Speaker 1: Ruby.
Speaker 2: I started hearing the rumors of gay cancer.
Speaker 3: I've been in the desert now thirty five years.
Speaker 2: They're healing powers here.
Speaker 1: Being queer and having sex is at the root of our.
Speaker 4: Liberation from just beyond the lights of Los Angeles and
Speaker 4: steamy Palm Springs, California. It's Mick Robert Bill just say,
Speaker 4: and this is silver Lining.
Speaker 3: With the old Gays.
Speaker 1: Welcome back, kids.
Speaker 4: While you're still digesting last weekend's hot dogs and fireworks,
Speaker 4: we're here to serve you something even more explosive, a
Speaker 4: very personal new episode of silver Linings.
Speaker 3: It's July and certainly heating up over here in Palm Springs.
Speaker 3: So today we're going to cool things down a bit
Speaker 3: with a conversation about living with are in community with HIV.
Speaker 1: Both Robert and I are HIV positive and open about
Speaker 1: our experiences. The journey hasn't just shaped our lives, it's
Speaker 1: reshaped our community and in many ways, the world. Since
Speaker 1: the beginning of the epidemic, over eighty eight million people
Speaker 1: worldwide have been infected with HIV, and about forty three
Speaker 1: million have already died.
Speaker 4: Nowadays, with access to proper prevention and treatment, HIV is manageable,
Speaker 4: and most people with the virus can't transmit it to others.
Speaker 1: Treated HIV can lead to the disease AIDS, and no
Speaker 1: cure exists at this time.
Speaker 2: In the nineteen eighties, the virus spread rapidly throughout the
Speaker 2: gay community. At first, there was no way to treat it,
Speaker 2: so during that time we lost a large number of
Speaker 2: gay men. The backdrop of this crisis was terrible fear
Speaker 2: and vilification of our community.
Speaker 3: As of twenty twenty three report by the CDC, approximately
Speaker 3: one point one three million people aged thirteen and older
Speaker 3: are living with diagnosed HIV in the United States today.
Speaker 3: We want to share our stories because it is not
Speaker 3: only a part of who we are, but also an
Speaker 3: integral part of our community history. I've been living with
Speaker 3: HIV for thirty eight years now. I was diagnosed in
Speaker 3: early nineteen eighty seven, and when I was diagnosed, there
Speaker 3: were no treatments available other than AZT, a drug which
Speaker 3: was very potent and in itself was probably killing people.
Speaker 3: And when I learned of my diagnosis, it was an
Speaker 3: enormous shock to me, and for several months I was
Speaker 3: processing what had happened to me. When I first heard
Speaker 3: about it. I was working in the interior design business
Speaker 3: in Showplace Square in San Francisco, and all of a
Speaker 3: sudden I started hearing rumors that the showroom across the
Speaker 3: street from us, one of his salesman's boyfriends had died
Speaker 3: of gay cancer. And that's what it was called, Ben.
Speaker 3: It was just gay cancer, and it shocked the life
Speaker 3: out of me. I really didn't know what to think,
Speaker 3: and no one else really did too. It was all
Speaker 3: in sort of a cloud kind of a thing.
Speaker 4: And I was on the road singing, so I wasn't
Speaker 4: in the community then. I wasn't even out. But I
Speaker 4: actually knew about five people who had died from it,
Speaker 4: which was more than enough for me going through it
Speaker 4: with them.
Speaker 1: I write about it in the New York Times. There
Speaker 1: was an article about a group of men in San
Speaker 1: Francisco and Los Angeles and New York City who were
Speaker 1: coming down with a very rare form of cancer called
Speaker 1: carpos sarcoma, which was found only in men of Southern
Speaker 1: European descent whose immune systems were compromised. And that's the
Speaker 1: first time I had read it, just like Bill had
Speaker 1: mentioned the gay cancer, and the cancer was carposi sarcoma.
Speaker 3: As for me, I remember hearing about AIDS and HIV.
Speaker 3: It was the early eighties living in San Francisco, and
Speaker 3: almost every day I would go down to the Castro
Speaker 3: and have breakfasts in one of the restaurants. And it
Speaker 3: was during one of those times. I think this was
Speaker 3: probably early nineteen eighty one, And one of the clearest
Speaker 3: memories I have in the early eighties is that one
Speaker 3: particular newspaper, Bar Bay Area Reporter began publishing an obituary
Speaker 3: column that started out with a few names every week.
