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Tuesday, March 5, 2013

Who would you be?

     Growing up my younger sister often asked me, “Do you think you'd be the same if you weren't in a wheelchair?” I was young then too, so of course I said “yes.” I didn't see the real answer until I had lost some of my naivete about life. The real answer now is, “I don't know. Maybe but probably not.”

     My blog isn't going to focus around SMA, this isn't Wikipedia. For those of you that don't know I was born with a rare genetic disease called Spinal Muscular Atrophy, that kills muscles over time. It's the largest genetic killer of children under the age of two. I never crawled or walked. I'm on the weaker end of the wide spectrum and everyone who lives with this disease is different. I've lost my smile, the use of my arms, and many other things over the years. Not everything I've lost is so obvious.  SMA isn't who I am but it is a significant part of my life and played one of the leading rolls in making me into the young woman I am.

     A few rights of passage, some dreams, and most of my independence has disappeared over the years. Most people don't know this about me but because of all the physical help I required in school I actually spent my pre-school year in a special education class. I remember hating it. We never learned anything, we would just sing and do arts and crafts. But in retrospect, I do not believe the respect I have for people with mental disabilities would be what it is today without that experience. Being in that class is one of the key pieces to the development of my personality.

     I'm quiet because I'm used to most strangers not having the patience to try and understand me. Once upon a time I was an outgoing little kid who didn't think twice before speaking. Now more often than not I think too much before I talk to strangers. Despite the fact that I'm typically afraid to converse with new people I do regularly say to “hi” strangers passing on the street. “Hi” is a word that can pass through my lips and everyone will understand it. All through middle school there was a small group of people, less than ten, that ever talked to me. During passing periods I waited for someone, anyone, to say “hi” to me and hardly anyone ever did. Years later I realized that I couldn't make a stranger's day by smiling at them but my simple “hello” might suffice. More friendly greetings would have made my middle school years easier but middle sucks for everyone.

     I know for a fact that I wouldn't be as “wise” as people tell me I am if I didn't understand the truth of my disease, if I hadn't watched many friends weaken and eventually perish. I'm 20 but I tend to feel disconnected with many people my age and I don't understand a lot of their actions. My sister says I'm a “grandma” and I am, but I'm trying to be better. I do not always need to analyze the impact a decision is going to have on my life. Sometimes it's better just to jump than to worry about how that same jump is going to matter in five years.

     Alas, I'm not writing this for you to think “Aw, pity Allegra.” If there's anything I detest it's pity. I'm writing this because if heart-break, rejection, loss, and the importance of adapting never made themselves known to me I would not be who I am; I would not have the amazing friends I have, I would not have some of the brighter memories I hold in my heart and cherish during the darker days. We are nothing if we are not the products of our pasts.

Ask yourself this, “Who would you be if [insert various memories here] never happened?”

1 comment:

  1. Mine is and always has been who would I be if not you and your sister's mom? I don't believe I ever want to know that answer. you both changed me profoundly. xxoo