Sunday, April 25, 2010

Operation "Weekend in a Wheelchair"




Sunday night, so much to reflect on--it has been quite a weekend. I'm thankful that I had the chance to conduct this little experiment, and I have a clearer picture of a lot of things, and some new questions as well. Here's a recap of my weekend in a wheelchair...

Ok, the first question everyone asks is "Did you cheat?" So let me be up front with you: I "cheated" on things that, were I truly a wheelchair user, I would have modified. These things include carrying the chair up the stairs to my 2nd story apartment (see story below), standing up in the shower due to lack of a shower chair, and standing up to reach hangers in my closet and into the washer/dryer. If I were legitimately spending that much time in the chair, I would have my closet accessible and a front loading washer/dryer. Everything else, I did as legitely (that's right) as I could.
Another quick caveat to my weekend experience is that I "cheated" by using my abs/having trunk control to accomplish things. I tried to make everything as realistic as possible, but when the muscles are there and they still work, there's just no way to completely turn them off. Enough prefacing, let's do this already...

My weekend began with a rude awakening upon entering my apartment. Who knew carpet was my worst enemy? I knew it wasn't going to be smooth sailin, but crap...I had it out with that nasty fluff all weekend!! Next snafoo was the the kitchen. I couldn't turn around in it, so I either had to back myself in, or go in forward but take the long way to get out. My kitchen is so tight that i couldn't open the pantry door more than about a foot unless I used some real trickery, and to add insult to pretend injury, we stash our cereal on the top shelf. ...I might have cheated there, too. Let's face it, I needed my Wheaties.
Next stop was the bathroom. Aside from carpet, I daresay the bathroom is the bane of a wheelchair user's existence. I couldn't fit through the door, so I transferred (via scooting) to a rolling desk/office chair and wheeled into the bathroom that way. If you had any notions about how hard it is to propel a wheelchair on high pile carpet, try it in a desk chair. I practically had veins popping out of my arms and my fingers in a permanent bear paw position after clawing my way into the tile bathroom (I had to mention tile there--what a godsend. Somebody remind me to send the creator of tile a thank you note later...or perhaps just a srongly worded letter to the sadists at the carpet company). Toilet transfers were the toughest. At first, I didn't know whether to go pants down in the chair and then transfer, or wait til I go to the toilet, and same story for going pants back up again. I tried a few different things before figuring out what I can only assume is the best way to go about it...but that's not saying much. For those who are curious, the winning combo was pants down in the chair, pants up on the pot. You should try it sometime: try managing your clothing in a seated position without moving your legs/hips. For first timers, I recommend setting aside a good 20 minutes. :)
Now for one of my favorite stories from the weekend: I volunteered at a handcycling clinic on Saturday, which involved helping transfer people from their wheelchairs into handcycles, so naturally, I had to cheat for a few hours here as well. At the end of the clinic, one of the other volunteers saw a lone wheelchair (the one I came in) parked under the pavilion and informed the organizer of the event. Instant panic set in as everyone thought we had lost someone! Man down! Someone has gone MIA, or some slacker volunteer did a less than stellar job keeping track of their participant. I quickly told them that the chair was mine, to which they responded "No, the WHEELCHAIR." Right. The wheelchair. He's with me. :)
Funny story two (i'll make this one quick): wheeling from my car to the steps of my apartment, locking my brakes, hopping out and carrying my chariot up the stairs just in time to give our neighbors across the way a good laugh/feeling of horror as they witnessed this miracle from their balcony. I wish I could say this happened just the one time...
Saturday afternoon I vacuumed my apartment, did some laundry, and attempted some light cooking. My shoulders were on fire because everything...I mean EVERYTHING was taller than I was in the chair. So you remember when you were in elementary school and you raised your hand when the teacher was turned toward the blackboard and you waited for what felt like an eternity with your hand in the air? Remember using your other arm to support the one in the air? It was like that, except the teacher never did call on me. I'm writing a letter to the publisher of Dante's Inferno to incorporate this into the 7th level of hell.
Saturday night involved a trip to the grocery store. this was really interesting to see the social dynamic. Let's first review some of the social norms/grocery store protocols: When passing someone in the aisle, pleasantries are not exchanged unless of course you are walking between the person and whatever shelf item they are perusing. So, aside from people staring, I found that people would say "excuse me" even when we were just passing each other on our respective sides of the aisle. I also found that people would try to make conversation with me, which, as we established earlier, is something one might do when passing someone in a park or something, but not so much in the grocery store. Another hurdle was getting to top shelf items that were out of my reach. I would wait for someone to walk by and then ask them to do me a solid. Most were more than happy to oblige; however, one woman (granted she was older, so she may have just been hard of hearing) didn't acknowledge me at all. I asked her twice, the second time a little louder, plus I was positioned right next to her, and she didn't so much as look my way. Again, I'm sure this was attributable to the pitfalls of being an octogenarian, but I admit I felt self-conscious and a little gun-shy after that. After making the cashier dismantle the credit card machine so I could see the screen, I secured my grocery bags by whatever means possible and made my way out. I think the cashier and I were both laughing inside when I declined his offer of "Will you be needing help getting this to your car, Miss Booth?" No thanks, Charles, I like to live life on the edge.
Getting dressed: difficulty level around 6/10. This quickly jumps up to an 8 or so when trying to put on jeans straight out of the dryer. A word to the wheelchair using wise: always air dry your pants.
Car transfers: I got the hang of getting in and out, but the real booger was dismantling and assembling the wheelchair from the car. The best was doing a car transfer and my arm hitting the horn for a good 5 seconds while I hoisted my body into the car. That's the last thing you want when dragging your body into your car in front of an audience: more attention drawn to you in your time of short-lived struggle.
Another quick quandary of the weekend was the setup of my apartment complex. They have a curb cut from the parking lot (applause) followed by...you guessed it...steps. What a feat of engineering genius. Thanks for the curb cut though, guys. At least now I can park my @$$ on the sidewalk instead of being arrested for loitering in a public parking lot.
Highlight of the weekend was going to church on Sunday evening. I sat next to a fellow wheelchair user: a guy about my age in a power wheelchair. We introduced ourselves and had that instant bond that you feel with your frat brothers, your teammates, or with other freshman on the first day of high school. Our conversation at the end of the sermon went like this:
Guy: "How long have you gone to church here?"
Me: "About 3 years"
Guy: "Hmmm, me too...how have I not ever seen you here before?"
Me: "Well, I'm usually not in the chair..."
Guy: "What, like you're faking it?"
Me: "Yeah."
Guy: "But you move like you're a para(plegic)...you did your pressure reliefs and everything!!"
In case anyone is wondering, that last statement was specifically the highlight of my night. The fact that I was playing the role well enough to make a believer out of someone with an actual spinal cord injury. However, I felt like I needed to apologize to him for my act of deceit, even after explaining my experiment. No hard feelings. Made a new friend. :)