Speaker 3: So one of the exercises I think probably every gay
Speaker 3: person did at that time was looked at that obituary column.
Speaker 4: To see who had died.
Speaker 3: And that column grew until it was a whole page
Speaker 3: of the newspaper.
Speaker 1: Yeah, you remember when they published the photographs of the
Speaker 1: first like one hundred thousand victims, people who had succumbed
Speaker 1: to AIDS, and they published it in Time magazine, and
Speaker 1: you went through it and just marked who you knew. Yeah,
Speaker 1: you know. One person put it, being queer and having
Speaker 1: sex is at the root of our liberation. What I
Speaker 1: think HIV represents, it's the intersection of three things. First,
Speaker 1: of being homosexual, that means being queer. The second is
Speaker 1: that it is passed through sex okay, which defines us.
Speaker 1: And finally, it is religion in societies persecution and murder
Speaker 1: of people like me. You know, it wasn't until nineteen
Speaker 1: seventy four that the American Psychiatric Association officially removed homosexuality
Speaker 1: from its list of mental disorders or mental illness. Nineteen
Speaker 1: seventy four, I remember that year. That was the year
Speaker 1: I graduated high school. My entire lifetime, I have not
Speaker 1: only seen and witnessed discrimination, murder, persecution just for being
Speaker 1: who you are, but also a disease for which there
Speaker 1: is no cure. By the nineteen eighties, when HIV swept
Speaker 1: across America, our Wurk government did nothing. They did nothing,
Speaker 1: which sparked social protests because the only way we got
Speaker 1: the medicines that we needed, the care that we needed,
Speaker 1: and the protection that we needed is that we went
Speaker 1: into the streets.
Speaker 4: You know.
Speaker 1: Ronald Reagan was the president at that time, and it
Speaker 1: wasn't until well into his second term that he even
Speaker 1: mentioned the word AIDS, and that was at the behested.
Speaker 1: Can you believe of Nancy Reagan so that's how I'm
Speaker 1: going to stop.
Speaker 3: When it first became public that this disease was affecting
Speaker 3: the gay community specifically, one of the major assumptions that
Speaker 3: people made was that if you hugged someone or kissed someone,
Speaker 3: you could catch AIDS, and so it had a very
Speaker 3: repressive impact on people's affection towards each other, and also
Speaker 3: the health treatment that people were receiving, where when you
Speaker 3: did make it to a hospital or a hospice, that
Speaker 3: even the medical professionals were very reluctant to get very
Speaker 3: close to people who had contracted the disease. And of course,
Speaker 3: as time has passed, we've learned that it's not that
Speaker 3: easily transmitted, Thankfully.
Speaker 1: What I thought was the most disgusting thing was a
Speaker 1: conspiracy of silence. I can't tell you the number of
Speaker 1: actors that I knew who were sick and went to
Speaker 1: the grave denying their diagnosis because they were too afraid
Speaker 1: of coming out. And if you think there's a little
Speaker 1: bit of bitterness in my voice, theory is because I
Speaker 1: think of those people often and what wonderful persons they were,
Speaker 1: but they were so frightened by what society and the
Speaker 1: business would think of them, which was throwing you out
Speaker 1: the door and into this.
Speaker 4: Yeah, and that.
Speaker 1: Is what sticks in my mind period.
Speaker 4: I just thought of one bad memory of a friend
Speaker 4: of mine who I went to college with. I thought
Speaker 4: he was one of the sexiest guys on campus, dressed
Speaker 4: to the tea when I found out that he was
Speaker 4: HIV positive and then converted to being having aids his
Speaker 4: self denial. I mean, you could see what he was
Speaker 4: going through. And I remember being in West Hollywood in
Speaker 4: the pharmacy there, I don't remember the name of it,
Speaker 4: Capital Drug, Capital Drugs, Yes, with him picking up meds
Speaker 4: and he was just I'm fine, I'm fine, I'm going
Speaker 4: to do this. I'm going to do it. He wasn't
Speaker 4: living in a real world. And I just remember just
Speaker 4: stopping and holding him and telling him is said, I
Speaker 4: love you so much, Curtis, but you're dying. And he died.
