Showing posts with label wheelchair. Show all posts

You'll Never Get Me Out!

I am going to tell you a silly story that ended up having a huge impact on the way I think of myself:

We sat in a circle on the gym floor, watching our P.E. teacher dumping out plush foam balls from a mesh net. She was trying to scatter them around and make sure that no side had "more" or "less" ammunition later on. Meanwhile my classmates and I sat wriggling around restlessly, excited to get the game started. It was one of our favorite games: dodge ball.

In elementary school, at that age, kids tend to be very literal with everything that they see. At that point I defined a lot of myself in connection to my wheelchair - my sense of self was everything that I could do in my wheelchair, a few things I could do out of my wheelchair, and the things that I just couldn't do without help. My friends knew that I would never be the 'door holder' for the class that day, and I wouldn't be joining them at recess for a muddy game of soccer later on. Needless to say it was easy for them, and even myself, to get my wheelchair and my identity blurred.

That is, except for when we played dodge ball.

"Now remember, if you throw a ball and it hits someone above their neck it will not count and YOU will be the one out of the game!" Our P.E. teacher would warn us. 
Next she would tell us to line up along the wall, and we would scramble into order - trying to out-guess the numbers she would have us count off and divide us into our two teams. We would tell our friends to skip every other person, thinking that if we counted off by two's we'd wind up on the same team. 
"Alright let's count off by 4's.. starting here.." 
"1, 2, 3, 4.. 1, 2, 3, 4, ..." 
After the last kid counted off our teacher said, "okay! All the 2's and 3's on that side of the gym and the 1's and 4's on that side.." 
There would be a mad scramble to our appropriate sides, I'd push myself to the side I was on - my aide close behind. 
"And remember - if you hit Sandy's wheelchair she doesn't get out! You have to get her out, not the chair!" My P.E. teacher hollered after us. We spaced out on our opposing sides, she would stand in the middle against the wall - whistle at the ready in her lips... 


Of course I never consciously thought about the fact that my wheelchair was not me as my aide handed me balls to throw at my classmates. I was too busy winning, and smirking at my friends trying to aim at my tiny 'strike zone.' But it doesn't matter that no one actually sat me down and said "Sandy, you are not your wheelchair. Your wheelchair is a mobility aide.." In fact I think that this was an absolutely brilliant way of showing me how what seems like a barrier doesn't define me, or be the way that others view me. It would be years past my fifth grade 'graduation' before I figured out that my wheelchair isn't 'me,' but I'm truly thankful for the idea having been planted in my head at a young age. 

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Dear Wheelchair,


Before you came along there was the stroller, a carriage that my parents would pop me into as we went around Disney World -  I sat alongside my younger brother who is seven years younger than me. (A ten year old girl wants very little to do with her three year old brother, never mind be mistaken as fraternal twins). And before the stroller it was the gracious and gentle arms of adults (usually my parents). Sure, through these means of height and transportation I was able to see much of the world (I saw the Great Wall of China in a baby carrier on dad's back), but I didin't really learn how to experience life until you came along.

Before I had a pet rock or attempted to grow my baby pumpkin that we picked in Kindergarten, you had already taught me what it means to care for something else. You showed me why it's important to keep your quick-release button axles well oiled and cleaned; you showed me what it means to give a little when it came time to release the tightness in your brakes (so I could brake on my own!); or what it means to grow with a person when it was finally time to lower the foot plate another notch (you sat there silently glowing back at me with pride). And don't think that your selfless accommodations have gone unnoticed! I appreciate the countless times when you've extended leg rests to ensure that the gigantic cast on my leg is properly elevated. And when the doctor tells me that he can't see the fracture in my ribs, the way you tilt back ever so slightly lets me know you care about making sure I can still breathe easily. You're there with me through sickness and in health.

