Host: Jon Goode
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Jon: [00:00:12] From PRX, this is The Moth Radio Hour. I'm your host, Jon Goode. Let me start by asking you a question. Have you ever had a week, a day or even just a moment that took a turn for the better or the worse that you just didn't see coming? Maybe you found a scratch-off ticket on the street and it turned out to be a winner. Perhaps, you returned your car to the mall parking lot, and discovered that your car was gone and only your anti-theft device was left in the parking space. I once went to buy a T-shirt in a tourist market in Saint John and ended up in a bar in a forest, sitting next to a pig in Saint Croix. Life will certainly take you to some wild, interesting and complicated places.
[00:00:57] In this hour, we have five stories where things take an unforeseen turn for our storytellers. Our first story comes from Sofija Stefanovic. Sofija told this story where the apple is big and the pizza slices are even bigger, New York City at the Housing Works Bookstore. Shoutout to WNYC, our public radio partner in the city that never sleeps.
[cheers and applause]
Here's Sofija, live at The Moth.
Sofija: [00:01:25] It's two years ago, and I've just moved to New York and I'm feeling a little bit lonely and weird. But I'm excited because my friend, Hannah, has come to visit me from Australia. It's her birthday and I'm taking her to this Russian bathhouse that I've heard about. I don't really care about bathhouses, but she does. And so, we're there. We're at the reception and we've decided we're just going to go in there, have a little relax and then go on and have lunch somewhere else. As I'm paying, I see that there's this little cafeteria area attached to the reception, and there's this smell of delicious Eastern European food. And there is this woman sitting, eating some stew. Let's just call her Sonja for the purposes of this story.
So, Sonja's sitting there in a robe eating stew and she's looking over at us. And as the receptionist is selling the tickets, Sonja gets up and says to her in Russian, “Let me take care of these Australians.” Now, even though I sound like an Australian, I am actually a Serbian who was living in Australia, but I also speak a Slavic language, so I can understand the root words, so I could understand what she was saying. So, she says, “Actually, you want a massage and a mud treatment and it's going to cost this much more.” And so, I say, “No, no. Actually, we just want to go in to the bathhouse. We don't want any extras.”
And then, to give her a clue that I'm onto her, I say like, “Spasiba” in Russian. She does not get the clue. [audience laughter] Instead, she takes us through to the bathhouse changing room area. It's women's only day, so we don't need to wear swimsuits. She gives us these towels that are about the size of a piece of toast, so you can either cover the front or the back, but not both. [audience laughter] She gives us those and she leads us into this area. It's the bathhouse area, and it seems familiar in a bad way, from my socialist Yugoslavian childhood. [audience laughter] It reminds me of some sort of a horrible municipal swimming pool. There's all these cracked tiles and this dirty water running down.
I'm looking around and there's, like, lights that have gone off in places, and there's these women in the shadows washing each other with tiny bits of soap. [audience laughter] Hannah is looking around, and she says, “Oh, this seems so authentic.” And so, I decided like, [audience laughter] “Okay. Fine. I'm not going to say anything. I'm not going to ruin the day.” So, already in a little bit of a bad mood, we go into-- Me in a bad mood. She's [chuckles] fine. We go into the steam room, and we sit there in the darkness with other people's sweat falling on us. [audience laughter]
Sonja walks in and she says, “Hey, it's time for your massage.” And I say, “No, we're not getting the massage.” And she's like, “Yeah, you're getting the massage and you're going to pay later.” And I say, “We're not getting the massage.” I sit there fuming a little bit. She leaves. I decide that I'm too hot now. So, I go back into the main area. I leave Hannah in the other people's sweat. [audience laughter] I see Sonja standing there. She's standing next to a colleague of hers. Sorry, she's naked now. We're all naked now. [audience laughter] She was wearing a robe before, but just remember that from now on everyone is naked, [audience laughter] because we're in this thing.
And so, she's standing there with her hands on her hips. And next to her is her colleague, also with her hands on her hips. They're both is short, angry Eastern European women. She says to her colleague in Russian, “Hey, they booked in for two massages, but now they've canceled on us.” She calls her colleagues, she says, “Can you believe that, Magdalena?” And I say, “Hey, in English, Magdalena, do not believe her. She's lying. We did not book in for anything. Yet still, this person doesn't understand that I can understand what she's saying and she still thinks that I'm the Australian that she's trying to rip off.”
