This Podcast Will Kill You - Special Episode: HIV/AIDS

Episode Date: January 30, 2018

The cherry on top of our first season, this bonus episode features more of Frank, Hillel, and Brryan's stories. Frank and Hillel, who live on opposite coasts of the US, share what it was like for them to live through through the AIDS crisis in the 1980s and 90s. Brryan and Hillel also share their experiences living with HIV today. We were incredibly moved by all three of their stories and are so honored to get to share them with you. We hope you enjoy it! If you'd like to hear more from Brryan, you can find him on social media @BrryanJackson, and also find his website here.  If you'd like to learn more about Being Alive LA, the speaker's organization Hillel mentioned, you can find their website here. See omnystudio.com/listener for privacy information.

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real-time insights. Learn more at Intuit.com slash ERP. Hi and welcome to this podcast will kill you, the bonus episode. I'm Aaron Welsh. And I'm Aaron Alman Updike. First of all, holy crap. Holy crap. Hi to all you literal thousands of new listeners. It's insane. We are completely overwhelmed with the response and with the love from all of you. Thank you. Thank you. Yes, thank you. Thank you for listening and for rating and reviewing us on iTunes. And also for engaging with us on social media.

Yeah. These last few days have been an absolute whirlwind in the best way. And we're very excited to have you all here. Yeah. So this is our first bonus episode, which we're releasing while we work on gearing up for season two. If there are any diseases or epidemics that you'd like to hear about, in season two, let us know. You can find us at all of our usual places on email where this podcast will kill you at gmail.com, our Twitter, our Facebook, Instagram, etc. Yeah. Look us up.

Yeah. Well, this week, we will be sharing more of Frank Hillel and Brian's stories, which you heard a bit of at the beginning of last week's episode. So, if you haven't listened to episode 12, HIV AIDS, apathy will kill you. Go and do that now. We'll wait. Yeah. Just kidding, we won't. Just go do it. Just, you press the pause button. Yeah, we'll still be here. Yeah. Yeah, so we, when we interviewed these three men, their stories were just so powerful, and there was so much more that we wanted to be able to include in last week's episode, but we couldn't fit it in. So what we decided to do was to bring them to you in a special bonus episode. and consider this kind of like the director's cut of episode 12.

It's bigger and better. And yeah, but honestly, though, we are really excited and honored to be able to share these stories with you all. So let's get to the interview. Yeah. We sat down with Frank and Halel, who are both gay men who lived through the HIV-AIDS crisis in the U.S. in the 1980s and 90s. So we asked them to tell us about where they were. at the time, at the beginning of the AIDS epidemic, and what they remember about how it was perceived right at the beginning. Well, my name is Frank, and my last name is I Ameli.

I was living in Boston, I mean, just outside of Boston. I was about 27, I guess, or 28 when we first started to hear about it. I remember distinctly walking into work one morning, and this woman I work with, she didn't read the newspaper, and she said something about hey, have you heard about this gay plague that's going on, this gay cancer? And I had never heard of it before. So we read the article together, and I distinctly remember that they were saying that one of the signs of the gay cancer at the time you were calling it was a rash on your feet. So I immediately went and checked on everything. It was fine.

you know when we first heard about it there was we don't have to worry about it because it's happening over there you know and then when it hit here there didn't seem to be an immediate panic about it that all changed within a very short amount of time when people started to get sick here because they died pretty quickly when it happened because as far as I can remember, there were no treatment protocols.

There literally was an immediate sense of panic throughout the whole city. And, you know, if you would go to a bar or something on a Friday night and you'd meet with your group of friends and have a drink. And all of a sudden, the conversations got, hey, we haven't seen so-and-so in a couple of weeks. We have to check on them. or I heard so-and-so was sick and it was like I said just a horrible, horrible panic that went on right at the beginning. But then as more people started to get sick, they quickly organized informally into being caretakers for your friends that got sick. Because in many instances, you know, people didn't have families, families that cut them out of their lives. And the only families that they really had was their network of friends.

