A Girl Who Rides Pt. 3

Hellooo faithful readers!

In a time where attention spans are the length of a TikTok, I’m honoured you’re here! 

I have decided to pick up a writing series I started back in 2017. A Girl Who Rides is a blog series chronicling my life story by the four wheelchairs I've had so far.

As a little refresher, Pt. 1 told of my adventures in my first ever wheelchair, a pink and purple Barbie chair! In Pt. 2, I introduce my next wheelchair—a teal Kid Power—and explain the struggle to embrace my identity as a disabled person in my middle and high school years. Transitioning into a new wheelchair has actually always corresponded with major life transitions, and the wheelchair I’m about to tell you about is no exception.

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Let’s throw it all the way back to 2006. Think Pirates of The Caribbean: Dead Man's Chest, the train wreck marriage known as TomKat, and a time when people still cared about American Idol. It was my senior year of high school, a time filled with high excitement and high stress.

I was a dedicated student—almost to a fault— and all the hours spent staring mystified at pre-cal equations (which I am still convinced to this day came from aliens), was coming to an end. Cue the Graduation Song!

🎵 Duh-duh-duh-duh-duhh-duuuh-duh-duh-duh-duh-duuuh 🎵

Unlike some of my classmates, I was actually sad to see graduation time approaching. It’s not like high school was so great or anything—there are so many cringey things I said and did that still haunt me to this day—but I also knew there was something safe about it. Getting into uni was all I had been dreaming of, but it still Terrified me.

I wanted to appreciate every last minute of high school so you can imagine I wasn’t too thrilled about missing countless days of class to be fitted for my next wheelchair. Even though my Kid Power wheelchair was fitting me just fine, it was recommended I get a new wheelchair before graduating high school.

(Side note: obtaining funding for children's equipment is not really a problem but as soon as a disabled person turns 18, the Manitoba Government considers a disability the person’s responsibility. An average power wheelchair costs well over $10,000+ but as soon the person turns 18 years old, they should be able to automatically afford it on their own because hey, that’s what all adults should automatically be able to do!)

The fact that it would be a struggle to get life-sustaining equipment for the rest of my life didn’t sink in at the time. Blame it on my not-fully formed teenage brain but naively I felt attending wheelchair fittings during my last semester of high school was a waste of time and energy. I was still polite to my OT and the wheelchair tech (I mean, this wasn’t their fault), but those appointments were excruciating, both mentally and physically.

Getting a new wheelchair was a really difficult transition, partly because it was just. so. big. The reasoning behind sizing-up was that I might grow yet and they wanted me set up for the future. I guess you never know if a girl with SMA Weak Type II who is 4’ 10”, has never weighed more than a hundred pounds and has toothpicks for arms would suddenly become a glamazon.

We were trying to customize the wheelchair for me to use but my body was not adapting well to the changes. With the orientation of the new armrests, I was losing significant mobility in my arms, something I obviously wanted to avoid. As I was nearing my 18th birthday, the team broke up with me. The engineer said it was too frustrating to keep making adjustments and I would just have to live with it. Excuse me? If he was frustrated, how do you think I felt!

It was actually quite insulting at the time, but I was partly relieved he called time of death. Besides exhaustion, I had missed so much of my last semester. However, one instance I absolutely did not mind missing class was when I became an auntie! Holding my newborn niece in this wheelchair turned out to be the first of five auntie experiences and I am incredibly grateful to have them in my life!

Their sense of ease with being around the wheelchair in turn actually made me feel at ease with being in a wheelchair! Prior to their acceptance, I never wanted to be photographed showing the full chair—only from the waist up. You can even notice it in the photos. Truly a “how-it-started-how-it-went“ experience! 

Becoming an auntie was the start of so many milestones for me in the next ten years. High school graduation, starting uni, going to Hawaii, Florida, Mexico, and California, and last but not least, graduating uni in 2018.

This wheelchair—an Invacare Storm Series Ranger X—represents the happiest, healthiest time of my life. A time where I felt the most optimistic of the future. I possessed a quiet confidence in my skills as a writer and in 2017, I typed out my first entry on this very blog sitting in this very chair. It was both scary and exhilarating and I loved it!

There were of course some very difficult times in my 20s (I lost my ability to eat independently due to muscle atrophy) but even in the lows it still felt like if I worked hard enough, I would be able to achieve my goals and dreams.

Little did I know life doesn’t always work that way. Sometimes it’s not about dedication and hard work but rather hardship and tough breaks that decides one’s fate. My next wheelchair—the Invacare Storm Series Torque SP—was going to prove that to be true. Until next time!

– Crissi xo