Host: Catherine Burns
[Uncanny Valley theme music by The Drift playing]
Catherine: [00:00:12] From PRX, this is The Moth Radio Hour. I'm Catherine Burns from The Moth, and I'll be your host this time. This week, we'll have three true stories told live. The rapper Foxy Brown threatens to kick the butt of the editor in chief of Vibe magazine. A mother deals with massive amounts of red tape while caring for her critically injured teenage son. And this story from Moth regular Jenny Allen. [cheers and applause] She told it at The Great Hall at Cooper Union in New York City. The theme was “What went wrong?” Here's Jenny, live at The Moth.
[cheers and applause]
Jenny: [00:00:51] So, a few years ago I was diagnosed with cancer and about five minutes later I had to start chemotherapy. Now, when you have the chemotherapy I had, you lose your hair. Now, in one way, this seemed like such a small price to pay, my hair, my life, my hair, my life. I don't know, I think I'll pick my life. And I was kind of hoping that after my hair fell out and grew back, I'd get better hair. [audience chuckle] I have this unruly hair and it has a mind of its own. But no matter how I felt about losing my hair, just the prospect of not having any forced me to reconsider my whole sense of my personal style and in a way, my whole sense of myself.
What kind of cancer person was I going to be? Like, how would I wear my disease? Would I try to hide it? Or would I announce it to the whole world? In other words, was I going to be a scarf person or a wig person? [audience chuckle] Because it seemed to me that if I showed up places suddenly wearing a scarf all the time, people would know it was because I'd gone bald and they would probably guess why. But if I showed up wearing a wig, even the people who could tell it was a wig would probably assume that I was wearing it because I didn't want to talk that much about why. If I wore a wig, I'd be saying to everybody, please just let me blend in.
So, I had this dilemma whether to wear a scarf or a wig, blend in or not blend in. So, I thought about it. And I thought that my truer self would wear a scarf because I have a lot of self-righteous integrity. [audience laughter] And I thought a wig would be dishonest and I wasn't ashamed of my disease. So, one night I ran into my friend, Ruth. Now, I had met Ruth originally because she was my dentist and she was a wonderful dentist, very kind and generous and understanding about those of us who showed up needing root canal because we had failed to floss in our 20s. And she used to say, “Oh, you know, Jenny, in terms of evolution, our teeth are only supposed to last us about 45 years, so you are doing great.” [audience laughter]
And she'd become my friend, and our kids had become friends, and they even went to the same school because she'd recommended it for mine. And by some horrible coincidence, she and I both had the same cancer. Only she was way much farther down the chemo path than I was and had already lost her hair. So, I'd seen her a few weeks earlier just wearing a scarf. And I was very surprised when I ran into her at a school play. And there she was with just all her old hair back, this big corona of dark, curly hair. And I said to her, “Ruth, I love your hair.” And she said, “It's a wig.” I never thought I'd wear a wig, but, you know, it's kind of nice when you go out. It's a little dressy. [audience laughter] It's kind of creepy, but it's dressy.” [audience laughter]
And I looked at her head, and I actually I could tell that it was a wig if I looked really closely. But I thought, it looks very nice. And I thought, well, “If Ruth can feel good in a wig, then maybe I could too,” which seemed unlikely but possible. So, I thought about it, and I thought maybe I should just consider it. Just consider wearing a wig. So, then Ruth said to me, “Jenny, you should get one. Medical insurance pays for the whole thing.” [audience laughter] And this seemed so bizarre as to be almost unbelievable and really reason enough to get a wig. [audience laughter]
And I love free things particularly when my insurance company pays for them. And I found out that wigs cost hundreds and hundreds of dollars. So, this seemed like the ultimate freebie. It was like a great swag, even if it was cancer swag. [audience laughter] So, a couple of weeks go by and my hair does fall out. Now it didn't just fall out all at once. It gradually gave up the ghost, first in these strands in my brush and then in clumps in my shower drain that made me think that there was a dead mouse down there. And every time I looked in the mirror, my baldness told me how sick I was. Even in spite of all this optimism and cheerfulness that I was sort of summoning and I wasn't completely bald.
