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PODCAST: 'Unstoppable' AIDS Activist Fights for Older, Longtime Survivors

By Emily Frost | December 2, 2015 9:15am
 Following his diagnosis, Myron Gold never thought he'd live past three months. Instead, he has survived with HIV for more than 20 years.
Following his diagnosis, Myron Gold never thought he'd live past three months. Instead, he has survived with HIV for more than 20 years.
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DNAinfo/Emily Frost

UPPER WEST SIDE — Myron Gold, 74, never thought he'd make it this long.

He was diagnosed almost 22 years ago with HIV and told by his doctors he'd be dead within three months. 

As if a death sentence wasn't painful enough, his diagnosis was announced in a waiting room filled with people, at a time when the stigma and misinformation about AIDS and HIV were rampant, he explained. 

Gold, who has lived in the neighborhood for nearly 50 years, has made it his mission to advocate for people like him — older survivors of the epidemic who never thought they'd live this long. 

AIDS is not just a disease that affects young people, Gold tells anyone who will listen, from world leaders at the United Nations to city health officials. 

 A copy of Body Positive, a magazine about AIDS and HIV featured Myron Gold on its cover. Gold became an activist shortly after he was diagnosed.
A copy of Body Positive, a magazine about AIDS and HIV featured Myron Gold on its cover. Gold became an activist shortly after he was diagnosed.
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DNAinfo/Emily Frost

Not only are older people suffering, but many of them have been cast out by their families or hide their illness, he said. 

Part of helping people understand that AIDS and HIV do not only impact younger people is by connecting with them, Gold said. He gets meals through Citymeals on Wheels and is part of its Friendly Visiting program, which links volunteers with those the program serves. 

Volunteer Josh Klinski, 38, who was paired with Gold through the program, described him as "unstoppable." He visits Gold weekly, creating the kind of intergenerational connections that help older HIV and AIDS survivors not feel so alone, Gold said.

DNAinfo New York sat down with Gold to talk about changes in perceptions, stigma and advocacy efforts, as well as his personal journey with the disease over the past two decades. 

Emily: Myron, you're 74, almost 75, and you've been living on the Upper West Side for almost 50 years. I was wondering if you could take us back to what the neighborhood was like when you first moved here.

Myron: It was very different. Prices, first of all, were much cheaper then. There were a lot of restaurants, and I've seen the metamorphosis of this neighborhood since then. I mean, if you go walk down Amsterdam or Columbus, half the restaurants have closed, the landlords have soaked them with such high rent they can't stand it anymore. There was a restaurant we used to have breakfast at every day for 20 years called Nick's Burger Joint on 77th Street. It was the best. You have two eggs, toast, juice, coffee, potatoes, $4. You can't get that anymore, now you're lucky if you get it for $8. They closed because they raised their rent from $20,000 to $60,000, so he couldn't stay.

When I moved here in '66 it was so different, now in 2015, you'll have Bloomingdale's opening on 72nd Street, you have Brook's Brothers on 86th Street. It's a high-income area. I get sick for three weeks, I go down this restaurant closed, that restaurant closed, it's unbelievable. The change is crazy.

Emily: You contracted HIV in the early 90s and you're ...

Myron: December 29th, 1993 is the day I was diagnosed, to quite a shock because I hadn't been sick at all.

Emily: Yeah, can you take us back to that day and what it was like to receive that diagnosis?

Myron: Now, what happened was I got ... I was seeing a doctor and she took some blood tests and says, ‘you know, something's wrong with your blood, I think you should go to the hospital.’ The day she told me to go to the hospital to do some tests, I collapsed at Bellevue and I'll never forget this, because now I'm very ... an advocate and into the HIPAA laws and privacy, but I will tell you, in '93 the social worker comes out in the ICU, and announces to me in front of about 50 people, Myron, you have AIDS. In front of everybody. You can't do that anymore.

