This might come as a surprise to some, especially given the fact that I have a public blog - but I am actually a fairly shy person. It may take a whole semester of school before I start making friends. It'll be more than a month before I'm comfortable in any work setting. I'm not likely to strike up conversation with fellow commuters on the train (no matter how many mornings I see the same faces). I would much prefer a party with 5 of my closest friends than a house party of 20+ strangers and 1 friend.
With that in mind, when people on the street or even acquaintances ask me why I'm in a wheelchair - you can bet that I am shy about my response too. It usually goes something like this:
Person: So can I ask you a question? Why are you in a wheelchair?
Me: Uhhm, well I have this thing.. um basically it makes my bones brittle. I fracture a lot.
Person: Oh so you can't walk at all?
Me: [Internal Sandy monologue: is this person an adult? Is the person a child? Will I see this person more than five times in my life? Is this person also disabled?] And depending on those answers I will either say:
- I was born with brittle bones, it's genetic. I can walk but I need to use leg braces and a walker, or crutches
- I'm able to walk but I need help doing that, and a wheelchair makes that easier for me
- I have this thing called Osteogenesis Imperfecta, brittle bones. It's genetic. I can walk a bit but the wheelchair just makes my life a lot easier.
Rarely do I use the last response. Unless I am in the presence of someone else who is disabled, or if I know that this is a person who I have come across more than a few times, and will probably see often in the future - I don't find myself saying the whole ten syllable diagnosis. Even among close friends this has been true. It may not be months or even a year after I've become friends with someone that "oh I have this thing, called O.I." will ever be uttered.
Explaining myself has always felt a bit weird to me because suddenly I feel vulnerable. O.I. is so much more than just a medical diagnosis to me, so if I were to just rattle of the name it seems half-assed. But if I were to just brush it off, I also feel like I'm lying to myself. Someday I hope to find some middle ground for all of this. (Having this blog and being able to interact with my readers has certainly helped with this!)
If you've been following the blog, you've probably come to find that I'm still figuring out how to live with O.I. each day! And to have something that I don't totally understand be a part of my identity is definitely awkward for me. But I've been trying to embrace the O.I. as I try to encompass other aspects of my identity: being female (and going from girl to woman), being Asian-American, being a student, being an activist, being a writer, being a registered Independent, being agnostic, being a young person.. the list goes on! All the other aspects of my identity I am comfortable with because they are grounded in beliefs, schools of thought, voluntary experiences, the natural passing of time, my family, and from what I am surrounded by in society. Where does O.I fit into all of this? And where will I go to in order to further expand this part of myself? Well, I hope that's where you come in!
