I’m restless. Restless inside my mind and this body—within the constraints of my wheelchair. I want to get up and move. To stretch, climb, jump and run. I’m convinced that the increased spasticity that’s taken over my legs—causing them to seize and shake uncontrollably—is my body’s way of giving physical representation to my inner angst. I’m struggling to find the positive spin. My mental health is not on the up-and-up and, while my depression has been in remission for a long time, it is shifting. And I am struggling.
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.
A woman came up to me in Starbucks the other day. She smiled and asked, Are you Codi? The sarcastic side of me always wants to respond with Was it the glasses that gave me away? But as my husband has pointed out, people may not see the humour and instead simply think I’m an asshole. So I smiled—mostly at her, but partly because of my husband’s lecture running through my head—and I said hello.
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.
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.
Today, December 3, is International Day of Persons with Disabilities. The theme for 2018 is about empowering people with disabilities and ensuring inclusiveness and equality. It’s a tall order for just one day. I’ve been somewhat privileged since my injury to be in a bubble of inclusiveness. I’m surrounded by family and friends who make it a priority to include me. I have a husband who does everything in his power to make sure I experience all that I can. I have this blog that is followed by people who take an interest in disability, accessibility and equality. But lately I am seeing through my bubble. I am noticing how foreign disability still is to so many who don’t have personal experience with it. I am noticing how quickly my concerns are ignored and how accessibility issues are disregarded. I am noticing how much work still needs to be done.
I had my period the day of my accident. I remember laying in the trauma room asking little to no questions about my injury but telling every single nurse who would listen that I had a tampon in. I didn’t stop until I was sure they had taken it out – it seemed unnecessary to add toxic shock syndrome to my list of current complications. Looking back, it was probably one small thing I felt I had control over. But, as all women know, we don’t really have control over our periods.
Spinal cord injury awareness month is still on my mind. My last post talked about the aspects of SCI that I struggle with the most: bladder and bowel control. But I was thinking about what awareness really means and how shining a spotlight on only the challenges can draw focus from the accomplishments and the awesome lives people with SCI are living – it can skew people’s perceptions. And while I think it is incredibly important for everyone to understand the struggles and barriers that someone with a spinal cord injury comes up against, it is equally important to understand that so many of us choose to face those challenges because we still want to live our lives – spinal cord injury and all. There is happiness, adventure and so many amazing things still possible and bringing awareness to SCI means showcasing that as well.
September is spinal cord injury awareness month and today, September 10, happens to mark two and half years since I suffered my injury and became all too aware of this condition. Seconds after I fell I can remember repeating to myself It’s just your legs. It’s just your legs. In that moment, I was comforted. Reminding myself that it was just my legs was reassuring me that I was going to be ok – I was going to survive and still be a mom and a wife and everything else that meant the most to me. I just would do it without walking. And frankly, I truly thought it was just my legs. It didn’t even cross my mind that there would be more to my injury than the obvious physical damage. As it turns out, the legs are just the beginning (and the easiest part).
While everyone’s injury is different, there is a long list of complications resulting from SCI that range from body temperature regulation to muscle spasticity to blood pressure issues and beyond. But the most difficult and devastating aspect of this injury for me (and for many) has been the loss of control over my bladder and bowels.