So, Magdalena just shrugs, and she picks up this gigantic branch and goes into the steam room, where I guess to beat Hannah [audience laughter] on her birthday. So, I'm like, “Okay. Well, I'm not going back in there.” So, I see this row of showers along the wall, and I decide, seeing as I have nothing else to do, and it's a tense, naked situation, [audience laughter] I'm just going to go and have a shower. So, I go there and I start showering. Sonja marches up, like shoves in next to me and turns off the water and she says, “You are showering for too long. Come and have a massage.” [audience laughter]
I'm so angry. I'm really wet. I'm trying to dry myself with this tiny towel and be furious at the same time. I'm looking at her, and she's looking at me and I realize that I'm not only angry because she's trying to upsell me and she's following me around the bathhouse, but I'm also angry because I'm new and lonely here. I recognize in her something that's familiar, and it's something that reminds me a little bit of my home and of my family and where I come from. I want to be part of a gang. I want to be part of a team. I want her to accept me and recognize me the way that I recognize her, but she doesn't. She's just standing there, and she's angry and she's making her hands into fists as she's standing there, because she's furious that I [chuckles] don't want the massage.
I start to think to myself, and I think, am I about to have, like, a fight with this small, elderly [chuckles] Russian woman, and we're both naked? [audience laughter] I look at her, and I size her up and I realize that even though she's quite a lot shorter than me, she's really, really strong. And also, she has a hometown advantage on the wet tiles. [audience laughter] So, I decide I'm not going to take the chance. But instead, I do just say my last little stand, and I say, “Ne zelim, massage ou.” Which means I do not want a massage in my language. I hope that she's going to make the connection.
And I want to, like in my mind, I march out with dignity. But because of the tiles, I end up just really slowly [audience laughter] walking towards the changing rooms. And then, I get dressed and I have to sit out there in the cafeteria waiting for Hannah. As I'm waiting, I can't resist the smell of the delicious Eastern European food. So, I order some stew. I'm sitting there with a stew, stewing. [audience laughter] Some hipsters walk in, and Sonja comes out in her robe and she starts to upsell them. She glances over at me and I'm just sitting there with my stew, and she gives me this like the tiniest nod of acknowledgement. [audience laughter] She goes, she lures like the hipsters into her den and I can't help, but smile to myself. I eat the stew and it tastes a little bit like home. Thank you.
[cheers and applause]
Jon: [00:07:48] That was Sofija Stefanovic. Sofija is a writer and the host of This Alien Nation - a celebration of immigration at bars. Her memoir, Ms. Ex-Yugoslavia, is about growing up as an immigrant kid while Yugoslavia collapses. After not getting a massage, but still being rubbed the wrong way, I asked Sofija, if she has returned to that or any bathhouse since. She said, no way.
I was struck by the line in Sofija's story, “The stew tasted like home.” So, I asked her if she had to give us a recipe for what home tastes like, what would be in that recipe? She said, chicken and noodles. Personally, mine would probably be pork chops, applesauce and purple Kool-Aid. Not grape, but the most delicious purple.
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Our next story with an unexpected twist comes from the place where I host the live Moth StorySLAMs, call home and you can get lemon-pepper chicken wings, fried hard, all flats with extra sauce, day or night. Atlanta, Georgia. Our storyteller, John Mack Freeman, is a librarian in the suburbs of Atlanta. And because this is radio, you can't see him. But trust me, he has the best hair in the game. I am a bald man, and he routinely fills me with hair envy. Is that even a thing? Hair envy? Nevertheless.
John Mack Freeman says that he's been collecting stories from people in his life for decades. Well, I can't wait to share this one with you. And you didn't even have to wait decades to hear it. Here's John Mack Freeman, live at The Moth.
[cheers and applause]
John: [00:09:48] My grandmother has six months to live. She's dying. She's been in and out of the hospital all summer, but now she has a cancer whose name is too long and complicated for me to remember. And so, now, we are staring at a ticking clock. And that is why everyone who can is flying up the highways of the Appalachian foothills for a birthday party. This side of my family doesn't really throw birthday parties, but we know that we have to do it now or we're never going to get the opportunity.
I am nervous about going, because I used to spend a lot of time with this part of my family. I would spend a week up there every summer, but I haven't seen them in over a decade. They are exactly the kind of people you think live in the Appalachian foothills. They are conservative, redneck, blue collar, all of the above. And I am a cityfied pinko commie liberal who is bringing my husband to meet them for the very first time. I am nervous about how this is going to go. But my mother asked me to come, and so I go.
