The Moth - The Moth Radio Hour: Lemon Pepper Wings All Flats Wet
Episode Date: September 1, 2021Join our storytellers on this week's Moth Radio Hour as they experience the unexpected twists and turns of life. From a Russian bathhouse in New York City to a lonely road in West Virginia, t...hese stories go places you won't see coming. This episode is hosted by regular Moth host Jon Goode. The Moth Radio Hour is produced by The Moth and Jay Allison of Atlantic Public Media. Hosted by: Jon Goode Storytellers: John Mack Freeman, Aydrea Walden, Jon Goode, Sofija Stefanovic, Ijeoma Oluo
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Attention Houston! You have listened to our podcast and our radio hour, but did you know
the Moth has live storytelling events at Wearhouse Live? The Moth has opened Mike's
storytelling competitions called Story Slams that are open to anyone with a five-minute
story to share on the night's theme. Upcoming themes include love hurts, stakes, clean,
and pride. GoodLamoth.org forward slash Houston to experience a live show near you. That's
theMoth.org forward slash Houston.
From PRX, this is the Maw 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 to get on the street and it turned out to be a winner.
Perhaps you returned your car to the Maw parking lot and discovered that your car was gone
and only your antactypt device was left in the parking space.
I once went to buy a t-shirt and 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 Sophia's The Fun of Itch.
Sophia 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 Sophia, live at the mall.
It's two years ago and I have just moved to New York and I'm feeling a little bit lonely and
weird, but I'm excited because my friend Hana 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 like 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 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 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, 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.
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.
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 loads and she leads us into this area
and it's the bath house area.
And it seems like familiar in a kind of bad way
from my socialist, Lucas Lavaian childhood.
It reminds me of some sort of horrible municipal swimming
pool.
There's all these cracked tiles and this dirty water
running down.
And I'm looking around.
And there's 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 decided like okay fine I'm not gonna say anything I'm not
gonna ruin the day so uh already like in a little bit of a bad mood we go into
uh me in a bad mood she's fine we go into the the steam room and we sit there in
the darkness with other people's like sweat falling on us
and 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 gonna pay later and I say
when we're not 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'm going back into the main area. I leave Hannah in the other people's sweat and I see Sonia standing there.
She's standing next to a colleague of hers.
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, angriest,
and European women.
And she says to her colleague in Russian,
hey, they booked in for two massages,
but now they've canceled 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 Hunter on her birthday.
So, I'm like, okay, well, I'm not going back in there.
So, I see this, I see this like, roll 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 gonna go and have a shower.
So I go there, and I start showering,
and 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.
And I'm so angry.
I'm really wet. 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've realized 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 recognize 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 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, like, fists
that she's standing there, because she's furious
that I don't want the message.
And I'm starting 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 realize 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 say my last little stand,
and I say, Nijali Massage, which
means I do not want a massage in my language.
And I hope that she's going to make the connection.
And I want to, in my mind, I march out with dignity,
but because of the tiles, I end up just really slowly
walking towards the changing rooms.
And then I get dressed, and I have to sit out there
in the cafeteria waiting for Hannah.
And as I'm waiting, I 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 a stewing, and some hipsters walk in and Sonja 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 laws 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 Sophia Stafanovich.
Sophia is a writer and the host of this alienation, a celebration of immigration, bars.
Her memoir, Miss X 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, man would probably be pork chops, apple sauce,
and purple coolade. Not grape, but the most delicious purple. Our next story with an unexpected twist comes from the place where I host the live Moth
Stories Lams, call home, and you can get lemon pepper chicken wings, fried hard all
flats with extra sauce day or night at Lanta Georgia.
Our storyteller, John McFreeman, is a librarian in the suburbs of Atlanta, and because this is
a radio, you can't see him, but trust me, he has the a librarian in the suburbs of Atlanta and because this is a 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 McFreeman 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 McReeman, live at the mall.
Yeah!
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 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 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 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 that 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 hoot-nanny.
