so bad. They're like, "Oh, I want to date. I want to date. I want to date." I'm like, "Well, why don't you re-focus on yourself first?"
Because a lot of them are just finding out that they're HIV positive. "Well, you have to focus on yourself first because you have to get through. You probably think you're fine mentally. But you're newly diagnosed and you're thinking about dating other people. I think, personally, you probably need to think about building yourself up a little bit before you even think about dating somebody else."
One guy that I knew was still having unprotected sex. He said to me, "Oh, I'm just having unprotected sex with other positive people."
I told him, "No, honey, that's not how it works." Two positives don't make a positive. It's not a good thing. You can get re-infected.
Or you could get other STDs [sexually transmitted diseases].
So many different factors when you're positive to look out for. It's just horrible. You can't do that. Your body's going to go through so much.
How did you proceed with getting your life back together in terms of a job and things like that?
Honestly, I did what I had to do to survive. Basically, I was a stripper. I went back to stripping and it was really bad. That's why cocaine was so prevalent in my life. In the entertainment world, it's not hard to find. I was living in D.C. at a studio apartment in southwest at the Waterfront, paying $1,000 dollars for rent.
And you were stripping to pay your rent. Were you on meds at that point?
No, I was not.
Did you finally get to see an HIV specialist at that point?
Yes, I went to Whitman-Walker every single time I needed blood work done. I think it was every three months that they were monitoring me. Then my T-cell count dropped to 261 because of the drugs and drinking. My doctor said, "We're going to have to put you on meds."
Were you worried about that?
What did you think?
I didn't think anything except for "I really hope that the side effects of the medication don't kill me or make me feel bad or whatever."
Did you know other people who were on medications who could offer you support?
Where did you know them from?
I've been around HIV-positive people since I was 19 years old.
How did that happen? How did you get to be around them?
Just from going out into the club scene. I've been going out since I was a younger guy. I always knew that it was OK. I always knew that I was going to be OK, but you never know. You never know. You think one day you're going to be OK and the next day you could be feeling bad because of the medications.
Did you believe in them?
Yes, I did. Yes, I do. As you know, there are people out there called HIV denialists, or they call themselves "dissidents." Those people are so crazy. They don't believe in taking antiretroviral drugs. They actually say to me, "Oh, you shouldn't be taking drugs, Justin. It's so toxic to your body."
My response is: "Yes, but all drugs are toxic to your body. Yes, but HIV is more toxic to your body. You're not going to tell me that just eating right and exercising is going to help you?"
Do they come to you on your Web site?
Oh yes. Oh yes. I've been bombarded with comments sometimes and questions. There's one girl from South Africa that hit me up with a comment that I just had to block. I just couldn't take it anymore. She was trying to recruit me on to being a denialist. I kept trying to tell her, "Really, please stop." She wouldn't stop, so I just blocked her.
But you knew that antiretrovirals could help you?
Yes, yes. And as of now, my viral load is undetectable. And my CD4 count is about 500.
Great. How do you feel?
I feel like a million bucks.
You're not suffering with side effects right now?
No, I'm on Reyataz [atazanavir], Norvir [ritonavir] and Truvada [tenofovir/FTC], which is a three-pill-a-day once-a-day regimen. The only side effect that I got at first was my eyes had gotten yellow a little. But then I just drank more fluids during the day and it was gone.
Does it interfere with your life in any way?
Nope, because I remember I take them before I eat. And I'm eating all the time. My partner tells me, "I don't know where it goes." [laughs]
You're just a big eater? [laughs]
Yes, I eat big. I eat big.
Do you live with your partner now?
Yes, we live in Laurel, Maryland.
Is that a suburb of D.C.?
Yes it is. It's 20 minutes out of D.C.. We're trying to settle in on a house right now actually. It's still in Laurel, Maryland. Just a lot of good things going on. He's a CEO [chief executive officer] of a company, of an HIV and AIDS company in D.C. called Prevention Works!, which is a needle exchange company.
So he has an understanding of the issue?
Oh, yes. Oh, yes, yes, yes. Actually, it's kind of funny because a friend of mine told me, "Oh, so you're like the power HIV couple of D.C."
I told him, "I don't know how to take that." [laughs]
I thought it was cute, but then I thought, "Well, I don't know." [laughs]
Do you feel that you want to take a leadership position? You're on the board of directors of --
Yes, board of directors of Whitman-Walker Clinic in Washington DC.
Is that the biggest HIV clinic in D.C.?
Yes, that is. Of course, as you know, the economy is really bad right now. And we're putting on an AIDS walk actually on October the 3rd. If you go to the Web site, wwc.org, and hit the "About Us" link and then go to "AIDS Walk" on the left-hand side, you'll see the top five fund-raisers and my name is on it because I'm trying to raise funds for that AIDS walk.
