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Don't Let HIV Be the Only Thing in Your Life: An Interview With Tim McCarthy

Part of the Series This Positive Life

October 2, 2014

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This Positive Life

Tim McCarthy wanted to be "vital" in the world; he wanted to make a difference. He went from a fragmented family to designing custom software, founding computer companies and driving a red Porsche. Then, in 1987, he was diagnosed with HIV, and went on to a troubling range of AIDS-related illnesses. So why does he say that HIV saved his life?

A man with many stories to tell, he believes that the immune system is where the spiritual and material worlds meet -- and that the key to staying healthy is having a way to give back.

After joining ACT UP, he found a profound "soul connection" behind the lens of a video camera. He's been to 90 countries on seven continents, documenting LGBT lives around the world, and contributed powerful footage to the Oscar-nominated How to Survive a Plague.

From the back porch of his dream house outside Provincetown, Massachusetts, he encourages those newly diagnosed to take HIV treatment, and to seek out HIV-positive people who are about being active in their lives: "The last thing you should do is avoid it. Deal with it, and move on."

Inspiring stories of people living with HIV.

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.

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This article was provided by TheBody. It is a part of the publication This Positive Life.


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