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 badive 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 Max'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's 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, all of this chaos, and somehow she is at peace.
And I find that quite unexpectedly, so am I.
Thank you. Yeah!
Yeah!
Yeah!
Yeah!
Yeah!
Yeah!
Yeah!
That was John McBreeman, live at center stage in the ATL,
which loved our media partner in Atlanta GPB.
I asked John McIv, 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 hoot nanny is. He said to quote
Buffy the Vampire Slayer, it's a whole lot of hoot with just a little bit of nanny.
John Maxx Grandmother passed in December of 2019. He says she was won a by Khan and is shortly after that
party he added the wobble to his
Spotify playlist.
Every time it comes on John Maxxit,
it makes me happy and reflective and
a little sad, which is never what I
thought that song would do to me.
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This is The Moth Radio Hour from PRX and I'm John Good. Our next story of the unexpected comes to you not from Lewisville, not from Louisville,
but from Louisville, Kentucky, and 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 Mawth live shows is sometimes having to tell 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 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?
It 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 the school in West Virginia. And if you're unfamiliar
with West Virginia, I will just let the school in West Virginia, and if you're unfamiliar with West Virginia,
I would 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 a spoiler alert, I'm a black guy.
So, I know shocking, right?
Shocked.
So, they wanted me to come out to West Virginia to do this show at this college.
They sent the check, I cashed the check, I figured I should show up.
So I jumped in my car and I'm driving to West Virginia.
And all is going well.
I crossed the West Virginia state line and sawpherly in the back of my mind, the tune of dueling
banjos begins to play.
I ignored, keep on driving.
And about 10, 15 miles later, my mind engine in the car started to lay down the most wonderful of dueling banjos begins to play. I ignored, keep on driving.
And about 10, 15 miles later, my engine in the car
started to lay down the most wonderful hip hop beat.
It's like, ooh, ooh, ooh, ooh, ooh.
Which is wonderful if it's a Drake song,
but not good of a Vichyacar.
So I pulled over to the side, and by pulled over to the side,
I mean, I creamed 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 just 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 said 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 five 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 driver who was pulling by,
he pulled by and pulled over.
He hopped out classic truck driver.
Trucker had 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.
I think these are the ropes.
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 head 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, 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.
But so many horror movie star with benevolent trucker
offers stranded stranger ride up the road. But the
sun was getting lower, dueling banjos getting louder and I said,
I'm about to take my chances. So I hop in the truck and we
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 their host of the night 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 was so happen,
I am the guy that hosted that thing on CNN.
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 gonna believe it.
So we rode up the road, we
laughed, we had a good time, we got to the school, we jumped out, we took cell business
stuff. I'm sure he texted five, like, you won't believe it was in my truck. The black
guy from CNN. Oh, sure, he texted 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 time to let go. Woo!
Okay.
Thank you.
John Good, aka Juan Pueno, aka Jean-Bien, aka Me,
is an inenominated 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?
As a check engine light, this 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 croaker 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 web-enominated 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 Walton, live at the mall.
Thank you.
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 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
that helped 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 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.
I didn't want 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 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 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 control department, pretty awesome.
Being the only member of that apartment complex who was not also affiliated with the
Kenoga Park Alabama Street gang came with some baggage.
Julia's house also had heat.
And at the time, I was like, hold it around by 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 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 ain't grateful to the 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 fine.
What do you like to do there?
And she goes, oh, I've been so many times, I don't even do anything anymore.
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 by in Paris
because I was going through a divorce and she was going to 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.
And she was a little kid.
And she told me all the on and on about all the practices
and the shows and the competitions,
and all-centered, 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 it every proven like candy. And sometimes it was so painful like that
one help. And now 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 toes she was probably forever and she goes, 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 and
our 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 Agriwalden live from Buzz East East and Los Angeles, California, where KCRW holds
us down.
Agriwa 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 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 pitchline. Yes, you
can pitch us your story by recording it right on our site or or call 877-799-Moth.
That's 877-799-6684.