So you spend some amount of time every week on AIDS activism?
Oh, god yes. And my friend, Brandon Macsata who I think his company's called ADAP Advocacy and his fight is with the ADAP list, people put on lists waiting to get HIV medications from ADAP [AIDS Drug Assistance Program]. That's just crazy to me.
ADAP is for people who can't afford to pay for meds or don't have insurance.
Don't you get sick of talking and thinking about HIV when you have HIV? Is there a saturation point? You write about it, you blog about it, you video tape, you -- [laughs]
[laughs] I do it all.
Yes, you do it all. Is it something that heals you inside? Is it something that helps you?
It helps me tremendously to know that what I'm doing is helping to save maybe just one person. It helps me tremendously.
What do you think is missing? Why did you get infected when you were somewhat knowledgeable? What do you think you could do to change the situation and help prevent HIV in D.C., if not elsewhere?
I think that the message has been lost, especially on the younger generation. A lot of the older generation, they keep saying, "You've never been around in the '80s or '90s where people were dying by the hundreds every single day."
A lot of the younger generation is tired of hearing that. But yet, they know it's true. I mean I'm kind of in the middle, I guess, since I was raised in the '80s. But a lot of the younger people didn't see it. I guess I'm in that generation that didn't see it. It wasn't that much of an impact on me, that I did not see that happening around me.
A lot of the older people, especially gays and lesbians, usually say to me -- when I say, "Oh, I just had two friends die in the last week of AIDS." I've gotten comments saying, "Oh, you have no idea when it was back in the '80s and '90s. I had 10 friends die in a week."
And I say, "That's not what I really need to hear." [laughs]
Right. Two friends is a lot.
Yes, to me it is. Especially nowadays when the meds are so available -- well, to some.
Why are they not getting the advantage of these meds do you think?
I think that also the illusion or delusion that the younger generation may be suffering from is that all you have to do is take a pill, and you'll be fine.
That's not true. You have to also do a lot of things like take care of yourself, cut out a lot of the drinking. Do everything in moderation. Cut off the drugs completely unless you have marijuana for medicinal purposes. If it's legal, then I can't say anything bad about it. But the thing is there are a lot of things that you have to do other than just taking a pill to survive.
Like taking supplements. I believe in taking vitamin supplements. I believe in eating well, exercising and taking my meds regularly.
So you're living an overall healthy life?
That's different than when you're not HIV positive?
For instance, do you exercise three times a week? Do you juice? Do you smoothie? [laughs]
Oh gosh, totally, totally. In the morning time, I like to have an Ensure. I like to make breakfast for my partner, have maybe eggs, bacon, pancakes, something nice, I guess, or hearty.
Of course, when you're working it's kind of hard to do that because you're always on the go. At least I am. Usually when I get to work, I have a snack. I have something that's full of protein. I like fatty foods, especially because I'm afraid of lipodystrophy. I make sure my foods are high in protein and very fatty.
Why high fat?
I guess I have a preconceived notion of wasting. I'm very afraid of it. Because I'm only five foot seven, 140 pounds, waist size is 29 -- 30, excuse me. I just went up one. [laughs]
Also, I put on the pounds because what if one day I get sick and I lose 20 pounds?
Did your doctor tell you to do this?
No, that is something that I took on on my own.
What does your doctor advise you to do besides the meds?
I'm in the middle of changing doctors actually. My doctor did ask me if I wanted to take supplements. And I said, "Yes, sure. No problem." I do take supplements. I'm trying to stay healthy as possible. Vitamin C is my main supplement. Actually, like 1,000 mg a day. And let me see. I have a vitamin D supplement. And I have another supplement that actually helps keep my bones very strong. Calcium. The thing is, of course, being HIV positive, we're more subject to diseases that make your bones weaker.
So you're taking calcium and vitamin D for that?
Right. But that's about it.
What do you think are the biggest issues that need fixing in HIV today?
Money. Money. Funding. Oh my gosh. The non-profits out there are dying. They're hurting just to try to keep the doors open. If their doors are shut, where's anybody going to go? The financial woes that different organizations are having -- and I can't speak about my own because I'm on the board -- I can't speak openly right now about it, but they need funding.
And Washington, D.C., has a huge rate of people infected.
Yes, yes. I mean honestly if you're on a subway, it's one in 20. If you're on a subway and you've got 20 residents of DC, just take two out, and there are people who are HIV positive.
So there's a dire need, particularly to service that community.