I had these sad wisps of hair here and there that somehow just made it worse. My head seemed to be saying to me, “Hello, sickie. Hello, sick person with cancer.” And every time I went out in my scarves, my head felt very exposed, very uncomfortable. And I thought people were looking at me. And they would ask me questions like how I was doing and how my cancer was going, how my chemo was going. And I felt I didn't like it. And I didn't like it when they looked at me as if they were about to cry. So, I thought, “Well, maybe I'll go to the store and get a wig. So, I did. I went to a wig store right near Columbus Avenue, and it was called Bitz-n-Pieces. [audience laughter] It was.
And my wig fitter was a French man. And he said, “What do you want?” And I said, “I want a wig.” And he said, “What kind of hair?” And I said, “I don't know. How many kinds do you have?” And he said, “Well, he explained to me that they had synthetic wigs. They had wigs made from the hair of Indian women, and they had wigs made from the hair of Caucasian European women.” Now, the synthetic wigs were the cheapest, and the Indian hair wigs were in the middle range. They were about $800 to $900. And then the wigs made from the hair of Caucasian European women were $4000 to $5,000. Now, I thought, even if my insurance company paid for this, it's just obscene to spend this kind of money on a wig. And why is the hair of Caucasian European women four times as expensive as the hair of Indian women? It was so racist. [audience laughter]
So, I decided to go with the Indian women's hair, even though I felt very uncomfortable knowing they'd been paid about 22 cents to have it shorn from their heads. So, I took my wig home, the wig fitter, put it in a big paper bag, and inside the paper bag was a Styrofoam head with the wig on it. And I took the bag home, and when I got home, I took the Styrofoam head with the wig on it, and I put it in a corner of my bedroom just to wait until the occasion that might possibly happen when I might want to wear my wig-- might consider wearing my wig. And it was very unsettling to look at it over there.
Sometimes, I felt like my wig head, which was so well groomed, was condescending to me a little. [laughter] [chuckles] So, I'm feeling very bad about this scarf look meanwhile, that I've been adopting, but I can't quite bring myself to put the wig on. It seems like a lot of trouble, but then I just start to feel worse and worse about my whole look, my whole uniform of these scarves that I'm wearing and these bandanas. And I start thinking I look like a lady pirate or one of those very, very ancient old ladies who's pushing her groceries cart down Broadway. But I still can't quite bring myself to wear the wig. It seems like a lot of trouble. And then one day I realized that my eyebrows have fallen out. And for some reason, this is completely unexpected by me and makes me feel surprisingly sorry for myself. Having no eyebrows makes me feel very naked, very vulnerable, very exposed.
My hair was part of my head, but my eyebrows were part of my face. I look like a big baby. And every time I look in the mirror and I see the baby, I feel so bad for her that I want to cry. And I decide I need more of a buffer between me and the rest of the world. I'm tired of people asking me about my disease. Even though I've said it all up and I'm tired of them looking at me like I'm about to cry. I'm ready for my wig. Well, I'm ready to try thinking about wearing my wig. So, it turns out that my friend Martha, her daughter Anna, is about to graduate from the University of Chicago. And I decide, this might be the perfect occasion to wear my wig. It's a nice, grown-up occasion. It's a big event.
And so, I go to Chicago and I bring my wig. In the morning of the ceremony, I get up and I put my wig on my head. I first I comb it and brush it, and then I fit it carefully to my head and I start walking toward the graduation along with these throngs of other parents and grandparents and friends. And right away, as soon as I start walking, I know that I should have been practicing wearing my wig all these weeks. First in my bedroom, maybe, and then around my neighborhood. Because every time I look in a store window, I recognize myself, but I look like I'm in disguise. I feel like I've done something really bad, like robbed a bank. And now I'm trying to just kind of lose myself in the crowd by going incognito in my wig.
And I'm very self-conscious about the wig itself. I keep tugging at it and fussing with it and imagining that there are these strands of hair coming out, even though there aren't. This wig is just a stranger to me and I'm uncomfortable having it in my personal space. Now someone at the graduation, at the ceremony, before the ceremony starts, is selling sun hats. And this is a very smart person. They've realized that some of us women there haven't put it together that we're going to be spending about four hours in the scorching Chicago sun, and we might not want to get sunburned.
