Showing posts with label power wheelchair. Show all posts

...Is when I'm not in my wheelchair.

Even though during the day I rarely take conscious note of my chair, it is still something that appears as the tiniest blip on my radar even on my best days. The attention drawn to my chair by others is always there during the day when I'm going about my business. On a usual day I've grown to be able to keep that attention faded to the background; unless someone comes up to me and starts a conversation about it or why I'm in it - the stares and points (on a good day) pretty much are a non-issue and remain as standard as traffic lights that dot the scene of my day-to-day environment. The light changes color and I move along: nothing fascinates me about this interaction, and it's something that I just expect to happen.  We all know it will happen.
But like I said, even on my best days, even on days when the fact that I sit in a wheelchair is something in the background - it is still there in my mind. I can't avoid it and it's not something I have the desire to avoid either, that route just seems pointless anyway I look at it.

Still though, it can be tiring. It's tiring to wait for someone to come help me get un-stuck from a snow bank because the curb cut is not plowed. It's tiring when I sit in this one position all day. It's tiring when finally I think I have a minute to myself when a gaggle of kids on a field trip are all gawking. It's tiring when someone thinks they're being so original with their car-related comment i.e. "you'll get a speeding ticket!" "Has that passed inspection yet, where's your sticker?" "Don't drink and drive!" "Do you have a license for that?" It's tiring to hear about how Sally's grandmother has the same chair as me. All of those things are tiring to deal with which is why usually I don't. My eyes typically glaze over and I nod, and I smile but really I am doing anything but paying attention. I don't really allow myself to think about how annoying the chair is, because I know that it's not the chair's fault. But there is a part of my thinking that says there are too many irritants out there to 'deal with' one by one - and the chair is just one thing... and if only I could change that. But I can't.
The most that I have figured out to do is learning how to not let those irritants get the best of me. I relegate them to the background noise of my day, sometimes with significant effort and other times with as little as a shrug and a smile.

The best that I can explain being out of my wheelchair as being my favorite part of the day... would be to compare it to when I take out my hearing-aids at the end of the day. Some of you might be hearing-aid users and others not so I'll do my best to explain:
Hearing-aids serve to amplify the sounds in your environment. Depending on settings and personal hearing-loss they might be amplifying higher pitches or the tones that might be lower. There are hearing-aids that focus on individual voices, those that can block out the background noise of a heater or a classroom fan - but still, these noises are amplified to the wearer.
For me when I first take out my hearing-aids there is this immediate vacuum of silence that rushes into my ear canals. And it is the most relaxing noise for me, even more so than the sleep machine app on my ipad that makes waterfall sounds. That shush of every sound in my environment creates a stillness to the end of my day that I appreciate (particularly after stressful and busy days!)
What I'm experiencing when I take out my hearing-aids for those few seconds or minutes is an adjustment period. My ears have just been pummeled with amplified sounds for 9-12 hours of the day and suddenly everything seems muted, it is bliss I tell you! Then my ears will adjust and I will begin to hear my environment again at my usual hearing-loss-level decibels.

But that is what being in my wheelchair during the day is like, and then being out of my wheelchair at the end of the day. During the day my wheelchair amplifies itself to my environment, making it and my differences known to those who have the urge to take note of it however they choose. At the end of the day, when I am out of my wheelchair again, there is a certain silence to the attention it brings - it is in the absence of it. 

1. Seat belts
They are a great thing and I always have mine on unless I'm in a parked position. After too many accidents of falling out, or nearly falling out I have become a paranoid constant seat belt wearer. (The fact that I am always zooming off somewhere means that my seat belt wearing has literally been a life saver.) This also means that I am always looking for where it is! It drops between the wheels and the seat. It becomes tangled in the spokes. It drops in the crevice behind the seat. Somehow it has become wrapped around the metal handlebars. And my hand is always reaching for it in all of the weird spaces, jammed in somewhere that I'm pretty sure the manufacturers never intended for me to cram my fingers into.

2. Jammed fingers
When not in school or at work I use a manual wheelchair. It's easier to get around in places that might not be accessible, and also it collapses easily in friends' cars. Manual wheelchairs are great! And I particularly like when I switch from my power wheelchair to my manual because I feel more.. human in it. I feel less like a robot or a transformer. With that said though there is one gripe I have about a manual chair: because it is something that I push myself in, I frequently have jammed my fingers into the brakes. Usually this is because I haven't fully released the locks yet, or because I'm just not (as usual) paying attention to what I'm doing with myself. But ramming my thumb into the brake mechanism is probably one of my most frequent injuries in a manual wheelchair.

3. When it rains it soaks
People who are not wheelchair users just get their outer-wear wet. They can take off their jackets, their hats, their shoes etc and feel dry within minutes. Wheelchair users however have the joy of sitting in wet cushions, or against the back of the seat as raindrops casually drip down it. Let's not forget the armrests that collect puddles of water, the little pool that is only waiting for my elbow to carelessly rest into. Most of the time I have been lucky to find a bathroom that has automatic hand dryers that I just chill underneath the nozzle for a bit... otherwise it leaves for a very very long day.

