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Confessions of a neurotic wheelchair user

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Cranberry

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Part I


Spring is a harsh season for me. There's the beautiful rebirth of nature, it's true. But there's also all that salt and sand used on slippery roads during winter accumulating on the side of the roads or boardwalks. Not to mention all the dog poop unpicked by dog owners during winter now reappearing with each new layer of snow melting away. It's an obstacle course out there. A constant duel between the wheelchair user and the forces of nature in an urban setting. I have to maintain constant vigilance to evade all the traps laid for me but the enemy is too well organised. You see, the puddles are out to get me. They have a mind of their own you know. They plot with each others. They wait patiently for me, treacherously hiding themselves in the shadows of curbs and parked cars. Oh yeah, the puddles are out to get me and each spring, they get me good. Each time I go out, my wheelchair is covered with a spotted leopard pattern of muddy stains.

That's a terrible torment for a selective clean freak like me (If you could have a look at my messy apartment, you would understand why I call myself a selective clean freak...). I can't stand being seen in public with a dirty wheelchair. It's hard to explain why. Any good web site about "Wheelchair Etiquette" would tell you many wheelchair users consider their wheelchair as an extension of their body, part of their personal space. To me, keeping my wheelchair clean and shiny feels like a part of my personal hygiene. It even ranks higher than wearing clean underwear or brushing my teeth on my list of priorities!

I wipe gush off my wheelchair daily but I keep the thorough cleaning job for sundays. It's part of my predictable routine. Sundays are scrub days. I get the sponges, washclothes and buckets of soapy water. Just like in all the eternal epics between the forces of good and evil, my wheelchair becomes a battlefield where the stains left by the armies of puddles are met by the armies of bubbles. Nothing is left untouched. All removeable parts are washed independantly. Every spoke of my sun rimmed wheels will be caressed and scrubbed with tender love and attention until its chrome can shine playfully when touched by the rays of the sun. The cushion will be dusted, washed and straighten so it is again fit to welcome my humble derriere. I'll also invest some time in basic maintenance, checking the brakes and tires' air pressure, doing any required adjustments. The whole process takes me an average of two hours. This is my routine, my meditation, my journey, my obsession.

A clean wheechair is a work of art. Sometimes maybe even a masterpiece. With one, I can face the world holding my head up high, gliding silently in the middle of crowds, almost floating, unnoticed until my clean wheelchair reveals itself in all its amazing sparkling beauty. I then become popular. Suddenly. People want to know me, talk to me. They are charmed, maybe even seduced. I'm a mystery they want to unravel. They invite me to join them in their conversations. For a brief moment, I become one of them. We talk about stuff and the weather, introduce ourselves, debate the war in Irak, discuss the merits of the latest movies we saw, share ideas and maybe even a drink. Believe me you. A clean wheelchair is a ticket to social life!

But it never lasts long...

Just like clockwork, a secret agent working for the puddles uses trickery to ambush me and ruins it all. Faking lack of manners and consideration, this shadowy figure will commit an act of unmeasurable depravity. He will do the unforgiveable. While engaged in conversation with me, he will use my wheelchair as a foot rest... He will place his boots, usually dripping with festing unholy puddle water, somewhere on my wheelchair, usually on top of a wheel or on the small bars right above a caster. With this single act, he destroys all my previous labor of love and breaks the spell. I'm not longer a guy with sparkling personality in a sparkling wheelchair. I'm just a guy with sparkling personality but in a crummy dirty wheelchair.

Until next sunday!

:D
 

ShetlandRose

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I agree you certainly have journalistic flair!

I used to do all that you mention in cleaning a wheelchair for my quadriplegic friend...but it didn't get done once per week (now you have made me feel quite guilty). It is a tedious job, including carefully washing and drying the inside air-pocket seat cushion. But a gleaming wheelchair is indeed a thing of beauty!
 
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Jinnapiban

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Okay cran...... it's unanimous! you need to write professionally......

have you made any efforts toward that profession?