So, I buy one of the hats, just in part so I won't get sunburned, but really, because I think the hat is going to cover up my wig and make me feel much less self-conscious. So, I put the hat on over my wig, and I take my place on this ocean of folding chairs and the ceremony starts. And it goes on. It goes on and on. By the second hour or so, my head is just baking under my wig and my hat. It feels really more like it's just broiling in there. [audience laughter] And these little rivulets of sweat are coming down from underneath my wig onto my neck, and that makes the wig really itch. And the wig itself is so hot and heavy on my head, it feels like I'm wearing my cat on my head. [audience laughter]
And I feel like my head is suffocating in there. It is just so, so very, very hot under my wig and my hat. And I think, “God almighty, if I could just take off my hat, maybe my wig could just breathe a little.” So, I whip off my hat, and in one of those really free fall, slow motion moments, [audience laughter] one of those moments that is just at the same time like a dream and the realest thing that has ever happened to you, [audience laughter] my wig comes off with my hat. And it is so embarrassing that I can't even be embarrassed, [audience laughter] because embarrassment can't even cover it. [audience laughter] I mean, I've lost everything. My hat, my wig, my hair. And I feel strangely free. [audience chuckle] You know, it seems funny.
And I start to laugh because it's so funny that I've gone to all this trouble only to end up like this. [audience laughter] I feel like I'm in a great Lucy episode. [audience laughter] But I take my wig and my hat and I put them back on my head, really, for decorum's sake. [audience laughter] I feel so bad for the people behind me. I can't even look at them. [audience laughter] And I sit through the rest of the ceremony, and then I go back to New York and I take my wig and I put it in a plastic bag, and then I put it way in the back of one of my dresser drawers so I won't ever have to look at it. And I go back to wearing my scarves and bandanas until my hair grows back in, which it does, by the way.
It's just the same old hair, but for the first time, I'm glad to see it. And Ruth's hair grows back, too. And for two years, we have just a lot of fun doing the normal things we like to do, like worrying endlessly about our children and eating the delicious food that she cooks at her house and telling our cancer stories. She really likes my wig story. And I love it when she does this version of something that happens to you a lot when you have cancer, although I really don't know why. And it's when people come up to you and tell you an inspiring story of their aunt or their grandmother who had terrible cancer, and then it went into remission and she went out and got her PhD or she took up parasailing and she had a whole new life.
And at the end of these stories, you always ask the people, “How is she doing?” And they always say, “Oh, she died.” [audience laughter] And I say to Ruth, “Do it again, Ruth. Tell the inspiring people's story again.” [audience laughter] We crack each other up with our story stories. And then Ruth's cancer comes back. And after a long time, she dies. And I miss her so much. And in the light of this loss and other losses one of my editors dies, women I meet in various doctors waiting rooms, die. Getting rid of my wig seems so cocky, who am I to say that I'm done with my disease? Who am I to say that there's never going to be an occasion where I might consider wearing that wig again?
And then I read one of those very bossy magazine articles about how to declutter your closet [audience laughter] and how you must ask yourself realistically if you are ever, ever going to wear that bridesmaids dress again or that pair of culottes. [audience chuckle] And if you answer no, you have to throw it away. And I think to myself, realistically, realistically I might need chemo drugs again and I might lose my hair again, but I would never, ever wear that stupid wig again. [audience laughter] Better to go back to the stupid scarves, better to let people ask me questions, better to let people look at me like they're about to cry, better to let the other women out there walking around with no hair see that I'm one of them. So, I threw it away.
[cheers and applause]
Catherine: [00:18:47] That was Jenny Allen. playing Jenny’s essays and articles have appeared in The New Yorker, The New York Times, and various anthologies, including the 50 Funniest American Writers. [Paka Ua by Ozzie Kotani & Daniel Ho] Her one woman show I Got Sick Then I Got Better has been seen in venues across the country. Coming up, a classy Anne Klein suit wearing magazine editor is trapped in a toilet stall with rap legend Foxy Brown outside yelling things that I'm not allowed to repeat on public radio when The Moth Radio Hour returns.
Jay: [00:19:54] The Moth Radio Hour is produced by Atlantic Public Media in Woods Hole, Massachusetts, and presented by PRX.