That was very unsettling. I just was stunned because I really didn't expect it because I wasn't that ... I had just gotten sick two days, I've been very sick since. I've had a rough ride, because I was 53 then, and now I'm ... It'll be 22 years in December that I have this, but I'm not like a lot of people you just have HIV, they're not sick. Some have never had a cold. The younger people, they don't know what this is all about. I do. I've been through it all.

Emily: Was that because you were diagnosed before the drugs were further developed?

Myron: Yeah, there were no drugs then. See I was fortunate, I have very good doctors. One of my doctors is a very prominent doctor from St. Luke's. I went with him to Vancouver to the international AIDS conference in '95 when they announced the first protease inhibitor for AIDS, and when I came back to New York, he had it for me. That was the first one I took, but I was on AZT until that medicine came along. Where a lot of people died from meds, I survived with it.

Emily: At the time, there was ... your family didn't react necessarily well. There were some misconceptions about HIV and AIDS at the time.

Myron: They were scared. That's a problem that with Charlie Sheen that's opened up the wounds again. People are afraid then, you have people on television Jenny McCarthy carrying on that she's in a show with him, she kisses him and maybe he gave her AIDS. You don't get it from kissing. Where is the education? Do you know? Anyway, my family was very uptight and I'll tell you, I didn't tell them for several years. Now, at the beginning, when I used to go home, the standard stories you've heard, plastic spoons, plastic forks, plastic dishes in the garbage disposal when I was finished ... I had gloves on, and they really got ... When I think about it going back, I mean, this was part of the illness at the beginning. Everybody was frightened, scared, and we really didn't have the information we have now of how it's transmitted, even if I used the bathroom, everything ... I went to the bathroom, they went in there and washed the whole bathroom after, you know. This just went on ...

Emily: You picked up a baby, and ...

Myron: The baby is the worst thing for me that ever happened to me. This really hurt me. My sister was at Albert Einstein Hospital, the only baby she ever had, and I go into the hospital there and all the relatives are holding the baby, and then I wound up with the baby. All of a sudden I hear screaming, ‘Oh my god, oh my God, he has AIDS!’ They screamed it out. I put the baby down. I was so hurt. I can't even tell you right now. I was so hurt.

The problem with me right now is all these young people that have this, they go for all these services, they get free food, housing, all that. They don't know nothing what I'm telling you about, nothing. They have no background, they don't want to hear about it, they're not interested, they don't want to know. They don't want to know that I went to a funeral every day of the week. Every day. I went to thousands of funerals.

Emily: You went to more than 1,000 funerals. Were these all people you knew?

Myron: People I worked with. I just lost more people this year, already, and some of them are not my age, this woman just died, 53, last year and my friend's wife died, she was 53. My friend died, he was 53, from other complications, you know, liver disease, diabetes.

Emily: Young people don't want to hear about the funerals.

Myron: They don't want to hear about death. They don't want to hear about any of this.

Emily: Do you think that's important that they hear about the history?

Myron: As far as I'm concerned, when I talk about this, that you should know the history of this. This is not about getting a Metro card, or food stamps, or housing. This is about your life, because you have an illness that you will have the rest of your life, and you have to understand where it came from, and where you're going with it.

Emily: I know you've had illnesses; did you expect to do as well as you've done?

Myron: No, well, what happened was the first thing they told me when I got sick was I was going to be dead in three months. A lot of people were surprised because now we're all long time survivors. We never expected it. I didn't expect to still be here, but when the medicines came, it changed everything.

Emily: You went to a lot of funerals; you also became an advocate. Can you tell me about your advocacy work?

Myron: See, my whole life, I've been an advocate. I was a Civil Rights advocate in 1969, I was at the Stonewall after Judy Garland's funeral. We went over there, then the cops came, and I got arrested, and everything.

Emily: You were there?

Myron: I was right there. A part of history. I was in every newspaper, and then when I was diagnosed, it was only natural I was going to become an advocate. Now, at this point now, I'm fighting for people over 50 living with this illness.

Emily: How did your advocacy change from when you were first diagnosed to now? What were you focused on in the '90s and early 2000s?