Speaker 4: It was hard, but he finally came to the realization
Speaker 4: that it was his ending. And it hurt because I
Speaker 4: saw him go from this amazing person down too skin
Speaker 4: and bones. But the thing was him coming to terms
Speaker 4: with himself, you know, it was it didn't have to
Speaker 4: do with anybody else.
Speaker 2: Yeah, I had quite a few friends, very close friends,
Speaker 2: who did not tell me that they were infected with
Speaker 2: the virus. And two of my friends had been to
Speaker 2: Macy's and saw my good friend Tom in the pajama department,
Speaker 2: and they got right back to me and said, you know,
Speaker 2: Tom has aids. He never told me that there was
Speaker 2: a shame attached to it. But I would have done
Speaker 2: anything to be able to jump in and help Tom
Speaker 2: right away, but he would not reach out to me
Speaker 2: and let me help him. But he kept it all
Speaker 2: inside of himself.
Speaker 1: Yeah, and I think that that's really what it was. Today.
Speaker 1: We're afraid of telling their friends, their coworkers, you know,
Speaker 1: because they had seen what had happened to the first victims,
Speaker 1: you know. I mean there were mortuary companies that refused
Speaker 1: to take dead bodies. It was horrific. And you know,
Speaker 1: given the prejudice already that exists awards homosexuals in this country,
Speaker 1: it's like this really double edged sword that just sticks
Speaker 1: in your heart. Yeah.
Speaker 4: Does anyone have any stories where you've seen hostility expressed
Speaker 4: towards the AHIV community and people living with HIV I.
Speaker 2: I did not, but I was living in San Francisco
Speaker 2: at the time, and if you found out that somebody
Speaker 2: had AIDS, you jumped in and you helped them. People
Speaker 2: were helping each other.
Speaker 3: Yeah. San Francisco was probably at the forefront of trying
Speaker 3: to figure out how to best deal with this disease,
Speaker 3: and the care structure that developed was basically setting up
Speaker 3: a system of hospices, which were places where you could
Speaker 3: go to die and die with compassionate care.
Speaker 1: For me. Yeah, I mean there were did I personally
Speaker 1: see people attack people who had hivhes so you could
Speaker 1: hear it in the streets, but mostly I heard it
Speaker 1: in public discourse. There was a senator from North Carolina
Speaker 1: I think his name was Jesse Helms, and he vilified
Speaker 1: from the floor of the Senate gay people AIDS and
Speaker 1: that quite frankly, that AIDS was God's retribution to us,
Speaker 1: that was God's answer or punishment. In the nineteen nineties
Speaker 1: there was a group called Act Up and they engaged
Speaker 1: in social protests to develop awareness among people. And what
Speaker 1: they did is they snuck out it and from Senator
Speaker 1: Helm's home and they had made a giant condom and
Speaker 1: covered his entire house with this condom, which got a
Speaker 1: lot of national recognition. A lot of humor, and after
Speaker 1: a while, the DC police came by and told the
Speaker 1: protesters to take the condom down from the senator's home,
Speaker 1: and all they got was a parking ticket. It gets
Speaker 1: even better, It wasn't their car. Can you imagine, Mick
Speaker 1: and Robert, how have you navigated telling people about your status?
Speaker 1: What have been the most surprising responses? Well?
Speaker 3: I didn't run around saying hey, I'm HIV positive, But
Speaker 3: whenever the subject came up and I was directly asked
Speaker 3: about my status, I was always honest. And again because
Speaker 3: of where I lived, first San Francisco and then Palm Springs,
Speaker 3: I never experienced a negative reaction to someone else learning that.
Speaker 1: All right in a mission. You know, I was in
Speaker 1: a relationship at the time, and when I told my
Speaker 1: partner that was the end of our marriage, he wanted
Speaker 1: to throw me out. You know. We wrote a book
Speaker 1: and one of the things that I talked about is
Speaker 1: how much I owed Joel for so many things in
Speaker 1: my professional life and on my personal life that I
Speaker 1: learned from him and appreciated and I will always thank
Speaker 1: him for that. But the other side of the story
Speaker 1: is that he couldn't accept it, which comes down to this.