We get out of the car and Conway Twitty is blaring from the backyard. My mother meets us at the door and we walk out back and there are 40 or 50 relatives in these pods of folding chairs around the backyard with paper plates on their laps. There's a pool that nobody's using and a bar that's unattended. And in the middle of it all was my grandmother, dancing with her youngest son, David to Hello Darlin’ And everybody is watching and everybody's pretending like they're not watching. They're furtively recording with their phones, but pretending like they're not, because everybody knows, but nobody wants to admit that this is probably the last time she's ever going to dance.
The dance ends and the spot next to her opens up. And so, I sit down on the concrete. She looks good. Her hair's been done. It's in these soft curls around her face. She's wearing a new outfit for her birthday. But it's loose to hide all the ports and the wires and the tubes. She takes the oxygen tube out of her nose and we start talking. She asks me about the house I just bought, and I ask her how she's enjoying the party. we're making small talk in a situation that really doesn't need small talk. She pauses for a second and she turns to me and she goes, “You know, I am fine with all of this.” She sucks me in.
I may not see my grandmother very often, but we share one thing more than anything else. We have a blunt attachment to the truth. And so, whatever her life has brought her, her eight husbands, running away with a fry cook, living in a school bus, this woman is the kind that they don't make anymore. And if this is what she wants to talk about, this ticking clock that's on her life, then I want to hear what she has to say. And so, she says, “I'm fine. This is just a part of life and I know that I will be okay. But it is so painful watching how much pain your mama and David are in.” I try to think, what do you say to the dying that don't need your pity or your platitudes?
But before I can come up with something to say, another family member pushes their head in and goes, “Do you want a piece of cake?” in that tone of voice that people use with the elderly that they think are feeble. I want to pick this woman up and hurl her into the pool, cake and all, because my grandmother is not feeble. She is dying, but she is still here. The older relatives start to depart as the sun goes down, and this party that has felt very much like awake is turning into a little bit of a hootenanny. There's a scavenger hunt for the missing vodka. People are doing furtive shots of tequila in the kitchen. My uncles are stripping off their shirts and doing cannonballs in the pool. My aunts are doing a bad white lady line dance to the wobble off to the side. [audience laughter]
My mother is pointedly taking me and my husband to meet everyone, daring them with her steely gaze for anyone to flinch at the phrase, “And this is Mack's husband, Dale.” [audience laughter] I don't know what I expected, but nothing happened because my Camo Maga hat wearing uncle grabs my husband into a bear hug and says that it's so nice to meet him and that we don't need to be strangers and the next time, we're up that way we need to stay with them. I'm never going to understand these people, but somehow my baggage fits here.
I know I need to get on the road. I am working in the morning and I can't stay. I know that all things come to an end, but I go back outside one more time and sit down and look around at my family. My grandmother sitting in the middle, looking out at her kids and her grandkids and her great grandkids. This clan of factory workers and teachers and librarians and storytellers and hunters and nurses and business people and so much into the future and into the future. We are all so different. But different is just a way that we are saying that we are so unique and so uniquely suited for one another. I look at my grandmother sitting in the middle of all of this chaos and somehow, she is at peace. And I find that quite unexpectedly, so am I. Thank you.
[cheers and applause]
Jon: [00:15:28] That was John Mack Freeman live at Centerstage in the ATL. Much love to our media partner in Atlanta, GPB. I asked John Mack if he and his husband ever got a chance to take up his uncle on the invitation to stayover. He said, they've only been up for daytrips since the party, but they are not opposed to the idea. I also asked him to define for those of us that may not know what a hootenanny is. He said to, “Buffy the Vampire Slayer, it's a whole lot of hoot with just a little bit of nanny.”
John Mack's grandmother passed in December of 2019. He says, she was one of a kind. And that shortly after that party, he added The Wobble to his Spotify playlist. Every time it comes on, John Mack says, “It makes me happy and reflective and a little sad, which is never what I thought that song would do to me.”
[The Wobble playing]
Coming up, a man that drives trucks and a lady that teaches people to drive, when The Moth Radio Hour continues.
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Jay: [00:17:18] The Moth Radio Hour is produced by Atlantic Public Media in Woods Hole, Massachusetts. And presented by PRX.
Jon: [00:17:30] This is The Moth Radio Hour from PRX. And I'm Jon Goode. Our next story of the unexpected comes to you not from Louisville. Not from Louisville, but from Louisville, Kentucky, in The Muhammad Ali Center. It involves a car breaking down, a rider getting picked up and an unforeseen turn of events. It's all told to you by Jon Goode. Wait a minute, that's me. Part of being a host for The Moth live shows is sometimes having to tell a story yourself.
[cheers and applause]
So, here I am, live at The Moth.
