Host: Jenifer Hixson
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Jenifer: [00:00:12] From PRX, this is The Moth Radio Hour. I'm your host, Jenifer Hixson.
In this hour, we'll be exploring stories about Autonomy, the ability to make your own decisions and the agency to do what's best for you, despite the obstacles that life invariably throws your way. We'll hear about autonomy in the context of a family, a classroom or in the case of this first story, a community, and the desire to be the one to tell its story.
This was part of a show in Whitesburg, Kentucky, where we partnered with Appalshop, which is a media arts and education center known for celebrating all things Appalachian. Live in Kentucky, here's Shaylan Clark.
[cheers and applause]
Shaylan: [00:00:56] I grew up in a small town, the small town of Lynch, Kentucky, which is located in Harlan County, Kentucky, right across the mountain. [audience cheers and applause]
The thing I love most about my home is my close-knit community. Everyone takes care of everyone. We care about each other. We take care of our home and our people. I remember, in grade school, we had this thing called spirit week. It was the week right before homecoming, and there would be different themes every day of the week.
So, you had decade day, and pajama day and all these different days. But one day that always remained the same thing was Coal Miner Day. I had this, because one thing that we had in common in my small community is everyone's family had a coal miner. My father was a coal miner. If your father wasn't a coal miner, then your uncle was or your papaw was. Didn't matter who you were, you knew a miner or you were related to a miner. And so, Coal Miner Day was the day that all the kids got to go home and ask their parents, “Can I wear your uniform? Can I put on your hat with the light on it? Can I put on your jacket with your name on it, or your big boots or your striped pants?”
I just remember coming home being like, “Mom, it's Coal Miner Day. I need to borrow dad's big coal miner uniform. Do you think he'll let me wear his jacket, or his pants or his boots?” He was a much bigger man than me, and so he would always let me wear his jacket with the orange reflection stripes on it. It was so big, it came down all the way past my knees. I remember finding the biggest pair of boots I had and wearing them to school the next day. So proud.
All the kids would come into school with their family names on their jackets. We'd rub our hands in the dirt, and put it all over our face to make it look like we just got off a second shift. We'd walk through the hallways, and the teachers would be smiling. It was like our way of honoring the hardworking men and women of our community. In high school, I remember I was a freshman, and I made so many new friends that year. One particular friend, I remember her name was Kelsey. Me and Kelsey clicked, immediately became best friends. Her dad was a coal miner too.
As the year went by, I remember there was whispers in the classrooms of people being upset, because their families were having to move. And I was like, “Why is everyone having to leave?” It was because their fathers were losing their jobs. The mines were shutting down. There was no work. And so, I just remember pushing it to the back of my mind, because my dad still had his job. And so, I was like, “It's whatever. Your dad can just find another job. You're being dramatic.” Until one day, I walked into my science class that I had with Kelsey, and she was crying. My immediate thought was, “Girl, who we fighting after class?” Like, “Who is it? Who did it? What are we doing? What's up? You know, I'm down a ride for you.” Like, “Kelsey was good. Just let me know.”
She was like, “No, we're not fighting anyone, but I'm moving.” I was like, “Why are you moving? Why would you leave? You're my first friend that I made. We clicked so well. Why are you having to leave?” She said, “My dad lost his job. The mine shut down.” That was the first time that it really hit me personally. I realized that what is our community without coal mines. We love it here, and we love each other. But without these jobs, my friends and their families had to leave.
It was my junior year of high school, the summer of my junior year, and it was in July. I remember coming downstairs, and my mom was cooking dinner, and she just got off the phone, and I was like, “What's wrong?” She had a look on her face. She was like, “Your dad's mind shut down.” I just remember thinking, “Oh, my God, do we have to move? Do I have to leave this place and these people, these mountains that I love so much? Is this really what takes me away from my home?” And she's like, “I don't know.” So, fortunately, my father had been in the mines long enough to where he could get his retirement, and I was able to stay in a place that I love. But for a lot of other families, this wasn't the same outcome.