So I want to say within probably two, two and a half years of me first hearing about this, you know, we were already attending to our friends that had come down with. Originally it was called, it was Carposi-Sarcoma was the big thing I think at the time. And but we all sort of went into this state of mind where we need to help. those that are sick, and we need to try to be as cautious as we can be in taking care of them, because we still didn't know that much about how you can catch it. My name is Hillel Wasserman. I live in Los Angeles, California, and at present time, I work in the motion picture business.

At the time of the AIDS crisis, I was, of course, here in what was, in fact, the epicenter of the epidemic. The first three cases of Uvisiscus and Moly were reported at the UCLA Medical Center as a matter of fact. So we were very much in the center of that storm living here in Los Angeles. At the time that I

first learned about HIV, I was about, I guess, I was in my late 20s. We started to hear these whispers about this weird gay cancer that was going around. And, you know, there was a lot, there was a whole, you know,

understand, this was now the, like, mid-80s to really put a, put a time frame on it. And there was a whole stew of sexually transmitted diseases that were getting passed around. And they were getting progressively more and more exotic in gay community. I was just beginning to wade into that world myself. And so that's what I was greeted with, you know, sort of the fruits of the sexual revolution. And we started to hear, first there was some kind of a strange amoeba that was going around. and guys were getting terribly sick with ridiculous diarrhea and the like. There were other things like that.

And then finally the whispers of this gay cancer, which, you know, a lot of us discounted because, come on, cancer isn't a convertible disease. How can you, you know, transfer cancer from one person to another? It must just be a way for the repressive society that we were living in to kind of quash the gay, you know, liberation revolution, whatever we were doing. And so, you know, it was easily just counted, but it was getting harder and harder to overlook. Guys were getting together for funerals more often than we were getting together for brunch. And people were showing up at the gym that looked like walking skeletons.

I mean, it really was, it began to be kind of overwhelming. And then you started to see, you know, weird articles in the newspaper. paper. And where it really hit home for me was when Rock Hudson began to die all over the front pages of the LA Times. You know, you couldn't open up the paper without seeing another story about this man. Now, I don't know how many people really remember who Rock Hudson was, but he was probably the biggest movie star in the world. I mean, he was Hugh Jacklin, he was Tom Cruise, he was Daniel Craig, he was all of that rolled up into one, you know. and comedies and action movies and dramas and the like.

And here was this man, this buff, handsome man that we all watched in collective horror as he shrunk before our very eyes. Now, you know, among my community and friends, the perception of this, well, it suddenly became a whole lot more serious, right? Like I said, this was something that we could no longer discount. Since the federal government's response to the crisis was so woefully inadequate, activism played a huge role in creating real change. And so we asked Frank and Hillel whether they were personally active in any political groups at the time. You know, honestly, I wasn't because for, I would say, a good five, six, seven years stretch after that, my life was, you know, was working and taking care of everybody that was getting sick around me.

you know, there were periods of time throughout the 80s where I had a partner at the time and he and I were caring for probably about, at the, at one time, probably seven or eight different people. Just one night with this one, one night with that one, one night with this one. And then when we weren't doing that, there were memorial services because people were dying left the night. And as angry as you would get from seeing this carnage, I just thought for me my energies were best spent in caring for those that I loved. You know, and there was certainly plenty of people that had joined ACT UP, which was the AIDS activist group, and they were doing their job.

And, you know, I felt like I was doing mine, you know, in the trenches kind of thing. And I do want to say that something that is not really, I don't think it's really well known, but the lesbian community was truly the unsung heroes of the whole AIDS crisis, because they stepped up to the plate. I mean, this was a disease that relatively did not affect them at all. And my God, they just stepped up and they were in there taking care of people left and right in working in hospitals and volunteering and caring for their gay men friends. And it was amazing.

At the time that I was diagnosed, as I had said, I was concerned for my job security because I was perfectly healthy, though I did have this virus circulating through my blood. So I really was not involved in any activist sort of groups. at least not in a public way. I gave money because you could do that anonymously, but I didn't show up at HIV social groups because who knew who I was going to run into there and what they might say to somebody

and what that somebody might say to somebody else that could cost me my job. So no, I wasn't. But at a certain point, it was post-cancer. And I'm not that much of an egotomaniac, but I could not help us believe that there must be something in my experience that somehow could illuminate the lives of others.

