Skin Deep

Apr 10, 2015
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GLYNN WASHINGTON, HOST:

Today on SNAP JUDGMENT, from PRX and NPR, Eye Of The Beholder - amazing stories from real people who are not as they may appear. My name is Glynn Washington. Please get your top hat and snowmobile boots out because you're listening to SNAP JUDGMENT.

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WASHINGTON: OK SNAPers, before we even get started, I want you to know that we have changed the names of some of the participants in this next story to protect the innocent. And they are all innocent. Now, on SNAP JUDGMENT, you know that we have taken you to the highest mountaintops, into the depths of the deepest sea, but today, we're about to take you to one of the most scariest places ever - summer camp.

(SOUNDBITE OF CAMPFIRE SONG)

UNIDENTIFIED CHILDREN: (Singing).

SARAH HARRIS, BYLINE: It's three days before the big dance at Camp Discovery in northern Minnesota. Camp's in full swing. They're singing around the campfire. Kids are at waterfront. They're playing those trust games where you get blindfolded and have to walk around cones.

UNIDENTIFIED CHILD #1: Right.

(LAUGHTER)

UNIDENTIFIED CHILD #1: Forward.

(LAUGHTER)

UNIDENTIFIED CHILD #1: Left, forward.

UNIDENTIFIED CHILD #2: Forward, forward.

UNIDENTIFIED CHILD #1: (Laughter).

HARRIS: But there's also so much excitement about the dance. Everybody's scrambling to get a date, and there are more girls than boys.

(SOUNDBITE OF MUSIC)

CAITLIN: There's so much drama. Oh, my goodness.

HARRIS: Caitlin's (ph) 13. She's into gymnastics. She has long dark-brown hair. She's popular. And she says, if you want to stay up on the drama - who's asked who, who got dumped - there's one place to be.

CAITLIN: If you go play basketball, usually you're, like - the basketball crowd is kind of the - it's kind of, like, the gossip area. That's where most of the things happen.

HARRIS: And the negotiations of who's going to ask who are kind of complicated.

CAITLIN: So it's kind of like, oh, I want him. Wait, I also want him kind of thing. And then you have one friend who wants to go with him, but it's like, oh, wait. I wanted him too. And so should you say yes because you're my friend, or...

HARRIS: Most of the boys seem like they could care less about the drama and the dance, except Nathan (ph). He's a boy on a mission to get a date.

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HARRIS: Nathan's 11, funny and a little sheltered. This is his third summer at camp.

NATHAN: That's one of the reasons I like to come here 'cause you don't have a parent (laughter) to keep going, hey, don't do that. No, hey, don't do that. But in other cases, it's learning what happens when you don't listen to your parents (laughter).

HARRIS: Last year, Nathan had an amazing time at the dance. He was too embarrassed to ask anybody, but he wore a suit, which was a big hit. This year, he really wants to go with someone. He's already asked one girl.

NATHAN: And I might have gotten rejected. I don't know yet. She said, I don't know. And I'm so nervous 'cause I want to take her.

HARRIS: Are you going to ask again?

NATHAN: Yes.

HARRIS: What's going to go through your head when you walk up to her?

NATHAN: Fear - mostly fear. You know, what girls do when they like a guy, they hit him. They do stuff like that. I know from experience. And guys, I don't know what they do. Showing off - that's what boys do.

HARRIS: So Nathan asks the girl again. She says no.

NATHAN: I cried in the cabin. I cried in my bed. I cried in the bathroom.

HARRIS: What made - why were you crying?

NATHAN: Well, because I had never been rejected before.

HARRIS: Never?

NATHAN: Never. Not like that.

HARRIS: Most of the kids here are really used to getting rejected because they all have skin diseases.

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HARRIS: Some kids have splotches or moles or scales. Some are bald or allergic to the sun. Some have life-threatening diseases. There are kids who get enormous blisters from just walking, eating, even changes in temperature. They're covered in bandages. They're in wheelchairs. Camp's swarming with dermatologist and nurses. There's a big table in the mess hall where kids line up to get their medicine.

Compared to a lot of the campers, Caitlin's skin disease is pretty mild. She has eczema. She's an Army brat, and every time she starts a new school, she has to explain what's wrong with her skin.

