Showing posts with label Letters to them. Show all posts

When I was younger I didn't hear or know about the '-ed' at the end of your official description "bowed." Instead I thought that my bones were like bows for an embarrassing number of years. I thought they were powerful enough to launch arrows from like Robin Hood did. And I thought they were like accessories that my mom sometimes would put in my hair; I thought they were like those bows: girly, cute, an extra detail to add on to complete the look. But if I tried to pull you back taut for an arrow you would only break. And "cute" after about age 12 becomes "weird," "abnormal," and "deformed."

The first time I remember singing anything joyful about you was when we sang that "bones song" in the fourth or fifth grade.
"The knee bone connected to the thigh bone,
the thigh bone connected to the back bone.." 
And I remember thinking that this song was totally wrong because those parts of you are actually called patella, femur, vertebrae. I think I grew up a little bit that day. I felt special because I was in on some secret that those other kids in my class didn't know about yet. Like when I watched my younger brother play with Thomas the Tank Engine toys and he hadn't realized that real trains don't actually talk, real trains don't really have faces that are friendly and rosy cheeked. But I kept my mouth shut because he was having so much fun playing with his trains, I kept quiet about your actual terms because my classmates were having fun doing all the motions of the song.

I didn't really know you as "fragile, bowed, weak, brittle.." at first. At first I probably just knew you as something that hurt, and so I screamed and cried often as a baby. Then I got to know you as something that other people could make feel better. Not long after I figured out your soft spots, and weaknesses - I learned to make you feel better on my own. Then you became the thing that I had to keep in mind, or at least try to as I grew my mind and tried other things. Finally, today, you are often the thing that I know best about myself. Sometimes this last fact is the most frustrating part of my day, and other times it is the thing that saves the day. Because why should you be the best thing I know about me? Why can't the best thing I know about me be what I'm going to do when I grow-up? Or what my dream wedding will look like? Or exactly what kind of exfoliant and then moisturizer to use on my skin? Maybe I don't want to know you! Maybe I don't want to know about the crack I am ignoring, the bruise on you I could care less about, and the old break that still hasn't healed yet. Maybe I just want you to lay underneath the tapestry of veins, muscles, and skin as chipmunks lay beneath a winter's snow. Maybe I just want you to exist like that, and move about when the time is right as seasons turn from cold to warm. Those are all childish and maybe even useless thoughts to consider, but they remain notions I have thought at least a hundred times. And if you have broken - needlessly, randomly, inexplicably - a couple hundred times, I feel justified in telling you my equally random, and inexplicable thoughts too.

These will be added to our other secrets that we have shared. Remember the time when right after coming home from getting our orthotic KFO braces, we were excited to start walking again and somehow felt the sudden sharp nip of a small crack? It was against the outside of the tibia/fibula, and I knelt down - quiet and alone in the kitchen until the sensation faded. For about two months everyone was shocked I wore those braces without complaint, tightly strapping down the velcro against my shin. There is a grinding sensation that happens against shoulder blades when in a tense moment I shrug in silence. The left knee locks unexpectedly and I jerk in public at the shock, and I am bartering with you: okay if you just slip back in your socket I promise to not crack my knuckles so much today, whatever you want I'll do it. Just please don't break! There were other weird tiny incidents, moments when we both knew that rather than drag mom or dad to the hospital to spend hours on the orthopedic floor - we would just deal. You let me know what matters and what doesn't. What is urgent and what is not, though to be truthful my stubbornness sometimes pushes your buttons and you glare at me from beneath the x-ray's light table. We will have our disagreements and then tell our friends and family "we're just going through a rough patch."
Our secrets are things that no one will 'get' no matter how closely they study the genes, the sources, or trace the family hereditary footprints of your fragility. They are not things I will ever tell my orthopedic doctor about, even if he gave you a name and prognosis. And as much as I would rather not know about all of your strange quirks and abnormal deformities, would rather look away from the strange twisted spiral of ribs mashing into spine on the x-ray, our time together has forced me to become close with discomforts. The friction of that feeling isn't what makes you fragile, and it's not what makes me any stronger or capable of a person - I think it just serves as a reminder that trying to flee from ourselves is what induces the biggest fracture of them all.

Yours forever,
Sandy

You've turned a historically walk-able city into a playground of historic proportions. The imprint of Timberland and LL Bean boots leave traces of rugged New England everywhere, evidence of survival and even adventurous fun. On top of a blue mailbox someone had ascended, then forgotten a yellow mitten in their determination to stick a Celtics flag on top of it. The flag drooped its green shamrock pride in the stillness of the seven degree evening, but it remained to say that even in the event of Rondo's torn ACL we were a city that had tradition and experience behind us, we were a city that would come out of this turn of events victorious.
Cars poked their noses just barely high enough over the mounds, and when headlights are turned on they look like slivers of crocodile eyes narrowing in on prey. I might be caught in the scope of yellowed light just a few yards down the street, but in the dark my gray and silver chair might be mistaken for the base of a traffic light, or just someone's empty trash barrel sitting at the end of their driveway. The cold was sure starting to make me feel that way.

