I've got my own set of bony deformities (in my feet, giving me fits with pain this summer) so I know what you mean about living with that word. I enjoy reading your blog. I love your insight about the 'sculpture' and the mobility devices that help you get around, but also define your life. Keep on!
I remember my third grade teacher insulting me, in a nasty "corrective" voice to straighten my posture. Would if I could! Basically I'm glad to be alive (1) not brain damaged (2) and able to walk (3) thanks to a lot of luck and help in the early months. But I've always felt more uncomfortable when someone said I was pretty than when someone made fun of how I walk (including strangers.) Yes, I have appalling bone structure, but it gets me where I'm going and for that I'm grateful. Not that I'd dare take on your Michelle! You're brave!!!
Hope you can sort out your cushion. I had to laugh. Maybe the seat specialist meant you need to bring your own, by that I mean "steatopygia", of which I am massively endowed.
Glad you posted today. I was feeling emotionally crummy so it was good to hear from you.
I offered Stephanie my wheelchair cushion during her marathon booksigning session last Saturday. I inherited it, and it's made of rubberized plastic, as far as I can figure out, an air cushion that is phenomenally comfortable. It has all these folds, kind of like a brain, and adjusts to you perfectly. The cover on it is old and trashed, and I once went to see if I could replace the cover. No, but they could sell me a new cushion. Oh. How much? $250, the salesman innocently replied. TWO HUNDRED FIFTY FRICKIN DOLLARS FOR A CUSHION?! Uh, right, thanks, I think I'll keep the one I've got.
I can just hear all the knitters who are now going to tell me to knit and felt a new cover for it. Hmm. Maybe a pillowcase cut in half?
Inside, I'm quite tall, and muscular. Did you ever see Grace Jones in that Conan movie? Like that. With that kind of butt, too.
My Noah has 20/400 vision in his good eye - the "bad" eye is 20/1500. He can see quite well out of the center of his glasses, but has very little peripheral vision - makes it hard to track balls for ball sports, and to see spider webs and flying insects, which explains his paranoia about being outside. (You go for a walk with him, and go under some branches or next to bushes, and he seems to be afflicted with St.Vitus dance or something.) Anyway, some kid told him that he was legally blind (which he technically is) and he was just appalled. He cried when he told me - he said, it's like I'm DAMAGED. (Which is interesting, because that was his idiot father's first reaction, too - it didn't bother me that much, except I felt guilty for not having it diagnosed earlier, though to my credit, I had been trying to get his doctor to check his vision for a year before we finally got a referral.) He doesn't think of himself as blind at all. He knows he has limitations, but it's just not firmly in his self-image. In fact, in early self-portraits, he left his glasses out entirely.
I know I'm way over here, but I don't think of you as deformed (heh, or saintly, either). From the pictures I've seen of you, I think of you as cute.
:Sometimes, I wonder what I’d look like if the inner me could be manifested outwardly…"
It would be a wonder to behold.
Isn't it interesting how we measure ourselves against how society defines beauty? My french friend ben once told me a story about a classmate who was one day overcome with anger and shame because sitting in a literature class the professor kept talking about all the metaphors to evil and ugliness associated with the color black. She is a black girl (north african, i believe) and was taken aback at how much of classic, western european literature is filled with such notions.
I like to think of my inner-self as kind of like my own secret. Only those who have bothered to look past the outward shell gets the reward of a meaningful friendship with me. It seems that you have many in your life who are enriched with that reward.
I've got a friend who is struggling to come to terms with physical disability, and this is exactly what I am hoping he achieves - that transperancy his accomodations. That it makes no difference that he has to do things differently now - what really matters is that he still does them.
I'm thinking, I'm still thinking...oh bother...you're a force to be reckoned with and all I can come up with is a petite Katherine Hepburn!
I KNOW you can kick my butt. What I loved most about that moment was the look in your face. It spoke volumes. Full of self confidence and, may I add, attitude.
Oddly enough, there was an article in the Star on Friday about a man who was born with a disease that affected bone fusion in his skull. He lived with teasing and taunting for years.
He was able to finish high school but dropped out of college. Long story short..he got a job, underwent various surgeries etc. He is now going back to college. He said the struggle to feel normal on the outside stems from feeling "normal" on the inside.
It's amazing what we endure through life and allow others to shape our feelings about ourself. I think that this is being reinforced by all these reality shows ie Simon...
I'm willing to donate some of my butt to help yours Lene....Quite cushiony...
Very thought provoking post Lene. I wonder if we all have a different image of ourselves than what others see. I know that my perception of myself is off, everytime I see a picture of myself, I look at it like I don't know it is me. Yet when I look in the mirror I think I see me.
And in a less than literal way, I think the inner me is much much cooler, limber, and graceful than the outside me.
We are all human, and by nature that means we are all imperfect in some way or the other. So I wonder if we make ourselves closer to the ideal in our mind's eye? Guess that would have a lot to do with self esteem, huh?
Thanks for making me think of something other than work.
Smiles,
Michell
I don't think I would want to annoy the inner you. ("Don't make me angry. You wouldn't like me when I'm angry.")
By the way, what I didn't say up there, was--part of me was amazed that I even own, much less ever use, a wheelchair cushion. The inner me is still getting up at 6 am to racewalk four or five miles before the little ones wake up.
"Yet, in a shining moment of complete delusion, I knew I’d win the fight." Go, Lene! We have to have that inner vision before we can expect the rest of the world to see it.
btw, I'm e-mailing you some posterior cushion that I really don't need any more 
I can hear the murmurs of the crowd - "look at that deformed woman beating the crap out of that other woman"
As you can probably guess, I got tired of not using perfectly good words just because someone else doesn't like them. The word 'deformed' describes an instantly recognizible concept. Not just as a medical term. Regardless of the precise word - deformed, disfigured, misshappen - they all describe the same idea. And your idea of the word, and my idea of the word, may not be exactly the same, the curse of language. If your idea of the word includes 'ugliness', I can't be held to your definition. It's not my definition. If I use the word to describe someone, it carries no connotation of ugliness. If I use the word to describe you specifically, it includes the extra connotation of 'beautiful'.
At some point in describing a person's appearance, words have to be used, and there's no words that don't describe a deformity that don't carry the idea of deformity with them. It's your reaction to someone pointing out the obvious that makes the word hurtful, not the way people use it.
I'm fat. Very fat. Obese. Morbidly obese. A tub of lard. Big-boned. Overweight.
It doesn't matter which term people use - the moment they use any of them, they have drawn attention to something very obvious about me. Something I really hate about my appearance. When someone says something about there being 'more to love' about my size, I know they're trying to be nice, but it's still pointing out something I wish didn't exist. That's my reaction to a perfectly well-intentioned term.
On another note, any copy of the Oxford Dictionary you might have is an abridged version. I hear that a couple times a century they print the full edition which covers dozens of volumes.
It's amazing how words can cut...I remember a pianist I had quite the crush on in college who became my friend for a short while...even after being a friend, he felt able to say. "When I first saw you I was actually repulsed, but really, you're not so bad!"
Heh. That of course was the beginning of a very nasty end to any friendship with him.
Love this blog.
Commenting by HaloScan