And that's when I decided that it was my turn to step up. And what I did was I sought out a speakers program and there was one. There was one tiny little speakers bureau, I should say the remnants of a speakers bureau that was being run by an organization called Being Alive Los Angeles. Look them up on the web, Being Alize, LA.org. Being Alive was founded now some 30 or more years ago by two HIV positive guys. Remember, this was the darkest days of the epidemic, and they founded this as a way for HIV positive men and women to come together and speak openly to one another of our fears and share the rumors we heard because our doctors were completely stumped. but here they formed an organization where people could speak in an authentic voice because we were living it every day.

I had given lots and lots of money to being alive, but finally it was my turn to put some skin in the game. Effective treatment for people with HIV didn't really emerge until the mid-1990s with the introduction of antiretroviral therapy. All of a sudden, AIDS diagnosis was no longer the death sentence. it once was for a lot of people. Though Frank remained HIV negative throughout the epidemic, he lost countless friends and his partner at the time. And Hillel had been diagnosed with HIV in 1987. We asked them both how things changed

once these so-called miracle drugs came onto the scene. We're talking of good at least 10 years or so, I'm guessing, from my memory of when we first heard about AIDS up to that point when those recombination therapies came into play. And during those years, it just seemed that every week there was some other drug or some other treatment that was coming into play. There was ATP, and then there was this, and then there was that. And so in retrospect, when those drugs, those therapies came out,

we did not know at that time, obviously, what a game changer it was going to be. But, you know, to us, it was just, let's see how this one does, you know, that kind of thing. So it wasn't really that big a deal to us at the time. Protease inhibitor drugs had entered the seed, and that changed everything. People were getting up off of deathbeds, returning to work, returning to life, productive citizens, there was real reason for hope again. And so the last thing people wanted to do is get up in front of a bunch of high school kids or junior high school kids or community college kids and talk about how miserable

their lives were with HIV when, in fact, we were starting to live good lives again. But that's what was most important. That's what made my participation so urgent was because you can't tell by looking. You know, the joke is, you know, you walk into a game. bar, you can tell who the HIPD and these guys are. They're the really buff, good-looking ones. Because, you know, we're taking care of ourselves, right? But we're walking around with this.

And, you know, as I grew fine of telling my audiences, you really cannot tell by looking. And that's why I thought it was so important to carry that message out, to put a human face on what at that time was a terrifying, mysterious disease. Dinner shows up every night, whether you're prepared for it or not. And with Blue Apron, you won't need to panic order takeout again. Blue Apron meals are designed by chefs and arrive with pre-portioned ingredients so there's no meal planning and no extra grocery

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now available in Canada too. That's QINCE.com slash this podcast to get free shipping and 365 day returns. Quins.com slash this podcast. We also sat down and spoke with Brian Jackson, whose story you heard a little bit of last week. He was infected with HIV when he was only 11 months old after his father, a phlebotomist, intentionally injected him with HIV-infected blood in an attempt to avoid paying child support, which is just the most unfathomably evil thing I can even think of. Yeah.

And he is now, his father is now serving a life sentence in prison for this act. Yeah. My name is Brian Jackson. But when I was 11 months old, my father, who was a verbatimus at a hospital, decided to feel a HIV-painted blood and then sincerely injected me with the HIV virus hoping I would die off and he wouldn't have to pay child support. My father stayed in the picture for about a month longer and told my mom, don't worry about looking me up with child support.

