美国国家公共电台 NPR 'Ugly': A Memoir Of Childhood, Deformity And Learning To Love A Distinctive Face（在线收听）

'Ugly': A Memoir Of Childhood, Deformity And Learning To Love A Distinctive Face 

play pause stop mute unmute max volume 00:0006:14repeat repeat off Update Required To play the media you will need to either update your browser to a recent version or update your Flash plugin. RACHEL MARTIN, HOST: 

When Robert Hoge was born, he was rushed to intensive care before his mom even got a chance to see him.

ROBERT HOGE: She knew something was wrong, and she didn't even ask the doctor whether I was a boy or a girl. The first question she set (unintelligible) - is my baby OK? And the doctor said no and explained the problems.

MARTIN: The problems were severe - two deformed legs that eventually had to be amputated and a massive tumor in the middle of his face. Hoge's new memoir for young readers is called "Ugly." In the book, he chronicles the struggles and joys of a difficult childhood - his first day of school, being bullied, learning to ride a bike. But at first, he says, his parents weren't even sure that they wanted to bring him home from the hospital.

HOGE: My parents asked my brothers and sisters, should we bring Robert home? And one by one, they all, thankfully, said yes.

MARTIN: (Laughter).

HOGE: My sister Catherine, who was only 4 at the time, reckons the only reason she said yes was 'cause everyone said yes before her. So maybe peer pressure's a good thing. The reason I know all of that was because one of the doctors at the time encouraged my mother to keep a diary. And that was never hidden away from me. It was - it would sit on the couch beside her. Or it would be on her bedside table. And every now and then, I'd ask Mum to read me a bit from her book.

And that kind of honesty and that openness is - was really important to me growing up and, I think, has really enabled me to be pretty open and honest about all of my feelings in the book.

MARTIN: You ended up, over your childhood, spending a lot of time in hospitals - lots of surgeries, lots of doctors' appointments. You describe how those visits to that hospital, the kids that you saw there - other patients - how they helped you come to terms with your own condition. Would you mind reading that a little bit?

HOGE: Absolutely.

(Reading) After a year of being exposed to other kids, I knew most of them didn't have squashed noses or dents in the sides of their heads where their eyes used to be. Other kids had legs. You could tickle their feet. I started to realize that each of the kids I regularly saw in the hospital had something different about them. There was the kid in a wheelchair. There was the kid with a strange lump on his neck.

But I also started to see them at school, too. There was the kid with the harelip. There was the one with the flaming red hair and pale, white skin. There was the girl who was already taller than all of the boys in the class. There was the one really skinny kid and all the fat ones. Each one had something different about them. I just had different differences.

MARTIN: In the book, you have this realization at a really young age, which seems like a mature thing to notice. How much of that insight came to you in that moment? And how much was just as you were looking back on that experience?

HOGE: I think there was certainly a bit in the moment because I didn't get around - I didn't move around the same as other kids. I mean, certainly some of it was a kind of realization looking back and probably thinking about how lucky I was that my parents had gently prepared me for kind of bigger and broader understandings as I grew older.

MARTIN: As a teenager, you opted not to have this major reconstructive surgery that was intended to diminish the appearance of the birth defects. You made a really big decision in that moment to say, no, I don't want to do that surgery. Did you ever, over the years, second-guess that choice?

HOGE: Absolutely - all the time. I made that decision when I was 14. By then, I'd had 24 different operations - some quite small and some very, very large. And my parents did the absolute worst thing they've ever done to me. They said well, Robert, you're almost an adult, so you get to choose. It's a pretty tough - and, you know...

MARTIN: Big choice for a 14-year-old.

HOGE: Well, big choice for a dumb 14-year-old boy, too, I can tell you. We ended up talking about some of the potential side effects of the operation. And because they were moving my eyes a little bit closer again, there was a chance - and a not insignificant chance - that I might go blind. And my brother, when he heard that, piped up and said, well, what use is it looking pretty if he can't even see himself? So right then and there, I decided no, I'm not going to have this operation.

But certainly, you know, when you ask a girl out and she says no and you're thinking how terribly lonely life's going to be when you're 16 years old, you know, you know, you have moments where you kick yourself and think, I should have had that operation, or maybe I could still have it.

MARTIN: The doctors helped kind of stir that concern up, too. I mean, they were like, listen, if you don't have this surgery, you might not do the things that we think are normal things - partner up, get married, have kids.

HOGE: Yep.

MARTIN: So we should say you are married with two kids.

HOGE: Yes.

MARTIN: I imagine there is some satisfaction in having proved them wrong.

HOGE: Absolutely. And look, I have genuine love and affection for the massive changes all of the doctors and nurses who worked on me made to my life. But doctors are tinkerers. You know, they're always in the back shed thinking, ah, if we moved that nose up half an inch, it'd look so much better. But I think, you know, thinking about it now, I'm never going to look like Brad Pitt or George Clooney. So I think I should just stick with my rather distinctive face and go from there.

MARTIN: Robert Hoge - his new book for young readers is called "Ugly: A Memoir" (ph).

Thanks so much for talking with us.

HOGE: Thank you so much, Rachel.