You definitely have my admiration.... in fact, i am ashamed of myself after reading this...

there are many weekend days when i go out looking like a slob, not even aware of my own appearance and don't think a thing about it...

i need to rethink what God has blessed me with and how i am thanking Him for those gifts.

Thank you for sharing your experiences, they are truly inspirational and thought provoking.

jinna
 
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Cranberry

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Miss Mayberry said:
Do you know what? You should write articles for a newspaper, pamphlet, something. You have fantastic writing skills. :)

ShetlandRose said:
I agree you certainly have journalistic flair!

Jinnapiban said:
Okay cran...... it's unanimous! you need to write professionally......

have you made any efforts toward that profession?

Aha! My writing skills are no match for my mad quoting skills, especially when compliments are involved! ;)

Thank you all three, your words are like Grade A maple syrup to my ears, but I only write for fun. The first draft of that text was "Don't use my wheelchair as a footrest if you're wearing dirty footwear". I thought it was short and perhaps too blunt, so I decided to add more details while trying to poke fun at myself. My intent was to get people to grin by exposing some of my quirkiness.

I must say I'm a bit worried now. I feel Part II of my confessions can only be disappointing to readers after such positive reviews of Part I...

Ack. :eek:


ShetlandRose said:
I used to do all that you mention in cleaning a wheelchair for my quadriplegic friend...but it didn't get done once per week (now you have made me feel quite guilty). It is a tedious job, including carefully washing and drying the inside air-pocket seat cushion. But a gleaming wheelchair is indeed a thing of beauty!

I'm gonna sound corny and mushy, but I'm sure your quadriplegic friends has a special spot for you in his heart.

(And don't feel guilty, if I had one of these roho air cushions I probably wouldn't clean my chair weekly either).


Jinnapiban said:
You definitely have my admiration.... in fact, i am ashamed of myself after reading this...

there are many weekend days when i go out looking like a slob, not even aware of my own appearance and don't think a thing about it...

i need to rethink what God has blessed me with and how i am thanking Him for those gifts.

Thank you for sharing your experiences, they are truly inspirational and thought provoking.

jinna

Hehehe, thank you Jinna but I'm one of these annoying politically incorrect crips who doesn't like to be told they're inspirational and worthy of admiration. ;)

I'm sure you have no reason at all to be ashamed of yourself and that you never go out looking like a slob.

Don't lie like that!

Tsk :)
 
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Cranberry

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Confessions of a neurotic wheelchair user
Part II

A little lady asked me if I slept in my wheelchair. It happened this morning at the grocery store. We were waiting in line at the cashier's register, me with my grocery basket full of nutrionional foods (butterscotch syrup, butterscotch ice cream, butterscotch toffee and, of course, cranberry cocktail) resting on my thighs, her looking at me curiously from behind the safety of her mother's legs. She had a very cute dimpled smile. Her question took everyone by surprise, especially me, but I answered it as honestly as I could. I told her the truth, that I don't sleep in my wheelchair but that I wished I could so that I would be sure nobody could ever borrow it without my knowledge and permission!

You see, I'm very territorial when it comes to my wheelchair. On many web sites devoted to wheelchair etiquette, you'd read that most wheelchair users consider their wheelchair part of their personal space, sometimes even an extension of their body. I consider that to be a blatant understatement, at least in my case. My wheelchair is my set of legs and my autonomy. I'm protective of it as the alpha male of a wolf pack is of his territory. My chest becomes the home of an approaching storm everytime I feel I might have to protect ownership of my wheelchair.

I can't really blame people for wanting to try my wheelchair tho. It's really cool-looking, with its six degrees cambered wheels, low back without handles (I don't need anyone pushing me thank you!), dark colors and mountain bike style tires. It's light, rolls silently and almost effortlessly. It's ideal for doing spins, popping wheelies and doing stunts in stairs, which makes it look more like a toy or skateboard than an adaptive device. My wheelchair is as sleek, racy and sexy as a wheelchair can be. I'm sure if it wasn't mine I would want to try it too. So it's true, I can't really blame people for wanting to try my wheelchair.