I rocked to and fro in my seat, trying to throw my weight while pressing the joystick forward and back as I listened to the whir of my tires spin. It was like the pathetic sounds of my friend's cat when it fights against a bath, and finally it is submerged in the water anyway looking even more pathetic. I turned on the flashlight that is attached to my keychain, it is LED and even for all its lifetime battery guarantee I can only see so much. It is guaranteed not so much different from what I saw only three minutes ago.
This is what I see: I see that I have somehow wandered into the cupped palm of your hand, somehow not thinking or not believing that the roughly two feet wide opening in your closed fingers would be a trap. The palm of your hand is grimy with grooves from the soles of people who I imagine just followed the footprints of others who had gone before them. They saw that there were no lost boots or shoes in those foot steps, and that was enough for them to continue forward; and then one leg probably swung over, one glove reached out for stability on the street lamp, and then the other leg swung over the knee-high terrain. A small step for mankind but what may have felt like a huge leap for that individual, then they were out of your grasp.

I also saw their foot prints and assumed the same. Except somehow I forgot that the precarious step over your pinky and ring finger were not things that I would do. But in my mind they looked like I could just crush them, mow them down and roll through. In my mind the soft cells of your snowflakes had not already hardened into stalagmites, the ones that formed deep inside of caves and sprout like prehistoric daggers. They look like dinosaur teeth that had become loose and then fallen out, and that is where the dinosaur tooth fairy left them rooted to the ground. That is what the palm of your hand is surrounded by, various shapes of these things that look like bowling pins and if only I could make a massive snowball and just roll them all down - strike!
After I am freed from your grasp (and surely eventually I will be), there will be four more grooves added to the mosaic of prints and patterns. The lines of your palms criss crossing and I wonder what a fortune teller would tell you --
your future is marked by many cold hard falls. Do not expect to warm up to any one permanent place. You are a fleeting spirit. You are someone who will be played with and despised, only the insane will ever love you. 
These are the useless thoughts that go through my mind in a useless moment where the four grooves from my wheels have by now crunched and gnawed a few more inches downwards. I figured I'd best stop spinning my wheels deeper into your skin, so that whoever comes around to offer assistance will not have as challenging a weight to push or pull out.

Not long after a gaggle of giggling co-eds came by. They are Alpha Beta Gold-Diggas or whatever have you, but definitely Alpha Inebriated for sure and one breaks from the pack and approaches me. She stands just outside your ring and calls in,
"Hey do you need help?"
"Uhh yeah.." Not really thinking if my next words would get me any more free or more entangled.
"Which way are you trying to go?" She asked as leggings and booties entered.
"That way --" I jerked my thumb in any direction that was not inwards and she was not paying attention, her hair had fallen in her face and now her friends stood on the threshold of your grasp. But to be kind I aimed my flashlight towards her feet and near my wheels.
"Okay so should I push or pull you" her hands fumbled to find where mittens with pom poms might get a grip on my chair. I gestured at one of your chubby fingers instead,
"Actually I think if you just knocked that block of snow out of the way I should be good.." She turned to see where I'd directed my flashlight. When her friends saw a clearer objective the rest of the squad clambered in and began kicking away.

Blocs of ice and snow flew every which way until what was once your closed fist became flattened and like the terrain of the moon. Craters here and there, traces of life or maybe of a life escaped existed in its place.
"Hey thanks a lot, have a safe night" my wheels spun and I went on by.

So, Snow Banks of the city, you might be able to ensnare cars and trap school kids at home but you won't get me!

With loads of salt, shovels, & sunshine.. unforgivingly yours,
Sandy

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

For much of my life you've been like a second shadow: your presence waxing and waning with the rising and setting sun, cheering me on during my brightest days and slinking away during darker moments. Despite this closeness that we've shared over the years, I have not the faintest idea of what you actually look like!
You were there when I learned to dress myself, there when I learned my first transfer from toilet to wheelchair, you fist-pumped when I got my college diploma, and don't think I didn't see your eye rolling smirk when high school was finally over. My doctors told me you were there when I walked with crutches, when I learned to swim, and when I learned to lipread. Mom and dad told me you were there during IEP meetings, every time I pointed to where it hurts, or the times they fretted sleeplessly because you were taking me away from their nest. Some people say that you're what "doing something on your own" looks like. Others will say that you're the feeling of freedom, of acting upon autonomy, and you're the sounds of millions when they scream for the toppling of a dictator.