The child's not going to live long. She didn't think anything about that instead of 1996 for being this playful, hot, the energetic five-year-old to this polluted fever sick kid. In about months, my body began to break down and doctors started testing me for numerous diseases, even rare in the other country. In conclusion, they came to say, you know, I know he's not at risk for HIV, but let's test him for HIV. The results came back and I was diagnosed with full-blown AIDS, given five months to

this. My T-cell count was at zero. They put me on 23-1 medications, three-I-V antibiotics and two injections daily. The majority of those were not available for Shriver enough of the time. But three months past, five months past, and as I stand before you today, I wasn't supposed to see my sixth birthday. But come next month, I'll be celebrating my 27th birthday. As we talked about last week, a diagnosis of HIV or AIDS carried with it a stigma and a feeling sometimes of impending doom, particularly during the height of the AIDS crisis from the mid-80s to the end of the 90s,

when treatment was hard to come by, and ignorance of how the disease worked was rampant both in the scientific community and in the public. Hillel and Brian discussed with us the emotional toll that their diagnoses took on their lives. When I first became diagnosed with HIV, my body was just shutting down day by dead. The muscles of my legs were breaking down. My bones were becoming brittle and achy. I was vomiting all the time. if it wasn't HIV or the opportunity to infections that were making me sick, it was the side effects of the medication. I've also lost a little bit of my hearing because the doctors weren't monitoring the drug

that I was on and therefore I lost my hearing. And then all those years of just battling this illness, I'm actually, another thing I speak about besides HIV is mental health. So when I was 13 years old, I was really strong. struggling with depression that was left out of a birthday part. This is when bullying was really hard for me at school. I would be getting jumped into the locker room. And at 13, I said, do you know what?

I'm just going to do everybody a favor. I'm going to kill myself. And at age 13, I had three knives in front of me. I asked myself which one can cut deeper. And I, in my moment of desperation, this voice called me through my Bible. And I read this passage and said, why should down cast so my soul? put your hope and God. And that word hope stuck out to me.

And so this is about 2003, so I couldn't just go Google, you know, what is hope? But I was really fascinated by the word hope. And I really wanted to find out what it is. And that's not going to cut it, you know? So I'm like reading books and I'm reading, I loved encyclopedias before Wikipedia.

And what I came to is that in life, you're going to go through struggles no matter what. but the consistency we need to have is hope, and hope is vital. And so with that, I started to realize that we had two choices when we have these O-O-O-Clat moments. That's either to be a part of the problem or to be part of the solution. And I said, you know what, I'm tired of be a part of the problem. I want to be part of the solution.

I want to live in victory, not victim-mode. And so a question I asked myself is, if I believe that I have a purpose to knife, what is my purpose? And I started asking that question that we are asking that victim zone. It's what can I get out of this? And I realized that life isn't about what you can get. It's about what you can give.

And then I started asking, what do I have the gift? And I saw that I had a path and I had a story. And my story is now a story of hope. And I think the word is missing hope. So I wanted to start sharing that story of hope. And so since the years of 13, I've been doing motivation of speaking and traveled all around the world to Haiti, Ecuador, Kenya. Last year I was named Canada Speaker of the Year.

And so motivation of speaking for me is my time to give back to people, whoever is struggling with something in her life, whether it's mental health, whether it's a disease, whether it's just a day-to-day life problem. And I would just want to empower people that there is hope and that hope is vital and that regardless of your situation, you can do anything and you can overcome it and you can be the best person you're capable of being. And so there I was sitting in my beautiful office when I get a phone call from the doctor after those seven days to tell me that the test results came back and they were positive. And as I sat there and listened to all of that, all I could think of was, oh my God, how am I? ever going to tell my parents. See, I was between my 30th and 31st birthday at that time, and I know to many people that seems impossibly old, but it is not. When you are between 30 and 31, your entire life is ahead of you, or at least it should

be. But there I was in my 30th and 31st birthday, and the primary relationship I had in my life for better for worse was with my parents. I'm also the oldest of three kids. know if anyone out there is the oldest in their family, but I conclude you if you aren't, that is the oldest, that child, that is the repository of all their parents' fondest hopes and dreams, right? We're the ones that are going to change the world. We're going to have grandchildren. We're going to shine in our lives and make them proud. On that afternoon,

that no longer was a possibility for me. And, you know, I'm no kind of an actor. When they walked in a house, they clearly saw that something was wrong. I'm their eldest. No one knows me better. Or in this case, knows me least. But that's when I had to sit them down and tell them that it was time to start planning my funeral. You know, it's wrong for a parent to bury a child.