The best pictures 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 Mawth Radio Hour continues. ʻ‿ʻ ʻ‿ʻ ʻ‿ʻ ʻ‿ʻ ʻ‿ʻ ʻ‿ʻ ʻ‿ʻ ʻ‿ʻ ʻ‿ʻ ʻ‿ʻ ʻ‿ʻ ʻ‿ʻ ʻ‿ʻ ʻ‿ʻ ʻ‿ʻ ʻ‿ʻ ʻ‿ʻ ʻ‿ʻ ʻ‿ʻ ʻ‿ʻ ʻ‿ʻ ʻ‿ʻ ʻ‿ʻ ʻ‿ʻ ʻ‿ʻ ʻ‿ʻ ʻ‿ʻ ʻ‿ʻ ʻ‿ʻ ʻ‿ʻ ʻ‿ʻ ʻ‿ʻ ʻ‿ʻ ʻ‿ʻ ʻ‿ʻ ʻ‿ʻ ʻ‿ʻ ʻ‿ʻ ʻ‿ʻ ʻ‿ʻ ʻ‿ʻ ʻ‿ʻ ʻ‿ʻ ʻ‿ʻ ʻ‿ʻ ʻ‿ʻ ʻ‿ʻ ʻ‿ʻ ʻ‿ʻ ʻ‿ʻ ʻ‿ʻ ʻ‿ʻ ʻ‿ʻ ʻ‿ʻ ʻ‿ʻ ʻ‿ʻ ʻ‿ʻ ʻ‿ʻ ʻ‿ʻ ʻ‿ʻ ʻ‿ʻ ʻ‿ʻ‿ʻ ʻ‿� The Moth Radio Hour is produced by Atlantic Public Media in Woods Hole, Massachusetts,
and presented by the Public Radio Exchange, PRX.org.
This is the Maw Video Hour from PRX.
I'm your host John Good, not last story that takes an unexpected turn, comes from Ijoma
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 maybe even Ijoma 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 it 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.
Habitatus C is a blood-borne infection,
affecting millions of Americans.
Vietnam veterans, IV drug users,
people co-infected with A's in 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 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 a 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 caught 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 overshare.
So I just started telling everyone.
I was telling my friends, I was telling my family, I was telling old, like high school
classmates, I was telling my co-workers, I was telling my neighbors.
And the response I got, it was
confusing, it was underwhelming to say the least.
But in 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 Ejoma
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 if you would even say it, you don't look like someone with epilepsy.
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 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.
But it had been revealed shortly after this video went viral that Johnson had long been
suffering from hapathy 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 perhaps
she 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. 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 for a man 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 your nine months pregnant.
You die drowning in your own fluids and I needed to get close 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 oversharing 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 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
in neurological impacts.
My anxiety and depression increased.
My ADD became completely unmanageable,
and I couldn't remember words.
I would stare at senses 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 I wasn't until the physical effect set in.
But 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 heppsy. 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 to 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 I look through all the records
and finally a guy said, oh, I'm seeing an approval
for a hervoli.
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 relation 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 and 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 somewhere 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 caking 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, crying you crying with my friends and my family, my whole community.
And that, my friends, is actually living.
Thank you.
Thank you.
Woo!
That was Ijoma 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 and acquilt, and what a talented storyteller will do is weave
the narrative thread that brings us all together, it 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 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 Katherine Burns,
Meg Boles, and John Good, who also hosted this show.
Co-producer Vicki Merrick and associate producer Emily Couch.
Stories were directed by Maggie Sino and Jody Powell.
The rest of the Moff's leadership team includes Sarah Haberman, Sarah Austin-Jones, Jennifer
Hickson, Kate Tellers, Jennifer Birmingham, Marina Cluche, Suzanne Rust, Brandon Grant, Inga Gludowski, Sarah
Jane Johnson, and Aldi Kaza.
Most 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 Hangar Ensemble,
Blue Dot Sessions, VIC, Hylum Maggaya, 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. Thank you.
you