Although there's a lot about you I don't know, I wanted to take some time to share with you the things I have learned from you. Because while you think you have been able to lead me on with your tough-love mind games, and your unsympathetic spirit - don't think I'm just some mindless puppet of yours. I might be your marionette but we're both tugging on those strings, one snip from either of us and the whole thing becomes a dysfunctional clump of wood.

Independence, do you remember the first time we met? The first time I heard your name? Let me remind you now:
I don't remember if it was second, third, or fourth grade but it was during one of those years. Our teacher had just turned us loose into the hallway, it was snack time and sneakers squeaked against the linoleum hallway floor. It was back in the day when sneakers that lit-up were the "in thing," and I can picture those lights flashing in rapid Morse code: hungry young child! In the hallway I looked around for my classroom aide who seemed to be nowhere in sight. Maybe she had gone to the bathroom, maybe she had gone to get her own snack, I stayed quiet and watched as my friends opened and slammed metal locker doors - the laminated name tags on each one seemed to be succumbing to gravity as the school year went by.
In front of our lockers was a half inch ledge that jutted out about two or three inches. I'm not sure why there was a ledge in front our lockers, but it was there and for that reason I was unable to roll up to my locker and get my lunchbox that my aide had put on the top shelf of my locker. I reached to open my locker and saw that the strap of my yellow and blue Pocahontas lunchbox was hanging down, I leaned forward in my wheelchair and grasped at empty air - only an inch away from the strap. No one else was in the hallway and everyone had gone back into the classroom to swap Doritos and Cheeze-its; not thinking anything of it I went back to my desk and reached for the ruler that sat in my basket of supplies. I took the ruler back out into the hallway, stuck it through the loop of my hanging lunchbox strap and yanked forward - the lunchbox came flying out and I caught the plastic in my hands. I stuck the lunchbox on the footrest between my feet and rolled back in, wondering if mom had remembered to pack me the right flavored juice box this time.
"Sandy! You got your lunchbox by yourself?! You're becoming more independent each day! Next time, you know, you can always ask one of your friends to help too." 

When I first heard your name the skies didn't open with angels singing from the heavens. No, when I first heard your name - on that day - I heard about the latest kid's show on Nickelodeon, and then the bell rang for recess. When I first heard your name it was just another regular day in the life of yours truly, it was just the start of millions of more natural moments with you.

Sometimes you are my goal, and other times you are my motivation. Your ability to shift gears is uncanny as I've watched you morph from learning to charge my wheelchair, to going to doctor's appointments on my own. You taught me to recognize that feeling that means: you want something really badly - so stop making excuses and go for it! During those times I have imagined you as the barking coach on the sidelines, the whistle clenched between lips shrill and piercing as it shrieks: try harder, you can do better. Don't listen to them. Only listen to me! I'm the one that's loudest in your head! 
You haven't been easy to get along with. You've caused pain and heartbreak, but when I close my eyes and I ask myself: do I feel more like a whole person? And when the answer is a resounding yes, no matter the consequences of my actions and the tensions I have caused - I know that I have done the right thing, for myself.
That... more than anything else, Independence, is what you have taught me best: the ability to care for myself. To put myself first. To recognize my own needs. To not shy away from the difference in the way I do some things. To pursue that huge goal of studying away for a semester in college, to the tiniest goal of learning how to shove my sneakers onto leg braces - you have taught me to have stamina for myself, for no other reason than because you tell me I deserve this.

Thank you for giving me only the best.
Independently forever yours,
Sandy

Since you spend your days a convenient just-out-of-reach-feet from the toilet, and your view of the outside world is only gleaned from the millimeters of space between the door and stall walls.. let me take a moment to tell you exactly how it is out there:

Already? Again? I mean I know it's supposed to happen because you were born with this - but no one said anything about breaking in rapid successions.

Doctors and pamphlets only ever have phrases like "fragile.." "may have more than a hundred fractures before adulthood..." "bones are prone to breaks..." They don't ever say things like "after you break your femur because your elbow slipped off the desk and landed on it wrong... you will then break your other femur in some other random freak accident, five weeks later. Oh and you will be 13 years old. So while your friends are all experiencing growth spurts and changing shoe sizes every month, you'll be changing casts instead." No one ever says that to you. You're just supposed to realize that on your own. 

And I know that your parents told you about how you broke every month when you were a baby, but that was when you were much younger. That was back before you had any real memory, those fractures are filed away in the hospital's memory - they can be found in slides 1-58 in Volume I of Patient X-rays. Those are not burdens that you carry, so when your parents say things like "it's happening again..." you sit there silently wondering "but what's happening again? Does that make it any easier for you? For me?" And you'll realize, on your own, that the answer is no it doesn't make it any easier. Not really. This is when you realize how lucky you were, in a weird way, when you were much younger and have no recollection of what was going on. You'll realize the meaning of the saying ignorance is bliss. 
Perhaps this is when you start to think about how unfair things can be. You might even begin to think about how little choice it seems you might have, in the grand scheme of things. You didn't get to choose whether or not you'd get this particular gene mutation (because no one did). You didn't get to choose whether or not you'd break a bone in the middle of your favorite class (because why couldn't it have been math instead?). You didn't get to choose whether or not you'd break the same bone that had just healed two weeks later. And you certainly don't get to choose how long it takes before you are healed again. The list could go on about all the things that you didn't get to choose to do or have happen. Here's a secret though: It's the same thing for everyone, just a different set of choices they don't get to choose. 

