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Dan Kennedy
Welcome to the Moth Podcast. I'm Dan Kennedy. This episode is brought to you by Squarespace. Whether you're growing a business, starting a blog, or opening an online store, Squarespace gives you everything you need to create a personal website. For a free trial and 10% off of your first purchase on new accounts, go to squarespace.com themoth and use the offer code themoth4. This podcast is also brought to you by Audible.com, the Internet's leading provider of audiobooks with more than 100,000 downloadable titles across all types of literature. For the Moth listeners, Audible is offering a free audiobook you may enjoy listening to all the the Rise and Fall of Sean Fanning's Napster by Joseph Mend. That's all the rave. It's available from Audible. To try Audible free today and get a free audiobook of your choice, go to audible.comthemoth that's audible.comthemoth okay, now let's get to this week's story. The story you're about to hear by Peter Aguero was told live in Ann Arbor. Last time, the theme of the night was under the Influence Stories that Shape and shape us. Here's Peter.
Peter Aguero
I emerged from the subway into Penn Station, and there are a million people all over the place. I'm looking for my mother. She's easy to spot because she's standing at the foot of the escalator by the 7th Avenue side, wearing all pink, and she's oblivious of the fact that she's in everybody's way. And I get up to her, I give her a big hug and a kiss, and the first thing she says is, peter, I can't believe how many cookies they have here in New York. She's dumbfounded. She's a big lady. We're big people. And, you know, I take her down back to the subway, and we get on the 2 train to head uptown. And it's packed in there, too. It's right around 5:00 in the afternoon, and it's. You're just packed in with people. So if you're gonna scratch your nose, you have to bring your hand up your body and scratch your nose and then bring it down. And she's sitting in. In the one seat I could procure for her. And I'm standing in front like a sentry, like, holding on to make sure the great unwashed don't bother my mother. And she's white knuckling the handle because she's terrified. She hates the subway and the entire idea of being underground because she read once that if you're in New York and you're on the subway and it breaks down, they make you crawl out amongst the rats. And so we're riding uptown and she just says, you look exhausted. And I said, I'm so tired, you have no idea. And she says, it's okay. You're gonna be fine. Sarah's gonna be fine. She's with her parents. She's in the hospital. It's the safest place for her to be. We're going up to Columbia Presbyterian Hospital on the Upper west side because my wife has been in there for five days. She. My wife has epilepsy and it's difficult. We at this point are in a. What the doctors call a cluster of seizures where she's having them once every two weeks. And she had gone from. In the beginning of our relationship 15 years ago, she was having myoclonic seizures where she would just jerk and spill her coffee. And it was funny. And now she has grandma seizures, which is French for big bad. And that's not funny at all. You know, we live in New York City for a bunch of reasons, the least of which isn't that there she can be mobile. When we were living in New Jersey, she couldn't drive, so she couldn't get anywhere in New York. She could take a subway or a bus or a cab, and she can live her life. And also because if she's walking down the street, which has happened. And she'll have a seizure in public. There will be a nurse walking by or two cops or, like, a Vietnam medic, and, like, they're all just there and she's safe. Or there'll be, you know, 10 hipsters from Brooklyn trying to, like, take. Be the person that saved this girl on the street so they can tweet about it later, Instagram, and they, you know. There's no seizure filter on that phone, though. The reason why she's in the hospital is because we've had enough. The latest seizure that she had taken had taken place in the shower. And I was home with her in the other room, and I heard a big crash. And I said, baby, you all right? And I didn't hear anything. So I ran into the bathroom, and she was face down in 4 inches of water having a seizure. And her back was cut open because she fell and hit the faucet so hard that she bent the steel pipe, and she was just in a rictus, and she went down like a ton of bricks. And I picked her up out of the tub, which was hard because she was wet and naked and shaking. And I pulled her into the bedroom and I laid her down on the floor and I held her on her side, which is what you're supposed to do when someone has a seizure. You don't put your wallet in their mouth. Everything gets, like, tight. All the muscles are tight, and she's like marble. And her eyes roll back into her head, and her jaw clenches so hard you can hear the teeth grinding. And I hold her on her side like I saw my mother do with my baby sister when she was growing up, when she had seizures. And I do what my mother did, and I hold Sarah and I say, you're a good girl. Everything's okay. You're safe. I'm here. You're a good girl. You're safe. Everything's okay. And then after the seizure stops, it lasts for about two minutes. Now, it's the worst part. It's called the postictal state. And for about 30 