Not So "Whatever" Anymore

"Hey look, she has O.I. too. You should go talk to her." My mother would mumble to me in Chinese. We were sitting in the cast room at Children's Hospital, waiting for my orthopedic to arrive. I looked at the other girl and narrowed my eyes and thought, 'I better be the one the doctor sees first. It doesn't even look like she broke anything.'
"I'm not going to talk to her, mom. I don't care."

"But you both have the same disease!"
"Yeah, and so? Whatever." I murmured and slumped back into my seat.

It really wasn't until about two weeks ago, when this blog began, that I began to open myself up to other O.I.'ers. Sure there is the chat sponsored by the OI Foundation every Sunday, but even then I go there to talk to others - it's not really because they have the same thing as me.
Pre-school was the only time I remembered seeing another kid my age in a wheelchair or other disability. After that my parents mainstreamed me and never brought up an O.I. Conference, meeting, panel, play-date, swim session, or disability camp ever again. Being the middle child of two brothers, and always the only student in a wheelchair at school - I seemed to be well immersed and distracted by the 'able-bodied' community. To me I had all my ducks lined up in my life, and whenever one went scattering my mother or father would barge in and tidy things up again. I climbed ropes in P.E., tried the jungle gym at recess, went on an 8th grade sleep away trip, joined debate team, was editor of the school paper, drank, tried drugs, went on dates, prom, went to college... in many ways it was like I was zooming through able-bodied life, racing ahead trying to prove that I could "do it" too.
Every once in awhile though I would wonder what it would have been like if I had a close friend who was in a wheelchair, or even someone my age who also has O.I. Times like before I went on my first interview for an internship, when I wanted to study away in college, trying on prom dresses, when I first tried alcohol, or when I went to my first club. Fleetingly I would, and still sometimes do, resent my parents for having 'shielded' me away from another aspect of myself, away from another community that I only recently stumbled into. It wasn't necessarily because I wanted another ear to listen to me whine about my "unique situations," or someone who would teach me how to open a door while driving your wheelchair through with an ice cream cone in hand. It's because I was and am curious about people in general. In the past I was told that the O.I. community was small but in the past 2 weeks I have been wowed at the enormity of everyone's generosity, kindness, empathy, and encouragement. At the end of every night I have been checking the stats of my blog, seeing which new corner of the world I have gotten clicks from - the map has shown many from Australia, Finland, Canada, France, Spain, even India! There is nothing "small" about these clicks, and now I understand that there is nothing awkward or shameful about wanting to connect with others who may or may not "have the same thing as me."

Today I hung out with two O.I.'ers for the first time - on a voluntary, completely non-spontaneous, outside-of-the-hospital setting. I thought it would be awkward, that I would not be able to have a clue how to interact with others in wheelchairs, and that I would be totally distracted by the fact that everyone was in a wheelchair. But I wasn't. The only time that occurred to me that we were all in wheelchairs was when right before I left the house I decided to go on to look up places that were accessible in the neighborhood we were meeting in, but then I quickly realized... wait a second, I don't need to do that this time. I can just go and not worry about a thing.

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2 Responses to Not So "Whatever" Anymore

  1. When I was little my mom would try to get me to go to a disability camp. Every summer she tried, saying I would have fun and meet a lot of different people but I made it clear I DID NOT WANT TO GO. But she still tried her hardest to get me to change my mind. I remember looking at one of the pamplets one time and remembered seeing pictures of kids with severe CP...and I'm thinking "why would my mom want me to spend my summer with people like that?" I was nothing like them! One of my arguments was that they would drool all over me. I seriosuly didn't know that I was disabled. Yeah I knew I had OI and I knew I was in a wheelchair but I still refused to think that I was "different."
    When my mom (finally) gave up on that, then it went to the OI Conference. Again, I refused to believe that I was like these people (even though my dad has OI too), I just didn't think I would make any friends or have anything in common with them. That is something I regret now as an adult. I finally went to my first one in 2006 and it was awesome!
    It's interesting that as a kid I wanted nothing to do with other people with OI or disabled people in general. It's weird how I thought I was like everyone else when I clearly wasn't. I went to a regular public school, I had "normal" friends. I went to sleepovers, movies, shopping, etc. And I had no problem when my mom suggested I be a girlscout. Why? Because no one in the group was "disabled" even though I was.
    Now, my twitter list is pretty much nothing but people with OI and now I'm saving (well, trying to) to go to the conf. in DC. It would be my third one. I defintely regret not wanting to go to the conference and wanting to meet people with OI. Now about that I absolutely do not regret saying no to that!

  2. I find it very interesting how so many of us with OI wanted nothing to do with other OIers growing up and some still into adulthood. You look at other conditions and it appears they love to flock together. I wonder if that is true or if they are like us to. The media has an interesting and not always accurate way of portraying things. I have type 3 and I don't have any friends IRL (in real life) that have OI.


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