But that's not what any of this is about - in the grand scheme of things. People don't brag about all the life choices they don't get to choose. People are not making lives and futures from the choices they had no choice in - progress is made from the decisions we do make. And then you'll realize that there are always options. For every choice you don't get to choose, there is at least one other choice that you do get to have the option to make. It's a one-to-one ratio. So for every bone that breaks we have the option of taking care of ourselves in order to heal faster. We have the option of continuing our day-to-day routine the best that we can. We have the option of learning from our mistakes. We have the option of now remembering what our body can and cannot do. We have the option of gritting our teeth and toughing it out. We have the option to decide that this is not going to be a reason to stop.

In the mean time just remember that doctors and pamphlets will always tell you things that you must know. That's really all the job of an "official authority" boils down to. They might not always tell you what you should know. That stuff you probably will have to realize on your own.

Be well,
Sandy

Now they're rolling the gurney down the hall, into the elevators that will take me to the surgical floor. I sit huddled in the swaths of bleach-free blankets and sheets, wondering what is happening to you. Just minutes before the surgeon explained, for the hundredth time, exactly how the procedure would go - reassuring you for the millionth time that only he would be making the actual incisions: "These are surgical fellows who will only be observing in the operating room. No touching." 
But at least they will still get to see me on the operating table. You, as my family members, are only privy to updates that I imagine are given by a surgical nurse every now and then. And to be honest, the only reason why I think that happens is because of what I've seen on all those hospital shows: ER, House M.D., General Hospital.. Does it really happen? And do they update you in that monotone voice the actors have in those shows? Or is it a little more humane? What are you thinking after they give updates? Do they tell you exactly what you want to know? These are the questions I'm wondering as I'm rolling towards the surgical floor, getting a little farther away from you.

Now I'm in the operating room. During the brief trip over the prep nurse and anesthesiologist have been making small talk with me. What grade are you in school? What's your favorite subject? What book are you reading? Do you have siblings? Do you have pets? I read in your medical records that you want to be a lawyer someday? I know that these questions are meant to calm my nerves. But it's hard to stay calm because you are so far away down the hall, down several floors in the elevator, and sitting in some imaginary Family Waiting Room that I have only seen on t.v. shows. I am thinking that for every question that the nurse is asking me, your synapses are firing off only a hundred more.
Did I follow the pre-op instructions correctly? Did she have anything to drink in the past 8 hours? What were the risks the surgeon told me again? Should I look at the fine-print on the copy of whatever I had just signed? Will my son remember to lock the door when he comes home from school to an empty house? How long did he say recovery would be? Is this really worth it? 

I wish you could be with me to see how metallic the inside of an operating room is. Metal is reflective, shiny, sterile, and cold. Just looking at all that metal in there makes me shiver a bit. Would you like another blanket? The nurse asks me. They've lifted me onto the operating table, it's slim, black, and has a place for my arms to be strapped down onto. Someone begins to place 'stickers' with vein-like wires attached to them. The anesthesiologist waves the little tube of cherry-flavored sleepy drug underneath my nose, my stomach turns.
In my head I'm not thinking about how straight my bones will be after this operation. And I'm not thinking about what color cast would you like? I'm thinking about something I know best, the most familiar person my brain can conjure up in this frighteningly silver room: you. Are you sitting in the chair with your legs tucked underneath you, with your hands clamped between your legs as if you really need to go to the bathroom? Except we both know that you don't, you sit like that - curled up and tense when you are nervous.
Has someone brought you something to drink? Jello, apple juice, and popsicles are for patients so what do hospitals give to family members in that Waiting Room? A styrofoam cup of coffee? Non-caffeinated tea? Hot chocolate? Do the graham crackers you are nibbling on suddenly taste like cardboard? What are you thinking about now?
How long will this take? Will something go wrong this time? Will she be okay? What did the nurse just tell me again? What does that mean in plain English? 

Don't be nervous. Because I am not nervous anymore. I'm looking up at smiling eyes hiding behind a surgical mask, thinking about you and the questions that you are wondering about. Somehow I believe that there is comfort in the unknown that we are both facing, hundreds of feet away and in drastically different rooms; because as long as we are both thinking of each other then whatever heart-wrenching-hand-wringing-hair-graying-pulse-stampeding incident we must deal with - will never - sway our confidence in one another.
"Okay Sandy, ready to go into a deep sleep?" The anesthesiologist asks. I am looking back at him and only manage a nod as I imagine someone coming to tell you, "The operation has just begun, and she is doing great." 


