Showing posts with label disabled body image. Show all posts

You are a miraculous thing. As a young girl and now a young woman - I'll admit that I haven't always positively acknowledged your worth, and ingenuity. This is a letter so that you can know how I have felt about you over the years, and it's also a letter for you to hold over my head on those mornings I say ugh I have to dress you again?! 

As a kid I felt bad for you. I put you through so much crap in those early years, seriously! Hey body, let's go race around the neighborhood on my bike today. Hey body, I wonder what happens if I tried to slide head first down the stairs. Hey body, let's show my guy friend just how hard I can punch him. Hey body, we're going to try rope climbing today. Hey body, let's dive into the massive 40ft wave pool! Most of those things were not the wisest decisions I have ever made and yet you went along with it. Most of those things wound up with you getting a cast put on somewhere, and all of those things were absolutely worth it. You're like my personal Magic 8 Ball: I rattle you around and moments later you reveal some truth that tells me how I should next proceed.
Then of course there's all the crap that all those other people put you through. And obediently you allowed it to happen, most of the time. Hey body, they're going to break you into 3 pieces and stick some metal in you. Hey body, he's going to bend you this way and that way to get a better x-ray. Hey body, she's going to make you break a sweat so you can learn to walk. Hey body, he's going to pick you up and swing you over his shoulders. And that's how I learned to trust, to know my limits, and to understand acceptance - because there are many things that happen that are completely out of our hands. So we can either be at peace with it or learn to work around that metal rod you rejected, after two years.

 You are my one and only, and it really wasn't until fairly recently that I have come to understand how to act accordingly. Sure growing up I was always told: "This is the only body you'll ever have, so eat healthy and take care of it!" But to a four, six, nine, or fifteen year-old time is limitless and opportunities are endless. We think that there's always going to be another occasion for a do-over, we can always take-it-back, or try-again... and while in many instances this is possible, since this is the one instrument and version of you that I have - I know I need to add to your uniqueness carefully. It's much tougher to erase a mark on you than it is to add, and no I don't just mean those things I add after the holidays!

There's petite, small, medium, large, obese, curvy, bell-shaped, pear-shaped, OI-shaped, type III shaped, type I shaped, average or above average... The labels that I can pluck out of thin air and give to you are infinite. There's pre-holiday and post-holiday, there's summer and winter - body, there's svelte and rugged, post-surgery and pre-surgery... there's media, ads, social expectations, "the ideal"... Quite frankly, body, I don't understand how you haven't cracked under this pressure! There have been many times when those labels hurt more than getting hit by a ball, and yet you haven't broken down from all of those categories. You've maintained being you. You've stayed true to your scoliosis, short-statured, long-armed, bowed legs, barrel-rib-cage, and easily bruised self. And even if I were to sit next to some other young woman with the same type of O.I., the same age, the same surgeries, the same hearing-loss -- you are still different, you are still you. This closeness and intimacy that you have revealed to me, and that has evolved over the years, is a little mind-boggling if I really let myself think about this.
I didn't always think about your differences in a total awesome-sauce spotlight. I used to be angry, jealous, and resentful of your differences. Sure, I'd think, it's easy to tell girls to love their body, to ramble on about girl-power - but does their body look like this? And is their body limited like this? There were never posters of a girl (delightfully clad in pink and pastels), jumping in a field of flowers and bunnies whose body looked like mine. I didn't exactly have anyone in my life I could talk to, and I'm certain that even if that space and individual were around - I didn't even have the words to express my confusion. Mom would just tell me things she "is supposed to say." My doctor would just talk about eating healthy. Teachers? Yeah right - like I was going to raise my hand in a class full of able-bodied peers to ask that. So I bundled you up the best I could, hidden under wraps of cool composure and a care-free attitude. It became a feeling that bounced around my chest, and then as I got older it vaulted into the upper spheres of my head where I continue to try (un)successfully to understand.

So here I am, writing this rambly letter to you. Is it a letter of apology? Not really. Is it a letter of thanks? Kind of. Is it a letter of explanation? Most likely. I wanted to explain where we are with each other. I wanted to explain that I don't always hate you, and I don't always love you either. I wanted to explain why I continue to be confused. Now I'll do as I've always done, as we've always communicated with each other - I'll wait for you to respond somehow in someway, and give me a small clue about how we can move forward together.

Patiently & respectfully yours,
Sandy

This week's Fracture Free Friday post marks the blog's 30th entry! The growth of this project has been astonishing and even more admirable are the people, new friends, and the community that has welcomed me.