The label "confined to a wheelchair" is technically false. No one is really ever confined to a wheelchair. You still sleep in a bed and can still sit everywhere even if you're a wheelchair user. But neurotic wheelchair users like me give some truth to the "confined to a wheelchair" label. The only thing preventing me from drooling at the sight of leather sofas or lazy-boy furniture is my fear of puddles. Oh how I wish I could rest on the firm cushions of my friends' couch. It's draped in green velvet, covered with comfy pillows and warm wool blankets and just plain alluring. I can almost hear it calling me seductively, in a soothing, charming voice, like a mermaid singing to a lost seaman but with a sexy british accent. Oh how I wish I could answer that call, but I can't, for that would mean leaving my wheelchair unused. Inevitably, someone would want to try it. I just can't take that risk!

I'm also very careful about who I allow to visit me at my place. I have a secret to keep, a fact I'd prefer people near me not know. I own two identical lightweight manual wheelchairs. There's always an unused wheelchair at my place someone could borrow and try. I must not allow people to know this! It's my safety spare, well hidden in my bedroom, under a blanket. I'll turn into a grumpy old hermit and never allow visitors to my place if that's the price I have to pay to protect my spare wheelchair. I have these awful nightmares in which my apartment is turned into a wheelchair amusement park for rowdy children. I usually wake up screaming, covered in sweat, my chest pounding just after the kids started playing "bumper cars" with my wheelchairs. Awful, awful, awful nightmares...

Over the years, people have come up with various theories to explain my reluctance to loan my wheelchairs. Some people think I'm in love with my wheelchair the way some marines are in love with their rifle in american movies. Most bipeds just think I'm crazy and weird ("bipeds" is how wheelchair users call non-wheelchair users around here).

Sometimes I think it's about money. The starting list price for an Invacare A4 wheelchair is 2065 US dollars on that company's web site. One of my chair is covered by the canadian health care system, but repairs take some time (even weeks), hence my need for a spare, and maintaining that spare is at my expense. Changing that wheel my cousin's son damaged by ramming it on the side of a coffee table, breaking three spokes, cost me almost 300 dollars. Last fall, I had to buy a new set of casters after a friend hit a pot hole while trying my wheelchair on the street. Another 150 dollars. Wheelchairs are expensive toys. But I'm not stingy. I have money and I could afford a few hundreds dollars a year to provide my friends with the joy of wheelchair riding, because using a wheelchair really has its good sides. You also learn a lot about the way wheelchair users are treated by bipeds by using one for a day. It's a potent learning experience, well worth what it could possibly cost in replacement parts.

I also considered the possibility it had to do with my wheelchair's seat. It's elevated on the left side to compensate for my body's asymetrical form. I'm taller on my right side than my left side, for an average of five feet six inches. Each time I loan my wheelchair, I have to spend some time playing with straps and extra layers of cushion material. But frankly, I'm not that lazy and I have a long life ahead of me. I'm not counting minutes, I'm too busy enjoying them.

In all honesty, I think my fear stems from something more fundamental. Something incredibly basic that I should be ashamed to even mention. Something so simple it should not even need to be explained... Everytime someone uses my wheelchair, I feel stuck where I am. I know whoever I loaned my wheelchair to will be back eventually. I'm just afraid it will be too late. It happened many times in the past. They came back too late. I called them as loud as I could. I even begged them to hurry, to no avail. They would be back only in time to see my sorry face and eyes glued in the direction of the bathroom's door...
 
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Jinnapiban

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Cranberry said:
Hehehe, thank you Jinna but I'm one of these annoying politically incorrect crips who doesn't like to be told they're inspirational and worthy of admiration. ;)

I'm sure you have no reason at all to be ashamed of yourself and that you never go out looking like a slob.

Don't lie like that!

