Calling all educators. Join the Moth this summer for the virtual Moth Teacher Institute. MTI is for 5th to 12th grade teachers, whether you're looking to fine-tune your strategies or a curious newcomer eager to learn more about moth storytelling. Picture this.
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So yeah, it pays to stick around until curtain call, but it pays to discover even more. See terms at discover.com slash credit card. This is the Moth Radio Hour. I'm your host, John Good. 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 St. John and ended up in a bar in a forest sitting next to a pig in St. Croix. Life will certainly take you to some wild, interesting, and complicated places.
In this hour, we have five stories where things take an unforeseen turn for our storytellers. Our first story comes from Sofia Stefanovich. Sofia told this story where the apple is big and the pizza slices are even bigger. New York City at the Housing Works Bookstore. Shout out to WNYC, our public radio partner, and the city that never sleeps. Here's Sofia live at the mall.
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 and 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 and 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.
And 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. And let's just call her Sonia for the purposes of this story. So Sonia's sitting there in a robe eating stew. And she's looking over at us. And as the receptionist is selling the tickets, Sonia 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, "Спасиба" in Russian. She does not get the clue. Instead she takes us through to the bathhouse changing room area and it's women's only day so we don't need to wear swimsuits. And she gives us these towels that are like about the size of a piece of toast so you can either cover like the front or the back but not both.
And she gives us those and she leads us into this area and it's the bathhouse area and it seems like familiar in a kind of bad way from my socialist Yugoslavian childhood. It reminds me of like some sort of horrible municipal swimming pool. There's all these like cracked tiles and this dirty water running down. And I'm looking around and there's like lights that have gone off in places and there's these women in the shadows like washing each other with tiny bits of soap. And Hannah's looking around and she says, oh, this seems so authentic. And so I decide like, okay,
Fine, I'm not going to say anything. I'm not going to ruin the day. So already like in a little bit of a bad mood, we go into, me in a bad mood, she's fine. We go into the steam room and we sit there in the darkness with other people's like sweat falling on us.
And Sonia 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, yeah, you're getting the massage and you're going to pay later." And I say, "We're not getting the massage." I kind of 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, and I see Sonia standing there, and she's standing next to a colleague of hers, who, sorry, she's naked now. We're all naked now. She was wearing a robe before, but just like, remember that from now on, everyone is naked, 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 these kind of short, angry Eastern European women. And she says to her colleague in Russian, hey, they booked in for two massages but now they've cancelled on us.
And she calls her colleague, 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 kind of shrugs and she picks up this gigantic branch and goes into the steam room where, I guess, to beat Hannah on her birthday. So I'm like, okay, well, I'm not going back in there. So I see this, I see this like row of showers along the wall and I decide, seeing as I have nothing else to do and it's a kind of tense, naked situation, I'm just going to go and have a shower. So I go there and I start showering and Sonia 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. And 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. And I'm looking at her and she's looking at me and I realise 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 kind of new and lonely here and I recognise in her something that's kind of familiar and it's something that reminds me a little bit of my home and of my family and where I come from. And I want to be part of like a gang. I want to be part of a team. I want her to accept me and kind of recognise me the way that I recognise her. But she doesn't. She's just standing there and she's angry and she's making her hands into like fists as she's standing there because she's furious that I don't want the massage.
And I start to think to myself and I think, am I about to have like a fight with this small elderly Russian woman and we're both naked? And I look at her and I kind of size her up and I realise that even though she's quite a lot shorter than me, she's really, really strong and also she has like a hometown advantage on the wet tiles. So I decide I'm not going to take the chance.
But instead I do like just say my last little stand and I say "Ne j'allais massage" which means I do not want a massage in my language and I hope that she's going to like make the connection. And I want to like in my mind I like march out with dignity but because of the tiles I end up just really slowly walking towards the changing rooms.
And then, you know, I get dressed and I have to sit out there in the cafeteria waiting for Hannah. And as I'm waiting, I kind of can't resist the smell of the delicious Eastern European food. So I order some stew and I'm sitting there with a stew, kind of stewing. And some hipsters walk in and Sonia comes out in her robe and she starts to upsell them. And she kind of glances over at me and I'm just sitting there with my stew and she gives me this, like, the tiniest kind of nod of acknowledgement. And...