Myron: Getting affordable healthcare, meaning medicine ... development of medicine with the pharmaceutical companies to help people so they would survive. How many funerals are you going to go to? That's what the focus was then. We never expected that the focus would change to age. Now, the problem is with age, because with people living longer, you're dealing with co-morbidities: heart disease, diabetes, kidney disease, liver disease on top of it, which makes it worse.

Emily: Are people still hiding the fact that they have AIDS and HIV?

Myron: Yes.

Emily: Is that something you're working on?

Myron: I go to GMHC. I see young people. They have families who don't even know they have it. They have never told them. They can't deal with it. They don't live with them, so they don't know.

Emily: World AIDS day is coming up; how do you feel on that day when it comes every year?

Myron: It's a bad day for me because it brings back all my friends that died.

Two years ago I went to the International Day of Seniors at the U.N. I got up and spoke about HIV over 50. All of these people from all the countries, ambassadors, presidents, they knew nothing about it. Nothing. ‘We didn't know that that ... We thought it was an illness for young people.’ They had no idea that it was over 50. The ambassadors from France and Italy came over to me, they thanked me, they sent me emails. They went back to their countries and started organizations for people over 50, because they were in hiding. Nobody wants to admit anything. That was the highlight of my life, speaking at the U.N., it was really good. The reception I got there was incredible.

A lot of families have thrown out their family members because they have it. They don't want to bother with them, which is unbelievable.

Emily: Because they have HIV or AIDS?

Myron: Yeah, they can't deal with it. This is the problem. I had a man I knew, he was in his 60s. He used to go home to visit his family. Every time he went over there, when he left, his mother would throw the mattress out the window into the street.

Emily: You've said people think everything's fine, but it's not.

Myron: Well, people in general ... The public thinks this went away. They don't hear about it anymore because now it's considered by the CDC a chronic manageable disease, but you can't tell me that I have a chronic manageable disease when I've been sick for 22 years, in and out of the hospital, near death. No, I don't look at it that way at all. When I have to take medicine every day for the rest of my life, I don't consider that a chronic manageable disease, I always fight with the health commissioner about that, but that's how I feel about it.

Emily: You talked about co-morbidities, and that being an issue. That changes things in terms of ...

Myron: Well, as you're getting older, you get other things that you're going to die of.

Emily: We were talking about changing opinions and stigma…you're out as gay. You've been out, but you've said that many older people you know are not. Is that changing?

Myron: No, a lot of older people don't want anyone to know their business. They're still uptight about it, they won't talk about it. I saw some seniors, I know they're GMHC clients, they would never tell anyone at that senior center that they're gay, never. They're just so uptight about that because there's still rejection out there.

Emily: In terms of the things that you've been through and lived through, you said you were involved in the Civil Rights struggle. You marched alongside Martin Luther King, you met Rosa Parks.

Myron: Yeah, I marched in the ...

Emily: Can you tell us about that?

Myron: The marches, I was very involved in Civil Rights. My friends didn't like it because they're all prejudiced ... they were prejudiced and ...

Emily: You've really devoted your life to advocacy. Was there a moment when you decided to switch to that, because I know you had a previous career in fashion.

Myron: I was a fashion designer, yeah. Well, I couldn't work anymore. I was sick.

Emily: You used to design for Elizabeth Taylor and Doris Day. Do you have any favorite memories from that time?

Myron: It was a different world, but I like working with people from Hollywood and people in the theater. That was very exciting time. There was no illness then, soon as the illness that ... I remember Larry Kert, who I knew, Larry Kert was in “West Side Story,” he came down with ... I knew from the very beginning he was sick, and then Brad Davis from “Midnight Express” ... There's a whole list of them. Then one of the big designers, Willi Smith, the black designer, he was the first big black designer and he died. It just goes on, and on, and on.

Emily: I know it's harder for you to get out and about.

