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Mark Patton on Fighting the HIV Horror Show With Honesty

Part of the Series This Positive Life

October 22, 2013

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What HIV regimen are you on?

I don't know the names of them, because they're all in Spanish. I'm on a triple-cocktail regimen. And I use an antidepressant. And I manage neuropathy with pain management meditation. I'm on Combivir [AZT/3TC], Kaletra [lopinavir/ritonavir] and Viread [tenofovir] -- that's in English.

So you use meditation to keep healthy?

Oh God, yes.

Do you exercise or keep a special diet?

I eat whatever I want. I'm lucky. Before, I had a really high metabolism. My problem, generally, is keeping weight on as opposed to getting heavy. I did get heavy once. I have low testosterone and I was on medication and it made me more butch, and when I was taking those injections I got a little heavier; but once I could stop those, that stopped. I like to have a cocktail, a glass of wine, whatever, but I like to keep my system as clear as I possibly can. I like to know that when the day comes that I need something, I want to be able to utilize it.

I lost the ability to walk for nine months, because of neuropathy. I mean, literally my feet would not support me; it was the most excruciating pain. When I had neuropathy, at that time, the protocol was Neurontin [gabapentin], which is an anti-seizure medicine, nine 250-milligram tablets a day. I did that, and I did the meditation, like really serious pain management stuff. And now I use an antidepressant called Lyrica [pregabalin], and one of the side effects is that it happens to address neuropathy, so I lucked out there because it's an easy pill to take. I have numbness, but it's manageable to my normal life.

How do you think having HIV has changed you?

"I've been in a place where the pain is so excruciating -- I had no option, I learned to 'go away' from my pain. ... You come to a certain place in your life where you learn that you are not your pain, and that you are not your illness."

Oh, it informs everything -- it changed my life completely. I have a girlfriend right now who I grew up with who is in hospice for uterine cancer. She's really battled strongly for five years and now the end has come and I know where she's at. I can talk to her. We talk and she knows I understand what she's talking about, because I've been there. I've been in a place where the pain is so excruciating -- I had no option, I learned to "go away" from my pain.

There's going be some of your readers who understand this exactly. You come to a certain place in your life where you learn that you are not your pain, and that you are not your illness. When you get into this place where the pain is terrifying or death is terrifying, there's a place where you can go that rises above that. And I learned to do that. Like the pain of if you cut yourself, I don't even register that on a pain level. A broken arm is like, "Oh, that hurts, but that's my arm." I know people who have died excruciating deaths and who fought and were angry. Everyone dies different ways, whether it's HIV, no matter what you have. I've learned that when my time comes, or when you're in that place of what I call "your own personal agony," I just peacefully accept it. Just like relaxing into or leaning into the situation; nothing's very scary anymore.

Now I understand, because I'm further down the road, because I faced my mortality really young. When HIV hit New York in the 1980s -- and you're too young to know this, but some of the people around you might -- you can't imagine how terrifying it was, but the streets were filled with walking dead people. That's why I don't like zombies. I saw the real zombies. You'd see a man on the road and six months later you'd see this old, decrepit man coming at you and it would be your friend. And he was 25, 26 years old and you'd know that you'd never see him again. This changes a person forever.

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My dad had been through two tours in the Korean War and he had seen many of his friends die young. We had this in common. He said to me -- it was hard to explain for him -- "I understand. You can talk to me about this if you want to. I know what it's like to have somebody stand next to you one minute and then they're gone the next. And you're like, 'Why am I here?'" That's a complete change. That's a complete mindset change.

That's why I talk to people like you -- people your age -- and I talk to gay people, straight people. I say, "You're young. You don't know what you're dealing with yet. Because it's wearing a mask now. And thank God it is. But, it's wearing a disguise." Gay guys look healthy, they're HIV positive and all of a sudden they get free steroids. They get a little cosmetic surgery and the hollowness leaves their face. And they see a doctor every two months so they're screened for cancer constantly. I, personally, going back to the Nightmare on Elm Street thing: A Nightmare on Elm Street made me a really big star, and it was really nice to fight someone that kind of did a homophobic backstab on me, because of the gay content of the movie. And I would say to myself, "Why God? Why me? Why is this happening to me? I'm a good actor and a good person. And this is my shot. Why me?" And I'd always feel like show business was there. I had a very successful interior design firm, but I kept saying, "I don't think show business is finished with me yet." Then I moved to Mexico, and I thought, "Well, that's the period on the end of that sentence." And I'm sitting at my gallery, not seeking anything, and the people from Never Sleep Again came and found me. They hired a private detective for years to find me to be in this documentary. Then I became famous again in a certain world. And then that "Why me?" came up again.