Tsk :)
Hey cran.... great 2nd edition! I am SO happy to hear that you are not PC.... don't worry, you'll never hear anymore drool from me..... just

the best part for me about your stories is your unbelievable honesty, it is quite refreshing & uncommon!

looking forward to the next one..... :pink:


jinna (who truly can slob when she doesn't take the time ^_^ )
 
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ShetlandRose

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Cranberry ~ Mercy! You should write a book! You have the talent to wrap your audience around your finger and then beg for more. More--more--more please--

-----------------------

Say, have you ever had a wheelchair tire blow out in a public place? Talk about a faux pas. I was in a huge church sanctuary when one blew like a pistol shot. That's what everybody thought it was too. People were looking around white-faced for who was bleeding or dead. The pastor at the pulpit was stunned speechless. The paraplegic was laughing so hard with tears in his eyes that it took minutes before he could yell out that everything was allright. :)
 
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Cranberry

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Part III

Wednesday evening I accidently broke one of my toes. It consider to be a good cause. I need to stop forgeting being barefoot is not all that safe when using a wheelchair tho. Toes are sometimes hardy explorers and unafraid of the unknown. As such, they have a tendency to venture beyond the safety of a wheelchair's footrest, putting themselves in harm's way. I'm reminded of their temerity at least once a year by a series of events culminating by a visit to the emergency room. Have no worries tho, my left foot's pinky is no longer in a critical state. The doctors look confident, the prognosis is good and that tiny fracture should heal fully in no time.

My visit to the emergency room has been a positive experience. It was unusually quiet that evening. I had the waiting area all for myself for a while. I ordered a trio (doc, x-ray and large Coke) when the triage nurse finally called me. I didn't have to wait long, but I still had some time to think by myself. I felt enlightened while staring at a dying, flickering neon light. Truth hit me with a 30 pounds frozen cod (Well that's the way it felt!). I have been lying to myself for a long time about who I am. I'm a fake. For years and years I've held the belief that the real limits are in our minds, not in our bodies. That's something I repeated countless times to disabled kids and teens I got to work with ten years or so ago. I've always liked to think I had freed myself from these barriers in my mind. But that's just not true. There are still things I'd like to do but don't because I'm afraid. One in particular.

I want to dance.

There seems to be so much freedom in dancing. Life in motion. I'm fascinated by all kinds of dancing, from tango to that crazy line dancing stuff with cowboy hats and to the rythm of country music. I love it all. My favorite is the type of dance seen in dance clubs. I know electronic, trance, rave or even disco music is tacky but I still like it. I'm a bit embarassed to admit it tho, which shouldn't prevent you from teasing me about it if you'd like. Anyway, I love that type of music. I love the way people dance to it. There seems to be no rules but the ones you make for yourself. These dancers seem alive in a way I wish to experience.

That's a secret wish I've had since I was a geeky teenager. It was even stronger in me during my college years. I never did anything about it tho. I condemned myself to be nothing more than a spectator. The idea of dancing from a wheelchair just felt too strange and akward to me. I just could not bring myself to face the looks of others. I was afraid of humiliation and looking like a fool. So I watched from a safe distance, avoiding any risks, denying as best as I could my desire to be part of it until eventually, in my mid-twenties, I sort of completely gave up on the idea of dancing and forgot about it. I never even tried.

Like most deep seated wishes, it eventually came back to haunt me however. It's really goofy how it happened. I was watching music videos on TV while chatting with some of my younger cousins. Eventually, a video by a corny rapper named Ludacris was presented. It's titled "Stand up". It's full of teenager humor and the usual rapper stuff, but it also features four dancers using wheelchairs. It's just a few short scenes, maybe for a total of ten seconds. There's a trio of dudes doing a synchronized choregraphy. They're not disabled, but they have some wheelchair skills. The way they moved and used their wheelchair was neat. You can bet my fascination for dance was tickled vigorously. I was glued to the TV screen.