Catherine: [00:20:04] This is The Moth Radio Hour from PRX. I'm Catherine Burns from The Moth. Now we're going to hear from Danyel Smith. This story was told in 2003, and back then we didn't record the audio as well as we do these days, but we hope you won't mind. We'd also like to acknowledge that the language of the rap world is a bit livelier than that of public radio. So, we bleeped the liberal use of the B word, a word central to this story. Here's Danyel Smith live at The Moth.
[cheers and applause]
Danyel: [00:20:39] So I'm at Mesa Grill right here in New York City. [applause] I'm 38 years old now. I was 34 then. I was editor in chief of Vibe magazine and I was feeling pretty good about myself. [audience laughter] I'd moved up in the journalism world. I was able to afford $250 pumps. [audience laughter] I thought that Anne Klein suit was just the epitome of chicness and beauty. And I had one on. [audience laughter] So, I'm sitting there and I'm enjoying my meal at Mesa Grill. And it's a random weeknight and Vibe is having a party down the street at the Giorgio Armani store that I'm supposed to make an entrance after my dinner when the party's really swinging and I'm there, I'm enjoying myself.
And what I didn't realize is that in a few short moments, platinum recording artists and Grammy nominated emcee Foxy Brown was going to come in there and threaten to beat my ass. [audience laughter] A little backstory. [audience laughter] I had just written a story about Foxy Brown for Vibe. It was the December, January 1999 issue of Vibe. And I pride myself on being a good journalist and a good writer. And I thought I had written a story, which for me was different because to me it was pretty much a tongue kiss. I like Foxy. I think she's sexy, I think she's smart. I think she has a great rhyme style. I went down to Miami. I was supposed to be down there for two days to do the story and I ended up staying five days.
I was having a good time, came back and wrote this tongue kiss of an article. Yeah, I'm from Oakland, California. I've been in journalism. I started out the San Francisco Bay Guardian. If you clap, somebody fake, like, if you have. [audience laughter] I moved on up, moved on up, moved on up. I've been covering hip hop for years now, 14, 15 years. And hip hop is a wild culture. It's a wild scene. I love it. Back when hip hop first started, there was always a chance that you would at any random concert, that you would get stomped, you would get stabbed, you would get screamed on, but you would have a really good time regardless. [audience laughter] But I think I thought that being a journalist somehow made me think that I was imposing order on the chaos.
I think that being a journalist made me feel like I was in some sort of safe box, that whoever was getting stabbed was getting stabbed over there, and I was over there. And then afterwards, I could go talk to the person that was getting stabbed and ask them how they felt. [audience laughter] It didn't really involve me. So, I'm at Mesa Grill, and I'm feeling real cute [audience laughter] and very sophisticated. And I have two assistants. That's how large I was back then. [audience laughter] I had an assistant, Raqiyah Mays, black girl from New York, but she only weighed about 100 pounds. Raqiyah had an intern, Jesse Klein, Jewish from Queens. Jessie could be helpful in some things, but fighting Foxy Brown, I don't know all what she was going to do. [audience laughter]
So anyway, Raqiyah walks in and says, “Look, girl, Foxy Brown is out front in an SUV, and she wants to talk to you about the article. She wants to talk to you immediately. She wants you to come outside.” And I said, “I'm not coming outside.” [audience laughter] I said, “So, you could go tell her that.” [audience laughter] Enjoying my meal. Foxy's publicist comes into the restaurant, “Danyel, Foxy's outside. She's very, very upset about the article.” In my mind, I'm like, “For what?” But I say, “Look, Marvette, I'm not going out there. What you should do is take Foxy back to your—" I thought this was reasonable. “Take Foxy back to your office. When I finish my mail and when I'm done with my party at the Giorgio Armani store, [audience laughter] I'll be happy to come by your office and talk to Foxy. But I'm not running out of my meal at Mesa Grill and talking to her in the middle of the night. I'm just not doing it.” Marvette looks at me like, [whispers] “Okay, I'll tell her that.” [audience laughter] Enjoying my meal.
The next thing I know, my shoulder's getting banged on so violently, “I'm going to tell you, I was scared.” And it's Foxy and she's got four people with her. [audience laughter] Foxy's from Brooklyn. [audience laughter] I mean, I live in Brooklyn and I love Brooklyn, but Foxy's from Brooklyn. [audience laughter] And she was like, “I need to talk to you right now.” I was still trying to keep my composure. [audience laughter] I said, “Fox, I'm trying to enjoy my meal.” She's like, “Look, bitch.” And she was serious. And it was crowded in Mesa Grill. And me and Foxy and her friends, and Raqiyah were like the only black people in there. I was like, “Are we really showing out like this at Mesa Grill?” [audience laughter] She was like, “I don't appreciate what you wrote about me in the article. And I don't think you realize that I will beat your ass right up here in front of all these people.”