When I was younger these questions were posed to me a lot: "what is it like to be in a wheelchair?" or "what's it like to be disabled?" Growing up with these questions in mind I would frequently get confused as to what a disability is. Is it a feeling? An identity? A mentality? A diagnosis? All of the above? And how do I incorporate all of those into my daily life? Should I be conscious of being disabled all the time? In other words should I always 'feel' and 'think' disabled?

Needless to say I was and still am one to over think things into a pulp. At the risk of already growing 'silver' hairs in my early 20's, I have done my best to not mull over those questions 24/7. Instead, living those questions and figuring out the answers in the process of life have been far more interesting for me. Still, once in awhile I find myself slipping back into the cycle of self-wonderment. Recently I started thinking about the times when I do not consider myself 'disabled' in an attempt to understand the times when I "am" disabled.
For instance I always begin my day "not disabled." I wake up in bed, look at the ceiling or out the window and stretch. In those sleep-wake seconds before I turn to look at my empty wheelchair parked next to me I do not consider myself 'disabled.' In fact, to be quite honest, I consider myself rather be asleep because I am not a morning person. Then when I reluctantly clamber out of bed and slide into my wheelchair I am still not disabled. I'm just grumpily trying to figure out what crevice my seatbelt has slipped to now and prepare to sloppily push myself towards the bathroom. As I get into the shower and then get dressed I'm not disabled, I'm just trying to throw clothes on my body and get myself out the door. I'm not a make-up person at all. In my blunt opinion whenever I think about putting make-up on myself I think that somewhere in the world a clown is doing the same thing... and to be honest, I live my life to entertain myself, not to entertain others.

Maybe around this point in the morning I first notice that I am 'disabled.' I look at myself in the mirror that is angled down towards me, the reflection of me sitting in my wheelchair looking back at my now 'a-little-more-awake' self. I notice how the bowing of my ribs almost forms a barrel, but then when I think of barrels I think of too much beer and once again for those .09 seconds I am not disabled. I am just a 20-something who likes to party with her friends. And then I know that despite having length to my femurs my lap is somewhat non-existent because they too are bowed  from too many fractures and misshaped collagen. I scrunch up my face in an attempt to make it less triangular but after awhile my face muscles will get tired and things will slip back into their broad forehead and cone pointed chin. My arms were never like airplane wings when I played that game as a kid, it was more like I had the arms of Frosty the Snowman - the crooked branches of an old tree. The lower half of my arms drop down past the bend of my elbow, it's like an upside down shrug. But even still, after grinning at my overly large head in the mirror and puffing up my cheeks to make a monkey-face I don't consider these features of me 'disabled.' They're just me. They are all characteristics that can be categorized as symptoms of the O.I. Like each of the different designs on the gingerbread cookies my friends and I make every year during the holidays, they're distinctive.

After all of this maybe then, I remind myself I am disabled? I head out the door and wait for the van that picks me up, or for someone to lift me into the car and put my wheelchair away. It's probably in the van where I am sitting for sometimes 5 min or more - that I think "just another part of the process." And I watch as the driver puts the useless velcro strap on me, then fiddles with the wheelchair tie-downs, then fiddles some more with the seatbelt (even though I already have a seatbelt). So by the time the entire process is done I feel like I am actually on the way to the insane asylum from all the straps, and not just ... on my way to work, or to cause a ruckus with friends. And sometimes on that van there are old people. And never will you see the miracle 75 year-old totally ripped grandmother on the van - I mean, OLD people. They have walkers and oxygen tanks and admire the speed at which I am able to zoom in and out of the van - and the precision with which I am able to park.
But then after all of that is done and I go about my day: as I wait for the elevator, or the accessible stall, the construction workers to move, look for the curb cut, look for the accessible entrance, hope the car sees me despite being short, raise my wheelchair seat to reach the bank teller - I am not thinking "this is me being disabled." I am only thinking "how do I accomplish what it is I need to get done?"

Of course this mentality is much "smoother" for me now that I am older and do not fracture as much. But even as a child when I did have more casts on more frequently, I didn't think of breaking bones as having a disability, or the times when I needed my wheelchair reclined as 'being disabled.' It was just "how do I continue to go on living?" And now as I'm older when people ask me "what is it like to be disabled?" I want to ask them back, "what is it like for you to live?" I may not know much but I think I'm beginning to find out that the answers are not too different from one another after all.