I looked at him, and he looked at me, and I was startled.
And then he laughed, and I laughed. He’s the only person I had any contact with in the whole of the Soviet Union.
I realized this is why I came here—to find out how bad life gets.
And that even when it’s this bad, it’s still fuckin’ funny.
Six-time Emmy Award winner LOUIS C.K. is one of the most honest and respected comedic voices of his generation, finding success in both television and film as well as on the live stage. He is perhaps best known as executive producer, writer, director, editor, and star of FX’s Peabody Award–winning hit show Louie. His additional work includes writing, directing, and starring in Horace and Pete—a drama he directly distributed through his website—and serving as co-writer and producer on FX’s Baskets and Better Things. Throughout his career he has earned over thirty Emmy nominations and won five Comedy Awards, four Writers Guild Awards, two Critics Choice Television Awards, two Television Critics Association Awards, two Grammy Awards, and a Screen Actors Guild Award.
This story was told on May 12, 2015, at the Moth Ball at Capitale in New York City.
I was twenty-three years old when I had my first child. I was in labor for three days before my son, RJ, was born. So when I first laid eyes on him, I felt nothing but exhaustion.
I said, “This is it?”
It wasn’t until about an hour later, when I woke up, and he was in my arms, wrapped up, that I felt it—that rush of maternal love, that primal adoration.
And I thought, This is it. This is how the species survives.
I had another child, a daughter, Emma. And soon after Emma was born, their father and I divorced. He moved to Europe, and I raised the kids by myself.
Fast-forward. We’re living in Seattle. The kids are both in high school, and they’re doing great. They get straight A’s.
The only thing RJ gets in trouble for is wearing his hair long, because he goes to Catholic school, and you’re supposed to have your hair above your collar. But RJ plays the drums, he’s in theater, so he wears his hair long.
In the fall of his junior year, he’s cast as the lead in the school play. He’s going to be Atticus Finch in To Kill a Mockingbird, so he has to get his hair cut.
And I remember him walking out of the barbershop. He had a crew cut, and he was six feet tall and impossibly handsome.
He had this kind of shy smile, and I thought, This is the man he is becoming.
In January of his junior year, a cop showed up at our door, and he said, “Are you RJ’s mom?” I said yes.
He said, “There’s been an accident.”
I said, “Is he dead?”
And he said, “Not yet, but we have to get to the hospital right away.”
So the cop drove me to Harborview, which is not the closest hospital to our house, but it is the one with a trauma center. We went in the back way, where the ambulance bays are. Someone was hosing blood out of the back of the ambulance, all of this blood, and I remember thinking, That’s my son’s.
We walked in, and I saw RJ being wheeled away on a gurney just for a second, but I recognized his haircut.
It took a couple of hours for me to find out what had happened. RJ had been driving to his best friend’s. He had his seat belt on. He didn’t have any drugs or alcohol in his system, and he was hit from the side in a blind intersection.
He sustained a traumatic brain injury (or TBI), a number of broken bones, and he had broken his pelvis. At the time I didn’t understand the gravity of a TBI, so I was worried about his pelvis.
I was the vice president of an advertising agency that was owned by a global conglomerate of advertising agencies. They had just changed their insurance plan.
Keep in mind it’s the first week of January. So I don’t have a list of my benefits, what’s called a Summary Plan Description. What I have is an insurance card with a phone number on the back.
So while RJ’s in the ICU, I call the phone number, and the voice on the other end of the phone tells me, “ICU is covered, intensive brain-injury rehab is covered, skilled nursing facility…” And they list off all these great benefits.
And I remember thinking, Thank God I don’t have to worry about insurance. I’ve done everything right. I’m the vice president of a company.
When RJ was discharged from ICU, he was transferred to the rehab facility, and shortly after he got there, they called me on the phone and they said, “Your insurance company called and said RJ’s benefits are up on Friday.”
I said, “No, no, no, no, he’s got many more benefits,” but of course I just had a voice on the other end of the phone, I didn’t have the Summary Plan Description, and the facility had a different voice on the end of the phone.
So I went over there, and I said, “Where am I supposed to take him? He’s in a coma.”
They said, “Well, there’s always foster care.”
So Emma and I took RJ home. We made a hospital room in his bedroom. He had a PEG tube in his stomach, and that’s how we pumped in nutrition.
They taught us how to do physical therapy. Emma was fifteen, and she said, “Mom, I will help you take care of RJ in any way I can, as long as it doesn’t involve the Speedo zone.”
So when he needed to be changed, because of course he was in diapers, she would bring me a bucket of warm water and washcloths and put them by his door, and I would take them inside, close the door, and clean him up.
Coming out of a coma is nothing like what you see in the movies. It’s a long, slow, painstaking process. It took RJ months to learn how to hold up his head in a seated position. We put him in his wheelchair, and his friends would come by every day after school. The girls took to showing up in short skirts and fishnet stockings. They would walk in front of the wheelchair (and RJ would lift up his head).