My upper body strength has increased exponentially over the years thanks to you. Though I don't have a career in weight lifting or body building, the pay-off has been huge! Up until a few months ago, the last time I broke my arm was sometime in middle school - more than 10 years ago!! At the start of each school year I loved racing around the newly cleaned gymnasium, popping wheelies and doing donuts as I whipped around the pretend ice rink in my head. I'm so glad that you have been able to share that joy with my peers who aren't in wheelchairs, a part of me almost wanted them to be jealous of what we could do and they could not.
On the flip side you are usually the closest thing to me when it's my turn to feel jealous and sit on the sidelines, watching everyone else. Your lap becomes the place where I am able to grow silently sullen, your sense of tough love is apparent as you remain rigid while I slump a little in the seat. You're the space that allows me to feel pitiful without judgment or condescension. But when the moment is over you remind me that it's time to move; you remind me that I have to literally roll myself along because I have a choice, at the end of the day, will I choose to push myself along or will I allow myself to sit there along the sidelines? I'm thankful that whichever choice I make you've literally got my back. 

People who see you and think "wheelchair bound," "handicapped," or "wheelchair dependent" really have no idea what they're talking about. Their lack of understanding fails to take into account the fact that like any other successful relationship, this is a two-way street. I am not always using you, and you're not just some mobility device that is forever accommodating me. Most of those people weren't there when, together, we learned how to open doors that didn't have automatic-buttons; and the two of us know that there was nothing "wheelchair dependent" about showing the conductor of the train how to operate the lift on public transportation railways.
The two of us also know that there is nothing "handicapped" about being able to run someone's feet over, especially if the person had it coming - there is a power and self-righteousness about the position you put me in in society. As I have gotten older you've showed me more of these instances: how to recognize them, what to do, how to act, where to park, how to leverage your four wheels and cushioned seat in a way that allows us to roll onwards to success. These are things that my parents and teachers couldn't have taught me even if they tried - it had to come from you. 

Well, I just wanted to take some time to write a thank you letter of appreciation. I appreciate how you've helped me to experience life in more ways than anyone else could ever dream up. Please know that even though I get annoyed when your wheel bearings give me trouble, and that I complain about your lack of automatic umbrella to shield us both on rainy days - I really couldn't have sped along without you rain or shine. 


Sincerely yours,
Sandy 

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Elevating Thoughts

In the public sphere, rare are the moments when someone in a wheelchair is able to feel invisible or anonymous: for the most part and in most situations -- the four wheels I am cruising around on are difficult for others to not see. With that said, I'd like to invite you into a space that I hold almost-sacred in the world out there: The Elevator. 

Ding! The neon glow to the arrow pointing up is lit. This little light, like a quarterback in a football game, begins to set the players into formation. People shuffle around in the lobby nudging closer to the elevator doors; I have already strategically positioned myself at the front of the line but not in front of the doors. Instead, I am angled off to the side and in such a way that makes my stance clear: this is now my elevator, and I intend on getting in it
As the doors slide open I dart inside, quickly hit the button to my floor and then swivel around to the rear right corner. Other people begin to march inside and I sit there for a few seconds watching, and in my warped brain I pretend I am the royal queen grudgingly accepting the company of my subjects. 

But Oh No! What is this? 
Whose rear end is slowly creeping ever closer in.to.my.face?! And what about this other rear end with JUICY plastered across it that is about to back that thaaang up right into my wheelchair's joystick? I realize that as an adult I should be over the concept of cooties, but don't these people understand!?! While they don't need to touch the soles of their shoes -- my hand needs to always touch my joystick in order for me to get anywhere... in LIFE! 
At this point I have sucked in my breath and am hoping with fervor that these anonymous rear ends will leave my metallic boxy kingdom before I get to my floor. The doors are now beginning to close and I, along with my subjects, are beginning to get used to each other's "unique" choices in perfume, cologne, and... just what the hell is that stench? Clearly someone failed to realize that flipping your two day old underwear inside out and then putting it back on does not do the trick. I flick my eyes up at the bodies standing directly in front of me, and with a quick glance at the back of their heads I have telepathically sent them a stern message: do not pass gas. Because if you do, I have no qualms about running you over -- and as you can see, there is no where for you to run inside this box. 
The fluorescent light to the outside world is narrowing as the doors are drawing to a close. People are beginning to settle into their little orbs of separation, making sure that their own finite walls do not accidentally knock into those of their verycloseandtightknit neighbor's. Except, there is an interjection. The doors jerk open, the light tumbles back inside, thumbs stop mid-flick across phones, heads lift up to face the front. First we see a hand and then a foot steps in, then the rest of the person - shoulders apologetic, and face in a part frown part guilt, "Hey, thanks.." the anonymous person says. 
Thanks?? What are you thanking us for? I am unwavering in my confidence that we unanimously silently agreed that none of us want you here, because you are only delaying us in our own urge to getwhereweneedtogo! Without waiting for our silent response this person has swiveled around, promptly ignored us and resumed their proper place in the formation; there is a shuffle from the rest of us to make room - the right butt cheek of JUICY is now officially brushing up against my hand. I swallow hard and close my eyes, for the love of god why can't the body emit farts of spring flowers or fresh baked cookies? 

