Can you start by describing how you found out you were HIV positive?
Ooh, boy; Memory Lane time, right? So it's 1987. I'm in D.C. I have my own computer companies. I had broken up with my ex in 1986. In March of '87 he called me and said, "Hey, I got AIDS. You should go get tested."
I think for most of us, we remember 1987, there wasn't anything you could do whatsoever. And it terrified me.
Of course, the first person after him that I talked with was my mother. My mother was already volunteering at the local San Diego AIDS Project. And, over the next year, she convinced me to go and get tested. Because I was terrified to get tested. What was the point, right? What was the point? There was no drugs; there was nothing out there.
I did, indeed, finally in March of '88, get tested -- and tested positive.
How old were you?
I was 30.
So once you did test positive, how did you feel when you heard the news?
Devastated. My God. I grew up, a very difficult life, and spent a lot of years trying to earn my passage into the American middle class. I had just gotten my first American Express card, you know? I was driving a red Porsche, and [wearing] custom suits. I was designing custom software for things. And even though I hated him, Ronald Reagan, my reports were ending up on his desk when he was president.
To me, it was, I was the epitome of my dream. I was finally in the American (ha-ha) middle class, right? And then, bam! It's -- the rug's pulled out. And you're dead. Oh, I was terrified, and devastated.
What was the first thing you did that helped you come to terms with your diagnosis?
OK. Well, clearly the intervention of my mother was what was a crucial one in terms of dealing with it, first of all. Because what you do with the information may sound like the issue; but the issue was really receiving the information. It was the big issue for me.
Once I got over the idea of receiving the information ... I don't mind acting. I don't mind action. It's the inaction, the indecision. So, after I tested positive and realized what was being told to me -- that the white collars, the religious communities in our country, were telling us that I deserved to die because this was God's revenge. On top of that, it was the white coats telling me there was no hope.
So what do you do at that point but get angry, right? As well as do everything you ever wanted to do before you die. So I did both.
The first thing I did was to get on a jet plane to explore the world. I flew to the Great Barrier Reef and got my master's diver's license; and then I flew to Berlin and got a chunk of the wall while it was falling. Then I realized that if I'm going to deal with this information, I need to understand and be around other people who were dealing with it. So I sought out ACT UP in 1990, in D.C.
That was the real breakthrough for me, because I began to realize that anger was -- or, rather, depression was anger turned inward, and that if I was to survive, I had to externalize that anger and really get to the root of what was up. So that was the defining moment for me.
After you told your mother about your diagnosis, how soon after did you start telling other people?
Hmm. Oh, that was a long time. I lied to my employees. I was running quite a few companies, and had quite a few employees. So I lied to everyone. I told them I had hepatitis, that I was dying from cirrhosis of the liver. Because I really did have hepatitis. And I was in this study with [the National Institutes of Health]; that's how I knew I didn't have HIV in 1985. Because they tested me. So when I tested later on, I knew the circumstances, and the time frame, and the person who did infect me, for sure. So, I lied is what I did. I just lied to everybody. It wasn't until I joined ACT UP, again, that I realized that the shame had to be externalized.
Growing up, there's a couple of phrases that guided my life. And the joke one was: I'd rather share the shame than bear the pain. It usually meant the body -- like farts, and burps, and things like that. But I realized it meant the same thing with respect to HIV! I'd rather share that shame than bear that pain!
And that's exactly what we did with ACT UP. We externalized it. We shared it and, in so doing, we changed the world.
So would you say being in ACT UP was a practice of disclosure for you, a model of disclosure?
Oh, profoundly more than that -- but of course that on the surface. What it really was, was the medicine. Because this is not just a physical disease. It's a social and psychological disease -- all the attenuating symptoms associated with prejudice and, yeah, the whole bit.
Except, the distinction between ... AIDS in the early years was that it was rich white men, OK? Who were used to power, and used to circumstances where they understood how the system worked. That's what made ACT UP effective. We could not just yell at the enemy; we could outthink them. And that's what How to Survive a Plague shows.
