First in a series.
School can be a special kind of hell when you’re the awkward kid in a wheelchair. You attend normal classes, but you don’t look normal.
And then the kids find out you’re smart. Too smart; a smart***. And a teacher’s pet. But that’s only because the teachers print the notes for you and not for the other kids.
I was bullied a lot in middle school, but what kid isn’t? Yet high school is probably where I had the oddest experiences. Lunchtime, held in one large common room, was the worst.
To get a bite into my mouth, I would fight around for probably 30 seconds with a plastic fork. (Metal is too heavy, and I can’t reach my mouth without a fork.) I would delicately stab 1-inch bites of food, cautiously trying to bring it up to my mouth without it falling off the fork, then nudge it precariously against my lips. From there, I wiggled my mouth around, sticking my lips out at weird angles. Finally, the food would reach the hole.
I imagine that was weird as hell to watch for the three dozen or so kids who stared at me throughout the process. Whether they stared for entertainment or in horror, I’m not sure, but they stared so hard that they would forget to chew. Some would point and others would peer from the corner of their eyes. I sat at a table by myself with a care aide.
To save myself from the embarrassment, I would book a library conference room and eat there with my care aide — without five kids commenting about how I could feed myself one day but not the other. It was quiet there, and I could watch a video on my phone or chat with my care aide. Occasionally, I convinced her to feed me while I read a book.
If I choked on my food in the library, my aide gave me chest compressions without half of the student body watching in horror. An adult had to try to manually pump out whatever-the-heck food decided to get stuck, in the same manner that one would pump water.
I loved being in the library. It was a safe haven. If sick, I would do work there instead of in class. If the elevator wasn’t working, I would have classes there. I could save myself from embarrassment.
In 10th grade, the librarians told me I either needed to find some friends and occasionally have them in the library with me or they would no longer let me book conference rooms during lunchtime. They said I was isolating myself from my peers.
Yes, I did that on purpose.
Eventually, instead of doing group projects alone, I started doing them with peers, although much of the time I ended up being the one doing all of the work. This was the only way that some kids would be around me. I didn’t make friends well with people my own age.
I did manage to make some friends, but the relationships did not last to adulthood.
I couldn’t wait to be done with high school. I wanted to move beyond learning things I didn’t love and find out about the things that I did. I love books; writing them, reading them — it didn’t matter. That’s what I wanted for a career.
Next week: I fight for my dream of being a writer.
Note: SMA News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of SMA News Today, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to spinal muscular atrophy.
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