A Girl Who Rides Pt. 2
Updated: May 29, 2020
First off, I want to thank everyone for their positive response to my blog. It's been such an exciting, yet humbling experience and I am so grateful for the apparent success of my new passion project!
To be honest, though, it's a little intimidating to write the next installment of A Girl Who Rides lol. The first post got such positive feedback it's hard to know where to go from here. I feel like I have to put out a disclaimer that I'm normally not that mischievous. Seriously.
The only explanation for my rebellious childhood is that Barbie made me do it. Once her and I parted ways, things changed. I changed. I mean, it's kinda hard to top Barbie! She's the queen of, well, everything. She can be a doctor, a veterinarian, a rock star, a pilot—and all simply with a wardrobe change. What can't she do?
Being in my Barbie chair made me feel like I could do anything too. I could be anyone. When I was five years old I knew for certain that when I grew up, I was going to be a doctor, a ballerina, and a mom. Yet, when I went from my Barbie chair to my next wheelchair, it felt like my childhood fantasies faded away on a cloud and I was left with the heavy, oppressive feeling of my reality. I was growing up and my disability was growing in magnitude.
2. Alternate Reality Check
I got my next wheelchair when I was 9: a Kid Power chair, with teal accents and purple and yellow swirls on the pockets (it was the 90's people. Don't judge!). While teal was my favorite color at the time, it never came close to the cool factor of Barbie. (side note: excuse the painfully awkward tween stage of braces, scrawniness, and questionable hair choices).
I wasn't ready to give up Barbie but it was recommended that I get a new chair for the growth spurts I would soon be having. Yeah, right. Does it look like I'm on the verge of being a teenager? I was way behind on the whole puberty-development thing.
Once I got the Kid Power, it was like my childhood was over. I know the word "kid" is in its name but it felt like something changed when I sat in it for the first time. Something breaking, like my childhood shattering into a million pieces.
Now, this is not to say that I was constantly unhappy during this era. I still had adventures, went on trips, and had amazing, supportive family and friends. My bff Raquel and I had so much fun together and have memories and inside jokes that will last a lifetime.
However, for the purpose of this post, I want to capture the essence of what it meant to go through adolescence slowly realizing the gravity of my disability. I began to feel extremely self-conscious about being in a wheelchair. I couldn't keep up with my friends anymore at school as they ran around at recess and I started to be VERY aware that being stuck in a sitting position while everyone else could run around was Just. Plain. Weird.
The look of the chair started to bother me. It was just so big and black. Already feeling disappointed about its lack of the "it" factor, one little girl asked me why I would pick a black chair because it was so boring!
We made a valiant effort to give the Kid Power some flair by adding seasonal stickers to my tray every month. I loved stickers and to be able to take these colorful decorations on and off was creatively liberating. Sparkles, scratch-and-sniff, puffy. All were tried and appreciated for their originality. Let me tell you, though, some stickers would hold on with a death grip and then we would have to get out the big guns... WD40, the metal spatula, and some serious arm muscle. It would often scratch my tray but it was SO worth it! Nothing would beat the feeling of putting fresh Back to School stickers on the night before the first day of class. The rulers, the apples, the school buses! You can see that my geeky ways started early.
While the stickers offered a disguise of sorts, I was still struggling with my identity. When I would go out in public, I became aware of the stares and awkward looks people would give me, especially other kids. I tried to ignore them but the carefree, open aspect of my personality was beginning to get lost in a sea of disillusionment.
I was slowly changing. More guarded to the outside world. More introverted because when I was alone, I could still daydream that I was "normal."
You see, even though I was in a wheelchair 90% of the time, in my mind's eye I saw myself without one. It didn't feel like part of my identity yet. Up until my early 20's, whenever I would dream at night, I would be walking! And when I would daydream, I would create elaborate story lines and situations where I would experience a miracle and be able to walk. Often my imagination would involve being a part of my favorite TV shows—Home Improvement, Fresh Prince of Bel-Air, Growing Pains—where I would be a cool, mysterious character with an intriguing past.
So... does it sound like I might have been in denial about having SMA?
Yup. I had it bad. No better example of the gravity of my denial occurred in Grade 6 when I was supposed to draw a picture of myself for a school project. When I requested my educational assistant draw me around the campfire sitting on a log, she said that was wrong because that's not really how I sit. She strongly suggested drawing me in a wheelchair instead.
I was so annoyed. How dare she ruin my imagination? I wanted to insist that she draw me like everybody else but it was too late. The pretense was shattered. The balloon was popped. I looked around at how the other kids were drawing their pictures and I so wanted my picture to look like theirs but I knew it couldn't be. I felt embarrassed, ashamed, and...different.
Mixed with the fact that people have a tendency to stare at you when you go out in public, it was hard for me to embrace this two hundred pound tattoo called the Kid Power wheelchair. However, whether I liked it or not, the chair and I were stuck together like glue. And always would be.
As I went into my teen years, I started to get more comfortable with who I was and who I was never going to be. I slowly came out of my shell and could be myself with my friends, more or less. I still felt like an outsider but was willing—for the sake of surviving high school—to put my social anxieties aside and try to embrace the chair.
Going off to university, though, would give me a chance for a fresh start. With getting fitted for my next wheelchair at 18, I wanted to make sure this next chapter of my life wouldn't be as dissociative as the tween years. Learning to love myself meant learning to love the chair, every part of it.
I wanted to leave you with some powerful song lyrics. While I'm sure Coldplay didn't write Paradise for a teen with SMA, the words are hauntingly relevant to a girl who experienced the realization of her reality and the allure of her dreams:
When she was just a girl she expected the world But it flew away from her reach So she ran away in her sleep and dreamed of Para-para-paradise, para-para-paradise, para-para-paradise Every time she closed her eyes
When she was just a girl she expected the world But it flew away from her reach and the bullets catch in her teeth Life goes on, it gets so heavy The wheel breaks the butterfly every tear a waterfall In the night the stormy night she'll close her eyes In the night the stormy night away she'd fly
And dream of para-para-paradise Para-para-paradise Para-para-paradise
She'd dream of para-para-paradise Para-para-paradise Para-para-paradise
- Crissi xo