When I graduated high school, I got into film and I did the AMI Summer Documentary Institute internship here in Whitesburg, Kentucky with Appalshop. They showed us many different films. I remember one day, we were learning about perception, and they showed us films of what outsiders see us as. One film they showed us was Diane Sawyer's, Hidden: Children of the Mountains. I just remember at the end of that film, there was steam coming out of my head, because all I had seen for that entire film was kids with no teeth and them claiming it was because they were drinking too much Mountain Dew, and kids with no shoes running around in the dirt.
I was just like, “I have all my teeth.” I've lived here my whole life. All my friends have their teeth and we all have pretty nice shoes, although we prefer to be barefoot. [audience laughter] And so, after that, they showed us another film, Harlan County, USA. This film struck me in such a way that it brought tears to my eyes. There are not a lot of films that can make me cry. But I remember at the end of it being so proud to see what the people of my community fought for. These miners were fighting against these companies for basic human rights. I just remember that's the way I see my community. This is how I see my people. We're fighters and we'll fight for what we work for.
So, it's the end of this summer, it is July 30th and I remember I'm sitting on a couch and I'm scrolling through Facebook and I see that Blackjewel miners go on protest on a train track in Cumberland, Kentucky. They're blocking a train from taking coal out of the mines. So, what happened was the Blackjewel coal company shut down and went bankruptcy. They had paid their miners on the weekend of the 4th of July. They got their checks, they cashed their checks, they paid their bills, they went on vacation. Come Monday, all of that money was taken out of their accounts and there were thousands of dollars in a negative. Families having to leave their vacation to pick up their children and say, “We can't stay at the beach anymore. We can't afford it.”
And so, when I heard the news, I ran in the kitchen and I showed my mom, she was cooking dinner. She looks at me and she goes, “Well, I know you're going down there.” [audience laughter] So, I didn't have a camera on my own. I called some friends at Appalshop and I was like, “I need a camera.” And they were like, “Girl, come get it.” And so, I came over here I got the camera, I got the equipment and I went straight to the protests. I remember pulling up [chuckles] by myself with this huge camera bag and this monopod, this camera around my neck, and I'm ready. I'm ready to get the story.
I walk up to a group of guys, and one of them looks at me with a straight face and he goes, “Who were you with?” “Excuse me? Well, sir--” I was a little taken back, but there were some other guys there that I went to high school with that recognized me immediately. And they were like, “No, dude, she's from here. She's with us. She's going to tell our story. You can talk to her. She's going to tell it right.” I understood where that miner was coming from.
People come in here with their cameras, and they paint us in a completely different light of what we are. I want the Blackjewel miners to know that no matter how long this fight takes. The bloody Harlan fight took 13 months. We are six weeks in, and we will continue and they will have the love and support of their community behind them. I will be right there with my monopod, and my camera and my microphone, ready to tell our story the way it should be told. Thank you.
[cheers and applause]
Jenifer: [00:10:29] That was Shaylan Clark. She's gone on to be a facilitator, organizer, and filmmaker, and is the director of an education workshop series. She's passionate about creating safe and comfortable environments for queer people and people of all bodies.
Shaylan says that she will always be proud to be from Appalachia and call it home. As for Black Jewel mining company, the bankruptcy went through and left miners in four states without jobs and the promised restoration of the land unfinished.
In a moment, complications from dating outside your faith and taking control when folks can't seem to pronounce your name.
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Jay: [00:11:42] 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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Jenifer: [00:11:57] This is The Moth Radio Hour from PRX. I'm Jenifer Hixson.
In this hour, stories of forging your own path. Cultural traditions are vital to families. But time and time again, romantic love creeps and stirs things up. This next story refers to endogamy, the custom of marrying only within the limits of a specific community. Live in Brooklyn, where WNYC is a media partner of The Moth. Here's Daisy Joy Rodrigo.
[cheers and applause]
Daisy: [00:12:29] So, I'm sitting in the living room of my parents’ home. I am freaking out. What I'm about to say is going to change the way in which they thought my life was going to unfold. What I'm about to say can change everything. There were girls in our community that were shipped off to India, never to be seen again after saying what I was getting ready to say.
