Coming to 'Grips' with It

Unintentionally I got into a conversation with a group of fellow OI'ers about when they were ready to 'deal with it.' That of course being O.I.
I find it almost unnerving that many of the adults I have spoken to have all said a similar thing: "it wasn't until I was 30" or "it wasn't until after I was done with college" that 'dealing with' being an individual with O.I. was something that needed self-action. That is, more action than the splints, casts, x-rays, surgeries, rods, physical therapy etc already required on our part. I have also heard many folks say: "when I was a kid I wanted nothing to do with anyone else with O.I. or even hear the words O.I." And when I was younger I was much the same way! Mom would try to nudge me to talk to the other O.I. in the waiting room and I just rolled my eyes.

There are no credentials in psychology or sociology after my name and nor will there ever be. So I don't feel like I can really comment on why this pattern occurs in any official way.

After a fracture happens and it has been set in a cast or a splint, my attitude is basically: just as hair grows after a bad hair cut bones will heal. As a child it was easy to see through this 'OI lens' because that was my only job - to interact with the world that was no more than three feet in front of me. Anything else farther than that, or required any more depth was the responsibility of the adults in my life. I didn't have to 'deal with it' then because I didn't see anything else that needed to be dealt with!

What was frustrating was when others around me, those who had 'come to grips with' my diagnosis for themselves, acted on the assumption I was at their level of acceptance. I know, it is probably weird right?
Obviously a child with fragile bones should know why her parents are concerned about the first time she is sleeping away. Obviously a child with brittle bones should know why her teachers won't let her whip water balloons with everyone else on field day. Obviously a child with O.I. should know why going to the gymnastics birthday party makes everyone walk on egg shells.

But that's the thing - it's not obvious to a young child with O.I. if she doesn't realize it. At least it wasn't obvious to me. Until something happened, until that fracture was burning through my skin it wasn't obvious to me anything bad could possibly occur! If it didn't exist in front of my face then it just didn't exist at all. This was especially true when what existed in front of my face were friends and classmates who launched themselves at each other.

And this is why I'm glad that I was able to come to terms with having O.I. on my own. Well, okay.. life events definitely nudged me along... but still: I am the one who decides when and how I want to 'deal with it' these days. Adolescence happened, and that meant I couldn't get into fights with my parents about borrowing the car like my older brother did. College happened and that meant I had more research to look into than just whether or not my major was offered. Employment happened and it meant I had to worry about more than just showing up on time for my interview. These are all markers and life events that let me grip onto another piece of O.I. each time. Eventually the depth and field of O.I. expanded and I came to understand how two letters fit into my life, and the community that I carry day-to-day activities in.

On some days this line of sight I've got is very clear and on other days it's not so clear. Some times my grip on O.I. is firm and I clutch it close to me. Other times I'd rather fling it off the highest mountain and not bother seeing where it lands. And still other times my grip slips and I lose sight of it completely. Whatever happens though I'm okay with this knowledge: it is always ready for me even if I'm not ready for it.

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