So, do you mind if I tell you a quick story from my life? So, in this life of mine, I am hired mainly a lot, to go out on the road and perform poetry at colleges, right? Seems like a crazy thing for someone to hire you to do. But they do. They hire me to do it. And so, I was hired by this school in West Virginia. Anybody here from West Virginia? Fantastic. This is going to work out. Just you, sir. Don't listen. All right. [audience laughter] I'm just kidding. It's going to work out. Trust me.
So, I was hired by the school in West Virginia. And if you're unfamiliar with West Virginia, I will just let you know that West Virginia is not entirely known for its people of color. It's not what they lead with. They're not like, you know, West Virginia, also West Wakanda. It's not how they do it. [audience laughter] It's not how they do it. And spoiler alert. I'm a black guy. [audience laughter] I know. Shocking, right? Shocking. So, they wanted me to come out to West Virginia and do this show at this college. They sent the check, I cashed the check, I figured I should show up.
So, I jump in my car and I'm driving to West Virginia. And all is going well. I crossed the West Virginia state line, and softly in the back of my mind, the tune of dueling banjos begins to play. [audience laughter] I ignore it. Keep on driving. And about 10 mile, 15 miles later, my engine in the car starts to lay down the most wonderful hip-hop beat. It's like, “Ooh-ooh-hu. Ha-huh-hu,” which is wonderful if it's a Drake song, but not good if it's your car. So, I pulled over to the side. And by pulled over to the side, I careened over to the side, because I lost power. And then, I did what you're supposed to do as a man. I popped the hood. [audience laughter] I popped the hood. Cause as a man, you're supposed to pop the hood.
Now, I don't know anything that's going on under the hood of a car. [audience laughter] As far as I know, there are hamsters on wheels making this thing go. [audience laughter] I don't know. But they say you're supposed to pop the hood, I popped it. So, I walked around, I lifted the hood. I'm not a mechanical genius of any sort, but the spark plug wire was on fire. [audience laughter] And I said, “That's the problem right there. There it is.” [audience laughter] So, I got a fire extinguisher. I put it out. I looked up, the sun was getting low in the sky. Dueling banjos was getting louder.
Right around then, a truck driver who was pulling by, he pulled by and pulled over. He hopped out. Classic truck driver. Trucker hat, flannel shirts, some jeans, some boots. He came over, he said, “Hey, buddy.” And I said, “Hey, buddy.” He said, “What seems to be the problem?” I said, “Car broke down.” He says, “You mind if I look under the hood?” I said, “I think you have to.” [audience laughter] I think these are the rules. So, he looked under the hood, he saw that smoldering spark plug wire and he said, “That's your problem right there.” [audience laughter] And I said, “Look at the both of us, mechanical geniuses.” [audience laughter] He said, “Where you headed to, buddy?” So, I told him the school I was going to. He says, “I know that school. I'm driving right past that school. If you like to, I could give you a ride.”
Now, I'm not sure if you are familiar with a genre of film known as horror, [audience laughter] but so many horror movies start with benevolent trucker offers stranded stranger a ride up the road. [audience laughter] But the sun was getting lower, dueling banjos was getting louder and I said, “I'm about to take my chances.” So, I hop in the truck and we're headed up the road. And all is good for 20, 30, 40 miles. Then he looks over and he says, “Hey, buddy.” And I said, “Hey, buddy.” He said, “I don't mean to sound racist or nothing.” [audience laughter] As you know, if someone starts with a I don't mean to sound a racist or nothing, the next thing you're going to hear is the most racist thing you've ever heard. It's like when someone says, “I'm not calling you stupid.” They are. They're calling you stupid.
So, he said, “Hey buddy, I don't mean to sound racist or nothing. But I was watching this documentary on CNN called Black in America. There was this black guy on there, hosted and I swear you look just like that black guy.” Let me tell you two things I know to be true. Number one is, all black people do not look alike. [audience laughter] But the second thing I know to be true is, as it was so happened, I am the guy that hosted that thing on CNN. [audience laughter] So, I said, “I am the guy that hosted that thing on CNN.” He said, “What? Get out.” I said, “I will not get out, but I am the guy that hosted that thing.” He said, “My wife's not going to believe this.”
So, we rode up the road, we laughed, we had a good time, we got to the school, we jumped out, we took selfies and stuff. I'm sure he texted his wife like, “You won't believe who's in my truck. The black guy from CNN.” [audience laughter] She's texting back like, “That's not Don Lemon.” [audience laughter] But as he left, I had to think about, as a person who's often stereotyped, faced with so many biases in the world, I had to think about some of my own biases, some of the things that I've held onto maybe a bit too long and start deciding some of the things that it was time to let go.
