Oh, so THAT's what an identity means? Ok.

During my time at conference I met many people around my age (20 - 30 somethings) who all, at one point or another, held a similar outlook as myself on being an O.I.'er: "When I was younger my parents took care of all of this stuff for me. I wanted nothing to do with this; now I'm older and I'm learning to have more responsibility.." Usually this comment was followed by some half downwards turn of the lip, a shrug of the shoulders, and an uncertain sigh.

It could be said that I am infamous for not wanting to own up to being an O.I.'er for most of my life. We could get into the psychology of how my parents raised me (and my two unaffected brothers), or we could talk about how Asian cultures generally view disability negatively, or I could talk about how being surrounded by non-O.I.'ers allowed me to easily shove this other side of me in a dusty corner under the bed. It then only reared its awkwardly painful head from the dust mites as necessary.

But what I actually wanted to talk about is how attending conference allowed me to understand what having O.I. means... in a way that I had been too afraid to recognize. At least 50% of having O.I. is associated with the genetic bone disorder, and being a person who is prone to fractures. This is the 'identity' that I accepted for the longest time ever, but it wasn't until I attended conference that I have only begun to get beneath the science and medical jargon. I think what I'm trying to say is that my identity doesn't need to be wrapped up in the experiences I have had - not completely anyway. Yes, I am someone who is fragile but that doesn't make my identity fragile! It seems almost silly and obvious for me to say this but when your experience of having O.I. is limited to hospital beds and x-ray machines - O.I. was/is just a symptom of who I am as a person. Many of the posts I have written in this blog are my ramblings that result in my juxtaposing being a wheelchair user, or a disabled young person next to various childhood or day-to-day experience I have had.

Have you noticed?

I am not sure that I have really ever gone into what being an O.I.'er means for me. Maybe, though, if you took snippets and sentences from an array of blog posts we might see an outline of what I think it means... but I have done a (splendiferous?) job of avoiding the topic dead on. It's a side of me that is incredibly vulnerable. I sit here typing this incredibly nervous just saying these words! I don't like not knowing aside of me, it makes me feel uncertain and there is a lack of confidence in my gut that is slowly erupting - but the difference this time is that instead of turning away from that discomfort I'll let it sit inside of me.. and I'll deal with it in small doses. Knowing that you are here reading this from afar or maybe from the next town over gives me comfort, so thanks for coming along on this adventure with me. Sorry, I don't have any liability papers for you to sign... hope you've got good insurance!

All kidding aside -- The truth is I don't know what having O.I. as a part of my identity means, at least not yet. (Hopefully I'll get there soon - and when I do like d'uh you're gonna hear about it..) At the conference I saw that people were at different stages with managing their O.I. There were parents who were helping their young children navigate elementary school, there were older women who were concerned about the effect menopause will have, couples who had questions about having a child, teenagers who struggled with bullying or dating, young 20 somethings who dreamed about their ideal jobs.. it's interesting, right? When we see O.I. as not just a symptom or a diagnosis, but something that is a part of our identity - it becomes something that we are less easily able to separate, to leave behind the hospital curtain. Each day of writing this blog O.I. seems to sidle up next to me and I have been trying my best to scoot away a bit. Sometimes I'm more successful at creating that distance than other days. Most days I probably am creating a rift between myself and that budding identity that may be causing more harm than good. It's apparent to me now that like magnets we are inseparable.

As I had mentioned in this post while reflecting about conference, O.I. is generally the last thing on my mind in my everyday life. Unless I have a fracture. I'm not saying that all of a sudden I'm going to be wearing a t-shirt that has O.I. on the front and a picture of a collagen mutation on the back.. I'm also not saying that this'll be the first thing that I bring up when meeting new people. It probably won't be on my mind on an everyday basis. What I am saying is that I have accepted that it is a side of me that has taken up more of me than I have allowed it to do. And in that sense is how I have probably been hurting myself. What right do I have to deny myself from... myself? That's just sad! But I am relieved and ecstatic to find out I have the full control of changing this course of action. One step at a time, slowly.  

So, what do I do now?

Recognizing that I am uncomfortable with this is probably a good first step. Trying to get my thoughts on it outside of my overly active-analytical brain is another good step. Beyond that? I hope to continue on the path that I'm on -- exploring new opportunities, being comfortable with my own uncertainties, and somehow in the explosion of those two things together.. learn more about my identity.   

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