Finally. The doors are closed, and now the silence fills the box as we, complete and utter strangers, ascend together. And so the guessing game begins. Who is getting off on which floor? Why does that guy think that he can pick his nose just because he is standing in the back of the elevator? (The rear of the elevator is apparently like the rear of the school bus - SO MUCH delinquent behavior goes on back there..) And what about the other lady doing the pick-at-my-wedgie-dance? When the doors closed I guess we all signed a social contract that said: what happens in the elevator, stays in the elevator. Is the woman with her eyes closed while leaning against the left wall okay? Or is she going to pass out? I glance around, no one else seems to be concerned about her, but I am.






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If I Had a Million Dollars...

American superstar Beyoncé recently gave birth to a daughter, Blue Ivy Carter. Among the reports of this new addition for Beyoncé and her husband Jay-Z is the 'over the top demands' they requested for the arrival of their first born, at the cost of a mere 1.3 million dollars... 
Since my orthopedic doctor has been seeing me since birth, my parents used to joke that I too get VIP service. I never wait in the waiting room and am able to directly page him when a fracture happens; rarely has he ever said that he won't be able to see me the same day a break happens. (It might be much later on in the day, after he has performed about 3 other operations on other O.I. patients..but it's always worth the wait).
So, what if I could have "swanky" hospital treatment at $1.3 million - what would I ask for?

1. A wave less waterbed that awaits me on the x-ray table. Instead of just lying on the hard and cold x-ray table, I would like the cover of the mattress to be silk covered - please and thank you. Wave less water beds are made up of water and air that can be set to personal preferences in terms of water to air ratio, and amount of wave reduction. Ideally something that takes the pressure off and is able to support fractures without me holding an injured area. Also, if a duplicate of that waterbed mattress could also be waiting for me in the cast room - that would be great too.

2. An iPad that is connected to the hospital network. These days you are able to send an 'electronic page' to doctors within the hospital network, and all of the x-rays are uploaded digitally into the hospital records. With an internally connected iPad I would be able to see the x-ray being uploaded in real time AND let my doctor know that I was done with the x-ray and will see him soon in the cast room.

3. Designer cast fashions. How awesome would it be if I could have a Ralph Lauren Polo cast design? Complete, of course, with the signature polo emblem printed on the cast. Or maybe the classic Paul Frank monkey face? Or even better, to have my favorite Vera Bradley pattern cover a broken arm? (In case you're wondering, it's java blue..) All casts would be waterproof of course.

4. A security guard. He'll mostly be for eye candy purposes but also block younger patients from accidentally bumping, running, hopping, skipping, or crawling onto me. Oh, and he'll warn off the hospital clowns...

5. On demand supply of green jell-o. Because I like green jell-o and I know the hospital has endless amounts of it. And cherry popsicles too, please and thank you. Hold the ginger ale because I know the hospital makes killer milk shakes. STAT!

6. Personal wheelchair and wheelchair pusher. Sometimes if I have a broken arm or leg it makes sitting up in my regular chair difficult or just impossible. It would be nice to have a gel-seat cushion manual wheelchair waiting for me at the hospital, and a charming conversational wheelchair pusher (personally interviewed by me first) to keep me company as well.

7. Oxygen bar in my recovery room. Because why not? Let's make that oxygen mask more fun! Dude seriously -- could you imagine this experience while on codeine and morphine? Maybe I'd be able to discover the solution to the healthcare problem in this country!

8. On Demand cable or Netflix hook-up in my post-surgery room. There's only so much day time television a person on morphine and codeine can handle. Well, I'm just sayin'... What about a shelf of the top 10 NYTimes best sellers? Or the top rack of the gossip magazines in grocery store check out lines? Or an iTunes gift card so that I can download all the addicting app games on that iPad? How much money do I have left at this point? Heck -- let's just get'em all!

