Would I Choose to Not Have O.I.?

Yes.. on some days. The truth is on some days there is no doubt that I would rather not have to deal with my collagen defect. There are some days when I would rather not have to pay attention to read lips, would rather not need to use my wheelchair, would rather not have restrictive lung disease, and would rather not have to get some minor yet suspicious-looking-bruise checked out.

But for me, that kind of thinking is equivalent to when anyone of us wonders what it's like to be someone else: what would it be like to be Jeremy Lin? What would it be like to be Michelle Obama? What would it be like to be Katy Perry? Or Katniss Everdeen? Except in this case the question would be: what would it be like to not be me?

I am neither a famous athlete, political figure, singer, or even a fictional character in a book. So the answer to that question is I have no idea what it would be like to not be me. Trust me, I am all for uncertainty and the excitement of the undiscovered - but this unknown freaks me out a bit. Okay, a lot. It took me a long time to come to my own conclusion that the O.I. has a lot to do with who I am. For quite awhile and all throughout college I separated the two, and in my earnest efforts to keep these two separate - I felt like I was constantly trying to pull two magnets apart. It was only recently that I had a sort of 'tipping point' and came across that epiphany where I was able to say, okay - owning up to my disability doesn't weaken my identity. (Although I am the first to admit that there are still many days when I think that it does!) I will add this: this is one of those life development 'thingamajigs' that each person must reach on their own. And not every person will come to the same conclusion I did. Different perspectives - that's what's so great about humanity! 

Anyway, back to the topic of this post: 

I dream about not having O.I. all the time, and have been for as long as I've understood how to 'play pretend' in that way little kids do. In my elementary school days, wondering about not having O.I. meant daydreaming what it'd be like to trample across the grass after the soccer ball during recess. In middle school, wondering about not having O.I. meant pestering my doctor about how tall will I eventually be? And will I also have a huge growth spurt like my friends? During high school, wondering about not having O.I. involved putting all my whimsical daydreams into action - or at least as many of them as I possibly could... without my parents catching me, or without breaking the law, or getting expelled from school (read as: testing everyone's buttons. I was a pain in the @$$!)  In college, thinking about life without O.I. meant raising my standards and levels of engagement to match those of my classmates. It meant going to class despite having one wheel on my wheelchair broken off, it meant pushing off medical appointments because finals were more important, it meant ramen noodle dorm-life living, and it meant blazing the trail to study away programs just to prove I could also have a normal college student experience.

In other words, wondering about life with O.I. has actually opened me up to more experiences in real-life than I could have dreamed up. Daring to ask that question, and in many cases trying to follow-through on those curiosities taught me a lot about my own self-limits, what it means to take risks, and ultimately what it means to live with O.I. Because at the end of the day I haven't actually been able to get rid of my collagen defect; at the end of the day it has just been another 24 hours of choosing to actively live alongside O.I. outside of those daydreams, and fully within the span of the day-to-day adventures.

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