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Thu April 12, 2012

Do I Freak You Out? Living With Physical Scars

"Do I freak you out?" It's a question that haunts writer Mary Elizabeth Williams and others whom she describes as "physically different, in ways both small and large."

Williams' surgery to remove cancer more than a year ago left a 5 centimeter bald spot on the back of her head. She doesn't mind it — it's a badge of survival — but her daughter, Beatrice, fusses about it from time to time.

One day, Beatrice came home and told her about a conversation she had with a friend, who was born without a left hand. The girl asked Beatrice: "Do I freak you out?" It prompted Williams to write a piece for Salon.com, "Look at My Scars." In it, she writes that "the things that make us stand out .... can remind us of the most dramatic, heroic moments of our lives, and of every small indignity and cruelty that has happened since."

Williams tells NPR's Jennifer Ludden that Beatrice handled the question beautifully. "She said ... 'Why would you freak me out? I love you.' And then [Beatrice] kissed her on her wrist and [they] played." She was really proud of both girls for having a conversation that adults don't always handle well.

When it comes to scars and imperfections and things that make a person stand out, says Williams, "we feel uncomfortable addressing it, either in ourselves or when we see it in others." But she doesn't think it has to be that way.

"Obviously, everyone is different," Williams allows. "You don't know how people are going to react." But, "when you're coming at a person with honesty, and you're coming out of a genuine curiosity and empathy ... that I don't find offensive at all. And I think many of us don't."

To her, "it says I'm looking at you, and I'm curious about you, and I wonder about what it's like to walk in your shoes." And looking away can be more offensive than curiosity. "I'm much more hurt when people don't want to ask me what's going on ... [because] it says I freak you out. It says I make you uncomfortable or I'm weird or I'm ugly."

But she says there is a compassionate way to interact with people who have obvious physical differences without talking about it, if that makes you more comfortable: "I think you can just always tell the difference when someone is trying to be discreet and someone is trying to be respectful and when somebody is just kind of grossed out. And that's something that really is communicated to people."

Copyright 2012 National Public Radio. To see more, visit http://www.npr.org/.

Transcript

JENNIFER LUDDEN, HOST:

This is TALK OF THE NATION. I'm Jennifer Ludden.

Mary Elizabeth Williams walks around with a bald spot. She doesn't mind it. This five-centimeter circle on her head has a badge of survival from the surgical removal of cancer a year and a half ago. But her daughter, Beatrice, fusses over it, sometimes prompting her mom to hide it. So Mary Elizabeth Williams got to thinking when her daughter Beatrice told her something recently. A new classmate, a girl born without a left hand, asked Beatrice: Do I freak you out? Williams wondered how her 8-year-old handled that situation.

NEAL CONAN, HOST:

If you face these kinds of questions, how do you want people to approach you? Or should they even ask? Our number is 800-989-8255. Our email address is talk@npr.org. And you can join the conversation at our website. Go to npr.org and click on TALK OF THE NATION. Mary Elizabeth Williams is a staff writer for salon.com where she wrote the piece "Look at My Scars." She joins us from our New York bureau. And welcome back to the show.

MARY ELIZABETH WILLIAMS: Thank you so much for having me.

LUDDEN: So tell us first then, how did your daughter Beatrice answer her classmate who asked her do I freak you out?

WILLIAMS: Well, I was concerned because I know sometimes I freak my daughter out with my bald spot, but I think that's a much more emotionally-loaded scar for her because it represents something very different. To her, it represents her mom's illness. But when her friend asked her - she told me about it a few days later. She said she asked me, do I freak you out, and I said what did you say? And she said, I said, why would you freak me out? I love you. And then I kissed her on her wrist and we played.

(SOUNDBITE OF LAUGHTER)

WILLIAMS: And I just - I thought that was just so lovely, and I was so proud of - I was proud of both of them. I was proud of my daughter for answering honestly. But I was proud of this girl for being able to have that kind of conversation because I think we, as adults, get so freaked out about having these discussions and being open about our own scars and our imperfections and the things that make us stand out and the things that make us different. And we feel uncomfortable addressing it, either in ourselves or when we see it in others. And I love that these two little girls were able to have an open conversation about something that many adults can't do.

LUDDEN: I mean, it does seem pretty mature for a child. You know, we're always thinking children say the darndest things, and you're afraid they're going to pipe up and say something rude or offensive, you know, if they do see someone on the street. I mean, I, you know, have wondered what should I tell my kids if they asked about something.

WILLIAMS: And you know, one of the - and one of the women who I spoke to for this story, who has also had - who is like me, had melanoma and have had skin removed and also has psoriasis, she's a parent. And she said, I love the way that children approach me, and I love the questions that they ask me. It's adults who seem to struggle.