[cheers and applause]
Jon Goode, aka Juan Bueno, aka Jean Bien, aka me, is an Emmy nominated writer whose most recent novel, Midas, has received 75 five-star ratings to date and was number one on Amazon for five weeks. I asked myself, “Jon, why would you try to drive to West Virginia in a car that looks like it could use some lotion as a check engine light that stays on so much that now it's just thought of as a night light and it clearly has trouble getting to the local Kroger and back.” I replied to myself, “Ignorance.” When I called my mom and told her about what had happened and how I was rescued, she said “God looks out for babies and fools.” She did not clarify which of the two I was.
Our next storyteller has written for Disney, Netflix and Amazon. She's a former newspaper reporter, was the host of the 2020 Nebula Awards and created The Webby nominated Jane Austen themed web series, Black Girl in a Big Dress. And as you'll hear, she's also pretty good at parallel parking. Here's Aydrea Walden, live at The Moth.
Aydrea: [00:24:43] Thanks, guys. So, I don't think any of you know this girl, but trust me when I say you it was ridiculous how rich Julia was. Her gated community was so gated that there was like a gate around every house. It was ridiculous how many horses she had. It was ridiculous how robust her household staff was. She could have recreated the entire film The Help before breakfast. [audience laughter] It was super ridiculous that I even cared about this in the first place, because Julia was a 15-year-old child and I was a 30-year-old woman who really should have had my life together. [audience laughter]
I did not have my life together and that's how I knew Julia in the first place. Because thanks to a divorce and the recession, I had been demoted from living life as a normal, respectable human being person and was now living life as a driver's ed instructor. [audience laughter] I do not recommend living life as a driver's ed instructor. First of all, there is a uniform. Not like a cool uniform like doctors or astronauts get to wear. And the second worst thing about being a driver's ed instructor, is that you are being a driver's ed instructor. And considering all that was going wrong in my life, I probably shouldn't have cared so much about Julia's, except that Julia was both everything I wanted to be when I was her age and she was doing everything I wanted to do now. She was a ballet dancer.
When I was a kid, I loved ballet so much and I wanted to be a ballet dancer. But when I told my mom that I wanted to start taking ballet lessons, she told me pretty definitively that I was too fat to be a ballerina. “But that's okay, because black people don't get skinny anyway. And why don't you be an engineer like your dad and leave me alone?” So, not only did Julia get to take ballet lessons, she had a mom who liked her. [audience laughter] Julia also had three cars at 15. And at 31, I had zero cars, because my car had just been stolen. Rent controlled apartment, pretty awesome. Being the only member of that apartment complex who was not also affiliated with the Canoga Park, Alabama street gang, came with some baggage.
Julia's house also had heat. And at the time, I was huddled around my oven every night because that was the only utility I could afford to turn on. I didn't think that I could dislike her anymore until it was December, and then I made the mistake of asking her what she was going to do over the holidays. And she goes, “Ugh, we're going to Hawaii again. It sucks.” I don't want it to be like, “Oh, my God, you're so right. Spending a week in paradise with people who love you sounds absolutely horrible. You ungrateful little child who can't even drive a stick.” [audience laughter] But you can't say that to a kid. So, instead, I said, “Oh, Hawaii, well, that sounds fun. What do you like to do there?” And she goes, “Ugh, I've been so many times I don't even do anything anymore.”
And I wanted to say, “You're a horrible human being,” [audience laughter] but you can't say that to a kid. So, instead, I said, “You're right, that does suck. What about the new year? Any fun resolutions?” And she goes, “Ugh, I just hope next year is better than this year.” Now, I knew she had broken up with her boyfriend, but I didn't care because I was going through a divorce and she was going to be over the sky by next semester. [audience laughter] But you can't say that to a kid. So, instead, I said, “Oh, is it because of Michael?” And she goes, “That, and I really hope my back gets better.” And then, she told me about how she was almost paralyzed.
So, yeah, she was a ballet dancer. She'd been dancing at an elite level since she was a little kid. She told me on and on about all the practices and the shows and the competitions and it all sounded wonderful. And then, she started talking about how that year when she would get done with her practice, her arms and legs would feel really tingly and then they started burning. And then, sometimes she couldn't feel them at all and how she started taking ibuprofen because sometimes it was so painful, she will start taking ibuprofen like candy. Sometimes it was so painful, like, that wouldn't help, and how she started wrapping ice packs to her body all day long and how that didn't help, and how one day she laid down after a show to like relax and she couldn't get up again.