Later on, when you take a look at AIDS, the real social face of it started to show up: the poor; the less educated; the immigrants -- those people that society has always neglected. And there you have less of an interest, and less of a solution. Because that's where AIDS is at right now -- besides the young.
Once you were diagnosed, how did your relationship with families and friends change?
I came out at 13 so I've always been out. And I've always been, you know, a very self-directed person, OK? As an entrepreneur. So people are used to me being in your face about whatever it is, OK? So for this, it was no different.
In the deepest way, though, what has to be understood -- because I sit here with you -- I only started to take the drugs three years ago, OK? I did not take the drugs for the first 20-something years of my cohabitation. Because to me the drugs were only a way of making the virus more strong, and me weaker. That's the truth of the early drugs. I fought for them, all right; I certainly did. But my friends died because they took AZT, and some of that other shit. Really. All right? Fact is, we were the guinea pigs, willing to do so. And we did. We died along the way.
Which really leads to the ultimate thing, I think: PTSD is what we really have to understand. We got that one down. To me, the disease had to be approached in more than just a take-a-pill-and-find-a-cure kind of thing. Because when you really look at what solved AIDS, it's the way we changed society's reactions, en masse.
Well, you were talking a little bit how you came out at 13. Could you tell me a little bit more about your background, and growing up?
Ooh, OK. So, wow. Mom and dad together; I'm 5-1/2; six kids. Dad leaves. Mom's got nobody. And I'll tell you the early version, then the changes that came along. So she's working. She gets into an automobile accident. She ends up in the hospital for a couple of years. She loses her leg. And they put us in the orphanage for that time.
To get us back out, she found my father. He came back; got us out of the orphanage. Took us to Nebraska. Got my mother pregnant one last time -- and then ditched her and all the kids. So, he disappeared for 47 years.
About four years ago, I got a call saying that I had another sister. My mother, during that first period in which my father left, had evidently started an affair with his best friend. She had gotten pregnant twice by him. He made her put both of those girls up. So it went from seven to nine about three years ago -- four years ago, rather -- then three years ago I got a call saying my father had been located after 47 years, with two more brothers. Would I like to meet them?
So I spent literally the last day of my father's life with him in the hospital, coming out -- the whole bit.
So what's it like with your siblings now, as far as your life and your HIV status, your relationship with them?
Oh, I've been really great. I'm the person who really is the center of my family, anyway. I'm the one who has cared about it, and really nurtured it. So my brothers and sisters, shoot. Please; me being gay, and me being HIV positive, is like the least of the problems, the least of the thing. I'm like, nobody -- no, no; I'm fine. I'm really very, very lucky in that way.
Yeah. Are you in a relationship now?
No, I'm a single man.
How has HIV affected your relationships and your sex life?
Wow. That's interesting, and the most pertinent question, I think, for HIV individuals. The situation is, before and after me taking the drugs. The before part is: Why would anybody want to have a permanent relationship with me, or someone who is HIV positive -- particularly if they don't take the drugs? Because what is the future there, but a sick person? And nobody goes into a relationship knowing they're going to take care of somebody. That's the point, right? Not at all -- particularly if you're younger.
So that is, relationship-wise, that's the way I always perceived it, and acted on it myself. Why would I want to engage someone emotionally if I expected they would have to take care of me? Although I have had several three-year relationships over the past decades, so I don't mean to imply that I wasn't at all emotionally involved; because I was available. But there was always that thing nagging in the back of my mind.
But now that I've taken the drugs, the whole idea of life again comes back into it. Because no longer was I dying, or dying with AIDS -- it's not even living with AIDS anymore. The way the drugs are, two things are true: one is, I have the certain knowledge that I'm contributing in the interdiction of the overall epidemic by encouraging others to take the drugs, too. Because even if you practice the ultimate safe sex, accidents happen, and things go wrong. If you're on the drugs then the virus has even that much less of an opportunity to be transmitted. The other thing is, it really has opened up my entire life again. I feel so much healthier, and so much more engaged.