Speaker 1: I forgive myself for having gotten infected. I was in
Speaker 1: the wrong place at the wrong time. But you know
Speaker 1: what I can do. I forgive the person who gave
Speaker 1: it to me, because either he didn't know his status
Speaker 1: or he went ahead and did it anyway, And I
Speaker 1: forgive him for that, and I forgive myself. You have
Speaker 1: to understand that I am not a victim right in
Speaker 1: the story.
Speaker 2: How does HIV influence your daily life now?
Speaker 3: Well, certainly one of the major impacts is the daily
Speaker 3: routine of taking medications. And beginning in the mid nineties,
Speaker 3: when the proteas inhibitors came out, that's when I started
Speaker 3: taking medications, and ever since then, I have had to
Speaker 3: make a point of taking my HIV meds twice a
Speaker 3: day every day, ye knowing that if I didn't it
Speaker 3: could lead to complications and potentially eventually death.
Speaker 1: I'm a little lucky. I take one pill in the morning,
Speaker 1: and that is certainly a whole lot better than the
Speaker 1: five or six pills I had to take when I
Speaker 1: first was diagnosed. But Bob is right. He stresses a
Speaker 1: point that was very early on impressed upon me by
Speaker 1: my doctor. He said, every time you take one of
Speaker 1: these pills. It reminds you of what has happened, and
Speaker 1: you must confront your own self loathing because you are homosexual,
Speaker 1: and the pressure that's put upon you is that you
Speaker 1: are a bad person. Okay, that kind of pressure can
Speaker 1: stop a person taking their meds. It is very important
Speaker 1: that I take my pill every morning, but it reminds
Speaker 1: me of my being in the wrong place and making
Speaker 1: the wrong choice. But you know, there are good things
Speaker 1: about this as well. You know, our community organized, at
Speaker 1: least in Los Angeles, but also in the gay men's
Speaker 1: health crisis in New York and in San Francisco and
Speaker 1: all across the country. In Los Angeles it was AGED
Speaker 1: Project Los Angeles, the APLA first commitment to Life dinner,
Speaker 1: which honored Betty Ford, was such an enormous outpowering of
Speaker 1: just support. It was also coinciding with the time that
Speaker 1: Rock Hudson had just died, and that was a real
Speaker 1: shock to Hollywood because he finally came out and he
Speaker 1: said he had age and then he subsequent we died
Speaker 1: from it, and that really rocked the city, rocked the world,
Speaker 1: and people started, you know, looking around and saying, well,
Speaker 1: people are dying all around us.
Speaker 3: I think the biggest thing to know about this disease
Speaker 3: is that it is no longer a death notice. I
Speaker 3: totally concur that's exactly how I feel about it too. Yeah,
Speaker 3: they are medications available now that if you take them.
Speaker 2: They will save you. I mean, not only does it
Speaker 2: save them, but it can also become undetectable, which I
Speaker 2: think is an absolutely amazing achievement.
Speaker 1: Yes, yeah, I'm a last test I had I was undetectable.
Speaker 4: Yeah.
Speaker 1: You know, I'm not defined by HIV. However, it is
Speaker 1: a part of my life. It does affect how I date,
Speaker 1: and you know, I have it really in for tops
Speaker 1: who say that they will only have intercourse with somebody
Speaker 1: who is HIV negative. You know, I'd rather have raw
Speaker 1: sex with a person who I knew their viral count.
Speaker 1: But if you are going to practice unprotected sex, not
Speaker 1: only is it important that you get tested, but you
Speaker 1: see a physician because there is a prevention method called
Speaker 1: PREP that your insurance may be able to provide for you.
Speaker 1: And I would encourage you strongly to take up PREP.
Speaker 1: You know, there was this there's a case before the
Speaker 1: Supreme Court right now by certain Christian companies who say
Speaker 1: they don't want to, they don't want their insurance to
Speaker 1: pay for PREP. And that case is now before the
Speaker 1: Supreme Court and I don't know what's going to happen there,
Speaker 1: but if companies are allowed to cherry pick and decide
Speaker 1: what kind of treatments they're going to fund, we're just
Speaker 1: moving right back down that slope and people are going
Speaker 1: to pay for that.