I was scared to death. I have never had a fight in my life. [audience laughter] So, I started thinking. I said, “Okay, Fox, let's do this now.” I understand when Foxy and I were in Miami, we had a ball and that's what the problem was. I never make friends with the subject. Anybody that's a journalist knows this, you never kick it with the subject. You always remind them the tape is running. You don't try to sit up and drink with the subject. You don't go to the beach with the subject. You don't go to the spa with the subject. You don't make friends with the subject. I made friends with the subject. I love Foxy. Foxy's mother had her when she was 15 years old. I'm about 15 years older than Foxy.
I think I was identifying with her. She was identifying with me, but I still didn't know what she could have felt so betrayed by this. She felt like she wanted to be my ass. I said, “Look Fox, let's go to the back to the bathroom and let's try to work this out.” And she was like this, “Fine, let's go.” [audience laughter] She had sneakers on. [audience laughter] She had her hair in a ponytail. [audience laughter] See, I'm laughing about it now, but I was scared out of my fucking mind. So, I walked in front of her to the bathroom. I got my big professional posse of Raqiyah and Jesse following me. [audience laughter] Foxy's backing them up. I walk into the bathroom. There's a little foyer in the bathroom, a little floor area.
I guess that's where were supposed to have our little rumble. I walked directly into a stall and shut the door, [audience laughter] put the toilet seat down, sat on the toilet seat, started two-way because you had to have a two way if you were in hip hop in 1998 or you just weren't. Shit. So, I'm two waying, Foxy's management. I'm like, “Look, Chris, you got to come up here.” I'm like, “You got to come up here immediately. Your girl is wilding out. She is wilding out. She wants to beat my ass.” He's like, “Dude, I'm in the Holland Tunnel.” [audience laughter] I'm going to try to get there if I can, but you better try work it out. Meanwhile, I'm embarrassed because I'm like, am I really in the toilet stall in front of Raqiyah and Jesse who look up to me like, “Danyel is the editor in chief. Oh my God, we love her.” [audience laughter]
I was so scared. I never fight. People said, “Well, was it like when you were in high school?” I'm like, “We didn't fight at my high school. I went to an all-girl Catholic school in Los Angeles, California. What are you going to do like that? I'm like, “I can't stand the toilet stall.” I come out, Raqiyah is knocking on the door like, “You got to come out.” I came out. Foxy has nails this long. [audience laughter] She's standing there backed up by like two guys and two girls. And I got Raqiyah and Jesse and Foxy saying, “Bitch this and bitch that.” And everything she's saying to me is, “Bitch, I don't think you know who I am. And bitch, you don't know who you are and you don't know how I beat your ass.”
And I'm standing there and I'm getting really scared because she's waving her hand all in my face and I'm like, “I'm about to get my ass beat by a 19-year-old girl.” I'm 34 years old. And what I really thought too was, I'm not fighting. I'm a grown ass woman. [audience laughter] I'm the editor in chief of a magazine. This shit is going to be in the paper. And I'm not like, going to be all up in the paper like, one, Danyel got her ass beat at Mesa Grill. [audience laughter] Two, I'm not going to be in the paper, just brawling like I'm a kid. So finally, I started getting a little bit mad. And you know how anger will make the fear smaller. [audience laughter]
So, finally I said, “You know, Foxy, I'm not going to be too many more bitches up in here.” [audience laughter] I always have to really think about how the story went right here. Because I know Foxy has her version of events that is totally different. And I reached back to like fourth grade and I was like, “So, you know, if you see a bitch, you need to slap a bitch” or you need to beat a bitch's ass or something that was real like Carthay Center Elementary School. [audience laughter] But it kind of shocked her, I think. Because I think she thought I wasn't going to say anything to her that was aggressive. So, I took that opportunity to sort of turn away from her.