So now, obviously, the question of relationships, and what you would do, if I'm taking these drugs, is like everyone else. I expect to be alive for another 40, 50 years. I have to address that myself. It's not a static answer.
Great. OK. Well, we'll check back next year.
Yeah, indeed. I'm engaged! Engaged in life, I mean.
So tell us a little bit about where you live and how it is being positive in this community.
Oh, God. You're in my dream home right now. This is my dream home. And frankly I came here in 1993, in May of '93, to die. OK? So it's the early '90s. There are no drugs, right? You know, Clinton just gets elected -- so we figure AIDS is finally on the fucking radar of the White House. I was actually the first reporter credentialed by him -- well, not by the White House, not by him -- at the White House, for gay TV, at that point in time. Anyway, I came here because I expected this was a safe place to come and die, and to be gay. Because in the most certain way, it is.
Where are we?
We're in Provincetown, Massachusetts. Oh, my God. Where am I? Honey, you're in the gayest place in the fucking world! Period. And here it's a cultural statement, not a political one. That's the distinction. And there's the medicine. The fact is, when you walk down Commercial Street, it's not who you are as a political statement that comes into play; you can reach out and do things in such a natural way. And you feel that. You see that. You know that. There's no way that that's not nourishing and healing. Because, as I said earlier, part of this disease was psychological, and sociological. Here, those components do not exist. So those weights blow off, and the healing gets to flow.
People say you need aerobics, of course, to keep your physical body healthy. You need some kind of a social environment like that to keep your spirit healthy.
Well, let's get to that. What else do you do to keep healthy? Do you do exercise? Stick to a certain diet?
So, yeah; there's the physical and the spiritual. Let's talk the physical, since you're on that. Exercise is important for any human being. You're an idiot if you don't exercise, OK? Everybody is so conscious about what they eat. Yeah, well, half that balance is what you do output, not just input, OK? So, come on, really: How much calories do you burn? You sit on your fat ass all day long, right? And I say these in very kind ways, only to stir you to truly think about the fact that your soul has to reside in here. And my soul operates better when this machine is working better. So I do what I can to take care of it: exercise every day. Really. Because if you make the plan to exercise every day -- and, when you can't, you still ride out those times when you can't.
I travel extensively. It's not often that I come across the gym when I'm on the road. But I still do it because, really, it just makes everything flow better -- all the medicine, everything.
And then the spiritual: So, as I said earlier, when I tested positive I got on a jet plane and decided I would do everything that I wanted to do before I died. Well, someone invited me to my first Radical Faerie gathering. I had no concept of what the hell that was, OK? But somewhere in my heart said, "You have to go to this. This is going to change your life."
And I told my friend; I said to him, "Look, let me borrow your video camera." He laughed at me and said, "Go buy one." So, I mean, light bulbs, that sort of thing.
April 28 of 1990, I got my first video camera. And I went to that Radical Faerie gathering. And that's where my relationship with the Faeries, and the camera, and AIDS all really came to be into the essence of my life -- which is to travel the world in search of LGBTI culture. The medicine for me was -- because, at that time, to synopsize it, the religious circumstances were: God's revenge. That comes from an American capitalist Christian point of view. So, to get empirical evidence, you go to non-Christian, non-capitalist, non-American places, and see if we live. If we do then, ergo, we are natural. OK? So, please.
The emotional experience of being there, and going there, and finding our sisters and brothers there, and understanding it, that pushed me to my limits. It gave me something to live outside of myself. You want the key to medicine? The key to any fucking medicine is to always retain something outside of your medical circumstances. If you get sucked into your disease, you're dead. Period. Don't let your disease be the only thing in your life. You've got to have a way to give back, even while you're taking the medicine. That's the key. That's really what I've been able to do -- so far, 90 countries, in all seven continents.
Before you went on medication, did you experience HIV-related illness?
Absolutely. Yeah, without question. In the early years, I received an AIDS diagnosis, back in '89. I had [cytomegalovirus (CMV)] in the liver. It was really bad. So it's not as if I have not had issues; I most certainly did -- a variety of AIDS-related illness, or, as they used to say, ARC.
