Stable Disability, but an Evolving Self

This is going to be a II part post about how the concept of my self-worth has evolved as my attitude towards my O.I. has changed. 

Self-worth, self-respect, self-esteem, self-image, self-regard... gah!

What do all of these words mean to a child or young adult with O.I.? I don’t know about you but I cringe at them. On the biological level my ‘self’ is broken, lacking in collagen, fragile, brittle, hard-of-hearing, fracture-prone, oddly-shaped, bowed, pip-squeakish, short etc. This is the being that I got to know during the first nine or ten years of my life. Throw in a pair of Helicopter Parents, the opinion I had of myself during these years was usually spelled out in the things that I could or could not do:

“I can’t run or play soccer with my brothers but I read well, I read all of my older brother’s books!”  
“Dodge ball is too dangerous for me in gym class but I can play the piano for my friends during music.”

Everything was so black and white back then, so straightforward and there was always a crystal clear answer for me. I didn’t have to make a thousand decisions a day and I left the risks and the potentials for injury for the adults in my life to sort out. It’s pretty odd to think how ‘carefree’ my life must have been when you consider how much a part of my life O.I. was as a young child who fractured frequently. But of course I wasn’t some kind of robot pre-programmed to understand the genetics of O.I. like my body was. When my parents didn’t let me attend sleepovers, outdoor birthday parties, or field trips to amusement parks those “NO YOU CANNOTS” came at me with a harsh blow.
I remember never feeling like I was the right age, “but all the other kids my age are doing it!” Or that I was somehow even more different from everyone else than just my bone structure; it occurred to me then that O.I. wasn’t just limited to make me look and feel different – but greatly influenced my ability to do things as well. More specifically, if it involved some kind of physical component I grew to believe that I would either:
 1. Not be able to participate
 2. Need adult assistance.
I saw myself as a kid who would always be dependent on someone and my self-worth, like any other young child’s, was deeply seeped and tangled with that of my parents.

In middle school and high school I resented how much O.I. got in the way of me being able to participate in the social aspects of being a kid. Doing things with my friends like going to the mall, out to dinner, to someone else’s house, or to the movies always seemed like such a hassle. I envied the ease that my friends could just jump into the car and drive away without needing to consider accessibility of different places, the weather (do I feel like getting my wheelchair soaking wet today? Have the sidewalks been cleared of the snow?), or transportation logistics (will her dad’s car be big enough for my wheelchair? Is mom available to drive me to her house?). Middle school was the first time that I clearly remember despising O.I. Not to mention puberty made my body appear more alien to me and only seemed to highlight how different I already was from my friends. “Mom NO ONE at school wears Osh Kosh and Stride Rites anymore. GET ME COOLER CLOTHES!” My self-image became defined by the differences I saw between me and my friends, towards the end of eighth grade I was also moving away from the city and friends I had grown up with since Kindergarten – needless to say it was the first time I remember feeling a bottomless pit.

It wasn’t long after that I began to pretend I didn’t even have O.I. at all.

In high school I didn’t give myself excuses and told myself that I could trust my friends to carry me up and down stairs, or that they could carry me through 5ft of snow after a blizzard. One night I even climbed out the window of my house and got into my friend’s car (when he only had his learner's permit!) and trusted him to carry me in through the back entrance of his parent-absent house. (We definitely broke about twenty laws that night…) I did my best to ignore O.I. and its pesky presence. At this point my fractures had begun to taper off but I still had a few each year. I remember rarely ever allowing myself time to rehab when casts or slings came off. After my rod surgery in high school I spent about three days in the hospital before returning to my routine again. It was a mix of trying to assert independence, seeing how far I could go, and being exasperated by the limitations O.I. had been putting on my life. My attitude, at this point, began its evolution into becoming snarkier and more sarcastic. I talked to my teachers like I talked to my friends, I didn’t care about consequences, I was too curious for my own good, but was smart enough in school to know that I would never get into serious trouble. I talked my way out of everything and pulled the “I’m a cute girl in a wheelchair” card ruthlessly and without apology – O.I. became a tool that I abused more than it was a characteristic of my identity.

This photo captures my HS yrs well.

It would take me years later to realize that I was actually pretty depressed in high school. I recognize now that I used what O.I. was because I didn’t want to embrace it. I didn’t understand how, I didn’t understand why I should, and it was like a spare dominant hand that I didn’t know what to use for. The only thing that kept me from going completely over the edge and off track during this time was my writing and my close friends. I was still editor of the school paper and the literary magazine, and my friends loved me for my recklessness and the ridiculous things that constantly spewed out of my mouth; my wit was always on point and my tongue sharp and ready with a comeback. On the surface my self-worth and self-image probably seemed pretty high, I probably seemed like I was an overly confident little punk who was learning how to ‘spread her wings,’ but underneath all of my sarcasm and phony confidence I was in fact a very uncertain and self-hating teen who had no self-regard. 

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