They told me I would be independent. The doctors. The nurses. The internet. They would walk into my room and tell me how capable I would be at the same time they watched me hold my finger on a button to slowly raise the head of my bed and sit up. Laying in that same bed—one I could only leave and return to by the strength of a mechanical lift—my glasses reflected the articles and social media accounts I scrolled through on my phone. The ones that told me independence was the goal—the gold standard of disability—and I could achieve it. It was the finish line to recovery and when I reached it, I would once again be a whole person.
Do you ever wake up and think “Maybe, just for today, I don’t have to be me.”
This morning it felt like being me was a job better left for somebody else. Someone skinnier perhaps? Stronger? Smarter? Definitely someone better hydrated. But no matter how much I wished to have a day of reprieve—from this broken body. From the constant bickering coming from every corner of the world. From COVID and the bizarre back-to-school transition—I woke up as expected. In my bed, in my body, in my life.
I’ve been quiet. At first it was unintentional—the residual effects of quarantine fatigue that stripped me of any desire to write, share or be accountable for my thoughts in any sort of capacity. In the midst of my silence the real world erupted and the online world became hostile. I didn’t particularly care to be part of either of them and my silence became deliberate. I did not shout Black Lives Matter from here, there or anywhere. Instead, I watched and read. I wrote and deleted. I talked with my kids and discussed it all with my husband. But here, in this space, I stayed quiet—I said nothing. However anyone who knows me, knows I can’t stay quiet for long and I’m here to explain why you won’t hear me talk about racism.
I was sitting on the patio—relaxed on the couch using my wheelchair as a footrest. My hair blew around my face as a breeze swept through—the winter chill now replaced with the reassuring warmth of Spring. The document I was meant to be working on—full of choppy ideas and void of a single complete thought—sat open on the laptop in front of me. My mind wandered without the spark of inspiration.
Hello faithful readers. How are you all? Life has changed since the last time I wrote to you here. There is isolation and alarm amidst a virus wreaking havoc the world over. A virus that toys with the end of world scenarios that, as children, kept us up at night and taps into our deep-seated fears of loss and death—there isn’t much beyond the threat of illness and death that could bring the world to a stand-still as this has. And if this pandemic hasn’t changed your life, you are doing something wrong.
Christmas is gearing up around my house and I’m pretty excited about it. Honestly, I love everything about the holidays. From the anticipation to the decorating to the traditions to the music, it’s the time of year that I feel the most grounded. For six weeks or so I have a pretty good idea of what to expect out of life; it is predictable and it is comforting. So yes, I am one of those people who breaks out the Christmas songs and decorations in November because it allows me to breathe. I can think to myself “OK, we did it. We made it to another Christmas”. With all of the change that has happened, the holidays are still familiar and welcoming; a feeling of coming home again. And even though I still get so much joy out of this season, I can’t help but feel moments of loss for all of the reasons that my favourite time of year is now different.
One of my favourite things to witness is the look on a parent’s face when their child starts asking me questions about my wheelchair. As a parent myself I know the exact feeling of dread that they are experiencing. The unpredictable nature of a child’s curious mind can be a stressful thing. I am not easily offended and love having children ask me questions while they try to wrap their brains around what they are seeing. I have yet to meet another wheelchair user who discourages questions from a child. Even so, I’m sure a lot of people have walked away from me wondering exactly how to explain a spinal cord injury to their child and answer their questions in a way they will understand.