It was a stress fracture and two vertebrae. And the doctor ordered her off of her feet and out of the toe shoes probably forever. And she goes, “Ugh, I don't even know what to do anymore. I don't really know who to be.” I totally got that, because I was going through a big shake with my life too. So, we got back to her house and I looked at her giant mansion and her horses, her cars and all her stuff. It was like it didn't matter how much stuff she had or how expensive it was, because if she couldn't have that one thing that made her feel awesome, it was pretty worthless. But you probably shouldn't say that to a kid. So, instead, I told her very honestly that I hoped that she had an awesome trip to Hawaii. Thank you.
[cheers and applause]
Jon [00:29:46] That was Aydrea Walden live from Busby’s East in Los Angeles, California, where KCRW holds us down. Aydrea said that shortly after she met Julia, she started working at studios again, and it has been just up and up from there. She said that she and Julia are no longer in contact, probably because Aydrea did her job and Julia learned to drive. But she hopes that Julia is well, that she is dancing and that she gets to keep going to Hawaii.
Have you ever thought to yourself, I have an amazing story that I would love to share with the world. Well, guess what? We read your thoughts and set up a pitch line. Yes, you can pitch us your story by recording it right on our site or call 877-799-MOTH. That's 877-799-6684. The best pictures are developed for Moth shows all around the world.
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We've been to New York, Georgia, Kentucky, California, and our last stop is Washington State, when The Moth Radio Hour continues.
Jay: [00:31:42] The Moth Radio Hour is produced by Atlantic Public Media in Woods Hole, Massachusetts. And presented by the Public Radio Exchange, prx.org.
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Jon: [00:31:57] This is The Moth Radio Hour from PRX. I'm your host Jon Goode. And our last story that takes an unexpected turn comes from Ijeoma Oluo. Here she is, live in Seattle.
[cheers and applause]
Ijeoma [00:32:15] I didn't think much of the letter when it arrived. I looked at the plain white envelope from the blood bank, and I figured it was probably just a thank you for donating cord blood from the birth of my first child, a few weeks earlier. I figured it would probably say something like, “Thank you for your life saving donation,” or maybe even, “Ijeoma Oluo, local hero.” [audience laughter] But I opened the letter, and the first line jumped out at me in bold print it said, “This is not about AIDS or HIV.”
Now, it was 2001, so we were still really in the AIDS crisis. But I really hadn't thought it would be about AIDS or HIV. [audience laughter] But now, I was like, “Are you sure? Are you sure? Are you sure?” But you know, I kept reading and it wasn't about AIDS or HIV. In simple text, the letter informed me that the blood I had donated had tested positive for hepatitis C, and I should contact my doctor for more information. That was about it. I held the letter and I was like, “What the hell is hepatitis C?” But I figured it probably wasn't that big of a deal. I mean, if it was, someone would call, right?
I did make an appointment with my doctor, like the letter had said. And by the time my appointment came around, my doctor was able to confirm what my own internet research had shown, “Hepatitis C is a blood borne infection affecting millions of Americans, Vietnam veterans, IV drug users, people co-infected with AIDS and HIV. People who had received blood transfusions before testing became available in the mid-90s. Health care workers.” It attacks your liver, it causes cirrhosis, liver cancer and often death. So, I guess it was a big deal.
I was sent to a specialist for a barrage of tests. I waited two agonizing days to find out if my newborn baby had been infected with this disease that I had just discovered I had. I held my mom's hand as I sat through a liver biopsy so painful that I went into shock. I was 20 years old. I was still a baby myself and I had this brand-new baby. I was trying to figure out why my world had just turned completely upside down. After all of the tests, I sat alone with the specialist and she reconfirmed my diagnosis, yes, I had this disease. I had probably had it my entire life. She said, it was most likely I had gotten it from a blood transfusion shortly after my premature birth. But there was nothing to be done.
Treatment at the time was really expensive, often more deadly than the disease itself. And only had about a 20% chance of working. I wanted to argue with her. I had gone through [chuckles] all this pain, all these tests, and I wanted to be cured. But she cut me off and she said, “Do you have anyone to take care of you? Anyone to take care of your child? Do you have anyone who can support you financially if you can't work?” I had to shake my head, no. I had a new baby and I was getting ready to leave a bad marriage. I had never felt as alone as I did at that moment. “Well, then I recommend waiting,” she said. “I mean, there's likely to better treatments down the road, and I don't think you'll die before then.”