I'll access it from God, because God's a really easy thing to say. But I got the answer really loud and clear. It was like, "Look, I made you famous. And then I let you get ill. But I gave you a private place to do it in, so that you could get well." Because I never would've been able to do this in public. "And then, I let you get well and then I gave you a comeback. I made you famous again. And I gave you a platform to stand on and talk about this, because you can be a witness, because you're one of the few 54-year-old gay men alive."

"I know a lot of 40-year-olds and a lot of 65-year-olds, but not a lot of 51, 52, 53, 54-year-olds. Because we were '80s club kids, and they're all gone. I get to be a witness; I get to sort of testify and say, 'This is what it is. This is how it happens.'"

I know a lot of 40-year-olds and a lot of 65-year-olds, but not a lot of 51, 52, 53, 54-year-olds. Because we were '80s club kids, and they're all gone. I get to be a witness; I get to sort of testify and say, "This is what it is. This is how it happens." Then I put on my glove, I scream for them for a second, and I talk about Freddy Krueger and everybody listens to me. I just say, "Go get tested. Even if you don't think you need it, just go get tested." And I have people who come to me and say, "I got tested, just because you told me to, because I love Jessie Walsh [Patton's character in A Nightmare on Elm Street 2]."

And that's what my life is like. I'm writing a book and we're doing a documentary. The other actors at conventions freak out because the way I'm talking to you, I talk to people at conventions. We talk about A Nightmare on Elm Street; they say, "What about the gay issue?"; we talk about that. And the ones who follow me have read The Advocate, and they'll ask me about it from the audience or say, "We're so proud of you for standing up and saying you're HIV positive" -- then everyone in the crowd knows that didn't know before.

People line up, and I scream for charity. I scream for The Trevor Project [the national LGBTQ youth suicide prevention hotline]. Because people always say I scream like a girl in the movie, I have a shirt that says, "What's so wrong with screaming like a girl? It made me rich and famous." And we talk about things like, "Why is it such a big insult to be called a girl? Is that the best you can come up with?" My dad said to me a long time ago, when he showed me how to protect myself, "If they call you a girl, fight like a girl, because girls fight with no rules. They'll bite you, they'll kick you, because they just want to win." So, that's what I do. I take the fight to them and I love it.

I scream and then I ask them to throw money in a box and there's a line up to my table around the block and people are like, "I don't want your autograph. I just want to give money to The Trevor Project and I want to shake your hand." I shake their hand, and I always have the same line -- but, I mean it -- I say, "If you ever hear anybody talk about anybody who's HIV positive or gay, you can't say anymore that you don't know anyone, because you do. You know me." And then the stories come rolling out. "My brother died of AIDS, and my family never talked about it." "My best friend from high school died of AIDS." And it becomes this line of people and they're crying and beaming and smiling and getting autographs and putting the glove on and crying some more and I sign people up for The Trevor Project and I sign them up for AIDS Healthcare Foundation and the other actors are looking at me like, "What the fuck is going on over at that table?" And the energy is so spiritual and so cool and so perfect, you know?

I can wrap this up for you by saying that my friends, the AA friends that had adopted me, said, "Honesty is the best policy," and "The truth will set you free." And I let the truth set me free. And I'm flying. I'm booked all over the world to speak. And four years ago, I was sitting in my art gallery in Mexico on a dirty little dusty road, selling purses, saying, "I know show business isn't done with me." And I'm healthy, thank God.

This transcript has been lightly edited for clarity.

Mathew Rodriguez is the editorial project manager for TheBody.com and TheBodyPRO.com.

Follow Mathew on Twitter: @mathewrodriguez.


Copyright © 2013 Remedy Health Media, LLC. All rights reserved.
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This article was provided by TheBody.com. It is a part of the publication This Positive Life.
 

Reader Comments:

Comment by: Michele Reed (Las Vegas ) Tue., Oct. 29, 2013 at 2:17 am EDT
YOUR AWESOME and so is this site!
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Comment by: TonyDewitt (Newark, NJ) Thu., Oct. 24, 2013 at 5:54 pm EDT
An excellent interview with someone who has tremendous experience with the disease, both with his acquaintances and in his own life. The take away lessons are that testing is very important, and that HIV can be transmitted via oral sex.
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Comment by: jim hamilton (Seattle, WA) Thu., Oct. 24, 2013 at 5:11 pm EDT
Can we just refer to him as "the most famous living actor KNOWN to be living with HIV"? It would be the more accurate statement.
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Comment by: Queen (East Cleveland, OH) Wed., Oct. 23, 2013 at 10:44 am EDT
Thank you so very much for the article! I love when people are just straight up! Mark Patton you are the bomb!
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