Months had passed, and I still couldn’t get the Summary Plan Description. I kept calling them, and they’d be on the phone, and they’d be telling me my benefits, and I’d say, “You’re giving me information that you’re looking at. Give me, like, a screen grab of the computer screen that you’re looking at.” But they wouldn’t do it.
I realized this is not a bureaucratic mix-up, this is intentional, and this is illegal. It turns out that this is a violation of a law called ERISA—the Employee Retirement Income Security Act of 1974.
So I called an ERISA lawyer and told him the situation, and he said, “I can help you, but you’re going to have to give me a retainer of thirty thousand dollars.”
I said, “Let me be clear. I’m a single parent. I have paid to set up a hospital room in my house. I pay a nurse to sit with my son, so that I can go to my job, so that I stay employed, so I can keep this insurance. I don’t have thirty thousand dollars.”
And he said, “I’m sorry, I can’t help you.”
At this point I was completely exhausted, and I was very concerned about getting fired, because I’d taken so much time off. So I applied for and was granted FMLA leave—the Family Medical Leave Act says that you can take twelve weeks of unpaid leave to care for a sick family member and they have to keep your job for you.
Shortly into my FMLA leave, I was fired.
These things are illegal, but you can’t call the police on a corporation. And I couldn’t afford an attorney.
When RJ turned eighteen, he was able to go on Medicaid, and I made the decision to put him into a nursing home. I found a facility that specialized in patients with TBIs. They had a much younger population—a lot of young men who had been in motorcycle accidents. All their patients were on Medicaid, so they didn’t have much money. But they took really good care of RJ, and he continued to make slow progress.
He could do thumbs-up for yes, thumbs-down for no. We were visiting him, and Emma was teasing him, and he flipped her off, and I got really excited, ’cause that’s like some manual dexterity happening there, right? And then he turned to me and he put his hand down, because, brain injury notwithstanding, he was not ab
out to flip off his mother.
Before RJ’s accident I had to drag him to Mass on Sundays, but after the accident he loved to go to church.
I’d say, “Do you want to go to Mass today?” He’d put his thumbs up.
He learned how to be able to put money in the collection plate again. And when he learned how to swallow—because apparently swallowing is incredibly complex; that took like a year to come back—he could take Communion, and you could see that it provided him so much solace.
In August of 2005 RJ got very sick, and we thought it was the flu. He still had his PEG tube in his stomach, and it had fallen out. That happens, and when it falls out, you put it back in. And you’re supposed to X-ray to make sure you have it in the right place. Well, this facility couldn’t afford an X-ray machine, so they guessed, and they guessed wrong.
His food had been going into his abdominal cavity, and he had sepsis. At the hospital the surgeon took me aside, and she said, “I can operate on RJ, and I might save his life, but he’s going to go back into a deep coma, and he will never come out. Or you can let him go. You have to decide.”
So I went down the hall, and I called his father, who was still in Europe, and I said, “What should I do?”
He said, “You’re caring for him, it’s your choice.”
So I went into RJ’s room, and RJ was completely aware of what was happening, and he was afraid. His eyes were open really wide.
And I said, “Honey, you’re very sick, and they can’t fix you. So you’re gonna go to God.” I tried to think of who he knew that had already died, but he was nineteen.
So I thought of my dad, who died before RJ was born, and I said, “RJ, you’re gonna go to God, but my dad is there, and he’s gonna come and find you, and I will be there soon.”
It took RJ three days to die. It took him three days to come into the world, and three days to leave it.
People ask us how we cope. Emma has been an EMT, a volunteer firefighter. She works in an emergency room that is a trauma center, and she’s applying to nursing school.
My friends saw what happened, and they started a nonprofit to help people who are fighting with their insurance company for covered benefits, even if they don’t have enough money for a retainer. I’m the chair of the board, we have ERISA lawyers, and they’re very good at what they do.
RJ would be twenty-seven years old. I still have that strong maternal love for him. The challenge now is to channel it, so it doesn’t become corrosive. So that I don’t say things to myself like, Why didn’t you keep him at home? Or, If you had made more money, you could’ve afforded to put him in a private nursing home, and then he never would’ve died.
Most days I wake up, and the world is so diminished without him in it, it’s like there’s been a total eclipse of the sun. Only I’m the only one who can see it, and I know the light is never coming back.
But there are days where I wonder if RJ’s existence isn’t part of a larger narrative arc than I can understand. If maybe this slice in time was how RJ had to work out his destiny, and maybe my job was to walk with him.
Between the time of RJ’s accident and his death, he wasn’t able to speak; he was only able to say a handful of words. And the word he said most was “Mom.”
And there are times now where I feel RJ. I feel that he is. And in those moments I know it’s his turn, for his love to carry me.
STEPHANIE PEIROLO serves as chair of the board of directors of the Health Care Rights Initiative, a nonprofit providing advocacy and navigation services for patients and caregivers. She works in Seattle as a business consultant and is the author of the novel Radio Silence. She’s a graduate of Stanford University and has an MA in transformational leadership from Seattle University. Her daughter Emma is now an RN who works in emergency medicine at a trauma center.
This story was told on December 3, 2013, at the Neptune Theatre in Seattle. The theme of the evening was Take Me Out. Director: Maggie Cino.