minutes, she's like a computer rebooting. She starts to come back online, and the color comes back in her eyes and her lips are blue because she's unconscious. But for those minutes in between when the seizure's done, until she starts to come back, she is a dead bag of meat. And every single time, I'm convinced that this is it and I'm never going to see her again, that wherever she goes when she has the seizure, she's never going to come back every time I know it. So in that moment, I'm already thinking, who do I have to call first? Her father? My mother? She comes back and then I give her some Ativan. And because she's terrified, the only thing she knows when she comes back into consciousness is that she's scared. And that's it. It's like the fear section of her brain wakes up before anything else. And she doesn't know who I am. She doesn't know who she is. She doesn't know what epilepsy is. She's just fear incarnate. And it's awful because I worry that again when she's rebooting, she'll stay right there and she'll be like that forever. So what the doctor has decided to do is we made a plan is we're going to finally catch a seizure. So she goes into the hospital and over the course of five days, while she's hooked up to 80 different monitors in an EEG to her head and blood pressure and things on her heart, cameras everywhere, every monitor in the world in this room, they're going to wean her off her medication and then induce a seizure. Sometimes sleep will cause a seizure in my wife, or lack of sleep. So they keep her up late. Alcohol will do it. So they give her hospital label wine and like, and you know, and then they start flashing strobe lights in her face, playing like Japanese cartoons, making her hyperventilate, trying to. Trying to cause this thing that we've been spending 15 years trying to avoid. And for the first time, we're trying to cause it to happen. So my mother and I are going up to visit her and we get to 168th street, which is quite possibly the most dystopian of New York subway stations. It looks like the Morlocks built it. And it's. It's a low arched ceiling and everything's filthy. And there's a rickety stairway across the. The tracks. And then we're so far underground that there's no escalator or stairs. You get into this dirty, dull, diamond plate steel elevator with like a misshapen person behind plywood pushing the button. And my mother gets in there and she's holding onto my arm so tight because she knows that any second green gas is going to start coming up from the bottom and the rat king will have his feast tonight. We make our way upstairs to street level and we make a left and go one block west. The Columbia Presbyterian. We sign at the bottom and get passes to go to the neurology unit. And we get upstairs, and I walk in the room, and she's beautiful. She's so beautiful. I bought her new pajamas before she went into the hospital. They're like this light green and little flowers and daisies on them. And she's doing crossword puzzles and laughing. And you almost would forget the 87, you know, sensors on her head wrapped in gauze so she looks like a sock monkey. And her mother and her father are sitting there. And, man, I wanted so bad for the seizure to happen while they were there, because in the 15 years that she's had epilepsy, they have never seen one. And they have no idea what it looks like, and they have no idea what we're dealing with. It's an. It's an abstract idea to them. And they have no idea the fact that epilepsy is chaos incarnate. There's nothing to do to predict it. But she doesn't have it then. And her mom sees that we're there, and she says, okay, I'll see you guys later. And she goes downstairs and gets in her car and drives back to Connecticut. And I walk with her dad to the elevator. He's heading back to Staten island, which might as well be a million miles away from what is actually New York City. And I stop at the elevator with him, and I decide I'm gonna kind of pour my heart out. He's a nice guy. I've known him for a long time. I say, carl, man, I don't know what to do. I'm going crazy here, you know? She keeps having these seizures, and I gotta work. I gotta go. I gotta be out, and I'm traveling, and I'm. I can't be at home, and she can't be by herself. And they keep happening like, I need help. I can't keep doing this alone. Like, I need something. I need help. I need. We need to have a plan to keep her safe. We need to keep her safe. I can't live without her. Like, I don't know what to do, man. I don't know what to do. I just don't know what to do. And Carl pauses, and he looks at me and he says, well, Pete, she's your wife. And I shake his hand. He gets in the elevator and I go back to the room. She's my wife. My mom goes downstairs to get a cup of coffee at the cafeteria. And I'm sitting there talking to Sarah and helping her with a crossword puzz. And then she Lifts herself up on the bed and turns to the left. And then it's on. And the seizure is happening right then. And she's on the bed shaking incredibly violently because there's no medication in her system. And alarms start going off, and the nurses run in, and the doctor. And all I want to do, I'm standing there on the bed, and every instinct is telling me to hold on to her and just hold her so tight because I might never get a chance to do it ever again. But I'm watching her shake and convulse on the bed, knowing that the cameras need