But the point is that each of them, I was able to contain them, to a point. At some point, right? But three years ago, I was not able to. My T cells plummeted to 150. And I'm the kind of person that knows in my soul how deep my well is. I could just tell it was really shallow. And I had no choice at that point but to decide whether I wanted to live or not. That's really what it was. I've had a great life, but what do you do, at that point? Do you give up your sacred beliefs that, "I don't want to take the drugs because you're all going to make HIV stronger, and destroy me?" How do you give up that?
Well, I'm sure that's the case with everybody who tests positive -- whether it's that kind of expression, or another. You have to get over the fear of what it means, to acknowledge that you live with that other life form of virus; but also, what it takes to get that cohabitation to be good for you, all right? That's the key -- and, in turn, good for society.
I made the leap. And I'm resolved. And it is hard, believe me. Giving up sacred ideas is like, oh, my God! But life's all about really embracing change. It really is.
How did you find your HIV specialist? What kind of relationship do you have?
There, I'm really, really, really lucky. Provincetown, because it's one of the first places that really dealt with HIV in the communal way, just like New York City, way back in the '80s. We've got an extensive health care system developed here. And we have a great relationship with the professional hospitals and research centers up in Boston, particularly Harvard. My doctor is one of the researchers up there at Harvard; and they're really on top of it. So in that sense, I'm very local -- Outer Cape Health Care Services.
The other thing is that I have a great relationship with my primary care people, individually. Provincetown, believe me, is such a small town you know them outside of the work. So in my mind, that's a healthier thing.
Yeah. What meds are you on, and how do you access them?
Stribild. And, because we live in Provincetown -- again, Massachusetts: a great health care system here. A great health care system. But I was self-employed, as I mentioned. I had companies. But my health care insurance company got wind of that 20 years ago, and pulled all my health care policies. I was forced to go on disability in order to receive Medicare. So I, like most people, receive my health care through Medicare. If it weren't for Medicare I don't know what I would have done these past 20 years.
Deal-wise, it hasn't been necessarily a cost thing -- although ... Stribild is a very expensive drug. But, more importantly, the security of mind -- what it must be like for a person who turns positive now, and not knowing what they're going to do for their health care. That must be horrendous. We need that national health care.
Your CD4 count had gone down to 150. What is it now? And what's your viral load?
I just got my results in. The last time I had them checked, unfortunately, was in April. I just did them this morning. Oh, well; we'll be bad for a while. The last time my T cells were 401. Yay! They're going up! Yay! And my viral load was 65. So, not undetectable, but close enough.
So what kind of work do you do now?
I travel the world in search of LGBTI culture. And I record things. That's really what it is. LIPTV.us -- Life in Provincetown Television-dot-us -- because it's all about us. And you'll [find] all kinds of crazy stuff on video. You have no idea -- including this, of course.
So what do you think are the biggest issues that need fixing in HIV today? And what do you think people should do to change the situation?
I think it's always been the same. I'm not going to talk very PC right now, but I don't give a shit. The point is that the direction was always made by people like me, who were with the disease. OK? Get us drugs to save our lives. Right? And we want to save the lives of others -- like overseas -- with it. Right? It sounds really great.
But that's really not the solution to the matter. The solution is a vaccine. Period. OK? So, come on. Let's get a reality check in here now. I appreciate all the drug money being spent on me, and others like me. But the only solution is a vaccine. No. 1.
No. 2: It's, again, the age-old issue. It's not people like me, in the 50s and the 60s; it's the teenagers and the invulnerable-minded of us. Because the vaccine is really for human beings. Human beings have accidents. Human beings aren't always responsible for what they do. It's how a society treats people who are not always the most responsible that is telling of itself. And that's really where I'm left at.
I think our young have to be attended to. I think we need to have more messages that aren't about safe sex. Because that's over with. And it was never really the correct way to go, anyway. The correct term always should have been safer sex.