That about sums it up. It was a great learning experience. I enjoyed seeing people's reactions and the innocent, inquisitive stares of children. Admittedly, I took some risks in my wheelchair that I probably would not have done if I were actually a paraplegic. Again, I tried to be as realistic as possible, but there were times where I did something and then afterward realized that I only did it because I knew that if it really came down to it, I could get myself out of it: if I fell over in my chair, I could pick myself up, dust myself off, and pop right back up, which would not be the case in reality. Also, I would be a fool if I didn't acknowledge the fact that my self-confidence and self-image in the wheelchair would likely be drastically different if I were 1. a legitimate wheelchair user and 2. a life-long wheelchair user. Even if only subconsciously, I knew that my term lasted a mere 3 days.

Now returning to life as a non-wheelchair user, I am still learning where the balance is between being overly nice/overly attentive and being standoff-ish/rude. I found that people generally were at one of the two extremes: either going out of their way to be nice to me, make conversation with me, wanting to help so much it made me seem helpless, etc. or they avoided even making eye contact with me for fear of being accused of staring at the handicapped. That being said, if you see someone in a wheelchair at the grocery store or getting in/out of their car, I'm sure most would appreciate you asking if they could use a hand. Another thing I've recently learned: wheelchair users are some of the coolest people you will ever meet. They all have an amazing story to tell, and have an inherent air of coolness about them for having dealt with some sort of tragedy and come out victorious. What's that saying, "Attitude determines your altitude?" Quick, somebody write that down...

7 comments:

  1. So glad you did this Kaylea! Thanks for sharing...

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  2. That was awesome! Thanks for writing your thoughts. It provided some great insight!

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  3. Such an interesting experience, and I love reading about it. I can so picture you doing this!

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  4. Favorite part is your miraculous healing in front of your neighbors! I bet that was so funny to them!

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  6. Kaylea, I saw mentioning of this on fb the other day and I was most definitely intrigued! I am proud of you for being bold enough to challenge yourself to something like this and really commit to it. Mostly Im proud to call you a friend. You always have such intelligent and insightful things to say and I am truly in awe of you...constantly. Well written and a good read my friend. Let the blogs continue! Miss you and love you!

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  7. Kaylea! So proud of you for doing this! It was great to read over your experience but also to think about what patients go through on a daily basis. Can't wait to read more! :)

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