My kids want to go skiing. And my husband wants to take them. Me? I organized the gift cards for Christmas presents and I keep checking our calendar along with the weather to help find a day where our schedule and the environment align in magical harmony. I want them to experience the freedom and beauty of the mountain. I want them to expand on their athletic abilities. I want them to have the opportunity to stand at the top of a run, look around themselves and feel not only the enormity of the world, but also of the privilege it is to be a part of it. But—if I’m being totally honest with you—there is a part of me that wants them to absolutely hate it because I can’t do it with them. I’m Jealous. There, I said it.
Daylight hadn’t reached our backyard. But a blanket of untouched snow—the first snowfall of the year—couldn’t wait for the break of day. By 7:30AM—the time we would usually be getting out of bed—our kids were all ready for school. They were layered up in snow gear and were outside rolling giant snowballs. Ian and I watched them out the french doors of our bedroom and couldn’t resist calling it an unofficial snow day. The cheers came one after another from outside as brothers told sisters and sisters told brothers, “No school!”. They were excited but I was left feeling indifferent due to my love/hate relationship with snow.
Everyone’s doing it—sharing the moments that shaped their lives over this last decade. But how do I? How do I summarize an entire decade? A decade that changed my existence in the most amazing and heartbreaking ways. I was filled with purpose, broken and rebuilt more than once over the course of the last ten years. In amongst the years of celebrations and storms there were many moments of calm and simplicity—clarity—time to breathe in between the chaos. But those moments seem to hide in the wings as the highs and lows take centre stage. So while I have experienced and learned more than I could ever fully express—or adequately summarize—in a single blog post, there are moments of significance that seem worthy of reflection.
When I opened my eyes, Ian had already left for work. The early daylight that crept in through the cracks of the blinds let me know I was on borrowed time—my alarm would go off any minute. Having crawled in at some point after midnight, my daughter was asleep beside me and with the rest of the house quiet, I lay awake wondering if my boys—my perpetually early risers—might actually need woken up for school.
How do you know it’s Autumn? Outside the changes are everywhere. Fall knows how to make an entrance with its vibrant colours, falling leaves and endless Pumpkin Patch This Way signs. And while I am one of those people with a deep-seated love for pumpkin spice and scarf weather, for me, the realization the season has changed is far more subtle than the altered landscape and seasonal menu at Starbucks. It’s in the air—and inside of me.
September is Spinal Cord Injury Awareness month and for whatever reason, I’ve been struggling to say anything about it. With dozens of accounts posting about everything SCI from daily realities and accessibility to fertility and equal rights, I have mostly remained silent—struggling to offer a fresh perspective. But to provide some insight into my current frame of mind and resulting hesitancy to share, I’m going to tell you this: I’m feeling privileged. And because of that privilege, I’m questioning the validity of my voice.
Six months after my accident, my son started a new school. I knew nobody—truthfully, I wasn’t certain I knew myself yet inside this new body and new reality. My son was understandably nervous to make a change, but I was terrified. Many people who experience sudden disability say it shows you who your true friends are. They lose people. That never happened to me. Everyone I loved, showed up for me and my family. I didn’t want to meet anyone new. I was different now—obvious—a bit of a mystery, and I wasn’t sure I was ready to unravel all of that with strangers. And any parent can tell you that the drama within the social circles of the adults can sometimes rival that of the children. So to say the least, my anxiety was heightened as my son and I both found ourselves in new territory.
Imagine you could re-write your life.
Would you do it?
Would you remove your struggles and omit all of your sadness and pain? Would you remedy every regret—every bad decision? Would you take more chances—different chances—or try harder? Would you sift through your life, altering details and discarding parts of your history onto the cutting room floor until ultimately editing all of the pieces together to create your one perfect story?
Don’t give up now
your best kiss
your hardest laugh
and your greatest day
are still yet to come.
But what if they aren’t? What if everything in my life was better before paralysis? Maybe I had my best kiss, my hardest laugh and my greatest day—all of my best memories—before this injury became a part of who I am. How could I possibly have a best-of-anything-moment now that I have this disability? Everything was better before.
What if I believed all that?
Can you send me a picture of your feet?
Confused? So was I. The first time I got a message like this—yes, there have been multiple—I had no idea why this person wanted to see my feet. But I didn’t like it and, of course, did not oblige. In fact, I blocked them. And I blocked the person after that and the person after that and every person since. While I knew sharing my paralysis journey publicly would leave me open to a higher level of scrutiny, I never once considered it might subject me to a wave of sexual objectification and introduce me to a world where disability is fetished in such a way that it dehumanizes and exploits individuals. And yet…here we are.