She goes, she lures like the hipsters into her den and I can't help but kind of smile to myself and I eat this stew and it tastes a little bit like home. Thank you. That was Sofia Stefanovic. Sofia is a writer and the host of This Alien Nation, A Celebration of Immigration, Bars. Her memoir, Miss 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 Sophia if she has returned to that or any bathhouse since. She said, "No way." I was struck by the line in Sophia'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. Our next story with an unexpected twist comes from the place where I host the live Moth Story Slams. 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 mall. 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.
And 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. And 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 city-fied pink Okami liberal who is bringing my husband to meet them for the very first time.
And 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 in their laps. There's a pool that nobody's using and a bar that's unattended. And in the middle of it all is my grandmother, dancing with her youngest son David to Hello, Darlin'.
And everybody is watching and everybody's pretending like they're not watching and 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. And the dance ends and the spot next to her opens up and so I sit down on the concrete and
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. And, but it's loose to hide all the ports and the wires and the tubes. And she takes the oxygen tube out of her nose and we start talking and she asks me about the house I just bought and I ask her how she's enjoying the party and we're making small talk in a situation that really doesn't need small talk. And she pauses for a second and she turns to me and she goes, "You know, I am fine with all of this.
And 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." And 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 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. And 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 a wake 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. And 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 Mac's husband Dale.
And 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. And 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. That was John McFreeman live at Center Stage 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 stay over. He said, "They've only been up for day trips 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 quote 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 said, it makes me happy and reflective and a little sad, which is never what I thought that song would do to me. Wobble, baby, wobble, baby, wobble, baby, wobble.
Coming up, a man that drives trucks and a lady that teaches people to drive when the Moth Radio Hour continues. The Moth Radio Hour is produced by Atlantic Public Media in Woods Hole, Massachusetts.
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This is the Moth Radio Hour, and I'm John Good. 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. And it's all told to you by John Good. Wait a minute, that's me.
Part of being a host for the Moth Live shows is sometimes having to tell a story yourself. 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 gonna work out. Just you, sir? Don't listen. All right. I'm just kidding. It's gonna work out. Trust me. So I was hired by this 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. It's not how they do it. And, uh, spoiler alert, I'm a black guy. So, 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 cross the West Virginia state line and softly in the back of my mind, the tune of Dueling Banjos begins to play. I ignore it, keep on driving. And about 10, 15 miles later, my engine in the car starts to lay down the most wonderful hip-hop beat. It's like, 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 mean 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. I popped the hood because 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. As far as I know, there are hamsters on wheels making this thing go. 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. And I'm not a mechanical genius of any sort.
But the spark plug wire was on fire. And I said, that's the problem right there. There it is. 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 was pulling by. He pulled by and pulled over. He hopped out. Classic truck driver. Trucker hat, flannel shirt, 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. 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." And I said, "Look at the both of us mechanical geniuses." 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'd 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.
But so many horror movies start with benevolent trucker off a stranded stranger right up the road. 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 like 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. And as you know, if someone starts with, I don't mean to sound racist or nothing,
The next thing you're gonna 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,' and there was this black guy on there hosting it, and I swear, you look just like that black guy." And let me tell you two things I know to be true. Number one is all black people do not look alike.
But the second thing I know to be true is, as it would so happen, I am the guy that hosted that thing on CNN. So I said, "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 gonna 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, "He won't believe who was in my truck. The black guy from CNN."
So she's texting back like, that's not Don Lemon. 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 on to maybe a bit too long, and start deciding some of the things that it was time to let go. Thank you.
John Good, a.k.a. Juan Bueno, a.k.a. Jean Bien, a.k.a. 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...
John, why would you try to drive to West Virginia in a car that looks like it could use some lotion, has a check engine light that stays on so much that now it's just thought of as a kind of night light, and they 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 Adrienne Walden, live at the moment. Thanks, guys.
So, I don't think any of you know this girl, but trust me when I say 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 like recreated the entire film "The Help" before breakfast.