Speaker 4: And got to remember too, it's not just gay people
Speaker 4: that HIV positives. So it's a world thing that people
Speaker 4: need to take care of themselves and educate themselves and
Speaker 4: make sure that they stay healthy.
Speaker 3: Yeah, this is not just confined to the gay community.
Speaker 1: And that's why my message to you is get tested,
Speaker 1: be honest about yourself, be honest with your partners, and
Speaker 1: use PREP.
Speaker 4: So, folks, were the end of our episode, and it's
Speaker 4: time to ask the golden question, or should I say
Speaker 4: silver what's the silver lining for you about your experience
Speaker 4: with HIV?
Speaker 3: Looking back that there are many silver linings. The first
Speaker 3: is after learning of my diagnosis and after I had
Speaker 3: process at a time that it was medically untreatable, and
Speaker 3: I attended a workshop that was on meditation and visualization,
Speaker 3: and during that workshop, I learned conclusively of the power
Speaker 3: of the mind over the body, and if you can
Speaker 3: learn to harness the energy of your mind, you can
Speaker 3: deal with your body in physical ways that are astonishing.
Speaker 3: And the second biggie was that in my process, I
Speaker 3: made a decision to move from San Francisco to the
Speaker 3: Palm Springs area, and.
Speaker 2: That had to do with.
Speaker 3: One of the recommendations that was being given to the
Speaker 3: community was get the stress out of your life, and
Speaker 3: so for me, that was moving from the big city
Speaker 3: to a I guess what I'd say a gentler community.
Speaker 3: And I have to say that my life. I've been
Speaker 3: in the desert now thirty five years, and I think
Speaker 3: that move has done a lot to keep me alive
Speaker 3: for the past thirty eight years. They're healing powers here.
Speaker 1: Yeah, there's something about the desert that I don't know calls.
Speaker 4: You back silver Linings. The desert it is a savior,
Speaker 4: it really is. I sat outside almost every evening and
Speaker 4: just look up at that sky because it scared me
Speaker 4: when I first got here. You're living in a city
Speaker 4: and all of a sudden there's nothing. But I have
Speaker 4: learned to breathe. I have learned to sit and cry
Speaker 4: from sadness and from gratitude.
Speaker 2: Yeah, Bill, my biggest silver lining was meeting my partner
Speaker 2: at the beginning of the AIDS epidemic, who would be
Speaker 2: my partner for sixteen years. And I had just gone
Speaker 2: through the seventies in San Francisco, which was the wildest
Speaker 2: time I've ever experienced, and all of a sudden it
Speaker 2: changed and I had a partner and we were monogamous together,
Speaker 2: and that is the only reason that I'm here right now.
Speaker 2: I know I would have been one of the victims
Speaker 2: of the AIDS crisis had I not met my partner.
Speaker 1: For me, behind every silver lining is another silver lining.
Speaker 1: It was the most tragic irony that not only should
Speaker 1: I have HIV, but I should also be diagnosed with
Speaker 1: a rare autoimmune condition. You know, I've had four near
Speaker 1: death experiences in the last five years, So every day
Speaker 1: is a blessing. And I realized that my life is
Speaker 1: really not my own anymore. I'm part of something much larger,
Speaker 1: and I learned who my friends are.
Speaker 4: Thank you for joining us for such a vulnerable and
Speaker 4: heartfelt conversation.
Speaker 3: That's a rapport today. Silwer Linings is a production of
Speaker 3: Iheart's Ruby's Studio and The Outspoken Network. We're your hosts
Speaker 3: Bill Lyons, Robert Brieves, M Peterson, and Jesse Martin. Our
Speaker 3: executive producer is cier Kaiser. The episode was written by
Speaker 3: Ryan Amador with post production by Eric Zeiler. Our theme
Speaker 3: music was composed by MaTx Hirchinau, with audio direction and
Speaker 3: designed by Matt Stillo. And if you're having fun with us,
Speaker 3: please subscribe the follow along and don't forget to rate
Speaker 3: and review the show wherever you get your podcast. Thanks
Speaker 3: for listening. That disco music gets into your blood.
Speaker 4: Pauper's manacle.
Speaker 1: What I said, guys, we're closing in fifteen minutes, Wash
Speaker 1: your mouths out and get out of here.