My hair is long now, but back then I had the salt and pepper bob, you know what I am talking about, shorten the back and faded out at the back where there was really no hair on your neck. But she reached out to me and tried to grab me by my hair when I turned. And she couldn't grab anything because I didn't really have any hair in the back. But I felt her nails on my scalp. And that pissed me off. [audience laughter] And I turned to her, I said, “Are you out of your fucking mind?” I said, “Did you touch me?” I said, “You felt like that was okay to reach out and touch me?” I said, “Did you read the article?” I was like, “As long as you are black and, on this earth, no one will ever say anything as nice about you as I did in that piece. You need to read this shit and get out of my fucking face.” I was like, “This is ridiculous.” I think I shocked her. I was mad and I was just trying not to cry. That was my main goal. I didn't want to cry in front of Jessie and Raqiyah. [audience laughter] And I didn't want to cry in front of Foxy Brown and her posse. [audience laughter]
So, I turned and I passed by her and I walked out. I think she was just shocked that I cursed at her like that and I said those things. So, I went down to the party and I found some people. Somebody's brother was an off-duty cop, gave me a ride home. I was much more drama. The high-speed chase through Manhattan that I won't go through. But the whole point was, the next day, I was in the Post, it was in the news, it was in Newsweek, it was on MTV News. And people were calling me and saying, “Well, Danyel, do you have a comment? Do you have a comment? I mean, what happened? “Did Foxy Brown beat your ass at Mesa Grill? [audience laughter] Is it true that Foxy Brown pulled your hair at Mesa Grill? Were you fighting at Mesa Grill? Were you Giorgio Armani and Foxy Brown in a big fight at Mesa Grill?” [audience laughter]
Every time they called, I said I have no comment. And the reason I had no comment was because I felt like, “Look, I'm in hip hop. I've been in hip hop for a long time. Hip hop has done so well by me. I would not be the Danyel Smith standing before you all, whatever she is right now, if it wasn't for the music, if it wasn't for the culture, if it wasn't for the scene, I would not be this person. So, I just didn't feel it was right or correct for me to comment and come out against Foxy and in essence, and come out against hip hop. I'm in it.
And the thing that I appreciate about Foxy is it's just that kind of crazy energy that she has that makes hip hop what it is, that has made me what I am. And the thing that I thought about is in hip hop, it's the place, the scene that you just might always get your ass beat. [audience chuckle] That's what the deal is. Thank you.
[cheers and applause]
Catherine: [00:33:24] That was Danyel Smith. [Sorry by Foxy Brown playing] Her latest project, Hardcover is a magazine in hardcover form, or as she puts it, a book shaped magazine. To learn more about it or to read the original story Danyel wrote about Foxy, go to themoth.org. Coming up, when her insurance company refuses to pay for care, a mother is forced to bring her injured son home. The problem, he's in a coma. That's next on The Moth Radio Hour.
Jay: [00:34:20] The Moth Radio Hour is produced by Atlantic Public Media in Woods Hole, Massachusetts, and presented by PRX.
Catherine: This is The Moth Radio Hour from PRX. I'm Catherine Burns from The Moth. Our final story was told in Seattle, Washington. A warning to listeners. This story is about a car accident and is quite intense. Here's Stephanie Peirolo, live at The Moth.
[cheers and applause]
Stephanie Peirolo: [00:34:53] I was 23 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. And I said, this is it. It wasn't until about an hour later, I woke up and he was in my arms, wrapped up and 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 time RJ gets in trouble is because he wears his hair long and 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 barber shop, and he had a crew cut, and he was six feet tall and impossibly handsome, and he had this shy smile. And I thought, this is the man he is becoming.
In January of his junior year, that's 2003, a cop showed up at our door, and he said, “Are you RJ's mom?” And I said, “Yes.” And he said, “There's been an accident.” And 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. And we went in the back way, where the ambulance bays are, and someone was hosing blood out of the back of the ambulance. All of this blood. And I remember thinking, that's my son's. And 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 hours for me to find out what had happened. RJ had been driving to his best friend's. He had his seatbelt 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. And at the time, I didn't understand the gravity of a TBI, so I was worried about his pelvis. At the time, I was the vice president of an advertising agency that was owned by a global conglomerate of advertising agencies, and 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 a card with a phone number on the back.
So, while RJ is in ICU, I make the phone call, 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 the 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.” And I said, “No, no, no. He's got this 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.