Yes, it's absolutely out of control here, especially in the African American community. It's at its worst. Then the thing is a lot of people think it's worse now because those numbers that are from the CDC [U.S. Centers for Disease Control and Prevention] are from last year. So a lot of people think that it's worse now. I think it's probably worse. But the main thing that we need is funding for these organizations that are trying to save people's lives. It's really awful here in D.C..
I mean you're very unique because you're young and you're active. You must find that on the board there's not a lot of very young people who are activists.
What's up with that? Why aren't the 20-something crowd of gay men active about HIV and about Whitman-Walker?
I think that there are but a lot of them haven't been given the chance to. A lot of them think that "Oh, I can't get through because I'm so young." Actually, in D.C., especially, I can name two or three [young activists] off the top of my head. There's Dan O'Neil, who's fairly young and actually he's an HIV activist. There's Christopher Barnhill who's fairly young and he's an HIV activist.
I actually sit on the board of another organization called Al Sura Company, which holds the White Attire Affair every single year in Washington DC. We just held that event about two to three weeks ago. And it was fantastic. It was successful. We gave I think it's around 10,000 dollars to the Transgender Health Empowerment in D.C.
My partner tells me sometimes I run myself too thin. [laughs] He always tells me, "Stop doing so many things." My response is, "Yes, but if I'm not going to, who's going to?"
Did you just start this activism when you found out you had HIV? Were you an activist before?
I actually was an activist. I've been an activist in D.C. for 10 years. The first organization I was a part of was Students Opposing Brutality in Burma. We sent three students to Burma to observe what the brutalities were in Burma because of what was going on with the government then, and two of them only came back.
What happened to the other?
She got detained, but then she eventually came back.
Wow. What school were you in?
I went to Montgomery College, which is a junior school. It's funny because everybody else went to Georgetown and George Washington. [laughs] But it was cool.
This is part of your DNA to be an activist?
Yes, and it's funny because that's just who I am. My father always told me to stand up for myself. My father always taught me that. And my mom always taught me to be strong. So with those two, I myself feel like I'm unstoppable.
How did you go from your previous job to your current job? And are you out there?
Yes, I actually work for the IRS [Internal Revenue Service]. [laughs] I'm out openly as a gay man, and I'm out openly as an HIV-positive man.
How did you do that? How did you come out?
I told my supervisor. I said, "There are things that I need. I might need a snack during the day because I need more nutrients than the regular person who's negative. That's just how it is."
She said, "OK, why would you need this?"
I told her, "Because I'm HIV positive."
She said, "OK. No problem." She was completely open to it.
Did you expect a bad reaction?
No. I didn't expect a bad reaction but I braced myself for the worst, [laughs] just in case.
How long have you worked there?
Since March .
You're a relatively new employee. How soon into your employment did you reveal your story?
Actually, about three weeks ago. It's been going well since then.
That's great. How do you think having HIV has changed you?
I hate to say this, but HIV has changed me for the good. It's kind of focused me, had me refocus on education. I just was awarded my associate's degree. I didn't want to go to school ever again until I found out that I was positive. I said, "You know what? I really need to go back to school. I don't want it to be too late." Of course, I was thinking the worst. It's time to focus on the good that Justin can do in the community. That's how it's been.
Do you think it really is finding out you have HIV or is it also just getting older?
Both. [laughs] I'm 29 years old and I'm about to turn 30 on December 27th. I'm probably at that age where I'm ready to calm down and settle down and kind of just let life go, and grab life by the -- excuse me for saying this -- balls. [laughs]
It's about that time.
You mentioned that you were in the military from 1999 to 2003.
Yes. I loved it actually. [laughs] I loved it. I'm a very physical person. It was '99 to 2003. I was in the United States Air Force. I was stationed at Dover Air Force Base actually during 9/11. And that was horrible.
Where's Dover Air Force Base?
Dover Air Force Base is in Delaware. It's actually what's called the military mortuary because every single dead body that the military has comes through that base.
When 9/11 happened, I volunteered to do mortuary duty. But then when I found out a friend of mine had passed away in the Pentagon, I couldn't do it.
When you say mortuary duty, what do you have to do?
You have to put together the bodies and actually put them in their uniforms and make them look good. Make them look presentable like they're saluting the president.
So when they go to the funeral, they look good.
Were you out as a gay man back in 1999?
Oh yes. [laughs]
I don't remember if "don't ask, don't tell" was around in 1999, but did you find it a problem being gay in the military?
I did not. I did not because I made a great group of friends who were also gay.
So there are a lot of gay people in the military?
Oh, gosh. There are so many. So many.
So you found a home. [laughs]
Yes, pretty much. Yes.
Why did you join the military?