See you soon in the recovery room,
Sandy 

It didn't really occur me to that it was "a big deal" until I started Kindergarten. At home it wasn't a big deal because I was accepted, and expected to crawl around on the floor or use my wheelchair. And in pre-school it wasn't a big deal because most of the other kids were in wheelchairs or used other mobility aides too.
The difference was apparent on that first day of school in Kindergarten when I noticed that this wasn't really the way things were supposed to be. More specifically, you weren't the way things were meant to be. It took a class filled with other screaming, singing, running, jumping, squirming, nose-picking, and jacket-struggling kids to make me realize: the two appendages below my hips were not the norm. And even more so, there was nothing I could do to get you to work the way you're supposed to.

Around that time I began learning how to walk. With the help of my parents or physical therapists I'd strap you into clunky leg braces, and like monkey-see monkey-do I'd try to mimic what I saw everyone else doing. I could tell that you didn't like it, and to be honest most of the time I didn't really like it at first either. In fact most of the time - during those early stages, I felt like the puppet master and you were my marionette dolls. Except mom and dad had already told me that my puppet would never come to life, it wasn't going to be like in Pinocchio when he springs to life. So I labored on because that's what the adults in our world said we had to do. I continued to learn which strings to pull, I learned until over the years we came to be as close to "Pinocchio-like" as we could. It took a lot of frustrating moments, lots of tantrums thrown, hundreds of sneakers, many more leg braces, fractures, and corrective surgeries before we got to a comfortable place - but the point is we got there together: now, unlike my four year-old self, I know that you do work the way you're supposed to.

I hope you know that I don't mean to hurt your feelings when I say things like "I'd rather break my legs than my arms." But it's the truth. And I hope you realize that even though my wheels have more or less replaced you these days, I don't ever take your presence for granted. The hundreds of fractures we've been through together have taught me more about rehab and healing than what most people learn in an entire lifetime. You're my silent option, my quiet reminder of hard work, of staying humble, of being appreciative, of persistence, of there always being an alternative way. 


At the airport you're the reason for the scan, for National Security to sound the alarms - and then everyone settles down when they realize you're just a harmless reminder that everything is not as it seems. "Just metal from the rods and screws in my legs.." And when my brothers began cracking their toes, you're the reason that told me that I can try too - successfully. In public bathrooms you're the reason why I can stand on the footplate of my chair, or else I'd never be tall enough to reach the sinks. When we're at the mall, you're far too tempting to not want to visit the shoe sale. Your quiet insistence that each pair of shoes I buy is a long-term if not life-long investment usually wins me over. In middle school you helped me grow tougher skin when kids pointed at the snaking scar tissue that traveled down the front of your face. Let's not forget about the Mickey Mouse roller-skates we risked our neck putting on. Or the victory we felt when we talked mom into letting us onto the ice rink!

Sometimes sitting on the sidelines while my friends ran laps in P.E. class made me feel guilty about you. There they were being tortured and hollered at "DON'T CUT THOSE CORNERS!" While we were just chilling in the shade, helping out by writing down times each time they ran past me. It was moments like those where you seemed to get heavy with guilt too, with a feeling of uselessness that I hated and resented you for harboring. Settling for second best is something you taught me how to do with grace, and only when no other choice is available. With that said you also taught me that giving up, no matter how bad or hopeless things look - is simply never an option. You might not be able to carry me around in life, but in too many more ways you're able to carry me through a lot!

...Needless to say, you and I - we've been through quite a bit. And there's no doubt in my mind that I would never trade any of those adventures together for a pair of legs-that-work! You're worth my time, attention, effort, sweat, and worry. Please don't walk out on me, okay? 

We both know that you're only pretending not to listen right now, so let me just state my two cents and then you can go back to writing poetry while you listen to Linkin Park at full blast.

By nature I'm not a very confrontational person so I'll try to be as civil as possible. I should warn you that what follows may make you quite a bit uncomfortable -- I am not sorry for that.

I know all the trash they talk about you, and believe you me, I know FAR too well what you do -- but despite all of that I'm glad we're together. Our relationship has had its fair share of bumps and fractures (hah, see what I did there?) but I've come to appreciate your quirks and learned to manage your more annoying habits.