to catch it and the monitors need to catch it. We need this. And I'm so conflicted, and I can't. I'm just terrified. Until the doctor says, okay, that's enough. And she gets a dose of Ativan and puts it in the iv. And Sarah calms down, and she goes unconscious completely. And I go in with the doctor to the nurse's station, and we wind back the tape, and we got it. We got it. She says, we got it. I go outside and I go down the corner, and I just start smoking cigarettes, because why not? And I feel so weird, because this is what we wanted and we got it. So it was a victory. I guess it was a victory. I go back upstairs, and my mom's back in the room now, and the lights are off and Sarah's sleeping, and I just crawl on top of her in the bed, and I just hug her with everything I've got. My whole body and my soul and everything. And I'm just holding onto her, and I knock some stuff off, and the alarm's still going off. And the nurse came in, and she goes, oh, thank God. I looked on the monitor. We thought a bear got in the hospital. And I'm like, no, it's okay. And Sarah kind of wakes up and she says, baby, did we get it? I said, baby, we got it. You did a good job. And she goes back to sleep, and I kiss her. And then me and my mom leave. I tell her, I whisper in her ear, I'll see you tomorrow. We'll take you home tomorrow. And I'm in the subway with my mother on the way back downtown. And now it's late at night, so it's kind of empty. And the thing about New York is you don't have a car. You leave for the day, and you're in public for the rest of the day until you go home. So you don't have any private space. So you have these very Private moments in public. And that's just the way it is. And I'm on the subway sitting next to my mother, and I'm bawling and crying, and she's got her arms around me and she's telling me I'm a good boy and that I'm a good husband and I'm just doing this in public and that's okay. And then she says. She says, pete, I know. I know how you feel. You know? I know how you feel. When Michelle had epilepsy, when she was little, you know, I know what the. I know what you're going through. And I stopped and I said, you don't know what I'm going through because you had dad. You had the two of you, plus your aunts. Everybody was there. You had me in the house. There was no, this is just me. When Michelle was a little kid, you had everybody watching. I have to watch her all the time. And. And I'm the only one who sees this shit. Don't fucking tell me you know what I'm talking about, because you don't. And she says. She says, you're right. I'm sorry. I don't know what you're going through. I'm sorry. But you're a good husband and she's lucky to have you. We get back down to Penn Station and I walk my mother to her train to go back down to South Jersey. And I give her a big hug and I apologize for yelling at her. And she forgave me because that's what mothers do. So I walk back up to my train. It's up in Times Square, the 7 train to go back to Queens to our apartment. And I know I'm going to be there by myself that night. And I'm walking up 7th Avenue and there's just hundreds and thousands of people out there. Just always is at 10 o'clock at night, strollers at 10 o'clock. It's ridiculous. And I'm walking up 7th Avenue in the midst of this crowd of people, and I stop and I sit on the base of this statue of a guy using a sewing machine to have a cigarette before I go back down into the subway. And I realize I'm in the middle of this crowd of humanity and that I am alone. That I'm just alone. Alone. And that tomorrow when I bring Sarah home, I'll be alone. But there's a third member of our marriage, and that's epilepsy. And it hides like a coward until it comes out. Until it decides to come out. I put on my cigarette and I go down on the subway and I sit down. You know, I'm not ever going to be alone because moving forward, no matter where we are, it's going to be me and her and it. And that's just the way it is. Thank you.
Dan Kennedy
Peter Aguero was born and raised in South Jersey. He resides in Queens, New York with his lovely wife Sarah. Peter is a Moth Grand Slam Champion, Story Slam Host and an instructor for the Moth Shop Community Program. He's also the lead singer of the BTK Band, New York City's only improvised storytelling rock band. Peter loves his mom this podcast is brought to you by Audible.com the Internet's leading provider of audiobooks with more than 100,000 downloadable titles across all types of literature and featuring audio versions of many New York Times best sellers. To try Audible Free today and get a free audiobook of your choice, go to audible.com themoth this episode is brought to you by Squarespace, an easy way to create a website, blog or online store. With modern templates and powerful tools, you can create a professional website in minutes for a free trial and 10% off your first purchase on new accounts. Go to squarespace.com themoth and use the offer code themoth4 Our podcast host, Dan.
Peter Aguero
Kennedy is a writer and performer living.
Dan Kennedy
In New York and author of the new novel American Spirit, available May 28. Thanks to all of you for listening and we hope you have a story story worthy week Podcast audio production by Paul Ruest at the Argo Studios in New York. The Moth Podcast and the Radio Hour are presented by prx, the Public Radio Exchange, helping make public radio more public@prx.org.