LUDDEN: So we don't have to tell them, don't ask, honey.

WILLIAMS: I, you know, well, obviously, everyone is different. You don't know how people are going to react, but I find - I can speak for myself and for this woman, when you're coming at a person with honesty and you're coming out of a genuine curiosity and empathy. I think that's what kids bring to the table so often, is their empathy and wondering what it would feel like to be like that or what would it be like to look like that. And that I don't find offensive at all. And I think many of us don't.

You know, to be, it says I'm looking at you, and I'm curious about you, and I wonder about what it's like to walk in your shoes. And that I'm never offended by. I'm much more offended when people look away. I'm much more hurt when people don't want to ask me what's going on.

LUDDEN: Because that says?

WILLIAMS: It says I freak you out. It says I make you uncomfortable or I'm weird or I'm ugly. And I'd much rather just be looked at and have a conversation.

LUDDEN: Which is so interesting because I think that, you know, in some cases, people probably think they're doing the right thing by wishing away or not asking.

WILLIAMS: Oh, sure. And there's - but there is a difference between, you know, I was thinking a lot about this. I've obviously been thinking about all of this the last few days and, also, in light of, I've been talking a lot this week about Ashley Judd's wonderful piece that she did earlier this week for The Daily Beast about body-snarking and the culture of negativity around our looks and our bodies.

And I think you can just always tell the difference when someone is trying to be discreet and someone is trying to be respectful and when somebody is just kind of grossed out. And that's something that really is communicated to people.

We feel it. We see it, and we do it ourselves. And I think, you know, I think of how I look at people, as well. And it's just - I think you just have to figure out how to look at people with compassion and with kindness and with empathy.

LUDDEN: If you face these kinds of questions, how do you want people to approach you or should they even ask, call us at 800-989-8255. Or email us at talk@npr.org. And we have Sarah in Traverse City, Michigan. Hi, Sarah.

SARAH: Hi.

LUDDEN: What's your - go right ahead.

SARAH: Oh. I had - was in a car accident when I was in high school, and I had some disfigurement in my chin and around my face. And when people would stare at me, you know, I didn't really have any expectations. I kind of thought, you know what? It looks shocking. But if they stared a lot, I tried to add humor into it, and I would go, ahh, and make different kinds of noise.

(SOUNDBITE OF LAUGHTER)

SARAH: And I just - and it's been corrected now with plastic surgery. But at the time, I kind of understood their curiosity because it just looked, you know, not attractive. But mostly with children, I remember I would just totally be humorous about it and, you know, kind of lurch over and everything. So...

LUDDEN: That sounds - it must have been difficult, though. I mean, high school, people are so obsessed with looks.

SARAH: It was very horrible, because it happened in the summer, right before my junior year. And so when I went back to school, I clearly looked different because I went through a windshield. And so I had - all my skin was yellow and bruised, and my jaw was swollen. And so I remember my chemistry teacher wouldn't look at me until the end of the semester. And he was like, did something happen? Which was like...

(SOUNDBITE OF LAUGHTER)

LUDDEN: Oh my goodness.

SARAH: ...which was weird.

WILLIAMS: (Unintelligible)

SARAH: Yeah, he actually did. But I was...

WILLIAMS: But did it make you feel different when he was able to look at you and ask you the question? Did it take some of the pressure off?

SARAH: Not necessarily pressure, but it was surprising. I wasn't used to it, because I wasn't born with something...

WILLIAMS: Right.

SARAH: ...that, you know, I had a scar. It was - all of a sudden, it happened because of an accident. And so I think I was more, probably, understanding because I would probably scare someone. And I know that it sounds unempathetic, but it was just, you know, it was shocking. So that's why I always just tried to be humorous about it, and especially with little kids. I loved (technical difficulties). I know I sound terrible, but in grocery stores, they would stare at me and I would totally be, like, ahh, and just, you know, freak them out.

(SOUNDBITE OF LAUGHTER)

WILLIAMS: You know, I think that sense of humor is huge in life, whatever happens to us, to be able to laugh at ourselves and laugh in a way that is real and dynamic is great.

SARAH: OK. That's all I had to add.

LUDDEN: Sarah, thanks for the call.

WILLIAMS: Thank you.

SARAH: OK. Thank you. Bye.

LUDDEN: Bye. Mary Elizabeth, did you, in your reporting, find the difference between people who, like Sarah, had an accident and suddenly changed in appearance or people who had been born with them type of situation?

WILLIAMS: Yeah. I think I - there is a definite difference in how people who've been conditioned from birth and know themselves in only one way and people who, like me and some of the other people I spoke to, have changed. You know, it's shocking. And there's a real adjustment that you have to make yourself to the person in the mirror. And I think there's a different - there's an additional challenge in that, right, because we're used to seeing somebody one way, and then you have to get used to this other person. And there's often, around you, this coterie of people who say: You're so lucky to be alive.