CAITLIN: I remember one time, I was going up to get a math sheet, and there was this person who I thought was beginning to be my friend kind of. And I was going up to get a sheet, and she touched my elbow which was really dry and rough at that time. And she, like, yelled really loud, ew. That's disgusting. Your elbow's so rough and dry. And then everybody came over and touched my elbow, and I felt like - you know how you go to a museum or something and you're all staring at, like, a lizard inside a box or something? I felt, like, so much like that.

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HARRIS: Everybody at camp has this feeling, like, all the time in their normal lives. I have a skin disease. I've had this feeling. I came to this camp as a kid and as a counselor.

UNIDENTIFIED CHILD #3: It's like you're at a regular camp, but it's the only time you'll ever be normal.

CAITLIN: There's a sense, here, that you can just do whatever you want, be whoever you want, and your personality can completely change from school to here. I think this is a complete bully-free zone.

HARRIS: At Camp Discovery, Caitlin's not a lizard. She's beautiful. She has her pick of suitors, but she only has eyes for Christian (ph), a boy in a wheelchair who has epidermolysis bullosa. It's the most severe disease at camp. In some cases, it's fatal. Christian's skin is covered in blisters. His hands and feet are knotted, infused with scar tissue. His arms and legs are covered in bandages. And last year, he and Caitlin, they hung out.

(SOUNDBITE OF MUSIC)

CAITLIN: We talked a lot during the dance, and after horseback riding, we went and saw the puppies and stuff - that was pretty cute - and took pictures with him and the puppies.

HARRIS: OK, so you guys definitely - you know each other.

CAITLIN: We're friends, yes. It's kind of cute, I guess. Last year, we danced a lot, and he asked to take a picture with me at the end of the dance.

HARRIS: But it turns out Rachel (ph), Caitlin's cabin mate, also likes Christian. Rachel's quiet, funny but quiet. She doesn't want to be interviewed. She has a disease called vitiligo, so her skin's really, really blotchy. Rachel's already going to the dance with Christian, but she invites Caitlin to come as a sort of triple date. This is a power move in the world of middle-school-girl politics. They're both going to the dance with Christian, and nobody's feelings are getting hurt. Meanwhile, Nathan is still on the hunt for a date. He's also got EB, but not as badly as Christian. He wears bandages on his hands, elbows and feet.

NATHAN: It's basically where there's layers of skin. And my skin, it doesn't have the glue between the layers, so it just peels easily.

HARRIS: And it, like, makes blisters? Is that right?

NATHAN: Yeah, blisters. It's junctional EB. It's not the worst, but it's not the best.

HARRIS: Now, there is a girl who likes Nathan. She's cute, but her skin is worse than those other girls. Nathan doesn't ask her to the dance. He asks someone else. And girls whose skin diseases you can't really see keep turning him down.

NATHAN: One of the reasons why I aim for the pretty girls is I can't see myself - in my head, I have an envisioning of, like, a kid with no blemishes on the skin. And so I just went for the - them first.

HARRIS: I mean, when you think about the possibility of you not being asked because of your skin, how does it feel?

NATHAN: A bit of anger, but I would understand.

HARRIS: Why would you understand?

NATHAN: 'Cause I didn't ask Savanna (ph). I mean, it's not all because of her skin. It's just - well, some of it is, yeah.

HARRIS: You know, like, thinking about how she feels, you know, not being asked, maybe, a little bit because of her skin...

NATHAN: Yeah.

HARRIS: What does it make you feel like?

NATHAN: I don't feel like a total monster, but it seems a bit mean, just a bit.

HARRIS: So at skin camp, looks matter unless you have really bad EB, the blistering disease. These kids, bandaged and in wheelchairs, they become the darlings of camp, especially the boys, who usually end up getting asked to the dance.

(SOUNDBITE OF MUSIC)

HARRIS: The last day of camp before the dance, a lot of girls leave waterfront early to get ready. Caitlin's the cabin makeup guru. She helps other girls with eyeliner and lipstick. The boys aren't so worried about how they. Nathan's one of the first kids ready for the dance. He tells me he brushed his teeth and used AXE body wash. He brought his dress pants to camp. But he's packed them, so he's wearing yellow gym shorts.

The mess hall's all decorated. The tables are pushed to the sides. The lights are low. Music's pumping. Caitlin and Rachel look cute in their dresses. Christian's wearing a button-down shirt, and they head into the dance together. Nathan waits outside for his date. It's been a rough week getting rejected by girls he thought were in his league. At the last minute, his date ditches him, and he's left alone.

