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.
Wednesday, September 24, 2008
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".
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?
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?
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.
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.
Sunday, September 14, 2008
Pretensions (AKA chutzpah, for my Jewish/Yiddish speaking readers)
CAUTION: (If you're from AHA and you like my houseparent, don't read further...you've been warned.)
So I recently found out from my doctor that I will need to go to a hospital in Philadelphia. There they have a month-long, extremely painful treatment program that only sometimes works. If it doesn't work, I will be spending the rest of my life in pain.
As you can imagine, I was not pleased by this news. I have been crying off and on since I received it. Tonight, I happened to be about to cry when we were supposed to be cleaning our dorm for room inspections. My housemother yelled at me to go to my room so I wouldn't be in people's way (great "mother" she is), so I went, and burst into tears as soon as I got there.
I had been crying for about ten minutes or so when she came in. She told me that she knew what I was going through, but she also saw when I chose to decide everything was OK, and she'd like me to make more of an effort. Through my tears, I firmly let her know what I was upset about; her reply was that I irritated people in the dorm by being upset without explanation.
Now. What is wrong with this picture? Let's start at the beginning...
1. An obviously upset student, who everybody knows is in pain, is yelled at to go to her room as if being upset breaks some absurd rule. (Although considering who my houseparent is, I wouldn't be surprised if it did...)
2. She interrupted a crying student to demand an explanation. Ask for one afterwards, if you must ask!
3. She obviously doesn't know what I'm going through--doesn't have a clue what I'm going through--or she wouldn't be telling me to make more of an effort. Anyone who does know what I'm going through knows I do nothing BUT make an effort every waking moment of every single day.
4. I irritate people by being upset without explanation? No, not at all...most people, those who are actually capable of sympathy, realize I'm going through a lot and honestly are concerned when I break down. Concerned, not irritated; concerned, not nosy. They don't need an explanation in order to give me their sympathy.
Which brings me to my last point. I do not, I simply do not, owe anyone an explanation of anything. I sometimes explain some of this to some people because I care what they think of me. But no one, NO ONE, has the right ot barge in on me while I'm crying and demand an explanation. This is why we have doors that can close.
So I recently found out from my doctor that I will need to go to a hospital in Philadelphia. There they have a month-long, extremely painful treatment program that only sometimes works. If it doesn't work, I will be spending the rest of my life in pain.
As you can imagine, I was not pleased by this news. I have been crying off and on since I received it. Tonight, I happened to be about to cry when we were supposed to be cleaning our dorm for room inspections. My housemother yelled at me to go to my room so I wouldn't be in people's way (great "mother" she is), so I went, and burst into tears as soon as I got there.
I had been crying for about ten minutes or so when she came in. She told me that she knew what I was going through, but she also saw when I chose to decide everything was OK, and she'd like me to make more of an effort. Through my tears, I firmly let her know what I was upset about; her reply was that I irritated people in the dorm by being upset without explanation.
Now. What is wrong with this picture? Let's start at the beginning...
1. An obviously upset student, who everybody knows is in pain, is yelled at to go to her room as if being upset breaks some absurd rule. (Although considering who my houseparent is, I wouldn't be surprised if it did...)
2. She interrupted a crying student to demand an explanation. Ask for one afterwards, if you must ask!
3. She obviously doesn't know what I'm going through--doesn't have a clue what I'm going through--or she wouldn't be telling me to make more of an effort. Anyone who does know what I'm going through knows I do nothing BUT make an effort every waking moment of every single day.
4. I irritate people by being upset without explanation? No, not at all...most people, those who are actually capable of sympathy, realize I'm going through a lot and honestly are concerned when I break down. Concerned, not irritated; concerned, not nosy. They don't need an explanation in order to give me their sympathy.
Which brings me to my last point. I do not, I simply do not, owe anyone an explanation of anything. I sometimes explain some of this to some people because I care what they think of me. But no one, NO ONE, has the right ot barge in on me while I'm crying and demand an explanation. This is why we have doors that can close.
Tuesday, September 2, 2008
Changing Perceptions
The absolute coolest thing EVER happened to me today; it made me so very happy...
I ate lunch today with three friends: two six-foot-tall athletic guys, whom I'll call "Dave" and "John", and "John"'s sister, "Lucy". We had quite a nice time eating together, and after lunch, "Dave", "John" and "Lucy" left the Dining Hall without me. This is not unusual; last year (before I got my crutches) I really could not have kept up with them, and I wouldn't have expected them to restrict themselves for me.
But today I was feeling really wonderful, and I did have my crutches. I came out the door, and shouted, "'John!'" and they all turned around. I continued, "If you wait a moment, I can catch up to you! It'll just be a second!" "Lucy", who did not know me last year, just watched to see what would happen, what I'd do. "Dave" and "John" both stared at me with these looks on their faces, like we all know a moment really means five full minutes, and who do I think I'm kidding?
I decided to just fully enjoy myself without worrying about the consequences. I started almost flying down the path on my crutches: moving them ahead of me and then swinging about two steps past them. Within thirty seconds, I had caught up to my friends. "Dave" stood there grinning at me; "John" stood there just staring in in utter confusion. I turned to "Dave" and said, "Told you;" I turned to "John" and said, "What?" And then I just fell in step with them.
We talked about me and my crutches and the added mobility they give me for a while, and halfway through the conversation, "Lucy" turned to me and declared, "You're awesome, Sarah."
I ate lunch today with three friends: two six-foot-tall athletic guys, whom I'll call "Dave" and "John", and "John"'s sister, "Lucy". We had quite a nice time eating together, and after lunch, "Dave", "John" and "Lucy" left the Dining Hall without me. This is not unusual; last year (before I got my crutches) I really could not have kept up with them, and I wouldn't have expected them to restrict themselves for me.
But today I was feeling really wonderful, and I did have my crutches. I came out the door, and shouted, "'John!'" and they all turned around. I continued, "If you wait a moment, I can catch up to you! It'll just be a second!" "Lucy", who did not know me last year, just watched to see what would happen, what I'd do. "Dave" and "John" both stared at me with these looks on their faces, like we all know a moment really means five full minutes, and who do I think I'm kidding?
I decided to just fully enjoy myself without worrying about the consequences. I started almost flying down the path on my crutches: moving them ahead of me and then swinging about two steps past them. Within thirty seconds, I had caught up to my friends. "Dave" stood there grinning at me; "John" stood there just staring in in utter confusion. I turned to "Dave" and said, "Told you;" I turned to "John" and said, "What?" And then I just fell in step with them.
We talked about me and my crutches and the added mobility they give me for a while, and halfway through the conversation, "Lucy" turned to me and declared, "You're awesome, Sarah."
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