I was sent home to deal with my new reality. I dealt with it the only way I know how. See, I'm a talker. I am a walking overshare. [audience laughter] So, I [chuckles] just started telling everyone. I was telling my friends, I was telling my family, I was telling old high school classmates, I was telling my co-workers, I was telling my neighbors. And the response I got was confusing. It was underwhelming, to say the least. But I'm stubborn. And also, I really can't take a hint. [audience laughter] So, I just kept talking about it.
One day, a co-worker pulled aside a close teammate of mine, and he said, “You have to tell Ijeoma to stop telling people about her hep C. It's not something she wants people to know about. It's a disease for dirty people.” See, you know, hep C is a disease you get if you use dirty needles or have risky sex. If you get it, it's because you deserve it and you deserve the shame that goes along with it. I stopped talking to people about it. For the next decade or so, I lived in fear, fear that this disease would pull me away from my precious babies, but also fear that I would be found out and I would be cast out. Not only would I die, I would die alone.
This fear was reconfirmed every time I went to a medical provider. When I would disclose my status to doctors, nurses, even dentists, they would all give me the same look. And a few would even say it, “You don't look like someone with hep C.” What they were saying was, I didn't look like a dirty person. I didn't look like someone who made really bad choices. But they looked at me like that afterwards. I wanted to shout, “Not me. No, I'm a good person. I got this from a blood transfusion. I'm a really good person.” But I had never before used someone's drug history to determine whether or not they were a good person. And as a godless feminist, I know I certainly never used anyone's sex history for that. [audience laughter & applause]
So, I wasn't about to start just to save myself a little pain and reinforce that stigma. I really, really resented the impulse. For a few days in 2010, everyone was talking about Georgia Congressman, Hank Johnson. He was talking to a Navy Admiral about the possibility of sending additional troops to Guam. He theorized that perhaps the added weight from the troops might be enough to capsize the tiny island. [audience laughter] People shared video of this. They were laughing hysterically. But I wasn't laughing. I was terrified. I mean, y' all, I love laughing at congress as much as any other American. [audience laughter] But it had been revealed shortly after this video went viral that Johnson had long been suffering from Hep C, and it had been affecting his speech and cognitive abilities. So, I sat there wondering, would that be me? Would I be left with the inability to effectively communicate, and be mocked and laughed at by my peers?” I sat alone in my apartment in the middle of the night and just watched that video over and over, and I cried.
A few years later, it was announced that a new, safer and more effective treatment for Hep C was being developed. I set up Google alerts. I did a bunch of research. I finally had some secret hope that maybe I could be cured before anybody knew I had this. As soon as it was more widely available, I made an appointment with my doctor. I was sent to a different specialist this time for the same tests, and largely the same result. Yes, I still was sick. I was more sick than I had been, but not very sick. This disease takes decades to kill. But also, like before, there was nothing to be done. “There is no way,” the doctor said. Like, I had asked for world peace instead of medical treatment. And he explained, “These pills are $90,000. You have to be practically dying to be approved. Come back in a few years.”
Now, I personally have not died myself, but I think it's safe to assume it's not fun. But death from Hep C is particularly awful. You die scared and confused as poisons that your liver would normally filter out, impacts your brain. You die yellow with jaundice, with your belly distended like you're nine months pregnant. You die drowning in your own fluids. I needed to get closer to that if I wanted to be treated. I went home and I cried for about two days. But I just got back to the life I'd always known. I focused on raising my sons. I bought a house and I started a writing career. I became known for my frank and open style about really personal and tough issues, that walking overshare thing, but paid. [audience laughter]
Even though I was known for this, not once did it occur to me to write about my Hep C, and the more well known I became for being open and honest, the more terrified I was that people would find out that I had been lying. It's ironic that as I began to be known for my wits and my wisdom, that the dreaded Hep C brain fog would set in. A lot of people who have been suffering from this disease from a long time, start to suffer neurological impacts. My anxiety and depression increased, my ADD became completely unmanageable and I couldn't remember words. I would stare at sentences for minutes that felt like hours trying to remember what I was trying to say. I couldn't read anymore.
I hadn't read a single book in three years, and I was scared to tell anyone. But it wasn't until the physical effects set in that I realized I had to do something. When my hair started breaking off and my joints started hurting and I spent way too many nights on WebMD saying, “Why do my feet itch all the time?” that I realized I had to be honest. I had been tested for just about every other possible medical cause for these ailments. But I finally had to say to my doctor, “I do think this is my Hep C.”