NATHAN: I feel a bit sad that I was rejected again, basically. I don't know if I was rejected...

UNIDENTIFIED CHILD #4: Slow dance.

UNIDENTIFIED CHILD #5: It's time to slow down.

NATHAN: OK. I'm outside.

UNIDENTIFIED CHILD #5: Are you guys doing that? Are you guys doing it?

HARRIS: Are you going to stay outside during the slow dance?

NATHAN: I wonder if my date will come and find me, if I still do have one. I wonder if I have a plan E.

HARRIS: Do you need a plan E?

NATHAN: Maybe, just in case. I don't like slow dancing.

UNIDENTIFIED CHILD #6: I don't either.

UNIDENTIFIED CHILD #7: I don't either. It's the worst. I slow danced once with one of the younger girls here, and they're like...

HARRIS: Nathan's pretty bummed, so I let him call his mom from my phone. He explained what happened with all his dates.

UNIDENTIFIED WOMAN #1: Wait. Tonight's the dance.

NATHAN: Yes it is, but...

UNIDENTIFIED WOMAN #1: So what will you do?

NATHAN: Well, I...

UNIDENTIFIED WOMAN #1: Yeah, because I - last year - did you tell Sarah (ph) what you did last year?

NATHAN: Well, last year, what happened? I wore...

UNIDENTIFIED WOMAN #1: Where you wore - you took your nice suit, and you didn't plan to ask a girl. And girls were telling you to ask someone, and you absolutely refused to. You just went and danced and had a great time.

NATHAN: I was embarrassed, yeah.

UNIDENTIFIED WOMAN #1: So you were too embarrassed last year to ask?

NATHAN: Yes.

HARRIS: But you wore that wonderful suit which you then got all bloody.

NATHAN: Bloody.

UNIDENTIFIED WOMAN #1: Oh, so he did tell you about that.

HARRIS: Yes, that he came home wearing a bloody suit.

UNIDENTIFIED WOMAN #1: Oh, yeah, with shower shoes that he had worn to the dance the night before. And you know he has fragile skin, and someone had stepped on his foot that night at the dance.

HARRIS: Yeah.

UNIDENTIFIED WOMAN #1: And about a third of his foot was a new wound. And he was so excited and tired, he didn't tell anyone, so he traveled home that way.

HARRIS: Oh, my God.

(LAUGHTER)

UNIDENTIFIED WOMAN #1: I know.

HARRIS: If it...

UNIDENTIFIED WOMAN #1: So I told him he's not allowed to come home without making sure that, you know, somebody's looked at his hands and feet at least a little bit. So Sarah said that she'd like me to encourage you to go in right now, and so that means right now.

NATHAN: OK.

UNIDENTIFIED WOMAN #1: Will you do that for both of us?

NATHAN: Yes, ma'am.

UNIDENTIFIED WOMAN #1: I love you, Son.

NATHAN: I love you, Mama.

HARRIS: So Nathan finally heads into the dance. Inside, things start off OK. I ask Rachel how it's going. She says, go talk to Christian.

HARRIS: Can I talk to you? You have two dates. What's that like?

CHRISTIAN: It's fun.

HARRIS: Yeah? What's the best part about having two dates to the dance?

CHRISTIAN: Dancing.

HARRIS: It's pretty nice. You get to dance with both of them.

CHRISTIAN: What?

HARRIS: Yeah. I said, you get to dance with both of them.

CHRISTIAN: Oh.

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HARRIS: But the thing is, he's not dancing with Caitlin. She's disappeared and is dancing with her friends. Christian starts asking Rachel where Caitlin is. He gets more and more upset, and then he storms out of the mess hall and back to the boy's cabin, barricading his wheelchair against the door. Counselors finally convince them all to come back into the dance, and they start dancing in this weird, sad line. Rachel's holding a counselor's hand on one side, Christian on the other. Christian's holding Caitlin's hand, and her face is buried in her counselor's stomach. She's sobbing. The dance ends, and they all leave sad.

CAITLIN: Because it, like, broke my heart to think that he probably doesn't get this much attention at all. And then I ask him to the dance, and I don't dance with him. I just wanted to dance with some of my friends. It's like I'm being a bully. And I - yeah, I felt like I was a bully in a place where there's supposed to be a bully-free zone.