Let's think about the first time when I, through my own self-realization, truly appreciated you. I was very young at the time, and we were still getting to know each other so it was pretty rough going between you and me. But I was sitting on the medical table in the cast room at Children's Hospital, twiddling my thumbs while I waited for my doctor to saw off yet another cast... that you were responsible for. I had spent the past couple of months relying on my parents to carry me everywhere, had spent weeks getting sponge-bathed, and was starting to get sores from having to be on my back in one place for so long. Needless to say I was more than ready to be rid of your baggage.
As with many other times I have been in the cast room, this time I was not the only patient. There was a little boy seated, or should I say squirming and wailing, on the table next to me. His parents were trying to shush him, his face was a violently furious red, and he screamed for all he was worth - twisting his face away from his broken arm. I wanted to tell him that closing his eyes wasn't going to take the pain away. I wanted to tell him that no matter how much he screamed and thrashed, it wouldn't work either, in fact moving more would just make the pain bolder. I wanted to tell him that soon it'll be all over. I wanted to tell him about patience, about healing, about getting stronger, about how in the bigger scheme of things -- his broken arm was nothing. I was probably no older than 10 but I knew these things because you had taught me all about them. In fact, these were your gifts to me and at 10 I knew that these were the things that made me different from my friends.

About that, you taught me how being different is something you adapt to instead of fighting against. You know, there are often days and nights when I think to myself that if political leaders and iron-fist world rulers could understand the things you have taught me, perhaps there wouldn't be as much struggle, hardship, strife, or anger in the world. Maybe people would want to work harder to mend, to converge, to be patient, to be stronger together, to adapt. You've taught me how to survive by adapting. Whether that's by adapting to other people's expectations of me, to the tall shelf that I can't reach, to the bank teller who never seems me, or to my friend's house that I can't get into -- you've showed me how everything is possible.
I wanted to thank you for that possibility that you continually reveal. In times like these I see so many people who have lost sight of possibility, hope, and clarity for themselves. It is a frightening and incredibly sad sight, and although I have so many amazingly supportive people in my life who help make my own possibility happen -- I believe that it all begins with you. Sure, I have to fumble and wrangle your neck a few times before you'll show me the way but it is ALWAYS so worth it!

Sometimes though, I'm not sure if you realize your scarier influences on people. Sometimes you bring a lot of fear and unknown into people's lives and I resent you for that. Aren't there better ways to prove your point? Less dark? Less of a hassle? Ways that aren't as much of a struggle for folks? Do you have any idea the fear you put into a mother who has her O.I. baby taken away because she's being investigated for child abuse? Or what about the fear of a child who isn't sure he'll be safe at school that day? Or what about the unknown for the twenty-something who isn't sure she'll ever have a 'normal' independent life outside of her parents' home? Or what about the family who isn't sure their O.I. child will live past the next day? I have seen so many of these instances play out and what makes one situation find success is strength and determination. You drag us screaming and kicking to prove what we are made of. You are unrelenting in your instructions. You give us no option but to prove the best of ourselves, but in order to do that, I understand that you must first put us in the worst case scenario. I just wish you wouldn't do that... all the time. Like, sometimes, can't you just let ME handle the remote control to life? Why does it always have to be YOU who gets to choose which channel we watch?

We can't get rid of each other. This relationship is made up of a promise more sacred than that of a vow, it'll last longer than the rust of a wedding band, and no amount of money could pay divorce lawyers to end it. So I have resolved to make the most of this -- whatever this is, whatever you are, and whatever it is you do. But after all, making the most of things is the first lesson you taught me 20 years ago when we first met, right? And just look at where it has taken us now!

With love and admiration,
Sandy

They'll tell you that the great adventure you just began with me took a turn towards the uncertain. They'll tell you raising me is going to be filled with insurmountable challenges and numerous struggles. They'll warn you about the medical bills and costs I'll require. They'll try to explain all the surgeries or therapy I'll need in the coming months and years. They may tell you to not plan too far into my future. They'll tell you that they're so sorry and ask if there's anything they can do for you, or me. They'll tell you that I will consume your life. They'll harp on about the sacrifices you'll have to make (as if they had a clue). They may even take me away from you for awhile. They'll smile in that way that belies their relief that I am not their child.


You'll take it one day at a time with me. You'll feel sad when you watch the other parents with their gurgling and healthy babies. You may feel angry and frustrated because you're always grasping for that "what else can I do..." Your blood may boil when they tell you you're wrong but you just know you're right. You may ask yourself why you continue to do this. You'll doubt yourself more than a few times, more than a hundred times. You'll soon find yourself unwilling to give-up; and you won't know why, or maybe you know exactly why but it's difficult to put all of the emotions and beliefs into words. You might even get fed up with me on more than a few occasions. You may feel guilty for all the reasons 'why' and 'how.'


I'll change your life's priorities. I'll show you what you are capable of before I figure out what I am capable of. I'll invent new dreams for you. I'll teach you how to be patient and push your sense of trust. I'll reconstruct your idea of 'family.' I'll exercise your strength just when you thought you're exhausted. I'll hold you to your stamina and make sure you never waver. I'll push your determination to the point of unrelenting. I'll show you what it means to go to "infinity and beyond!" I'll guide you to be my ears and eyes until I can do it on my own. I'll prove to you why expectations should never be set in stone. I'll make sure you're paying attention to the smallest of things. I'll instill your intuition with an iron-fist confidence. I'll challenge your sense of courage and may change your sense of faith.