And 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. 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.
I do not recommend living life as a driver's ed instructor. First of all, there's 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. Julia also had like 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 like cuddled around my oven every night because that was the only utility I could afford to turn on. And I didn't think that I could dislike her anymore until it was like December and then I made the mistake of asking her what she was gonna do over the holidays. And she goes, "We're going to Hawaii again. It sucks." And I wanted to be like, "Oh my god, you're so right. Spending a week in paradise with people who love you sounds absolutely horrible. You ingrateful little child who can't even drive a stick."
But you can't say that to a kid. So instead, I said, oh, Hawaii, well, that sounds fun. What do you care? And she goes, I've been so many times, I don't even do anything anymore. And I wanted to say, you're a horrible human being. 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 gonna be over this guy by like next semester. 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. And she told me all in all, on and on about all the practices and the shows and the competitions and all sounded wonderful. And then she started talking about how that year when she would get done with a practice, her arms and legs would feel really tingly. And then they started like burning. And then sometimes she couldn't feel them at all.
and how she started taking ibuprofen because sometimes it was so painful, she started taking ibuprofen like candy and 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 in two vertebrae and the doctor ordered her off of her feet and out of the toe shoes probably forever and she goes, "I don't even know what to do anymore. I don't really know who to be."
And I totally got that because I was going through a big shake of my life too. So we got back to her house and I looked at her giant mansion and her horses and her cars and all her stuff and 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.
That was Adria Walden live from Busby's East in Los Angeles, California, where KCRW holds us down. Adria 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 Adria did her job and Julia learned to drive, but she hopes that Julia as 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 pitches are developed for moth shows all around the world. ♪
We've been to New York, Georgia, Kentucky, California, and our last stop is Washington State when the Moth Radio Hour continues. The Moth Radio Hour is produced by Atlantic Public Media in Woods Hole, Massachusetts.
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This is the Moth Radio Hour. I'm your host, John Good. And our last story that takes an unexpected turn comes from Ijeoma Oluo. Here she is, live in Seattle. 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 something.
Maybe even Ijeoma Oluo, local hero. But I opened the letter and the first line jumped out at me and 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. 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, healthcare workers. It attacks your liver.
It causes cirrhosis, liver cancer, and often death. So, I mean, 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, and 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 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? And 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 be 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 and I dealt with it the only way I know how. See, I'm a talker. I am a walking over chair. So I 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, 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.
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. But 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.
And 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. 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. And he theorized that perhaps the added weight from the troops might be enough to capsize the tiny island.
People shared video of this and 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. 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 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 to
But death from Hep C is particularly awful. You die scared and confused as poisons that your liver would normally filter out impact your brain. You die yellow with jaundice with your belly distended like you're nine months pregnant. You die drowning in your own fluids. And 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, you know, really personal and tough issues, you know, that walking over share thing, but paid. And 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 kind of ironic that as I began to be known for my wit and my wisdom, that the dreaded Hep C brain fog would set in. A lot of people who have been suffering from this disease for 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, and 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, "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." And that was it. I honestly thought it was for a change in my ADD meds. 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 Hervoni? That's a really expensive medicine."
And 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, and I immediately started Googling, "What's the worst thing that can happen to you if you take this medicine?"
And 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 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.
I made a video on a Wednesday at midnight, 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. And 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 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 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. 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 St. 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. This episode of the Moth Radio Hour was produced by me, Jay Allison, and Catherine Burns, Meg Bowles, and John Good, who also hosted this show.
Co-producer Vicki 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-Janess, Jennifer Hickson, Kate Tellers, Jennifer Birmingham, Marina Cloutier, Suzanne Rust, Brandon Grant, Inga Glodowski, Sarah Jane Johnson, and Aldi Caza. 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-Hongar Ensemble.
Blue Dot Sessions, VIC,
Hailu Mugaya, The Magic Lantern, and Andrew Byrd. 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. Special thanks to our friends at Odyssey, including executive producer Leah Reese Dennis. For more about our podcast, for information on pitching us, your own story, and everything else, go to our website, themoth.org.
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