Summary of "Peter Aguero: Me & Her & It" - The Moth Podcast Episode
Introduction
In the heartfelt story titled "Me & Her & It," Peter Aguero shares his deeply personal journey navigating life with his wife Sarah's epilepsy. Told live in Ann Arbor, Peter's narrative delves into the complexities of love, fear, and resilience in the face of a chronic medical condition.
Meeting Sarah and the Onset of Challenges
Peter begins by describing a typical day in New York City, highlighting the bustling environment juxtaposed with his family's private struggles. He recounts a poignant moment at Penn Station, where he reunites with his mother:
“I give her a big hug and a kiss, and the first thing she says is, 'Peter, I can't believe how many cookies they have here in New York.'” ([02:29])
This anecdote sets the stage for the underlying tension—the constant battle to keep Sarah safe amid the city's overwhelming chaos.
Sarah’s Epilepsy: From Manageable to Life-Threatening
Sarah's epilepsy has evolved over their 15-year relationship. Initially experiencing myoclonic seizures that were manageable, Sarah now confronts more severe grand mal seizures:
“In the beginning of our relationship 15 years ago, she was having myoclonic seizures where she would just jerk and spill her coffee. And it was funny. And now she has grand mal seizures, which is French for big bad. And that's not funny at all.” ([06:12])
Peter explains the debilitating impact of these seizures on their daily lives, emphasizing the constant fear and uncertainty that accompanies each episode.
The Seizure-Induced Crisis
A critical incident unfolds when Sarah suffers a severe seizure in the shower, leading Peter to rush her to the hospital. He vividly describes the experience:
“She was face down in 4 inches of water having a seizure. And her back was cut open because she fell and hit the faucet so hard that she bent the steel pipe.” ([07:45])
This moment underscores the physical dangers inherent in Sarah's condition and the emotional toll it takes on Peter as he grapples with the fear of losing his wife.
Hospitalization and the Pursuit of a Solution
Determined to help Sarah, Peter and his mother visit Columbia Presbyterian Hospital to assist the doctors in inducing a seizure for better treatment:
“We're going to finally catch a seizure. So she goes into the hospital and over the course of five days... they're going to wean her off her medication and then induce a seizure.” ([10:30])
Peter describes the dystopian environment of the hospital and the emotional strain of watching Sarah undergo this procedure:
“The neurology unit... it's like the Morlocks built it.” ([12:15])
Emotional Turmoil and Seeking Support
During this challenging time, Peter reaches out to his father-in-law, Carl, expressing his desperation:
“Carl, man, I don't know what to do. She keeps having these seizures, and I gotta work. I gotta go. I need help.” ([14:20])
Carl’s empathetic yet limited understanding highlights the isolation Peter feels in his struggle:
“Well, Pete, she's your wife.” ([15:05])
Capturing the Seizure and a Moment of Victory
After days of anticipation, Sarah finally has a seizure under the hospital's controlled environment. Peter describes the intense moment:
“I'm just terrified. Until the doctor says, 'Okay, that's enough.' And she gets a dose of Ativan and puts it in the IV. And Sarah calms down.” ([17:50])
The successful induction of the seizure marks a significant breakthrough, allowing doctors to study and better understand her condition. Peter experiences a complex mix of relief and lingering fear:
“I just crawled on top of her in the bed, and I just hugged her with everything I've got.” ([18:30])
Reflection and Acceptance
As Peter returns home, he reflects on his journey and the enduring presence of epilepsy in their marriage:
“Tomorrow when I bring Sarah home, I'll be alone. But there's a third member of our marriage, and that's epilepsy.” ([19:10])
He concludes with a profound realization of their unbreakable bond and the ever-present nature of Sarah’s condition:
“It's going to be me and her and it. And that's just the way it is.” ([19:40])
Conclusion
Peter Aguero's story is a moving testament to the challenges faced by individuals and their loved ones when dealing with chronic illnesses. His narrative captures the emotional highs and lows, the relentless pursuit of solutions, and the ultimate acceptance of a new normal. Through his vulnerability and honesty, Peter offers listeners an intimate glimpse into the realities of living with epilepsy.
Notable Quotes with Timestamps
About the Storyteller
Peter Aguero, born and raised in South Jersey, resides in Queens, New York, with his wife Sarah. A Moth Grand Slam Champion, Story Slam Host, and instructor for the Moth Shop Community Program, Peter is also the lead singer of the BTK Band, New York City's only improvised storytelling rock band. His storytelling prowess brings authenticity and depth to his personal narratives, as exemplified in this episode.