My family are not just Indian Catholics, but they are Kna Indian Catholics. So, what I'm going to tell you about this, is that in the culture, the roots are deep and the rules are endless. Short story form the Knas are the descendants of a nomadic tribe that consisted of 72 families and 7 clans that were all of Jewish, Christian Syrian descent. They were led to the southern coast of India and lived in the state of Kerala by Thomas of Cana, where they practiced endogamy since the fourth century.
So, what am I trying to say here, is that Knas marry Knas. But I was in love with Ken. [audience laughter] And Ken is not Kna. But he is Catholic, but Ken's Puerto Rican. So, I'm telling myself, “I can do it. I can do it.” There's my older, unmarried sister next to me like, “Do it already.” But here's the thing. I'm scared. Actually petrified. When we think about rebels, we always talk about, “Oh, man, they're so brave, they're so strong” and they're all those things. But deep down inside, they're also very scared. So, I took deep breath and I said to my parents, “Hey, you know my friend, Ken? I think I want to marry him.” [audience laughter]
Okay. So, a little side note about Indian parents. Indian parents do not want to know who you are dating. They want to know who you're marrying. Kind of puts unnecessary pressure on a first date like, “Hi, my name is Daisy. Where is this going?” So, Indian women, we tend not to share such details until we're 100% sure on where this is going. So, what that means is that Indian daughters are fiercely loyal to their parents, but they do keep separate worlds, keep their dating world, a secret, and then their traditional Indian world as well.
So, back in the living room, and I'm looking at my parents and I'm like, “If they go with this, I will be the first in the family to get to marry a Puerto Rican guy.” [audience laughter] Marry outside the culture, not have an arranged marriage. And so, my mother is looking at me and then she looks at my sister, and then she looks back at me and she says, “You have to ask her if you could get married first.” Because she's older than me and remember, I told you Knas endless rules.
So, I turned to my sister, who knew about this plan all along and said, “Hey, are you okay with this?” And she's like, “Yeah. Sure.” And I'm like, “Okay. Great.” But unfortunately, that's when the questioning began. So, my parents, “Where is he from?” And I said, “Brooklyn.” Thanks to the evening news in the late 1990s and the early 2000s, my parents had a terrible perception of Brooklyn. [audience laughter]
Then, they asked, “Well, what is his job?” And I said, “Well, he's a manager with Federal Express.” All my mother heard was federal and she said, “Oh, federal job. Very good.” [audience laughter] I was like, “Listen, I'm going to take this as a win right now.” There are a lot of details we've got to iron out. Just going to skip through this.” [audience laughter] So, then they ask, “Well, what is his religion?” And I said, “He's Catholic.” So, there was common ground and a lot of silence.
So, we're in this living room. And now, all of us are staring at the ginormous sacred heart of Jesus painting that is up on the wall. All these years, I have never thought about what my parents were thinking during that time, because I'm like, “This is all about me.” I know I was praying in that Jesus picture like you would not believe. But now that I think about it, I think they were praying too. And so, then my dad says, “Well, it's tradition. We have to inform the elders of your plan.”
And so, he stands up, and he leaves the living room, and he walks down the hallway, and he opens the door to his master bedroom, and my mom is right behind him and they shut the door. And I'm like, “This is really happening.” They're making the call. Like, that's the official. This is really happening. And so, I can hear them on the phone. With that one phone call, you wouldn't believe the number of phone calls that came after, because the Indian community does not play. When there's dirt out there, [onomatopoeia]
So, I can hear bits and pieces of his conversation. And I can hear the banter. And it was like, “Well, she's not marrying an Indian person, so she can't have an Indian wedding. She cannot follow tradition. She's breaking tradition.” I remember hearing my father say, “The only way I know to send her off is using the Knanaya traditions. So, I'm going to marry my daughter off the only way that I know how.” He said a lot to me that night. And as every phone call he took thereafter, his voice became stronger and stronger. The one message I remember is him saying, “Daisy knows the way to her happiness, so I'm going to follow her.” I am so badass. [audience laughter] [audience cheers and applause]
But you know what? The truth is, it's actually my mom and dad, who were the real badasses. Because not only did they okay it, they had my back. They gave me the greatest gift of all. And that's the gift to allow me to be who I truly am. And for that, I am going to be forever grateful. Thank you.