Probably arrogantly, because I wanted to do something else. I was working three jobs. I was an intern, I was a waiter and I was a stripper at the same time. It really hurt. My body was looking like it was 20 going on 200. [laughs]
Then I saw a bus drive by and it said "United States Air Force. Aim High." I said, "Hmm, I could do that." Then I told my dad and he said, "You will never make it."
Of course, telling a 19 year old [laughs] that you'll never make it, what is he going to do, or she going to do?
Right. It's a dare.
She's going to prove you wrong. Yes, so I did.
How was basic training?
It was awesome. I loved it. I loved the physical nature of it. I loved it. Off the hook. I loved it. [laughs] Push ups. Running at five o'clock in the morning. Being my personal best. It's awesome. I loved it. It kept me focused.
Did it help you with learning about discipline and stuff like that?
You weren't sent overseas?
No, I was never sent overseas.
I guess you were lucky.
Yes, I was very lucky.
What did you do in the Air Force?
I did computer operations.
Were you always local, in Maryland or Delaware?
Yes, always local.
What is it like being a veteran?
I'm a disabled veteran actually, technically. Not because of the HIV, but because I have thyroid disease.
Are there a lot of HIV-positive vets?
I think there are. If you do become positive in the military, they do have options where -- well, one, you do not go anywhere. They do not send you anywhere but CONUS bases, which is the Continental United States bases. They don't send you overseas if you are HIV positive, especially not to hazardous areas at all.
But you weren't positive when you were in the military.
No, I was not.
Did you know people who were positive in the military?
Yes, I did. Yes, actually it was a Navy guy that I had dated that was positive. He's actually still in the area. I still talk to him and he's doing fine.
What's the weirdest rumor or myth that you've heard about HIV?
If I hear one more thing about saliva or the toilet seat, about getting HIV from a toilet seat, I'm going to scream.
I'm like, "Oh my gosh. Seriously? No, that doesn't happen."
People just ask you randomly?
People do ask me randomly about "Is it OK I sit on the toilet after my brother sat on the toilet?" Or whatever. I'm like, "Yes, it's perfectly fine." [laughs]
Are people still pretty ignorant about HIV?
Yes. Yes, I would say so. But the one thing about ignorance is that if you're really truly ignorant about HIV, you're not going to ask. These people are asking, so I wouldn't call them ignorant. I would just call them inquisitive.
What advice would you give to someone who has just found that they are HIV positive?
The advice that I would give to somebody that just found out that they're positive is start looking for a free clinic or somewhere where you can find treatment. Go find a case manager and this case manager should be able to steer you in the right direction where you need to go.
After you get your blood test and everything back, and find out that you have a low viral load, then you don't need to do anything right now. But the only reason why you know that is because you go and seek treatment. So I say, seek treatment as early as possible.
You know people who had HIV and died because they didn't take care of themselves, or they didn't take their virus seriously. How could we help people like that? How would you talk them into taking care of themselves?
I was just thinking about a young man that -- gosh, this is kind of hard actually. He was 20-something years old, was a little younger than me actually, two years younger than me. He didn't do anything for his virus, and he faded away.
He was a beautiful young man. He was just a beautiful young man inside and out. The only thing I could tell him was he didn't tell anybody. He wasn't honest with himself about what he had. The first thing that you need to do is be honest with yourself because without treatment you're going to die. You are going to die.
When you get a life-threatening disease and you're like 23 or 24, whatever, young, you think, "Whatever. I'm going to die. Oh, whatever." When you're that age, you don't believe in mortality. It's just impossible to imagine that it's really going to happen.
Yes, but when it sinks in, it sinks in real hard. It does. The thing is being young and thinking that you're invincible, that only lasts a short time.
These young people that are being infected, "Ugh. I've got HIV. Oh whatever, I'll take care of it later."
No. You need to take care of it now. Now. Not now, but right now. A lot of these people don't understand that. They don't know anything about opportunistic infections. They're not properly educated.
They just know that, "I have HIV. I can just go get medication. I'll be OK." Wrong. Totally wrong. It's a misconception. It's just wrong. I feel bad because a lot of my friends did have that mentality and now they're not here with me. And it's sad. I think of them every single day of my life. It makes cry right now. I'm tearing up a little bit. [laughs]
It sounds like it also keeps you focused on doing what's right.
Yes, it does. I do this for them. I do this for my little brothers, and my community and the world. I do this because I care.
With that we have to bring this interview to a close. Justin, it's been such a pleasure. Thank you.
Thank you so much for having me on.
Thank you for taking the time to talk with me. I'm sure you'll get lots of people contacting you and getting some of your amazing strength.
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