     

Last week I was a volunteer camp counselor at Easter Seals Explorers Camp, before I left I had written myself a pre-camp letter. This morning I am following-up with a post-camp letter. Note: Pics will be posted later on!
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First off I was amazed by the accessibility of the camp site, Agassiz Village. Smooth dirt paths all around, ramps leading into cabins and activity cabins, even a smooth path down to the water front! But the more I threw myself into the daily routine with all of its challenges, ups and downs, small joys and victories - I came to understand that the biggest asset to accessibility wasn't the infrastructure. What made the camp experience so worth it and what helped me get so much out of it were the 50 camp counselors and staff who were there with me, about half of whom had some type of disability.
But wait for it............... the coolest part, of course, were the 5 OI'ers who were either camp counselors or program staff. The 2 'bosses' of the camp were OI'ers themselves! (And people I am very lucky to call friends). They zoomed around on their scooters and power wheelchairs making sure that every cabin was at their activity, saying the magic words that ceased any tantrums our campers were throwing, and raced to the site of any emergency even when it was late at night.

Our days were busy from 7:30AM to 8 in the evening with arts & crafts, nature/fishing, island explorations & canoe trips, camp fires, ropes course, and sports. Every day we took the campers swimming on the lake, there was rest hour to hang out in the cabin with your bunk mates, and the greatest part was that it didn't matter if you had autism or were in a wheelchair, or had some other disability - every camper was held to the same expectations: to learn new things, make new friends, participate in activities, and listen to camp counselors. Campers were awarded stickers at every meal as counselors announced who was the Friendly Camper of the day from each cabin, and those cabins who cheered the most and were most amicable got a spirit stick for the day!
As I had said before, Explorers Camp is geared towards kids who are on the spectrum of autism or who just would not have been able to participate in a 'normal' sleep away camp or even a day camp. With that in mind you can imagine all the challenges that may come with throwing a bunch of kids into a new environment and expect them to be fully engaged in the day's activities. But it was through the incredibly patience of the camp staff, our willingness to help one another, and endless words of encouragement that got us through all the tough times and allowed us to celebrate the victories and joys.

One morning was particularly tough, for whatever reason the campers in my cabin were all a bit 'off.' No one was listening, it was a struggle to get even the most compliant camper to follow directions, and everyone seemed to be deep in their own world - literally. We headed towards our morning activity, music, and two of my campers decided to have a melt down "I don't like loud noises, music isn't my thing, I won't do this..I just want to be left alone.." eventually one of them sat outside the whole time, and the other sat herself in the bathroom and refused to budge. I decided to focus my attention on the campers who were more willing to participate in the fashion show that they were supposed to be putting on, and helped the other girls choose costumes and cheered them on. We had twins, M & K in my cabin:
"Hey K look at how much fun your sister is having dancing to the music, why don't you dance with her?"
"No. I don't want to." She said in her monotone. Then looked down at the floor and curled up in a ball. 
"What if I danced with you?" I asked her - determined to get her going.
There was no response, only a blunt silence and she continued to stare off into space. 
After some amount of pleading and encouraging, during the last 5 minutes of the activity period I was finally able to get K up and dancing with her sister, she even tried the hula hoop and I felt like I had just coached someone through a marathon!

Though all of the campers in my cabin were teenage girls and towered over me, none of them questioned my authority as a camp counselor or doubted that I was able to help them. Even the most stubborn of them! I was never asked why I was in a wheelchair, why I couldn't walk, or why I was so small. Not only was I not questioned by any of my cabin but not even by any of the other 40 some odd campers in the rest of the camp. I will honestly say that this past week was the first time in my life that I did not feel the need to explain my presence, differences, abilities, or inabilities. The nonjudgmental environment of the entire camp was such a relief and though the kids may not have been aware of it - this aspect of Explorers Camp was definitely a huge component of the overall accessibility to our day-to-day lives.

Overall I had a lot of fun, got so much out of the past week, and my boundaries have been pushed in ways I didn't think I would ever be comfortable with. But not only am I glad that I was thrown into this new experience but look forward to participating in future Easter Seals programs as well.

All packed & ready to go!

As I am getting ready to pack for camp there are a thousand questions poking my brain, dancing around my head with sly little smirks on their faces -- like they all have some huge secret that I don't know about. Usually I would be annoyed but this time I don't mind, instead of annoying me, this time around the unknown is exciting and it's also one of the few times in my life where the unknown hasn't cast a long shadow of fear!