4. It's not their arm rest, elbow rest, bag carrier, good-deed-of-the-day etc.
Unless otherwise requested or given permission, none of those things applies to anyone else except for the one in the seat. It has gotten to the point where I have no qualms about moving forward when I know someone is leaning on my chair (and the person didn't ask beforehand.) The other piece of this is that unless requested - do not rush (and assume) the person in the chair needs your help. There are reasons for why wheelchair users are super protective of their mobility devices. Would you want someone rushing to touch your legs and untangle them for you every time you tripped? Probably not. That's a little weird to have random hands all over your limbs. It's the same boundary concept; the faster non-wheelchair users get that line drawn in their minds the less tempting it will be for us to flatten toes at will.


Got others? Leave them in the comments section! 

Clunky and deflated I felt gravity winning this tug-of-war as I seemed to hiccup along. My tire must have looked like the sagging jawline of an aging Muppet: the bottom of the tire jutting out with exaggeration, in stubborn protest of ever feeling filled with energy again. What is usually a smooth ride instantaneously felt as though I was on a creaky ferris wheel seconds from toppling over. I would ascend, jolt, bump, and clamber back down what was in reality only a few inches but what felt like I was experiencing rough turbulence on a transcontinental flight. It must have looked like a bumbling mess, filled with all the awkwardness of a baby taking its first steps without all of the drooling cuteness.

I was that struggle passersby clearly recognized needed help, but no one offered because no one knew how. Honestly, I didn't even know how.

My eyes scanned the brick paths of Harvard Square, searching earnestly for a path with fewer gaps and hungry maws of potholes or unleveled brick determined to gnash my careless tire, never to let it or me go again. The search was in vain as I felt my chair teeter-totter on a precarious point that was being desperately fought over by air and gravity.

I became desperate and began uselessly urging my joystick forward, trying to convey to the little mechanism you're not going fast enough! You don't understand! Come on, worrrrrk betterrrr-er-er! Since physical force was clearly not making a difference I resorted to mental telepathy:
Okay almost back to the dorms now. We're almost there. Just a little further and I can call campus security to pick me up in their van.

If I had been a less stubborn, less proud (?), less adamantly independent, less can-do-this-all-by-myself, and a whole lot less of the I'm-fine-everything-still-works .. I probably would have called a friend - any of whom would have been more than happy to accompany on the journey back to campus. But I didn't.

In my head I could hear my parents' voices fretting "Do you need me to drop off your manual wheelchair? I can come right now!" "Don't fall over! Who is with you? I'm going to call the school nurse." "This is why you need a personal care attendant with you all the time. Just imagine what you would do if you didn't go to school near home!" Of course that only encouraged me to continue plopping along.
Though it took forever and a day to get to the outskirts of campus, the slim area in which the college's vans would venture to pick-up students.. I finally made it. Sometimes the chances we take are irrational and not computed by the probability for injury, disaster, or total failure.

There wasn't really a life-changing, light-shining, earth-shattering point to this post. It was just to say that sometimes I'm willing to risk it and I get lucky. Something tells me there are moments when you do too.

If there were no stairs in the world it'd be a flatter place, but not in the same way Columbus had believed. If there were no stairs in the world the toy slinky would be a whole lot less fun. If there were no stairs in the world Mary Poppins would never have swooshed up or down the banister. If there were no stairs in the world, the great pyramids of Egypt would look staggeringly different.

If there were no stairs would elevators accommodate more? If there were no stairs, would Machu Pichu still be one of the seven wonders of the world? If there were no stairs, would fire escapes look like slides? If there were no stairs would an old house creak as much? If there were no stairs would bleacher seats be different? If there were no stairs, would dollhouses have fire poles instead? If there were no stairs would we all cannon ball into the pool? If there were no stairs would the stepping stool exist? If there were no stairs how would Cinderella lose her glass slipper?

If there were no stairs no one would ever say "go wait by the stairs." If there were no stairs you would never hear "I can take the stairs instead." If there were no stairs kids would never be told "don't try sneaking down those stairs!" If there were no stairs firemen would never say "use the stairs in case of a fire." If there were no stairs trainers would never say "sweat it out on the stair master." If there were no stairs fewer would say "sorry, it's inaccessible." If there were no stairs maybe fewer would say "oh I'm so out of breath!"  

If there were no stairs more people would know the thrill of racing down ramps. If there were no stairs more people would think about fewer accommodations. If there were no stairs, people might all enter and exit through the same doors. If there were no stairs universal access might be a little more universal.  

If there were no stairs I'd do a whole lot less problem-solving. If there were no stairs I wouldn't be carried around as much. If there were no stairs I might say "I can't.." less. If there were no stairs I could crash more house parties. If there were no stairs I wouldn't shop on-line as much. If there were no stairs my voice might not carry up the stairwell the same way. If there were no stairs I might not be as alone in a stuck elevator. If there were no stairs,

The world would be a less interesting place, and I'm a sucker for interesting.

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!

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!