... Okay, okay, I've had my fun of day-dreaming. As you can see there are probably a million other things that I could dream-up that would make my hospital stays and appointments more comfortable. But the point is that unlike Beyoncé, I have figured out what I NEED to get better. 80% of that knowledge is from personal life experiences, and the other 20% comes from a mixture of trusting my doctors and their own knowledge. The next time you are at a crossroads of decisions with your doctors, think about the fine lines that differ between: medical need, requirements, and wants! 

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Over the River and Thru the Woods..!

Okay. So maybe this post isn't about the time I trekked across a river and through the woods, but sometimes what should be a regular outing for an errand can feel like I just went cross country skiing. This is especially true in the winter when piles of snow is all anyone can see.


Senior year of college my friend A and I were serving as interns at a non-profit, whiling away the time before we graduated. Now, as anyone who was a college student in the New England area knows - "spring semester" is a misnomer. There is about 2 months of spring during that 'spring semester' and the rest of it is usually smeared with frozen slush of varying shades of brown, white, and gray.
I feel like I could say this about most winters in Massachusetts, but that winter there had been a blizzard of EPIC proportions. Still, A and I trekked through the snow to get to our internship site - it was about a 10 min walk from the main campus, and then followed by a 25 min bus ride into town. Let it be known that had A not been with me I probably never would have tried to go in alone.

Thinking back on it now only bits and pieces of the scene can be thawed from memory. All I know was that it was there was a down pour and everything was covered in sleet, or humongous puddles of barf-like snow. I'm not sure why we didn't call a cab that night as we left the office, or why I didn't think to just call the college security officer to come get us - maybe we were just brazen and bold.... more like foolish and stubborn..

"Oh geezus it's a shit show out here.." Shortly after leaving the front entrance of the office my wheelchair began to slide effortlessly towards the curb. I tried desperately to slam on the joy stick and get it to turn away, but I could feel and hear the wheels turning uselessly beneath me.
"Ummm I think I need help?" I looked back and saw that A was trying to make his way around what looked like moon craters "Yeah.. uhh hang on a second, I'm coming!" 


After what seemed like an eternity we made it to the bus stop. We sat silently on the rest of the way back to campus, maybe we were both silently wishing that the rain would let up once we got out - or that one of us would come up with a brilliant plan. Sadly, when the bus reached our stop neither of those things had happened.
None of the side walks had been properly cleared or even attempted to be cleared of the icy slush. I often found myself tail spinning into snow banks or finding myself ankle deep in curb cuts that had been drowned in snow, my foot rests buried somewhere in the pile. To say that it was a mess would have been an understatement. But A was incredibly kind and patient, though I felt terrible that he kept having to turn around and drag me out of yet another snowbank. His pants were completely soaked from the frozen puddles,
"Dude, need I remind you that we're not even getting paid to go to this internship. But we definitely should have been paid to get through this disaster!" 
"When I get back to my dorm I am jumping into a hot shower. I am pretty sure my ass is frozen to the seat." I muttered, angrily slamming on the joystick again as I felt myself swivel uncertainly up a curb cut.

Many of the cloudy puddles hid the various crevices and ditches in the road. Although I am usually good about remembering the terrain and where there were sudden drops or bumps, that night I was desperate to just get INSIDE and didn't care to remember where THAT gaping hole in the sidewalk was. Which meant I often felt myself flying through mid air and then landing hard on my rear, but like I had said - every part of my body was so completely frozen at that point, it was like I was wearing a poorly insulated body cast. I felt nothing!
At long last we saw the campus in our view. A and I parted ways as he went back to his own apartment and I rushed inside of my dorm. I don't remember ever feeling so frustrated by how slowly my body seemed to move despite how quickly I wanted to be warm. All of my joints ached, my fingers and knuckles felt like mangled pipe cleaners. My legs seemed frozen into place, and I imagined that somehow my bottom half had turned into a statue - my knees did not feel like they would ever unbend themselves to save my life. Everything felt like they were permanently stuck or on the verge of fracturing. I had no idea what was going on! The dorm shower allowed my chair to be driven in and somehow I managed to crank the shower control allll the way over to the H side.