And so I went over there and I said, “Where am I supposed to take him? He's in a coma.” And 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 15, 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.” [audience laughter] 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'd put him in his wheelchair, and his friends would come by after school. His friends came by every day after school, and the girls took to showing up in short skirts and fishnet stockings, and they would walk in front of the wheelchair, and RJ would lift up his head. [audience laughter]
Months had passed, and I still couldn't get the summary plan description. I keep calling them, and they'd be on the phone and they'd telling me my benefits. And I said, “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.” And they wouldn't do it. And 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. 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 $30,000.” And 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 get this insurance. I don't have $30,000.” 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 12 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 18, 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, and they had a lot of much younger population because there were 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 because that's like some manual dexterity happening there, right? [audience laughter] And then he turned to me and he put his hand down, because brain injury notwithstanding, he was not about to flip off his mother. [audience chuckle]
Before RJ's accident, I had to drag him to mass on Sundays, but after the accident, he'd love 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. But when he could swallow, 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. It turned out he still had his PEG tube in and it had fallen out. And 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?” And 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 going to go to God.” And I tried to think of who he knew that had already died, but he was 19. So, I thought of my dad who died before RJ was born. And I said, “RJ, you're going to God, but my dad is there and he's going to 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 are very good at what they do. RJ would be 27 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 have afforded to put him in a private nursing home and then he never would have 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 that 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 because I'm his mom. Thank you.
[cheers and applause]
Catherine: [00:47:18] That was Stephanie Peirolo. [Coming Up Roses by Lawless Music playing] At The Moth, we were all horrified by this story and wondered, could this happen to us? I mean, she must have been covered by some fly-by night health insurance company, right? She wasn't. It was one of the top healthcare providers in the U.S. Stephanie works as an executive coach and writer in Seattle. Her daughter Emma is now an RN and a mother herself. Stephanie's granddaughter shares a name with RJ. To see pictures of Stephanie and RJ, go to themoth.org. While you're there, you can pitch us your own story.
Jae: [00:48:04] I was born in South Korean. At age 5, my father's side of the family migrated to the US and left my mother behind. I was always told growing up that my mother left me at birth and wanted nothing to do with me and that she was remarried and is happily living in Korea with her husband and two kids. Because of this, for the longest time I never had a desire to look for her. But then one day I had a change of heart and in the summer of 2009, I took off to The Motherland in search for her. I remember my aunt asking a random pedestrian if they knew who my mother's family was and shockingly, she said “Yes.” I learned after our meeting that she never married or had kids. Everything I believed to be true were all lies. The last thing that my mother said to me when we departed was, “I never married because I hoped you come looking for me one day. And now that we found each other, I will spend every day of my life in hopes of your return.”
Catherine: [00:49:05] Remember, you can pitch us your story too. The number to call is 877-799-MOTH. Or you can pitch us the story at themoth.org. While there, you can share any of the stories you've heard of this hour with your friends and family. We're also on Facebook and Twitter @themoth. So that's it for this episode. Join us next time for The Moth Radio Hour.
[Uncanny Valley theme music by The Drift playing]
Jay: [00:49:37] Your host this hour was The Moth's artistic director, Catherine Burns. Catherine also directed the stories in the hour along with Maggie Cino. The rest of The Moth’s directorial staff include Sarah Haberman, Sarah Austin Jenness and Jenifer Hixson and Meg Bowles. Production support from Whitney Jones and Christy Bennett.
Our pitch came from Jae Young Yoon. Moth stories are true as remembered and affirmed by the storytellers. Moth events are recorded by Argot Studios in New York City, supervised by Paul Ruest. Our theme music is by The Drift. Other music in this hour by Lawless Music, Ozzie Kotani & Daniel Ho. The Moth Radio Hour is produced by me, Jay Allison with Viki Merrick at Atlantic Public Media in Woods Hole, Massachusetts.
This hour is produced with funds from the Corporation for Public Broadcasting, the National Endowment for the Arts, and the John D. And Catherine T. MacArthur foundation, committed to building a more just, verdant and peaceful world. Moth Radio Hour is presented by the Public Radio Exchange, prx.org. To find out more about our podcast, information on pitching your own story and everything else, go to our website, themoth.org.