It's out of the natural order of things. We're supposed to go to our parents' funeral. We're supposed to cause our parents' funerals, right? ever since the day they gave us those card keys at 16 they have not slept the night I guarantee you that I remember my mother's eyes filled with tears

and my father got this serious look on his face that he gets when they're thinking about something really important and he looked at me in the eye after a moment and he said hello he said you are our son and we love you unconditionally and we will

live to see you well which was an astonishing thing to hear in 1987. In 1987, what you heard at the end of that story was how that guy's parents threw him out, how they turned their back on their own sick child. How can you do that and call yourself a parent? But that's what was happening. It was real. But that's not what I come from.

Thank God. I come from better people than that. And I sensed a moment. an opportunity here and I thought, okay, what can I ask for? Right? I can ask for anything I want now because I got sympathy on my side. And I asked that my parents not tell my younger sister or brother. I was just afraid of having them be hurt by that news.

You know, like I said, I'm their older brother. I'm the one they look up for reasons I still don't understand. And it couldn't bear the thought of them worrying about me. And that was an amazing thing to ask of my parents. I had no idea what an enormous demand that was. What a strain that put on their everyday lives. There was no one they could talk to about this except me, and they were so afraid of upsetting my apple cart

that they just didn't talk about it. I really isolated them so terribly, and I feel so bad for that. But, you know, life doesn't come with an instruction. book, right? We make the best choices that we can give any information that we have. And in my life, that takes the form of trying to spare the feelings of others. I did what anybody else who do at that point. I put one foot in front of the other, and I marched onward because here's what was weird. I had a perfectly intact immune system. I had 1,200 T-cells. I also had the HIV virus circulating

through my body who knew how long it would take before the damage started, but I was healthier than the doctor at that point. So like I said, I put one foot in front of the other and I marched. I walked into work every day. I stabbed people in the back and I got promoted. I climbed over the dead bodies and I got promoted again. I quit the studio. They hired me back a year later and twice the salary. I quit again, started my own business. I did what any normal person does, right? I made contributions to my retirement fund. I bought a condominium with a 30-year fixed mortgage, right? What good man does that?

You know? So I did what just normal people do because that was all I could do. Anyone who works long hours knows the routine. Wash, sanitize, repeat. By the end of the day, your hands feel like they've been through something. That's why O'Keefe's working hands hand cream is such a relief. leaf. It's a concentrated hand cream that is specifically designed to relieve extremely dry, cracked hands caused by constant hand washing and harsh conditions. Working hands creates a protective

layer on the skin that locks in moisture. It's non-greasy, unscented, and absorbs quickly. A little goes a long way. Moisturization that lasts up to 48 hours. It's made for people whose hands take a beating at work, from health care and food service to salon, lab, and caregiving environments. It's been relied on for decades by people who wash their hands constantly or work in harsh conditions because it actually works. O'Keefs is my hand cream of choice in these dry Colorado winters when it feels like my skin is always on the verge of cracking. It keeps them soft and smooth, no matter how harsh it is outside. We're offering our listeners 15% off their first order of O'Keef's. Just visit o'Keef's company.com slash this podcast and code this podcast at checkout.

Success starts with your drive, and American Public University is here to fuel it. With affordable tuition and over 200 flexible online programs, APU helps you gain the skills and confidence to move forward. Whether you're changing careers, starting fresh, or pursuing a lifelong passion, our programs are designed for people who never stop. You bring the fire, APU will fuel the journey. Learn more at APU.APUS.edu.edu. Truck Month is going on now at your local RAM dealer. Hurry in for great deals and exceptional offers on a powerful selection of RAM trucks. And right now purchase and get 0% financing for 60 months on 2026 RAM-500 Big Horn and Laramie models.

Don't miss this great offer. See your local RAM dealer. Not compatible with any other offers. Zero percent APR financing for 60 months equals 1667 per month per 1,000 financed for well-qualified buyers through Stalantus Financial Services regardless of down payment. Not all customers will qualify. Contact dealer for details. Offer ends 3-2. At the end of each of our interviews, we asked Frank, Hillel, and Brian to share with our listeners some of the things they felt were most important about the AIDS crisis or what it's like to live with HIV today.

