Perfectly Imperfecta

In a previous post I had mentioned that there are a handful of things I wish I could do but I can't, for everything else I have figured out an alternative. Here are those 5 things:

1. Run a marathon. Well, I wish I could run in general. I'm a sucker for all things fast and speedy. But there is something about marathon runners that's incredibly dedicated and determined. To be able to say "I pushed my body through 26miles.." is probably something I won't be able to do any time soon.

2. Snowboard down a mountain. A lot of my friends snowboard. No, I don't want to ski - I want to snowboard. My friends make it sound cool and it looks awesome! Besides there aren't too many ways I can really enjoy winter and the never-ending piles of cold white stuff that we get here in the Northeast. To race down a mountain on a board, fly through the air while you're doing gravity-defying turns and flips, and then land upright (hopefully) -- what's not to love?!

3. Diving into a waterfall. I can't really explain this one but it's just something I want to do.

4. Climb stairs in my wheelchair. This would solve a lot of my day-to-day problems, not to mention it would make it SO much easier to hang out with my friends (most of whom are not wheelchair users). Not only are these special chairs way out of my budget but I also doubt my health insurance would ever say yes, climbing stairs in your chair would dramatically improve your physical health - we will buy it for you. Even if I did somehow manage to get one in my possession some day, I would probably still be paranoid of it malfunctioning in the middle of the staircase or something! What can I say? I'm suspicious of technology..

5. Stop breaking. This would be the ULTIMATE dream for me - but it's not something I've figured out how to do yet. I know, I know, we can't STOP breaking but we can do our best to prevent fractures from happening and strengthen our bodies so that fractures are not as frequent -- but don't we ALL wish we could just STOP already?!

For everything else that I have ever wanted to do that may have seem slightly ... impossible.... I have either just done it with all the risks & consequences in mind, or I have been lucky enough to find an alternative. As someone who is an adult, my capacity to "just deal with it" is a lot greater than when I was five years old, and unable to "deal" with not being able to run around with my friends. There isn't an easy answer to teaching kids that unfortunately their disability is limiting in some capacity.

(Major bonus points & automatic friend for life if you message me telling me how I CAN do one or more of those things).

Tips on "getting over it" :

Instead of saying "You can't" it's less harsh and less definitive if you said "I'm not sure..." or "I don't know..."
Don't bullshit. At a certain age it's appropriate to cover things up and say "well you can't go on the Superman roller coaster but the kiddie one is just as fun!" But after a certain age we all know that's just not true. Being honest and owning up to the facts and reality builds on a younger person's ability to cope. "I worry that you might get seriously hurt if you went onto the 'bigger' kids' rides.." is legitimate, honest, and also introduces the idea of consequences
Personally I have 'gotten over it' by finding things that only I can do well that other kids aren't able to do as well. These are things that I am passionate and interested in, practice a lot of because I enjoy doing it, and have found my own 'thing' to hold over other peoples' heads and have THAT be out of reach for THEM
Allow the time and ability to express how upsetting it is to not be able to do something. Brushing it off and moving forward too quickly is just another way of 'covering things up' and it will feel like you are not legitimizing a young child's feelings or dilemmas

Background info: In the city where I live there is a public/private van that picks up disabled individuals and provides door-to-door service. Although I definitely prefer the independence of public transportation and not have to rely on these rides, unfortunately my family's house is in the middle of the suburban woods and isolated from any form of public transportation.

*****

Rain fell wildly and angrily from the sky that evening after dinner. We were cold, our jeans clung to our legs, and I shivered as the AC blasted above us in the van that picked us up. As I shivered and tried to dry off by wiping off my wheelchair's armrests and seat, the driver made empty conversation as he went about strapping my wheelchair down. First were the two back wheel locks, then the two front ones,

"Alright let's get you out of this rain eh? Hahaha"

"Heh, yeah." I mumbled. What was he chuckling about? There was nothing funny about being drenched in the rain.

"So had you been waiting long? Did you notice that I came early? I came early for you!" He said eagerly.

"No we hadn't been waiting too long. Thanks for coming earlier, we appreciate it."

He then headed to the front of the bus and closed the passenger side door, the lights inside the van shut off automatically. The only source of light was the streetlamp a few feet away from the van, but that was blurry at best as it tried to dodge past the frenzy of the windshield wipers. I could feel my friend R immediately tense up as she sat there in awe of her first wheel chair-van riding experience. I realized I had forgotten to explain to her beforehand that it was required they lock my wheelchair up with what would look like 500 tie-downs and seat belts.

The driver finished putting the two front tie-downs on my wheels and then strapped on a seat belt over the orange velcro belt he had already put on me. It doesn't matter that I already have a seat belt on my wheelchair, the other five seat belts across me were required, as I had been told countless number of times. After he finished putting all the safety precautions on me he went outside again to fold the ramp back up,

"Umm Sandy, I have.. a lot of observations right now. Like, are you okay? Is this normal? What is going on right now?" In her typical fashion R already had a scowl on her face it was the one where the alarm in her gut instinct just went off.