[cheers and applause]
Jenifer: [00:19:44] That was Daisy Joy Rodrigo.
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Daisy lives in New York with what she calls her Indo-Rican family. She and Ken have three kids. Daisy is a New York City school principal who proudly serves the same Bronx community, her immigrant parents once lived in as they began their journey in America. Before he passed away in 2011, Daisy's dad shared that he believed Ken was, in fact, the one, the best partner for her. He said that, “Good people are good people, no matter where they come from.” Ken and Daisy have been married for two decades and going strong. To see a picture of Daisy, Ken and their kids, visit themoth.org.
You can share these stories or others from The Moth archive and buy tickets to Moth storytelling events in your area through our website, themoth.org. There are Moth events year round. Find a show near you and come out to tell a story. And find us on social media too. We're on Facebook and X @themoth and on Instagram and TikTok @mothstories.
Our next story was told in Chicago, where we partner with Public Radio Station WBEZ. Here's Quetzalli Castro.
[cheers and applause]
Quetzalli: [00:21:08] I am the Mexican daughter of two Mexicans. Who would have thought? My parents were born too late to be hippies and too early to be hipsters, but I definitely know they did a lot of things before it was cool. They met each other at a Mexico City ashram. They got into vegetarianism. They did a lot of yoga and meditation. And then, they decided to immigrate to America with me. [chuckles] In their wisdom, they decided to give me the name of Quetzalli. Let me spell that for you. Q-U-E-T-Z-A-L-L-I. Quetzalli. Quetzalli.
Now, I love my name. I really do. My parents have told me the stories, and I've done the research, and Quetzalli means beautiful feather of the quetzal bird. This bird is important to Mesoamerican mythology, because these are probably the feathers that go on a feathered serpent God named Quetzalcóatl, or as the Mayans call him, Kukulkan. And that's so cool. I love this name. I loved it even when I was little until I got to school. [audience laughter]
Now, everyone knows this moment. It's the first day of school, and the teacher's like, “Sssssh, I'll wait. [audience laughter] I'm not going to talk while you're talking.” Erin Anderson, Brittany Barton, Miss Castro and that's quickly followed with, “Do you have a nickname? What's your middle name?” Isabel? Izzy. You're an Izzy. Now, normally, I guess I didn't mind that when I was a kid, but nowadays, it makes me think about Ellis Island and how so many people came into the US.
At that island, they had to make some big decisions. They probably just came from their home country where they had just been rejected. They are not about to get rejected by the US, and neither am I, all right? In these moments where I'm back in this classroom and this teacher is asking me what my name is, “I guess it's Izzy,” all right? In other moments, they'll start off with, “I'm going to butcher this. You know, it's the first day of school, and I'm going to butcher some names and probably yours for the rest of your life. So, let's start now, okay? Quetzalli? Quetzalli?” There was this one really nice white lady teacher who didn't even pause and proudly called out for, “Quesadilla Castro.” [audience laughter]
“It’s Izzy. Call me, call me Izzy. I've been Americanized.” That's okay. But I want you guys to realize that it takes quite a bit of nerve for a student to stand up to an adult and fight about how their names are pronounced. These decisions have to be made really quickly. When these moments start happening, you get this sense of a small rejection from a community, like an emotional paper cut. You really have to decide, “Do I fight this teacher today? Do I take this paper cut? Do I change? Do I become less of who I am?”
That really created a craving in me and a reason to start fighting back in my own way. I dared to dream of a future where people would be culturally competent. [audience laughter] They would say names, my name the right way the first time. [chuckles] And so, I started this crusade. One eternity later, I'm the teacher. I'm the teacher now taking attendance. And oh, my goodness, so much and so little has changed in public schooling, let me tell you.