It’s November 2011, and I am the most controversial parent in America by virtue of a short, obscene, fake children’s book by the name of Go the Fuck to Sleep.
It’s fourteen stanzas long—about four hundred words, many of them repeated more than once—and I wrote it in thirty-nine minutes with no pants on.
Now, I’m a literary novelist by trade, so the manner in which this particular creation of mine ascended into the zeitgeist was perplexing to say the least. All I was trying to do in this book was simply capture the interior monologue of a parent attempting to put a small child to bed.
My daughter, Vivien—my beautiful, brilliant, amazing daughter, Vivien—was two and a half at the time, and sleeping was not high on her list of priorities. I would sometimes be in her room for two, two and a half hours.
This gets tedious after a while.
And I just wanted to capture the paradox that on one hand you can love a kid to death, and on the other hand be so desperate to get out of that room after the first hour that, you know, if Don Corleone walked in the room and was like, “I’ll put the child to bed, but you may have to do a service for me one day, and this day may never come,…” you’d be like, “Whatever, Don Corleone, just take this baby. We’ll work the details out later.”
So I read the book for the first time in public at a museum in Philadelphia, in late April, six months before the book was supposed to be published. It was part of an evening of ten-minute performances. There were about fifty of them, and I went on last, after a ninety-four-year-old tap dancer. And you really never want to follow a ninety-four-year-old, you know what I mean? Not on the highway, not onstage—just never.
I get up there, and I read the book to two hundred people, and the response is good, but I don’t think much of it.
I go home, I go to sleep, and when I wake up the next morning, Go the Fuck to Sleep is ranked 125th on Amazon.
Now, as a literary writer, I didn’t even know they made numbers that low. And by the end of the week, the book has shot up to number one.
I don’t want to get overly technical here, but the book does not exist. And is not going to exist for some months. So we very quickly rush it toward production, with the hope of getting it out into the world by Father’s Day.
Meanwhile, however, a PDF of the book leaks and starts ricocheting around the Internet, and lands in hundreds of thousands of people’s mailboxes.
We had put this PDF together because we wanted to send it to booksellers. We thought it might be something of an uphill battle getting them to stock, much less support, a book called Go the Fuck to Sleep.
So hundreds of thousands of people are getting the book for free, and we’re panicking. We’re thinking that we’re not gonna sell a single book.
Luckily for us, it’s bad form to show up at a baby shower with a low-resolution, stapled-together PDF that you printed out off the Internet and be like, “Here, we love you so much, it’s such a wonderful time in your life.”
But things start going crazy. I notice that a woman in Australia has posted the entire book as a Facebook album, and all this traffic is going to her Facebook page.
So I write her an e-mail, and I’m like, “Thank you for your enthusiasm, but the book hasn’t come out yet. We’d like to sell a couple of books when it does eventually get published. So please take this down.”
And she said, “I’ll take it down if you want, but I want you to know that seven hundred people have contacted me since yesterday asking where they can buy the book, and I’m sending them to Amazon.”
I’m like, “Please. Ignore my previous e-mail.”
So we weather the storm, and the book comes out, and it debuts at number one on the New York Times Best Seller list. Samuel Jackson reads the audio book, probably his best work since Pulp Fiction.
And all of this craziness is just unending. There’s a group called Family First New Zealand that wants to ban the book. Their press release was amazing. I have it framed in my office. It said, “While this book may be harmless, and ev
en amusing, in the hands of normal, well-adjusted parents, it could pose a real danger to children in the hands of maladjusted, dysfunctional parents.”
The same, of course, could be said of, like, a spoon.
They didn’t really catch much momentum on the boycott.
But the weirdest thing of all for me is that I’m thrown into a crisis, because suddenly—and inexplicably—I’m being positioned as a parenting expert. I’m getting e-mails from people thanking me for saving their marriages, and from therapists saying they bought the book in bulk and handed it out to their freaked-out young-parent clients. And also from people who are furious and irate and saying things like, “I would never read this book to a child.”
It would take a very specific blend of literacy and illiteracy to mistakenly read this book to a child. I mean, it does say “Fuck” on the cover.
At the time the publishing industry is in free fall, my visiting professorship has just ended, and I’m on my way back to California and my mortgage. So I feel like I have to ride the gravy train, and if I’m gonna be a fake parenting expert and feed my family, that was fine with me. I’d do it.
But because all of the publicity and the rigmarole around this book, I’m actually not spending much time at all with my child. So not only do I feel like I’m not a parenting expert, I feel like I might not even be a decent parent. I’m on the road all the time. When I am home, I’m on the phone eight, ten hours a day, answering the same five questions from media around the world.
So that was my state of mind when I was asked to host a fund-raiser for Boston Children’s Hospital that was being held in Los Angeles, counterintuitively. They offered to fly me and my family to Los Angeles for the weekend, and put us up in a hotel where John Wayne had once kept a cow. They were gonna give away copies of the book, and all I had to do was shake hands and sign books and imbibe alcoholic beverages.
The Moth Presents All These Wonders Page 9
