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.
Living With SCI
As I sit down to write this, I have a choice: give you the highlights or give you the truth. I want to go with the highlights—it would be much easier to go with the highlights. It would be much easier to give you the inspirational you have no limits #yolo version of my weekend (note for my mom: YOLO = you only live once). But I can’t give you the highlight reel because the highlight reel feels dishonest. Because in the less than 48 hours I spent away this weekend, I experienced awesome highs and terrible lows and the most confusing part of it all is that spinal cord injury was at the root of everything.
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.
I miss the days when I peed on sticks to test for pregnancy instead of bladder infections—a positive result was so much more exciting. When I discovered this latest infection my words to my husband were I really don’t have time for a bladder infection right now. But whether or not I have time for it, it has arrived.
How much of my life am I going to dedicate to managing pain?
This is the question that ran through my mind last week as I laid on a therapy bed for what felt like the millionth time, while the physio poked needles into my forearm in an attempt to relieve some of the tension and pain (it was a nice change from the needles in my shoulders and lats). Once that question came to mind, I did the thing that my counsellor and my husband have told me time and time again not to do: I spiraled.
My 12-week transformation challenge is complete and I know what you’re thinking: She’s not skinny yet. I get it. You hear transformation challenge and expect a huge reveal Biggest Loser style. But as I said in my very first post, the main focus of this challenge with True North Strength and Fitness and Westcoast Nutrition wasn’t on the reflection in the mirror. This wasn’t about finding a quick-fix to achieve dramatic results in a short of amount of time in order to garner attention based on unbelievable before-and-after photos. This was about making a start.
May I ask how the wheelchair happened?
Getting this question from strangers still throws me off my game. I wish it didn’t. I wish I could respond with some wild fictional story like I worked in a zoo and a gorilla threw me against a wall, and then watch their curious eyes go wide. When they inevitably say Wow, really? I would smile and just say No, not really, and go on my way. But that is not how I function. I’m the kind of person who thinks of great comebacks in the shower, days after they are relevant. I’m the kind of person who feels like I would offend these curious strangers by not offering a truthful answer when, in reality, they have just invaded a random person’s privacy by asking said person to share the most complicated and traumatic event of their life. I’m the kind of person who recently reacted like this.
Nobody ever knows how they will respond to trauma—whether it happens to you or somebody you love. In the case of my accident, my family all found their own ways to cope. What did I notice? My husband put all of his energy into caring for me. My dad threw himself into renovating our home and my mother-in-law was consumed with taking care of our children. But my father-in-law, he dove head first into research—he needed to fix this.
I’m officially half-way through my challenge with True North Strength and Fitness and Westcoast Nutrition and the first six weeks has disappeared incredibly quickly. I’d love to say time flies when you’re having fun but I think the more accurate representation would be time flies when you’re busy taking care of a family while attempting to eat well and get to the gym three times a week. The time-management struggle is real. However, taking this time for myself has absolutely been worth all the extra scheduling and calendar confusion. At the mid-way point in this challenge I have had good weeks and bad weeks and wanted to share a little update.