Most of the time, it doesn't matter. Most of the time no one mentions it. It just is. The sky is blue, the Earth is round and I walk funny.
I don't exaggerate; it is usually of very little consequence or importance. There are moments, days, or even stretches of time when it does matter. Times when someone says something that brings it to the forefront in a way it doesn't deserve to be often. If a friend of mine adapts to a challenge and then laughs about it (like it's the most ridiculous thing ever), I might find myself thinking "Oh, yeah I'm different than you." Those kinds of stories resonate because my disabled mom friends and I have made those adaptations to cope without a second thought. When someone rails against keeping a toddler on a lead. When someone talks about me like I'm a decorated war hero for taking my kid to the playground. It matters.
I'm not saying it should never matter - of course it matters sometimes. It matters greatly sometimes. My existence is different than a lot people I know. I live in a physical flux. I am not a normal specimen of humanity. I have not been injured and recovered back to some magical epicenter of functionality. I started out with a set of issues and challenges to adapt to. When there is an injury, surgery or other change in circumstance, I adapt. I am changed each time, and each change is a link in a chain. It's not a ripple in a pond that will still itself again.
It's not linear. Injuries, healing, back to normal? Not quite. Yesterday, you saw me hobbling around unaided by crutches and today I'm in the wheelchair? In your world it means there's something wrong, but in mine it's day-to-day adaptation. I'm not "getting worse", I'm coping with uneven terrain, distance, a swollen joint, a speedy preschooler. I just didn't feel like walking/finding my other crutch, needed both hands, wanted to wear a bigger purse. You change clothes, I change my method of mobility (or whatever else is needed). You take Aspirin for a headache, I walk less when I need to.
I'm not saying it's never linear. Particularly after surgery there is a reasonable progression, but in my day to day life things are always changing. Please don't take any of my comparisons here as hostility - on the contrary, I adore all my able-bodied friends and fans so much that I felt I could share. I am not trying to elicit pity from you. I see what is different between us which is tricky when so much is the same.
Maybe I'm just permitting myself to record a stream of consciousness with no real significance to anyone but me. In which case I'll indulge further and say I don't have any aspirations to be "other" than I am. We all have struggles, it makes us human. I never seriously longed for a "cure" from what is, as I stated at the start, simply a fact of my existence like any other.
It's all in the "eye of the beholder", as Rod Sterling so nicely put it, it is merely "an accident of birth."
Katie, this is my favorite of your blog entries. It is so well written, so honest, completely from the heart, and provides insight a lot of us could use. Love it! -Lara
ReplyDeleteI admire your ability to say hey I'm not a full time X or Y and just get on with it
ReplyDeleteBecause as an adult with CP I just can't do that as a kid I sore and declared I was going to going to be a full time wheelchair user because part time use drove me up the wall
It mattered a lot more when I was younger too. I couldn't be seen one way or the other in one circumstance or another.
DeleteAs I've got older I've realized it's all me. Whatever works is what I should do. As a Mom embarrassment is almost never a factor. (:
From the age of 3 to the age of 16 I walked with crutches, there were a few periods in there (mostly after surgeries) where I used a walker, but I was always walking. Then I got a manual chair and people were freaking out thinking that I was "getting worse" or even dying. Since I got my first chair, I have gone from manual chair, power chair to crutches and back again, depending on the situation.I think people without disabilities (and some people with disabilities depending on how they were raised) see disability is very black and white. You either are, or you're not. They can simply not wrap their minds around needing the chair some times but not always. They get freaked out, some get hostile, others get mean.
ReplyDeleteFor me, the hardest part is making the choice based on my needs and not the needs of others. For example, not taking my chair even though I need it because it is too hard to transport, or takes to much time etc. Sometimes people in my life even give me a hard time for wanting one aid over another. It's times like that when I wish it was linear, that i needed the chair all the time, so people would stop unintentionally making me feel guilty or lazy.
I can totally relate and it only gets more complicated with kids in the mix.
DeleteI wonder what that drive to label things is all about? It's ok to be different if people know exactly what category of different you are and you don't deviate.
Katie, I loved this piece. Someone told me the difference between western and eastern medicine. Western medicine tries to cure you--to fix you so you are better--like you were before. Eastern medicine heals you--you will never be as you were before. You will be something new, entirely. Your work reminds me of that eastern view. -Susie
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