There are Black Lives Matter posters, there's all sorts of rainbow things everywhere. You have the Hate Has No Home Here. I'm glad for that. But I still see that Ellis Island is alive and well in a lot of my students. One of them didn't even let me take attendance first. He's like, “Call me Aki.” “Okay, Akindele. I practiced though. [audience laughter] [audience cheers and applause]
My [unintelligible [00:27:03] wants to be called Leslie. A teacher will come in looking for Gail. “You mean Gail? Gail's here. Go, Gail.” Gail. It takes a lot of coaxing, but I get most of them to really start thinking about how they are valued and they belong and their name is their name. Sometimes when I give my spiel to students, they also get interested and they're like, “Miss Castro, what's your name?” That's when I like playing this game. It starts with a Q and you'll never guess what it is. [audience laughter]
They usually never do, until one year, this girl raises her hand and she's like, “Is it Quetzalli?” “What? Who told you? [audience laughter] Who told you?” “Oh, no, that's my little sister's name.” “[gasps] what? [audience applause]
I am so ready for her. [audience laughter] Oh, my goodness. If Quetzalli is on her way and I get to teach her in a couple of years, if she knows now what I wish I knew back then, I would get her to tell those teachers and those bullies, often one and the same. But I would tell her to tell them that you are named after a precious feather of a feathered serpent God, that this God has a pyramid in Mexico, that many travel to go see. It is a wonder of the world, and they should probably take better care of your name lest they displease these gods. [laughs]
[cheers and applause]
Jenifer: [00:29:09] That was Quetzalli Castro. She is currently a seventh-grade teacher. I asked her if she had advice for fellow teachers. And she said, “That learning about and honoring all your student’s cultural identities ultimately enriches the experience for everyone in the class, including the teachers.”
When I was growing up, I had a classmate, Siobhan, the Gaelic spelling with a B-H right in the middle. It threw some teachers at first, but they eventually got it right, because that's what we do in a nation of immigrants. And to all who have had their names botched, I know there are a lot of you. Thank you for taking the time to let us know. Getting your name right is important. Thank you, Quetzalli.
Do you have a story to tell us about staying true to yourself, bucking the system or circumventing the traditional way of doing things? We'd love to hear a pitch about it. You can leave a pitch right on our site, themoth.org, or call us and leave a less than two-minute pitch at 8-7-7-7-9-9-M-O-T-H.
Transitioning from fifth grade to sixth grade was my opportunity to have a fresh start. I could break out of the confines of a catholic school uniform, where my options were a dress or a skirt and put on whatever I wanted, girls or boys’ clothes. I could finally create the vision of myself I had in my head already, confident, cool and with a fresh new haircut.
That summer, my mom and I walked to our local hair salon, Estètica MARI, with my hair in a braid. I remember sitting in a salon chair and seeing my braid leaving my head. The hairstylist tried to convince me, I look beautiful with a bob haircut and I shouldn't go any further. I had to call my mom for backup to convince her in Spanish that I wanted it shorter and shorter.
Finally, they raised a mirror to the back of my head, and I could see how short it was, evidence of what had happened all over the floor. I was so damn proud of myself and ready. On the first day of school, I stood in the entranceway dressed in a T-shirt and skater boy shorts from the boy’s section.
For the first time, I felt like the inside matched the outside, that I didn't have to compartmentalize who I was at school and who I was at home. For the first time, I was showing up as myself, by myself.
Jenifer: [00:31:46] Remember, you can picture your story at 8-7-7-7-9-9-M-O-T-H. That's 877-799-6684 or online at themoth.org, where you can also share these stories or others from The Moth archive.
When we return, a man who loses almost all control finds ways to stay grounded. That's when The Moth Radio Hour continues.
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Jay: [00:32:47] The Moth Radio Hour is produced by Atlantic Public Media in Woods Hole, Massachusetts. And presented by PRX.
