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.
spinal cord injury
Tick. Tock. Tick Tock. The ticking of the large clock above the couch in our family room is usually drowned out by the noises of our home—one of our kids playing piano, a dog barking at someone walking down the street or the shriek of a little sister not getting her way. But sometimes, when the house is empty and quiet, I hear it and feel uneasy. It’s the incessant reminder of every second that passes without pause or consideration for the events that unfold within its unrelenting grasp. Did you know it takes less than one second to fall 10 feet?
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.
10 weeks to the day after I injured my spinal cord—on my 29th birthday—I left rehab. And what did I want more than anything? A bath. A bubble bath with a book or Netflix was my happy place—my self-care. It was where I retreated to almost every evening in the fall and winter after my husband was home from work and I was no longer solely responsible for the three little people in our home. It gave me space to take a breath, recharge and feel like a person beyond “Mommy”.
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.
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.
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?
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.
It caught my eye out the front window—an ambulance pulling in to the driveway across the street. My brain said trigger warning, but if you’re anything like me and possess an incessant curiosity, trigger warnings only work to peak your interest. So even though my reactions to ambulances haven’t been great—the worst being a full-blown panic attack after seeing one race down the road with its lights flashing and sirens blaring—I couldn’t look away. I thought let’s see what happens this time.