Myron: It's very hard. I'll only tell you, but people never believe this. We go down to GHMC, and now with the holiday and everything…It's on 33rd and 10th. We're over here on 83rd. It'll take me two hours to get there on the bus, unless I take Access-a-Ride, the bus takes two hours to get there. There's so much traffic. People never believe me and say, ‘Oh, you go on the train, you'll be here in a half hour.’ I try to go on the subway with a scooter. When you get there the train pulls in, and you're not going to believe this. The door opens, and the platform and the door is this difference. I can't get on there.

Emily: There's a big gap?

Myron: Yeah, there's a very big gap. I tried it once more in New York, no good.

Emily: In getting around on the sidewalks, do you think people could be better about older people moving around?

Myron: There's a terrible discrimination against seniors in this city ... everywhere. They don't know how to deal with scooters, or wheel chairs, or old people on the bus. You hear insults, young people insulting older people on the bus all the time. They don't like the scooter because it slows the bus down. You have to get on and then get strapped down, and all that. Then get off. They resent that. The worst is the tourists. The tourists act like they never saw a wheel chair in their life. When I come along, they don't know what to do, but this is what I deal with every day. Discrimination against seniors. I see the way that people get treated on the bus, older people with walkers. The bus drivers are very nasty. This goes on every day.

Emily: That's a real change you feel in the neighborhood in the time that you've lived here?

Myron: Yes.

Emily: You mentioned Josh. Josh is a volunteer with City Meals on Wheels and he wanted to connect with an older person and help them. Why do you think he chose you, or why do you think you guys were matched?

Myron: I know because it's a fun thing is usually with the buddy system, is usually the ages are very similar. It's unusual. He liked where I was coming from, what I've done, and my work, and this work. He really respected what I'd done, and he wanted to hear about it, so the first day he was here we hit it right off.

Emily: You said you were feeling a little lonely and depressed previously?

Myron: Yeah.

Emily: Now you feel like you have a friend who comes?

Myron: Yeah, I have friends, I have boyfriends, all that stuff. This is not the same. We have a unique relationship. We really like each other. We have a lot to say and he has a lot to learn from me, and he likes I was in fashion, and I give him a lot of tips, and everything. We just enjoy going out to eat. Matter of fact, Josh and his friend, they're taking me out for my birthday next week to a Shun Lee restaurant, do you know that?

Emily: Yes.

Myron: They're going to pick me up with a taxi, take my walker.

Emily: Do you think that that intergenerational pairing of you and Josh is something other people should look into?

Myron: This is something that I talk about. That we need to see more intergenerational attitudes between younger people and older people.

Emily: For the future of the neighborhood, the Upper West Side, what are you hoping for it?

Myron: Well, this is the up and coming place. Even though it's $15 to see a movie now. When I was young it was 5 cents, when I was a kid.

Emily: What was it when you first moved here?

Myron: A couple dollars. Now, I lived on the Upper East Side, my very first apartment on East 27th and 3rd, I love it here much better.

Emily: Why is that?

Myron: It's just the people are more real up here, because they walk around with their noses up in the air on the East Side. This is totally different. Everyone's down to earth here. You don't have that same attitude here.

Emily: In the future, do you think you're going to keep advocating? What is your next goal? What's your future looking like?

Myron: Now, I'm disappointed because I can't do what I used to do. I can't do the traveling. I used to like to go to the conferences, and I speak up at the conferences. Matter of fact, I was at the new World Trade Center, went to the Governor's Campaign to End AIDS in 2020. I got up and let them have it because all they were talking about is stop the illness, stop the young people ... I got up, ‘That's fine, thank you, but what about the long time survivors? Are you just going to have a campaign on our backs? Where's the support for the long time survivors that have survived all this and what they're dealing with?

Emily: Well, it sounds like you're not slowing down.

Myron: No.

Emily: Well, thank you for talking with me.

Myron: I'm just slower physically, I feel.

Emily: Right.

Myron: Oh, it's been a pleasure.

Emily: I really appreciate it.

Myron: I enjoyed it.

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