Jenifer: [00:33:01] You're listening to The Moth Radio Hour from PRX. I'm Jenifer Hixson, and in this hour, we're hearing about Autonomy. Our final story is told by Brian Jeansonne. As soon as he begins, you may notice that Brian's voice is synthesized by a computer. Up on stage everyone in the audience could see that Brian's lips were not moving. That's because his story was written with his eyes. He will explain. Here's Brian, live in New York City.
[cheers and applause]
Brain: [00:33:33] Good evening, good people. My name is Brian. I happen to have ALS known as Lou Gehrig's disease, a very rare neurodegenerative disease, that affects less than 1 out of every 11000 people in the US. No need to fear. You are all safe. [audience laughter] I am the one in the room. You're welcome. [audience laughter]
Now, I am not much of a public speaker, and I am nervous AF. I literally feel like I can't move. [audience laughter] I'd like you to imagine a world with me before COVID. The year is 2019. It is a beautiful morning in September. I awake early and head to the gym. Following my workout, I lace up my running shoes and begin my morning run. On this day, it's just a short three miler. My pace is brisk as I run along Bayou St. John in the heart of New Orleans, the morning breeze cooling the beads of sweat rolling across my freshly shaven head.
At the one-mile mark, I notice something wrong with my gait. My left foot is not making its full stride, but instead is hitting the earth beneath me as it tries to make its way through. Eight months later, after more than a dozen doctors’ appointments and multiple MRIs in April 2020, exactly one month after COVID broke the world, we finally got an appointment with Dr. Edwards, a neuromuscular specialist. We arrived at his office.
There were no administrative staff, no nurses, no other patients. Dr. Edwards literally turned the lights on for us. After examining my body for about four minutes. He put his instruments down, placed his hand on my knee, looked me in the eyes and said, “Mr. Jeansonne, I am sorry, but this is ALS.” And then, told me I had two to five years to live. I was 43 years old.
As we left his office, I fell to the floor, feeling like a piling in the shaft of a pile driver. I had been smashed to dust. My wife, Christy, fell with me, held me and we wept in that corridor for what seemed like hours. Once we were able to get our legs back under us, we made the five-mile trek from the doctor's office to our home to see our kids, who at the time were ages 15, 14, 13, 11 and 8. I had just been handed a death sentence, and I felt as though my life was over.
It didn't take long for ALS to destroy my body.In just two years, I had lost the ability to walk, to talk, to eat, to move, to bathe myself. Actually, the bathing part excited me, because I knew that meant more showers with my wife. [audience laughter] However, when I realized, she was going to keep her clothes on, [audience laughter] it suddenly became less thrilling. [audience laughter]
I had lost all autonomy. Every morning, someone would give me an enema and return a few minutes later to wipe my butt. I could no longer hug my kids or squeeze my teenagers tightly when they would stand in front of me crying, because their life is difficult and I can't do anything. And a dad should be able to hug his own kids. I could not use my voice to tell them that I love them.
Before I lost my voice, I wore those three little words out on them, even making sure the last words I ever spoke were I love you to each kid and Christy. I could no longer enjoy my favorite foods, fried shrimp, po'boys or my mom's chicken and [unintelligible [00:37:36] gumbo. I couldn't smell or taste that delicious black coffee from my neighborhood coffee shop. I could no longer savor cigars or sip on a wonderful bourbon like Hancock reserve with my buddies. I could no longer smell the love of my life, or taste her kiss or make love to her the way she enjoys. I could hear my daughter in the backyard playing basketball, bounce, bounce, bounce. But I couldn't go out and play with her, like I could with her four older brothers before I got this awful disease.
So, as I was working through the grief of so much loss, I was still breathing really strong. And then, in October of 2022, I got the flu. We were out of town visiting a friend where I stayed in bed all weekend and high as a kite to keep me relaxed as I gasped for air. Upon our return home, on October 10th, 2022, I journaled “I am in a really dark place. I'm legitimately scared for the first time. I am fearful. Episodes like Thursday night and last night and this morning, I literally feel like this could be it, because I can't breathe. And then, I start sweating and then I am having a panic attack. And it's dark. This morning, I felt like tapping out, and that scares me.”