Even after I thought, like, even after I came clean with my story and said, hey, I don't, I don't care about what you guys think. Like, this is who I am. HIV doesn't define me. And I started showing people that I was lobbying in Washington, D.C. some of the ignorance went away, but still the ignorance is still consistent. And it's just, it's mind-biting to me that we live in 2018 now, and there's still ignorance when it is HIV-D-A. And just several years ago, I was dating this girl, and her father had the audacity to tell me, you can't marry or date my daughter because you're killing her, and you're going to be just like your father.

And I'm like, what, what do you mean? And what people don't know about me is that I have an open invitation for anybody who wants to come to the doctor with me. Like, my house status is not kidding. I'm an open book. I said, ask questions, you know. I've done the research. I've lived with it. But still, people are ignorant.

And I also have had doctors who aren't what educated about HIV. And they just slipped the prescription under the door. and not even come in and take a look at me. But as 2018, you know, we have great medications that can help people live long and healthy life and be undetectable. Most people can have a zero percent chance of passing on the virus. But a lot of people, the stigma, still alive and real, to where people don't want to go get tested or when people contract the virus, they automatically think, I'm screwed, I'm going to die. And that's not the truth. Like, people who are living with HIV can lead successful lives and people who hang out with HIV positive, people who are probably going to always remain HIV negative.

There's what you were saying from the Talmud that saving the life of one person is like saving the world entire. And it's my hope that somebody listening today might change the way they think or they act. toward the people who they meet in their lives who are living with HIV. And if you haven't met us, you will. If you haven't met us yet, you will because the CDC estimates that there are what, 750,000 to 1.5 million people

living with HIV and fully a third of them don't even know it. Right here in America, and they don't know it because they're not getting tested. That is so key. Get tested. Share their own. results with your partner, develop strategies if you have to, to negotiate, you know, safer sexual practices, but get tested, you know, that will feel like my life has been well lived, like I have done my part to try and fix the world.

and so giving me this platform to speak on this program is deeply touching and I truly thank you both and like I said I really believe it's important to pass these stories down because let's face it you know we're all getting older and someday I'm not going to be here and you know life is just going to go on and those stories are going to be forgotten and you know part of that is just life

you know that happens but at the same time And this just still needs to be some record somewhere that, you know, there was a wonderfully alive, vibrant community of people that loved each other and cared about one another and supported each other when, you know, times were bad. And now that's gone. And honestly, that's one of the reasons that I'm doing this today is, you know, if we don't tell our stories about what happened, Who will? Again, we want to give a huge, huge thank you to Frank, Hillel and Brian for sharing their experiences with us. We feel so fortunate for their openness and willingness to talk about their lives, and we hope that it made as much of an impact on you as it has on us, listeners.

Thanks again. Yeah, thank you. And thank you for listening, everyone. Until next time, wash your hands. Yeah, filthy animals. Success starts with your drive, and American Public University is here to fuel it. With affordable tuition and over 200 flexible online programs,

APU helps you gain the skills and confidence to move forward. Whether you're changing careers, starting fresh, or pursuing a lifelong passion, our programs are designed for people who never stop. You bring the fire, APU will fuel the journey. Learn more at APU.APUS.edu. Truck Month is going on now at your local RAM dealer. Hurry in for great deals and exceptional offers on a powerful selection of RAM trucks.

And right now purchase and get 0% financing for 60 months on 2026 RAM-500 Big Horn and Laramie models. Don't miss this great offer. See your local RAM dealer. Not compatible with any other offers. 0% APR financing for 60 months equals 1667 per month per 1,000 financed for well-qualified buyers through Stalantus Financial Services regardless of down payment. Not all customers will qualify. Contact dealer for details. Offer ends 3-2.

Virgin Voyages presents with love from Alaska. The scenery out here is unreal. Mountains, glaciers, waterfalls, the ship? Designed for panoramic views, which is why I'm pretending to be a wildlife photographer. I am not. Yesterday we were hiking and kayaking. Today, I'm watching for humpback whales.

Anyway, wish you were here. Award-winning Kid-Free Alaskan cruises from Virgin Voyages with immersive shore excursions and zero kid energy. Virgin Voyage is. com.