After that incident, you can be sure that I now better plan my travels when there is another snow event that seems like the apocalypse has arrived! Oh college, the things that we learn!

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Wheelin' thru History

My first wheelchair was bright pink, rigid, and required human-power pushing. Call me spoiled or just technology dependent, but I now refer to all manual wheelchairs as "Flinstone rides."


The Quickie Zippie manual chair also came with a tray that screwed onto the side hand rests. I hated the tray. I used it throughout pre-school and early elementary school, but after the first grade it was phased out because I resisted it so much. My physical and occupational therapists tried every way to the glass-like tray to grow on me, even decorating the border with stickers - but I hated it.
First off it was so bulky that the tray wasn't something I could take on and off on my own. This meant that I could not escape my wheelchair without first asking an adult for help. Secondly, I didn't like how the tray separated me from my friends and classmates. When the class was doing an activity at a table that was too low for my wheelchair, or too high, or if it was an outside activity - the tray would be put on. Though at the time it was meant to serve as an accommodation, in reality all it seemed to do was put a physical barrier around my already existing bubble. Lastly, the tray also made it difficult for me to push myself. The sides of the tray attached to the handle bars and the extra bulk on the sides made it challenging for me to maneuver my chair; in short I felt clunky and useless.

Right before I entered middle school my parents, physical therapist, and orthopedic doctor decided I should get a power chair. Middle school would mean longer distances between classes, heavier back packs, and keeping up with my ever growing classmates. My first power wheelchair zoomed over grass, dirt, bumps, hills, and all the other terrain that I hadn't yet experienced on my own. I loved it and so did my friends who often jumped on the back during recess. Needless to say, this first power wheelchair got me hooked on the independence that power wheelchairs brought into my life. Though it may be odd for me to note this, but the biggest difference was that I had to train my right (non-dominant) hand to do things. Since I no longer required both arms to push, I quickly found how much I was able to get done with one hand free. In gym class I was better able to dribble the basketball, in art class I didn't need my friends to hold my drawings for me, at lunch I could throw away my own trash... these were the small things in everyone else's day-to-day routine that I was beginning to see that I could do on my own!

5th Grade
After high school I got my second power wheelchair. The thought here was that I would soon be venturing out into the real world, living on a college campus, and would need a chair that would allow me to be as independent of an adult as possible. This was when I was introduced to chairs that gave me height. Having mastered as much of the "2-d" plane on wheels as I could, I entered into a world where I no longer had to perform a circus act just to see the top of a kitchen counter. With a push of a button my chair would rise nearly half a foot, giving me an added 6inch height. Trust me, for someone who is exactly a yard stick tall - that's quite a difference!
There's more than just being able to reach higher on shelves, or being able to push the buttons on a vending machine. The other aspects of height include eye contact. I think that this was the biggest difference in getting a wheelchair with elevation abilities: no longer would people feel the need to 'look down' at me (even if they weren't figuratively doing so). And on that note, I also would no longer hear as many knees cracking as teachers or other adults knelt down near me.


Current chair getting new tires

My current wheelchair is a Permobil C300 and my last power chair was also from Permobil as well. I've been thrilled with the company as it provides great usability, durability, and the chairs themselves last quite awhile. Though I do have a new Permobil, my older one still works and it's handy to have a back-up just in case anything goes awry.

But when it comes to trays... despite having a "cooler" tray that collapses to the side and I can put on and off on my own - I still would prefer not to deal with the hassle. In lecture halls many desks are attached to chairs and sometimes I am not always good about making sure that there is a wheelchair accessible desk already in the classroom. Instead, what I've done is I turn the chair around so that the desk is facing me and find that it has worked well for my chair's height. This is also handy because since the seat is empty I can use the now empty chair that faces in front of me to put my books, backpack, or binders that I don't need.

As a gadgety nerd I am continually fascinated by the new technology that wheelchairs have these days. I have heard of apps on smart phones that will allow wheelchair users to control their chair, chairs that are able to climb stairs, and even chairs that have back massages and seat warmers! ... Okay, so that last thing is really just a chair that exists in my fantasy world... but still.. a girl can hope!




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