The next morning, I found myself in the back of an ambulance being rushed to the hospital, having no idea if I would ever return home, seriously wondering if I had just seen my kids for the last time. After being stabilized in the ER, I was transferred to the ICU. The next day, my favorite doctor and one of the most beautiful humans I have ever met, Dr. Kandro sat next to my bed and said, “Brian, we are at decision making time. We can either make you comfortable as you transition from this life to whatever is next, or we can do a tracheotomy in which you will live the rest of your life-on-life support. It will be incredibly difficult and very expensive, but you will still be here with us.”
I figure most people would say that is a no-brainer, but the truth is, 90% of ALS patients decide not to get trached. The reason being, this is a challenging way to live. You are basically a fully cognizant human being who is incapable of doing anything except thinking. So, when my doctor asked me the literal life or death decision-- I was hopped up on all kinds of drugs. I was ready to die. But in the midst of the pain and fear and chaos, I had a brief moment of clarity where I was fully in tune with my wife, my own soul and the oneness.
I whispered to myself, “Micah, Jonah, Nate, Lucas, Zoe Moon.” I looked at my amazing doctor and I said, “I have five kids at home who are waiting for me and I'm not done imparting myself to them. So, do whatever you have to do to keep me here.” That is the last thing I remember. I woke up 14 days later and asked Christy, “When is surgery?” And she replied, “Baby, it's done.” You are trached and you are back.”
Six months later, I am hanging out with my four teenage boys, a meeting we have together every Sunday night. We call ourselves, the diamond dogs. I am in my bed. The boys are situated around my room. One is in bed with me, two are on the sofa to my right and one is sitting in a chair at the foot of my bed. The room is dimly lit by a lamp with an Edison bulb in the corner.
Somehow, on this particular night, unprompted by me, the boys stumble into uncharted territory and start talking about how my disease is forming them in positive ways. This is one of those moments when you don’t know what is happening, but you do know that whatever it is, it sacred. Micah, 18, said, “I think ALS has made me more understanding towards what others are going through and it has brought me and you closer together.” Jonah 17, “ALS has taught us to cherish all the moments we spend together.” Nate 16, “ALS taught me how to deal with unrequited questions and how to embrace what may not be there tomorrow. It is also teaching me how to love what seems unlovable.” And Lucas 14, “ALS is helping me learn to be patient, and it's taught me maturity in a form that is important at my age.
They are teenagers. They know ALS means our time together will be shortened. And to hear them speak of their own formation in positive ways left me speechless. It was the most validating moment of my life that the way Christy and I chose to parent might actually work. I mean, who are these humans and how did I get to be the lucky guy that gets to spend part of my life with them? This was one singular point on the timeline of my life, when beauty showed her face in the midst of the chaos in the middle of the clusterfuck in the black burnt ashes. I am, however, a man who also values authenticity and balance.
So, a few weeks ago I chose to face one of my fears and ask my daughter the question. Remember, she was eight when I was diagnosed. She is 12 now. I was sitting in my chair as she stood in front of me. And with my computerized voice, I asked “Zoe Moon, can you think of any good things that have come into your life because of my ALS?” She thought for about 30 seconds. “Dad, I don't really remember life before ALS.”
As I began to weep, I was heartbroken to hear her say what I already suspected to be true, that my daughter would never remember a time when I didn't have ALS. She would not remember my hugs or our tickle fights. She would not remember all of the times we walked home from school together hand in hand. On the ever-growing list of things that life is teaching me is that even in this, I trust that something good will spring forth, because in the chaos, there is always something beautiful to be experienced.
Sometimes though, you might just have to hold on for dear life before you experience the beautiful. So, I hold on. I have now been living with this 20-pound black box on the back of my chair for almost two years. It is an incredibly difficult way to experience life. But I am here with my wife, my kids, my neighbors, my friends. In the life that ALS was determined to burn to the ground, there is beauty in love rising from the ashes all around. No matter where your life takes you, always remember, life is a beautiful clusterfuck and love is here. Thank you. Love.