"Yeah they have to do this. It's just for safety reasons. I've had this driver before though, just warning you -- he's a talker."

"Okay but.. what if something happens to you? Like what if I weren't here? It.. well.. it just doesn't look like you would be able to get out of the van if something bad happened."

"I know, you're right. I've always wondered that myself just never asked."

The driver got back inside his seat and marked down some information on his clipboard. Instead of turning the van lights on though he put his glasses on that... wait..

"Umm do your glasses have flashlights on them?" I asked uncertainly, thinking that maybe the rain and the blurry lights were playing tricks on me.

"They do have lights on them. Y'know.. it's so that I can keep my eyes.. on you." He glanced up at the rear view mirror and smirked at me.

"Oh.. cool. You kinda look like an eye doctor." He laughed at my comment in an odd nervous falsetto. Next to me my friend R had a completely horrified and puzzled look on her face. I settled into my seat for a few minutes as we headed towards the highway,

"So you'll be my GPS right girl?" He looked at me.

"Yeah sure, no problem" I replied.

About ten minutes passed before I decided to interrupt his odd rambling and his thousandth comment about how rainy it was,

"Can I ask you a question?" He looked at me from the rear view mirror expectantly waiting,

"How would I get out if... well..if" It wasn't until half-way through my question that I realized asking him about a worst-case scenario late in the evening in the middle of monsoon-like rain that it probably wasn't the best timing, but I went ahead with it anyway,

"...if something bad happened? Like if there was an accident?"

"WWOOOOOWWwww. Really? I mean, THANKS for the vote of confidence."

"No- I'm sorry, I wasn't implying anything. I was just wondering, it's something I've always wanted to know."

"Yeah? Sure. Well I hope you didn't just jinx me. I've never had anything happen to me though, knock on wood. Well you know, we're just real careful. I mean, it would never be anything so serious that I couldn't get you out or anything. Don't you trust me?" His voice bordered between that of a new father talking to his child and the host of some day-time kids show. R twisted in her seat and continued to scowl.

"Oh sure, of course I trust you. I was just wondering, y'know. No big deal. Sorry - timing has never really been my strength."

"And here I was thinking that you were going to request a radio station or something.. hahahahaha" There was that laugh again. The sound of it echoed awkwardly in the odd silence and darkness inside the van, outside rain continued to beat down senselessly. For the rest of the trip back to my house I stayed silent and uncomfortable, rain water had seeped into the seat of my wheelchair, the back of my t-shirt felt like it had grown tentacles and would never let go of my skin. All I wanted was to peel off this wet fabric and denim from my body and jump into something DRY.

Finally we were home. There is something demoralizing about having to sit in a wheelchair in a torrential downpour, at night. But for those 10 seconds that it takes for the ramp to deploy and lower itself to the ground, I felt beyond pathetic and helpless.

"Let's get you out of that rain eh? Let's just get you out of that rain!" The driver stood on my driveway, maniacally repeating himself and shaking raindrops that trickled down his bald head - somehow he still had that silly grin on his face. At that moment I decided that when you try to hurry those ramps down, it will only seem like it'll take another five minutes to finally touch ground.

But finally it did and my friend and I clambered out of our wet clothes and changed into dry pajamas, exhausted from the day, the weather, his cackling falsetto laugh that he seemed to hurriedly scotch-tape to the end of every statement he made, the massive dinner.. When we were both in bed and about ready to pass out R openly expressed her concern with me:

"Sandy that was really creepy. Are the drivers usually like that?"

"Nah, most of the time I just sit there with my iPod on and they don't bother me. He's a special one though, he's always like that."

"I just keep thinking like, if it were me on that van -- you know, he wouldn't talk to me like he talked to you. In fact, did you notice? He didn't talk to me in the same way he talked to you."

"Oh... well.. no I didn't really notice. I don't really pay attention to this stuff as much as I should."

"He knows that's not how you talk to a 20 something year-old woman. He knows because he didn't talk to me like that. Ugh it was just so creepy!"

"I guess I don't notice the difference in way people treat me. I don't know why."

"Well, it's probably because you expect it at this point. You're used to it. I noticed that when we went to Vegas, everyone treated you with that voice."

"I mean I know that it's wrong but I've never known how to address it. I don't know how to without sounding rude or brusque or frustrated. I just accept it and then I'm always trying to prove myself 500 times harder than I really should to make up for their assumptions."

Showing posts with label brutal honesty. Show all posts

5 Things I wish I could do...

That Voice I Shouldn't Be Used To

Search

Need a Translation?

Main Topics I Write About:

Yesterdays