And you can really internalize this awkwardness because you think, well, I am lucky to be alive. But I'm - I also need to grieve for the person I was before. You know, I'm a different person now. I've changed, and I want to be able to acknowledge that and acknowledge the passage from one person into another. And that is a different kind of experience.

LUDDEN: All right. Let's take a call from Ken in Concord, California. Welcome.

KEN: Oh, hey.

WILLIAMS: Hi, Ken.

KEN: Yeah. I just - what I had for years after an accident was a pretty severe limp on the right side. And I found that kids were fine. They would either look at me and I'd wave at them and they'd laugh and they were fine. Or my little nephews and nieces would say, ooh, you have an owee, you know, and that was their whole interpretation of the thing. But the girlfriend I had at the time could not handle it, the difference between me as a non-limping person and me as a limping person.

LUDDEN: Hmm. How did she react?

WILLIAMS: That's so unfortunate.

KEN: Pardon me?

LUDDEN: How did she react?

KEN: She kept saying, when is that - when are you going to be better? Like, I really can't handle this. And I said, well, you know, it may be a few years. They tell me it'll probably eventually go away. But it's going to be a few years. And she eventually just wouldn't return my calls.

WILLIAMS: Wow. That's - I think that's not uncommon, and I'm so sorry you had to go through that. I think there's a lot of pain and a lot of rejection when we go through experiences that are hard but, I think, also make us so stronger and make us proud of the people that we are for going through them and surviving them. But I can tell you, I don't know anyone - I don't know a single person who has had the experience of cancer or who has had the experience of something very traumatic in their life who will not say: I have lost friends. I have lost relationships because of this. And it's very sad. It's very unfortunate that there are people who can't handle their own fears or discomfort with sickness or injury or mortality.

It's - it comes along with the territory, and nobody tells you that. I think when - they don't put that in the brochures when you go through a traumatic experience, that you're going to lose people you love. And I'm very grateful that you talked about that today. Thank you.

LUDDEN: Ken, thanks for sharing.

KEN: Yeah. There's a - I have one more little funny story from the same time period. I wound up with a girlfriend who limped on the same side I did...

(SOUNDBITE OF LAUGHTER)

KEN: ...only her limp was, you know, from birth, and she wound up embarrassed when we would walk across campus together.

LUDDEN: She was embarrassed about you, or the two of you together?

KEN: The two of us together, limping in time.

(SOUNDBITE OF LAUGHTER)

WILLIAMS: Oh. You just worked out some new dance moves. That's all.

KEN: Yeah, it was - I was really not expecting that, because I thought, you know, she limps, too. So this is good, you know? But...

WILLIAMS: There's...

KEN: No (unintelligible).

WILLIAMS: ...often no rhyme or reason to it.

KEN: Everything is bad that draws any attention to you.

LUDDEN: Aw. Ken, thank you so much for the call.

KEN: Oh, you're welcome.

LUDDEN: You're listening to TALK OF THE NATION, from NPR News. And Ruth is in Bountiful, Utah. Hi, Ruth.

RUTH: Hi. The experience I had, I had a mastectomy and - on one side. And everybody that I run into, whether it's male or female that I've known that's heard about it, they don't look at me in the face anymore when they talk to me. They just stare at my right chest the whole time they're talking to me. And kids don't bother me, because the kids aren't even aware of it. But adults, I have said, I have a face. I'm up here. Hello. I would rather them just come right out and say: Hey, what does it like not having one boob?

WILLIAMS: Right.

RUTH: What does it like not have - but they just stare at me there, and they will not pull their eyes up to my face. And I'm having a hard time moving on from it because they won't move on. They only see me as a walking cancer. They don't see me as a survivor or - it's no big deal to me anymore. I'm used to dressing around it, but I'm having a hard time moving on.

WILLIAMS: Have you had a conversation?

RUTH: Pardon?

WILLIAMS: Are you able to talk to people about this? Then you'll say...

RUTH: Oh, I'm telling them anything they want to know. There are things they never tell you about the whole surgery and what they're going to do and what it's really like.

WILLIAMS: Yeah.

RUTH: I'll tell them anything they want to know, but they don't ask. They just stare at me there and talk about, oh, the kids or organic food. But they...

WILLIAMS: While they're staring at your breast?

RUTH: They don't ever look up on face.

WILLIAMS: Yeah. Do you ever say, hey, hey, eyes up here?

RUTH: I have a mouth. I have a...