[cheers and applause]
Jenifer: [00:45:28] That was Brian Jeansonne.
ALS stripped him of his neuromuscular capabilities, except for his eyes. The story you just heard was composed via Brian's eyes on a special computer. Although Brian's not able to move his body, his face is still very expressive. You can even see when he's laughing, which is often. On the flip side, when he's emotional, as he was in the story you just heard. Tears roll down his face.
We first met Brian at a StorySLAM in New Orleans, where he was born and raised and where he currently lives with his family. On social media, he, his wife and kids educate the public on ALS, and share their triumphs and struggles and lots of laughter.
Here's Brian's oldest son, Micah, sharing what it was like when they first got the news.
Micah: [00:46:19] It was clear there was something wrong with his leg. But nobody, no one, not even the doctors, [chuckles] were like, “This is serious.” Honestly, when they texted us onto the porch, it all hit us like a 18 wheeler. That was the first time I saw him-- Not the first time , but that was the-- I saw him cry like fear cry for the first time I think, and it was the worst thing in the world. And then, I think I asked if they could cut his leg off and he said, “No, it was in his spine.” And I was like, “Well, we can't take that out.” [laughs] But everything from then on, it's gotten easier. I don't know, it was that porch meeting that just the world was different.
Jenifer: [00:47:10] Before Brian lost the ability to speak, he recorded his voice and trained a computer to synthesize it. So, even though it is through a computer, we are hearing Brian's voice. I asked Brian if there was some magical muscle he built up when he was healthy that has helped him be so positive in the face of this disease, he sent me this answer.
Brain: [00:47:29] Not so much a muscle, but I had spent years paying attention to my inner life, and caring for it by spending time in silence and solitude and meditation. This, I believe, put me in a better position to navigate this disease.
Jenifer: [00:47:45] Brian's wife, Christy, shared some insight about how the family is able to manage.
Christy: [00:47:50] There's big things that we've gone through. So, we're a really good team. Katrina, our house was destroyed. We had to rebuild. We just took the same mentality when we chose. We chose to move forward. We chose to not just sit and cry. We cried when we needed to, but we just wanted our kids to see us pick up and go like, “We're going to keep moving. Things are going to look different. Things are going to be harder, but our family can do it.”
It's interesting in life how when the kids were toddlers and Brian's at work all day, and he knows when he walks in that door that I'm going to hand him a kid. He doesn't get off of work at 05:00, next job starts, me and daddy walking in that door. Well, for our kids, that's what happened to them. They would go to school, and then when they got home and walked in that door, they were hands on taking care of their dad. They never complained about that. Never.
Jenifer: [00:48:47] Finally, I asked Brian how his family is so good at savoring the good times when faced with so much loss.
Brain: [00:48:54] As parents, we have always encouraged and modeled for our kids to live in the present. Upon my diagnosis, we, as a family, decided that we would take some time to be scared and sad, but then we would get back to living and be present for whatever time we had left together.
Jenifer: [00:49:16] To see pictures of Brian and his family and to find out how to follow them, visit themoth.org. They’d love to hear from you.
I want to thank Brian and all the storytellers in this hour, each sharing the ways they work to stay true to themselves and others. 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: [00:49:48] This episode of The Moth Radio Hour Washington produced by me, Jay Allison and Jenifer Hixson, who also hosted and directed the stories in the show. Co producer was Viki Merrick, associate producer Emily Couch.
The rest of The Moth's leadership team include Sarah Haberman, Christina Norman, Sarah Austin Jenness, Meg Bowles, Kate Tellers, Marina Klutse, Lee Ann Gullie, Suzanne Rust, Brandon Grant, Sarah Jane Johnson, and Aldi Kaza. Our pitch came from Crystal Vega in Bellflower, California.
Moth stories are true, as remembered and affirmed by the storytellers. Our theme music is by The Drift. Other music in this hour from Stellwagen Symphonette, René Aubry, Erasmo Petringa, and Dan Romer and Ben Zeitlin. We receive funding 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.