Saturday, September 09, 2006

Thin Skin Disease


I pictured her wearing padded clothes, even on hot days. Her bedroom furniture covered with batting, pillows duct-taped to sharp edges. Her name was Jenny, a friend of my best friend, but to me Jenny was the story of a glass girl, a girl easily shattered. Once, dropping six inches from the monkey bars, Jenny broke both ankles. She had fractured many bones in her body—fingers, arms, feet, hips. How do you move knowing the weight of your own body may split you into pieces? How do you play with a glass girl?

It’s called osteogenesis imperfecta, brittle bone disease. At times I wanted to be Jenny so my encounters with the world would have physical consequences: a crack in my collar bone for the girl with the brain tumor; a fracture of my shin bone for the death of my dog; a break in my hip for boys who taunted my brother for being gay; a million hairline cracks in my fingers for everything else. If I crumbled, if I just crumbled into a heap of chipped bones, my sensitivity would be named, and in naming, legitimized. If it were only genetic, physical, medical. Osteogenesis imperfecta. What do you call thin skin disease? How do you name a glass girl?

--from my work-in-progress, "Bones"


7 comments:

  1. Courtney, I remember the kernal of this piece during our Alphabet Book project. It is absolutely beautiful writing. I hope your momentum on this project continues...

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  2. Beautiful, heartbreaking, so lovely. Thank you for posting it.

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  3. Wow. What impactful, strong, beautiful writing. And art--as always. I'd like to know more about the project you're working on.

    Also, can I post a link to your blog on Aubergine?
    --Olaiya

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  4. Thank you for your comments, you lovely three.

    "Bones" has had a few incarnations already, and at present, I'm working on expanding it. It once was a poem, but I've decided that it is calling to be prose -- and perhaps will become the basis of something much longer, maybe even a book at some point.

    Olaiya, I would love to be added to your blog links. May I also link to you from Quiet Girl Gallery?

    Courtney

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  5. Sounds interesting. I'd love to hear more about it on Saturday at the soiree you and Walter are hosting.

    And I'd be thrilled if you added a link to Aubergine!

    See you soon,

    Olaiya

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  6. What was it Oliver Twist said to that food-server?


    Soapy

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  7. This very thought provokin easy and the a lesson to be ready for work hard to prevent the way of such disease is for the medical fields people.
    I highly appreciated the outhor of this post. such post provide the awarness about different off light topics. this effort would be the mean for the complete end of the disease while more specialist work on it.
    One such example is MJ disease vitiligo. after the Michael surgery many people criticized him and wrote many post after this peopl began to write post about vitiligo and result of this awareness, today hundreds of big health organization are workin on vitiligo, very near to the solution of this skin conditon for which some time ago commonly said that it is hard to cure.

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