But even that is bullshit. Why even talk like that? The issue should be: What kind of sex can you promote that doesn't require penetration? Or alternative ways that don't have to directly say safe sex? What about mutual masturbation? Teaching people -- getting into that. What about fetishes like frottage and things -- ways that don't require any kind of penetration, period. OK? No. Nobody's going for that. OK?
And you've seen the work that I've done. I mean, come on; even, to this day, it's a bitch, right on top of it. Because you've either got to shock them, or you've got to recruit them.
Yeah, shock. Can you talk about the video you made in Provincetown last year?
The other solution to health, by the way, is that you've got to remain engaged. You've got to always be involved with young people. And I, with others, 20-something years ago started the Gay Men's AIDS Prevention Project here in Provincetown. The original idea was we were going to do street theater -- in this case, actually, beach theater. We would do little skits like Transmission Impossible -- because Mission Impossible was the movie at the time, right? I played the Tom Cruise character. It was just absurd. It's a great video.
So the point is, we do all these crazy ways of getting people to interact. Well, what's going on now? Now, of course, it's the phone. It's Grindr, and it's anonymous hookups and all that.
One of our workers, I worked with him. We developed this idea together. It's not just my idea, by any means; it's his and mine. And then we got him dressed up in a costume that looked like a Grindr thing. And then we walked around, passing out hookups. And we made the little video and walked the Provincetown streets with that. It's fabulous!
Let's reflect back now. Can you compare how you feel about having HIV now to your feelings when you first learned you were positive?
Oh, Jesus. Wow. Whoo. That's a heavy-duty question. OK. So, when I first heard, of course I was devastated. My whole life had been taken away from me. But, like the Chinese say, we have to beware what you wished for. And I never wished for a life of money, although I was on that track. I wanted power; I wanted recognition; I wanted to be vital in the world; I wanted to make a difference.
But I must say, though, that there was a point, even at that point in my life, when I'm wearing the flashy clothes, and in the car and all that where, if it wasn't emptiness, there was a lack of soul to what I was doing. So in the deepest and sincerest way, HIV has saved my life, twice. Because the hepatitis went away, and the cirrhosis stopped. And no one understands that. OK? The CMV, actually, really was bad. And I got really, terribly sick. But somehow the CMV kicked the hep into being -- so it went away, all right? And that's all just the physical. But the emotional was just that, too. When I started my relationship with this camera, and what I do, there was a profound, profound connection of soul, and -- and there's nothing like being involved in things that give you a sense of life, that fill you. Because, in the sincerest way, I believe that the immune system is where the spiritual and the material worlds meet. And when you involve yourself in things that fill you with life, that translates back through your immune system, into the material world (your body); and that's what the placebo effect is like.
And for those that don't know what placebo is, it's where authority tells you that some non-active agent, like a sugar pill, will cure you; and you believe them -- because you actively encourage your own healing, and perform it yourself. But if that's true then the opposite is true. Those very same people who can tell you to heal yourself can tell you to kill yourself. It's called nocebo -- when they give you this diagnosis, and they tell you that you have no hope and that, you know, in like six months, one hour, and one second you're going to die and, right on cue, you die. Not to blame the victim, but don't ever underestimate your ability to control your own health in that matter.
That's actually the title of my second film, when I took my HIV back to its homeland: Nocebo = Christian Witchcraft. Because that is precisely what they were doing to us in the '80s: Falwell, Robertson, Buchanan -- the whole bit.
Wow. So any other advice you would give to people who just found out that they're positive?
Yes. Two things. Take the drugs, and go surround yourself with other HIV-positive people who are about being active in their lives, and really dealing with it head on. Don't avoid it. The last thing you should do is avoid it. Deal with it, and move on. Because no longer is it a death sentence. It's the equivalent -- and I don't like to say this, but it really is true -- it is the equivalent of diabetes; if you treat it properly, you will have that kind of a life. All right? So it ain't a death sentence, unless you take the nocebo approach. Take the placebo one. Be involved.
OK, great. Well, that's what we have time for today. Thank you so much for talking with me.
This transcript has been lightly edited for clarity.
JD Davids is the former senior editor and director of strategic communications at TheBody.com and TheBodyPRO.com.