There were a lot of things I didn’t know about disability when that swift but severe fall left me paralyzed from the bellybutton down. In fact, I was blissfully unaware of almost everything. But as surprising as it was to learn about wheelchair life as it unfolded in front of me, there was one thing that really shocked me about this new club I suddenly belonged to — and it had nothing to do with my body. It was all about the unwritten rulebook.
This is the face of vaccine anxiety. Not a covid-denier or anti-vaxxer—simply, vaccine anxiety. Now please don’t just come at me with facts, figures and stats like anxiety can be reasoned with. Trust me, I’ve tried to help it see the rational side of the argument. Things like, the science, the numbers and the risk vs. reward. Or how about the fact that I’ve been vaccinated my entire life without a single issue. You might think all that would calm the anxiety but it prefers to plug its ears, close its eyes and say “la la la, I can’t hear you” over and over again.
What if I told you I want to write a book. That I was finally ready to share my story as only I know it. Maybe you think I’ve done that already, but I’ve kept a lot of the intimate details to myself. All of the memories that shaped my life from what it was before to what it is now, keep pulling at me—telling me to sort through them, string them together and create something that resembles a coherent retelling. And I want to answer that call. I want to write a book. In fact, I started writing it months ago hoping that one day I could add it to my bookshelf next to my constantly growing collection of memoirs.
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.
Give this paraplegic a wrist injury and watch the catastophizing begin.
I don’t mean to brag, but I’m really good at the catastrophzing game. I can go from All is well in my world to My entire family is dead in a ditch in the span of a few seconds. Or, more relevantly, You need to rest your wrist for a week to My independence is gone forever and my life will never be the same without pausing to consider a more realistic outcome. I’ve spent decades (yes, decades—plural) perfecting my anxiety skills and this little wrist problem was the perfect catalyst to put them into practice.
We decided to dress up for New Year’s Eve. Ok, that’s not totally true. I decided that we would dress up for New Year’s Eve and played the “Please do it for me card” to get everyone else to agree. After spending a week in pjs and sweatpants—wait, who am I kidding? After spending most of 2020 in pjs and sweatpants—I needed a reminder that we could still put in the effort, shake off the dust and get, just a little bit, fancy. Even if it was only to go to our kitchen table.
The first Halloween my daughter could walk was the last Halloween that I could. She took to the neighbourhood for trick-or-treating as a mermaid—accompanied by her brothers: the fisherman and the scuba diver. My mom crocheted her mermaid’s tail out of a bright green yarn and I looped tulle through the bottom of it, giving it a tutu effect. She wore a matching hand-made toque and a purple long-sleeved shirt—because, Canada—with knitted flowers in place of seashells.
I have lived through seasons of immense grief. Existed within the loneliness that loss, anger and frustration often brings. Haven’t you? I think we’ve all experienced periods in life where we wake up in the morning, heavy with the responsibilities and pain of our current reality. The well-intended offers of sympathy feel hollow. They result in our feigned appreciation as we retreat into our unstable existences and our well-meaning family and friends proceed with their lives as usual. But right now—in the grief, uncertainty and frustration of this Covid-19 pandemic—we are not alone.
I shut the bathroom door behind me. My daugher’s voice was in my head saying “take rainbow breaths Mommy. They help you relax”. I attempted to take her advice—which is really my advice—while fumbling with my toothbrush and the seemingly empty tube of toothpaste. But the truth is, sometimes deep breaths achieve absolutely nothing. Nothing that is except momentarily delaying the inevitable which—in this case—was me, sitting alone in the bathroom, crying as I brushed my teeth.
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.