As I am packing for the next five days this is what is going through my head:

"Why do I own 12 pairs of jeans?? This is absurd! And how did I pick-up so many free t-shirts from those non-profits that I worked for and interned with?! I literally have an entire wardrobe of idealistic slogans and calls to save the world!
I have no idea what I'm getting myself into as a camp counselor but that's okay. I am telling myself it's going to be fine because I will fall back on my love of helping others, of working with kids, of helping others face challenges, and I hope I will be laughing throughout the entire week. Yes, even when that huge creepy crawly comes near me in the middle of the woods in Maine - I will laugh. As opposed to screaming like the pipsqueak that I can be... okay, I will try my hardest not to scream.

Seriously though:
I am most curious about the group of kids that I will be working with. The camp is geared towards kids who fall somewhere on the Autism spectrum (some have other disabilities as well) -- and I'll admit that I have little to no experience with working/camping with kids with Autism. But I have been assured that no prior professional experience was needed so what can I say? I really am just a sucker for adventures and mystery! Usually I would have done all the research, talked to my friends who were Special Ed majors in college, or thought about various scenarios and how I might react - but not this time around.

From what I know of Explorer's Camp it seems to be just like any other mainstream camp but with the flexibility in the schedule, a and day-to-day routine that works with the various challenges the campers may face. Whether it's extreme anxiety, difficulty following directions, or participating in group activities... ultimately I get the sense that at Explorer's Camp it doesn't matter what the challenge is, the camp works for and with the child. How I wish the real world, the world beyond Explorer's Camp, beyond the next five days that I will experience could function like that always! Imagine a society that works for and with any disability! It almost sounds like a vacation from my usual routine! Instead of the individual constantly needing to find ways to adapt to the everyday, this time, at least for a little while -- it will be my job to help flip their societal expectations a bit. Of course, I am not naive enough to believe that in the span of 5 days I will reverse societal expectations of how people with disabilities live their lives, but it is my hope to help someone at Explorer's Camp believe that it just might be possible."

So that is what is going through my head and I can't wait to update my readers on what my experience was like when I get back. In the mean time, I hope you enjoy the rest of this week's blog posts while I'm away!!

Rays of shine,
Sandy

I decided to write a letter to my parents. These are the words I would tell them if I could have as they watched me over 20  years ago in the hospital incubator, unable to hold me and terrified of what will happen.

It's not your fault. It's not my fault. It's not anyone's fault, but can I just say this anyway? I'm sorry. I'm sorry for all those hours of worrying, crying, and having the weight of your tiniest child's unknown future constantly on your shoulders. I cannot begin to imagine what it will be like to try and provide everything for me and then watch me get hurt unexpectedly, inevitably, and knowingly - hundreds of times over. What will it be like to take eight steps forwards with me and then watch me get forced into taking ten steps back? I think about that a lot as an adult and sometimes I wonder if I could ever be as strong as you guys and raise another human being in that similar process.

But what I am about to say is probably the most important thing for you to know: You will get through it and I will be fine. 


My body has many deformities and limitations but I wish I could have been aware when you guys realized my brain is "normal." Was it like someone had thrown you a life jacket in the middle of a raging and darkening storm? Such hope! You will raise me to appreciate hope and to pummel every crumb of its existence out of every situation. Thank you for that. And thank you for pushing me in school, not just pushing me but demanding that nothing other than perfect would be acceptable. This would drive me insane in high school, I will push you away, be confused, even be angry with you but I will come to understand why you did it. Education and the advancement in medicine are the two sustaining aspects of my life that I know I will always be able to count on. Those gifts are priceless and literally life changing.

I will learn how to play the piano, walk, swim, jump, read, write, dream, and have empathy. Then I will learn how to help others, listen, respect, admire, envy, comprehend, and problem solve. I'll always learn how to communicate, work together, be patient, love, build stamina, rehab, heal, think critically, and be innovative. These and so much more will be the bones of my life, the skeletal system to my future - the scaffolding that is more iron tight, forever unbreakable and the stuff that my faulty collagen will never be able to affect. Thank you for all of that.

Me, being observant and critically watchful as usual.

The sometimes clumsy dance you would do between caring for me and giving attention to my "normal" brothers is how I understand what it is to be human. No one is perfect and we can only try with our best and most genuine intentions at heart. Don't ever think that I don't know you are trying your damnedest to help each of us discover what we are capable of, pushing us - sometimes to the point of failure - but then always forcing us on-wards. There was always such little time to feel sorry, to take pity, or to stop and dwell in our faults.

Today I am not so great at accepting my limitations and realizing when I need help, but I am learning slowly. I don't regret the decisions you have made for me, medically related or otherwise - I trust that you know what's best, and at times now I will hear your voice in my head when I need to make a decision on my own. I am fortunate and forever thankful to be able to embody all of the successes you have armed me with, able to keep in mind the lessons from failures, and now I do not shy away from taking a stab and discovering more of the potential that you first instilled in me so many days and tireless nights ago.

With love & utmost appreciation,
Sandy