When I started writing this, it was for myself and I wasn’t totally sure if I wanted to share it. I worried, what will everyone think if I post this on social media:
Will my friends, classmates, bad tinder dates and future colleagues think this is too personal, or be uncomfortable with a post that doesn’t have any cute puppies, beautiful mountains or delicious food in it? Does a post about my personal experience with a disability I pretend not to have 90 percent of the time belong on my highlight reel?
Yes. Yes it does. Because I mean what good highlight reel doesn’t have a dramatic monologue? Just kidding. But I decided to post this, because I recently connected with a few people who have had similar experiences, and who were brave enough to share their stories. I found myself laughing at their stories and relating to their struggles, seeing my own in a different light. I found comfort in their words, and I am hoping mine will do the same for someone else.
So despite my fears, I decided to share a post about the one thing about me everyone has noticed, but I have only discussed with a handful of people. Spoiler alert: It is not my ridiculous good looks or perfect tan. It is my disability, spastic diplegic cerebral palsy.
Cue dramatic monologue….things are about to get mushy…you have been warned.
As a twin I was born six weeks early and with underdeveloped lungs, but otherwise healthy. My twin sister and I were put on breathing tubes until our lungs developed. I was smaller and mine took a little longer, but my breathing tube was taken out at the same time as hers. In retrospect this isn’t weird, the two of us have always competed, and l hated losing any kind of race to my sister, I probably made the doctor take it out.
Fast forward 16 months I wasn’t walking, and I was diagnosed with spastic diplegic cerebral palsy, likely caused as a result of oxygen deprivation during pregnancy, birth or more likely from the early removal of my breathing tube.
So what did this mean? It meant that the muscles in my legs would not grow as fast as my bones and that I would walk with my toes turned in (unless I focused on it, and for those of you who know my attention span, you know this can’t be a long-term solution). I like to use the analogy that my muscles feel like they are guitar strings that some drunk rockstar just keeps tightening. As a kid I did physio, I wore braces, I went to doctors in the United States, I considered surgery, I went for massages and wore muscle zapping machines when I slept. I once even thought a hypnotist would cure me. Pretty much my entire childhood I tried for a cure, to be better, to be normal, but as an adult I have shifted my focus to acceptance, because spoiler alert, the hypnotist thing didn’t pan out.
My disability made a lot of things harder for me as a kid. I was a slow study, which for a girl who liked to be the first one to finish her math tests and multiplication minutes, was a real struggle. Slow study aside, I learned how to do a lot of things. I played baseball, volleyball, did gymnastics, and water sports, tae kwon do and dance. I got my fair share of bruises and had to spend a lot of time in the backyard with my dad “mastering” the skills that didn’t come so natural. By no means am I, or was I ever a world class athlete, but I was stubborn, and I wasn’t afraid to fall over, or hurt myself, or look silly, and there was no way in the world I was going to quit until I figured out what I set out to do, except figure skating, that one was hard. These traits have served me well into adulthood. I’m still stubborn and refuse to quit. I am not afraid to look silly, just ask my friends who I embarrassed daily on my trip to Iceland. Perhaps the most important thing my disability has made me, is soft, not physically, I am convinced my bones are made of concrete, but emotionally. I am more compassionate, more caring, more generous, more patient, and more grateful for the abilities I do have, and did I mention stubborn?
I wouldn’t be that way without all the love, support, and humour from my family, parents, sisters, aunts, cousins, friends, colleagues, and classmates. So thanks team, you are the real MVPs. Bonus points if you have held my hand on a patch of ice, or over a rocky patch on the mountain (Maddi), threatened to beat up someone that made me cry (Jordyn), made me do my physio (Mom), took me skating and made me play every sport under the sun (Dad), made horrible jokes while I ugly cried (Megan, Carissa, Brandi, Courtney, JJ, Kirsten, Brooke, Shelby), brought me smoothies when I couldn’t get out of bed (Brittany), or taught me how to wakeboard for six hours (Brooke), and everyone in between, thank you.
As disabled people go I am very lucky, mine looks and for the most part feels like I sprained my ankle in a 5K Family Fun run your overeager sister signs you up for, and you forgot about (Jordyn). It is also something my close friends and family have accepted since I was kid. But it hasn’t been without its struggles. I still had/ have my fair share of stares from strangers, or mean comments from kids on the playground or people in the work place, or bouncers who won’t let me in the bar because I look too drunk. I still have bad days when I wake up in pain, or am frustrated when I catch a glimpse of it in a mirror. I still get a little mad when I fall down, and I am not one of those people that is going to sit here and tell you, if someone offered me a guaranteed cure tomorrow I would turn it down, because I just love my disability, it’s a part of who I am. I can’t speak for everyone, and if there are people who feel that way good for you, but to be honest I think anyone who tells you that is full of $#!%. But I am getting to a better place with it. I used to be terrified that question was going to come on a first date, and what would I say? Shark attack seemed like a better answer than cerebral palsy. I used to feel so bad if my friends needed to help me on the tricky section of hike. But now, I have realized a shark attack seems implausible for a prairie girl, and I have just started to thank my friends when they lend a hand.
One of the selfish reasons, I wrote this is because I have always had a hard time telling people about my disability or even saying it out loud, but l am working on that, and I can’t think of a better way than just ripping the band aid off, figuratively, I of course would not waste band aids, I need those. So here goes.