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Wednesday, September 24, 2008

For Just One Day

For just one day, I would like to be able to forget my "illness". For just one day, I would like to not feel any pain, no matter what I do. For just one day, I would like to have the energy to do things spontaneously. For just one day, I would like to be healthy. I'd go back to this right after, but for just one day...

I would get up at 6:30, as usual. I could get out of bed right then, not ten minutes later, because I wouldn't be tired from not having slept properly. I would walk around my room and get everything I needed, walking back and forth whenever I thought of something. I'd go down the hall to the bathroom, take a shower standing up without wondering whether it was worth it, and return. I'd get dressed and brush my hair standing up, without weighing the consequences.

At breakfast I would sit wherever I wanted, never mind how close it was to the food lines. I wouldn't have to sit with my feet up in class; I could face the table like everybody else. It wouldn't matter if someone shouted or banged on the table. I could shout or bang right along with them. No one would trip over my crutches or have to worry about bumping into me.

After school, I'd go through rehearsal without my crutches. I wouldn't have to wonder if I could be on stage as long as was needed. I wouldn't have to deal with horrible pain coming out of it. I could go to dinner singing all the way, without having to save my breath for pain.

After study hall, I'd hang out with my friends, never thinking about how much I was standing or who was bouncing a ball where. That night when I went to bed, I'd snuggle under my covers, able to have the whole blanket for snuggling without the blanket support taking some away. I'd get real sleep for the first time in months; its quality would not be compromised by blankets hurting my feet.

...Wouldn't that be wonderful? A normal morning, a purely fun rehearsal, a spotaneous evening, and real sleep! It would be amazing. I want that just once.
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Sunday, September 21, 2008

Love Letter

This is an essay I wrote about how the able-bodied view the disabled...well, sort of...it's called "Love Letter" because it serves as a letter to those who love me, and because love is an essential ingredient in the "funny look". As much as I hate that look, I know it reflects my good friends' love for me. I now present "Love Letter".

Love Letter

Hello, my friend. How was your weekend? Did you start that English essay we were supposed to work on, and are you prepared for the chemistry test? Is it true you made out with him in the woods? Good luck in the soccer game!
Wait a second. Why are you looking at me like that? I know that look: the funny look. You�re staring at me as though I�m different from you, as if I�m threatening to shatter into a million pieces at any given moment, and must be handled with care.
Your eyes bore into me, telling me I�m less than your equal, if not less than human. Who defines humanity anyway? Does a deteriorating body cancel someone�s personhood? What about a semi-absent mind? An absent soul? I know I�m not exactly a real teenager anymore, and maybe I never really was. But even if I had been, pain prematurely ages people, catapults them into old age before they�re ready. It has done the same to me that it would to anyone: mentally and emotionally aged me fifty years.
Each day is a struggle: a struggle to get up, a struggle to function, a struggle to keep going and do my schoolwork and still have time for friends. Each day is a struggle to laugh and find joy. I work very hard to find the little happy moments: a pretty moon, a really big mushroom, a special smile on somebody�s face.
Is it branded into the back of my neck or something? I wouldn�t be surprised; the way my face burns under your look--that furtive glance that says you can�t imagine, you couldn�t do it--I can feel the fire creeping into my cheeks, my ears, my neck. Is there some sort of sign, a symbol underneath my hair perhaps, that tells the world I�m different?
What can you possibly think you�re staring at anyway? I�m just an ordinary person. There�s nothing unusual or different or strange about me. I have the same feelings you do. I feel happy for all the same reasons anyone else does, and the same things that sadden other people sadden me. I play with my hair and freak over homework and stay up late talking about boys.
We were all created by a loving God who cares for us. That includes you, and it includes me. Included in that is the old woman down the street who can�t get out of bed. God loves everyone, even the college boy locked up in a psychiatric hospital. God knows we are all perfect, created in His image. God knows.
So if God can see it, why can�t you? Why is God the only one who loves me for what I am, instead of what I�m not? It doesn�t take any kind of special sixth sense to see that I am special and unique for all sorts of wonderful reasons. I am vibrant, multitalented, compassionate, and inquisitive. I see the world with fresh eyes and take delight in the little moments. I live for my passions, my goals, and my dreams.
But still you stare and whisper as I struggle down the hall. You still peep furtively, as if you don�t want to be noticed, peering out from under your hair and into my face. What can you think you�re looking at? What do you expect to see?
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Tuesday, September 16, 2008

Conscious Sleep

I never get any real sleep anymore. The closest I come to really sleeping is five minute catnaps in class. Yes, that's correct: I get my deepest sleep in class, when I can't stay awake anymore.

This is because my feet are so sensitive to the slightest touch. This translates to: socks hurt me, the mattress hurts me, my blankets hurt me. If the blankets fall off their support during the night, and I'm alive at all, I will wake up to fix them (two or three times a night). If I'm totally dead to the world, they will just rest on my feet, for hours. This totally compromises the quality of my sleep; I get beetter rest on the nights when I wake up two or three times.

That's not even accounting for the fact that I have to force myself into sleep to begin with. I literally consciously make each part of my body fall asleep, even as I know my feet will stay awake. I call this "sleeping around pain". It's not real sleep. I know the quality of my sleep is low because I remember it. I know I'm not getting enough REM sleep, and I'm not going into deep enough sleep in between REM phases, and I know this because I'm almost (not quite) conscious of it as it happens. Not that I'm recording experiences as I sleep, but in the morning, I can remember how restful the last night's sleep was...and not just based on how rested I feel, but based on memory.
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