Now, my doctor, this is the same doctor I had called 15 years earlier when I got the letter. I prepared for her to tell me there was nothing to be done. But instead, she lifted her eyebrows and she said, “Huh? Why haven't we treated you for that?” Notification of approval of my treatment was really just as hilariously unremarkable as notification of my illness had been. I got a call from an 800 number and an automated voice says, “Your prescription request has been approved. Thank you for doing business with us.” That was it. I honestly thought it was for a change in my ADD med. I was like, “Okay, whatever.”
It wasn't until the next day that I realized it might be for this treatment. So, I called the insurance company and I waited on hold for 30 minutes while they looked through all the records. And finally, a guy said, “Oh, I'm seeing an approval for a Harvoni? That's a really expensive medicine.” I thanked him, and I hung up the phone and I cried. I cried more than I ever knew was possible. I cried for 15 years of pain, and shame and fear that I was going to be free of. But that elation didn't last long, because we live in the internet age. I immediately started googling, what's the worst thing that can happen to you if you take this medicine? [audience laughter] I realized that while most people were just fine, a not insignificant amount of people had really disastrous side effects. Some people even died. And I was scared. But finally, I had enough.
I had lived with this disease alone for 15 years. I was not going to go through the treatment alone as well. So, I gathered up whatever courage I had left and I did what you do nowadays, which is I got on Facebook and [chuckles] I made a video on a Wednesday at midnight, [audience laughter] friends only and I explained what I had been living with and the treatment I was going to be undergoing and how scared I was and then I just went to bed. The next morning when I logged on and I realized that people weren't condemning me. They were in fact concerned and loving. And some were really excited that I was going to get the treatment I needed. I made it public. Just like my fear of people's responses, my fear of treatment was overblown as well. I was sick for one day and then I was fine. In fact, I was better than fine. I was thinking more clearly than I had in years.
I was also seeing this disease more clearly, because once I came forward, other people came forward as well. People I had known for years started telling me about their moms, their dads, their aunts, their uncles who had died from this disease. People told me how long they had been keeping their diagnosis a secret. One woman told me about how even on her mom's deathbed, she refused to let anyone know what was killing her. There are 3.5 million of us [sobs] and we shouldn't have had to be alone. But we weren't just hiding from society. We were hiding from each other.
I am one of the lucky ones. I have been approved for treatment. I'm about halfway through. I don't know if it's working, but the odds are definitely in my favor. If it doesn't work, I'm going to be sad, I might be devastated, but I won't have to go through that alone. For 15 years, I was dying [sobs] alone. But now, even if this disease does kill me, I get to go out yelling and laughing and crying with my friends and my family and my whole community. And that, my friends, is actually living. Thank you.
[cheers and applause]
Jon: [00:47:50] That was Ijeoma Oluo. She is a best-selling author. And her work on race has been featured in The New York Times and The Washington Post, amongst many others.
We've taken you east, west, north and south to hear stories that didn't quite go the way anyone was expecting. But as expected, they all had moments that touched us in one way or another. And that is the beauty of storytelling. It reminds us that we have much more in common than we do differences, that we're all swatches in a quilt. And what a talented storyteller will do is weave the narrative thread that brings us all together that makes us all one thing.
That's it for this episode of The Moth Radio Hour. I hope one day you find yourself in a bar in a forest in Saint Croix, sitting next to a pig. That's it for this episode of The Moth Radio Hour. We hope you'll join us next time. And that's the story from The Moth.
[overture music]
Jay: [00:49:06] This episode of The Moth Radio Hour was produced by me, Jay Allison and Catherine Burns, Meg Bowles and Jon Goode, who also hosted this show. Coproducer, Viki Merrick. And associate producer, Emily Couch. Stories were directed by Maggie Cino and Jodi Powell.
The rest of The Moth's leadership team includes Sarah Haberman, Sarah Austin Jenness, Jenifer Hixson, Kate Tellers, Jennifer Birmingham, Marina Klutse, Suzanne Rust, Brandon Grant, Inga Glodowski, Sarah Jane Johnson and Aldi Kaza. Moth stories are true, as remembered and affirmed by the storytellers.
Our theme music is by The Drift. Other music in this hour from Sonny Rollins, A Hawk and a Hacksaw and The Hun Hangár Ensemble, Blue Dot Sessions, V.I.C., Hailu Mergia, The Magic Lantern and Andrew Bird. This hour was produced with funds from the National Endowment for the Arts.
The Moth Radio Hour is produced by Atlantic Public Media in Woods Hole, Massachusetts. And presented by PRX. For more about our podcast, for information on pitching us your own story and everything else, go to our website, themoth.org.