Then came the solo dancer, a young woman who is a paraplegic. Her hair style reminded me of Princess Leia from the original Star Wars movie. My first fictional character crush. Feel free to tease me about that too. But her looks are not what left the most vivid impression on me. She really was a good wheelchair dancer. She made a "lassoing" movement with her right arm, using her left one to control her wheelchair into a perfect spin. There was much elegance and grace in her way to move and, for a moment, I thought she looked like someone figure skating. She was gliding over the floor. We only see her for a few seconds in the video and that's a shame. I could have watched her dance for hours.

My cousins are very perceptive young women. I didn't have to say a word, they just knew how I felt while watching that video. I think they conspired with each other to help me rid myself of my cowardice. They got me copies of that video so I could compulsively watch it over and over, which I did. They lured me in nights out with them in dance clubs, trying to shake me off my safety zone. They're not the pushy types tho. They still show great respect for my limits and venerable age. They also know I wouldn't hesitate to tell stories from the days I babysat them to their boyfriends. The perfect blackmail. But I don't think anyone could ask for better encouragements than the ones I get from them. I still feel clumsy and akward, I have no clue how to dance using my upper body only yet, but I'm definitely getting there. It's difficult because there are so few models around. Wheelchair dancers are rare. I'm trying to find inspiration in the movements I learned in self-defense, tai chi and stretching classes. I'm even starting to believe something that I keep telling others, that what matters is not how good you are something, but how well and happy it makes you feel.
It's trite but it's true. I still have the occasional relapses however, like wednesday evening...

I was eager to show the move I had been practicing for a week to my choregrapher in chief, my cousin Ludmila. It's a very complex move inspired by the one performed by that paraplegic dancer. It's the same basic lassoing movement of the right arm combined with a spin but done while popping a wheelie. It's pretty difficult to do and also incredibly stupid and foolhardy. I don't know what I was thinking when I came up with that idea. I still became quite good at it and managed to do it succesfully many times, but it went awfully wrong during my demonstration for my cousin. I completely lost control of my wheelchair. I fell backward, my legs rising high into the air. My pants, which were loose, were pulled to my ankles by the centrifugal force while the pinky of my left foot was intercepted by the corner of a desk, resulting in a fracture. My cousin gave me a score of 4.

Despite being a minor setback, this incident had a very fortunate consequence. I am no longer afraid to embarass myself while dancing. It's already done. I can't do much worse than I already did. The only fear I have left is for my toes. I'm considering getting them individual tiny helmets or perhaps wearing metal-tipped boots. I'll figure out something. It doesn't really matter. That fear won't get in the way.

I will dance.

:cool:
 
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Cranberry

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This is just a quick post to thank you all for your kind words. With each new compliment, my ego inflates a little more like a helium balloon. Soon, my head should be big enough to life me in the skies and take me on a tour of the world. Thank you thank you thank you. :)

ShetlandRose said:
Say, have you ever had a wheelchair tire blow out in a public place? Talk about a faux pas. I was in a huge church sanctuary when one blew like a pistol shot. That's what everybody thought it was too. People were looking around white-faced for who was bleeding or dead. The pastor at the pulpit was stunned speechless. The paraplegic was laughing so hard with tears in his eyes that it took minutes before he could yell out that everything was allright. :)

Hahaha :D

I sadly have to admit I don't have a similar anecdote to tell. That's probably because I use low pressure tires. They're wider and offer better traction on slippery ground, which is great because I live in a town full of steep slopes, but when they blow, their last words are nothing but a pathetic pffffff as they slowly deflate. Nothing as glorious as what happened in the anecdote you told. Please share more of them with us!

Jinnapiban said:
jinna (who truly can slob when she doesn't take the time ^_^ )

Jinna, I wish to inform you that as a gentleman I consider it my duty to absolutely refuse to take a lady's word for it when she claims to look like a slob. As long as I'll live, you can count on at least one person to disagree with you about this! (I also have no doubts I'm not then only one!)
 
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Jinnapiban

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Hey cranberry! I know I promised not to do this, but the idea of you rising up like a hot air balloon made my eyes water.....

You truly have a gift for communicating in a clear and humorous way... and you're so sweet & complimentary.

okay, you heard rose, bring on the next edition!

jinna :pink:
 
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