(SOUNDBITE OF LAUGHTER)

RUTH: I have an arm, guess what? And then they'll - I guess they realized they're doing it then, but they don't seem to see me as - as long as I'm a survivor, they don't seem to see me that I don't identify myself as cancer.

WILLIAMS: Right.

RUTH: I identify myself as just a person who had a bad blip(ph).

LUDDEN: What's so interesting is that I would - guessing that no one would do that purposefully. They must be completely unaware...

RUTH: I don't think (unintelligible).

LUDDEN: ...and it's just - they can't stop themselves.

RUTH: It must be fascinating, because I had - was, like, a 36B on the other side, so they must figuring out, now, how do they balance that out? I told them, you know, they have bras. They have things. And once I said, oh, I just buy coconuts all time and put in there, as a joke...

(SOUNDBITE OF LAUGHTER)

WILLIAMS: Good for you.

RUTH: ...because I'm sure they want to know. Maybe they should put billboards that said, before and after and show it, so that the curiosity...

(SOUNDBITE OF LAUGHTER)

RUTH: ...because they don't - they talk about cancer, and they talk about finding a lump and how to - but they don't talk about what it looks like after.

WILLIAMS: Yeah.

RUTH: And that curiosity covered up is - with adults is giving me a hard time.

WILLIAMS: I think there's a lot of curiosity, and I think you've put it so beautifully, that it is about, you know, you want to be seen as yourself, as a whole person, and not...

RUTH: Yeah.

WILLIAMS: ...just a portion of yourself. And you should be proud of surviving this. And who you are now is a big part of who you are, but it's a portion of who you are, and that body part doesn't represent the whole picture at all.

RUTH: Well, they'll say, oh, you're never going to be able to date, are you?

LUDDEN: Oh.

WILLIAMS: Oh. Uh!

RUTH: Like, that is a big paramount thing. I'm pretty happy to be alive, you know.

(SOUNDBITE OF LAUGHTER)

LUDDEN: Presumptions. Wow.

RUTH: That's the least of my worries.

WILLIAMS: Yeah. Right. And you're obviously a lovely, smart, funny person with a great sense of humor. So...

RUTH: Well, it is pretty funny if you were to look at - I mean, it is pretty funny to see. I mean...

LUDDEN: Well, thank you...

WILLIAMS: People project so much of their own fear and their own anxiety onto you, and it's...

RUTH: Yeah.

WILLIAMS: ...an unfortunate side effect of cancer or whatever. But...

RUTH: It is. You can go weeks without thinking about it, till you run into a friend, and then stare at it.

WILLIAMS: Yeah.

RUTH: And you think, oh, that's right. I had that, you know?

WILLIAMS: Well, good for you.

LUDDEN: Ruth, thank you so much for calling.

WILLIAMS: Thank you. Bye.

RUTH: All right. Thanks, bye-bye.

LUDDEN: There's an email from Sandy in Colorado. She says: My granddaughter was born with a cleft lip and palate. When people stared at her, she would ask them if they'd like to know why her lip looks like it does. They almost always said, yes, and my granddaughter would tell her story. It eases tension on both sides.

WILLIAMS: That's wonderful. And that's about - that's good parenting. That's really, rally important. And one thing I love about my daughter Beatrice's friend is that her parents really talk to her and have her part of the conversation and prepared the class beforehand. And when I wrote this story, I asked her mother if I could talk about this, and she said, yes, because it was important. And I think that's really good parenting, is being open and not making a child feel uncomfortable with herself.

LUDDEN: So, Mary Elizabeth, we're down to our last minute, here. But what would you like people to say to you, or how would you like people to encounter you?

WILLIAMS: You know, I think about that a lot, and I think that the main thing is just we're all so different and we all have different comfort levels. But I think if you're approaching everyone in your path with empathy and with compassion, however that is authentic to you, if you're curious and open and questioning and you come at me curious and opening and questioning, great. If you're discreet and you're shy and you're private, and you feel like you want to give me space, that's great, too. But just see me as a person. Treat me as a person and not a - not someone who you should be scared of, because we're all the same. We're all going through the same experiences and pains and sufferings, and there's a lot of beauty in that suffering and pain, and there's a lot that brings us together.

LUDDEN: Mary Elizabeth Williams is a staff writer for Salon.com. We have a link to her piece "Look at My Scars" at npr.org. Click on TALK OF THE NATION. She joined us from our New York bureau. Thank you so much.

WILLIAMS: Thank you for having me.

LUDDEN: Tomorrow, it's TALK OF THE NATION: SCIENCE FRIDAY. Ira Flatow will be here for a conversation with biologist E.O. Wilson about the origins of society, both ant and human. This is TALK OF THE NATION, from NPR News. I'm Jennifer Ludden, in Washington. Transcript provided by NPR, Copyright National Public Radio.

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