HARRIS: Yeah. You know, it's like - it's cool to go to the dance with the kid who has the worst skin disease, but then you don't dance with him, you know?

CAITLIN: Yeah. It's like - it makes it even worse that, like, the people who have it worse, I'm also, like, the meanest to, it feels like. Like, all of a sudden, that I'm picking on the ones that, like - I went to the dance purposely to go - to not dance with him.

HARRIS: I don't think anybody thinks that's true.

CAITLIN: I do.

HARRIS: Well, I guess this is something where you just kind of learn, you know?

CAITLIN: Yeah, I - yeah. Right now, I feel like I'm not learning anything, but - right now, it just feels like this is mean pain.

HARRIS: And the night still isn't over. I'm talking to Caitlin by the bunks when there's a knock on the door. It's Christian, flanked by counselors. He's come with flowers, and he asks for Caitlin.

CHRISTIAN: Could you have her come here?

HARRIS: Yeah, I will. Sure.

CHRISTIAN: Thank you.

UNIDENTIFIED COUNSELOR #1: There you go, buddy.

HARRIS: But Caitlin's so embarrassed and ashamed, she hesitates to even go to the door.

UNIDENTIFIED WOMAN #2: You'll feel so much better. Let's do it.

CAITLIN: No, I won't.

HARRIS: Yeah, you will.

CAITLIN: No. Every time I look at him, I feel 10 times worse.

UNIDENTIFIED WOMAN #2: I know, but that's why we've got to fix it.

CAITLIN: It won't be fixed. I'll always feel like this.

HARRIS: You don't have to always feel like this.

CAITLIN: But I will. When I get something in my head that I did something wrong, I just feel like that forever.

HARRIS: He wants to make it better. Yes he did.

CAITLIN: It's 'cause he did nothing wrong.

HARRIS: He wants to talk to you. He doesn't know that he did nothing wrong. He wants to talk to you and work it out.

HARRIS: So Caitlin reluctantly goes to the door.

Go on, lady. You got it.

CHRISTIAN: I'm sorry, OK?

CAITLIN: Thank you. I'm sorry too.

CHRISTIAN: It's OK.

HARRIS: Caitlin's counselors whisper to her to see if she can give Christian a hug.

UNIDENTIFIED COUNSELOR #2: Ask him if you can give him a hug.

CAITLIN: No, no, no, no. Can I give you a hug?

CHRISTIAN: Yeah. I'm sorry.

CAITLIN: I'm sorry too.

HARRIS: Christian hands Caitlin a little bouquet of flowers. The thing is, Christian has spent the whole night chasing Caitlin. Rachel, the girl with the more visible skin disease, his other date, has been forgotten. Lacy's (ph) their counselor. She's a dermatology resident, and she watched the whole night unfold.

UNIDENTIFIED COUNSELOR #3: I think it probably is the most painful thing I've ever watched in person.

HARRIS: Why?

UNIDENTIFIED COUNSELOR #3: I think mostly because this camp is supposed to be a place where kids are safe from things like this, and they come here to fit in, possibly for the first time in their whole lives. And then - and even the ones who are doing the hurting, they understand what they're doing to the other kids, but they can't stop doing it.

HARRIS: I mean, yeah. That's, like, the catch-22 of this place, right? Like...

UNIDENTIFIED COUNSELOR #3: It has its own hierarchy. And in some ways, it's different than the rest of the world, but in other ways, it isn't because even that backfires. I just wish that this wasn't a place that that could even happen, I guess.

HARRIS: She says that kind of makes it worse. A rough night turns into a rough morning. At the airport, all the kids are hugging and crying. Getting on that plane means heading back to the real world. Even though last night's drama was intense, nobody wants to go home.

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WASHINGTON: Yes, there is lots of love for everyone at Camp Discovery. It's sponsored by the American Academy of Dermatology, and it is free. It is fun. Learn more about it by going to aad.org when searching for Camp Discovery. We'll also have a link on snapjudgment.org. That piece was produced by Sarah Harris. Well, Sarah is a reporter at North Country Public Radio in northern New York, and Sarah received the assist from our own Anna Sussman, with sound design by Renzo Gorrio.

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WASHINGTON: When SNAP returns, a relationship is doomed before it even gets started, and we introduce you to the very best dentist in the world, for real, when SNAP JUDGMENT, the Eye Of The Beholder episode continues. Stay tuned. Transcript provided by NPR, Copyright NPR.