What I Want You to See About My Life With a Spinal Cord Injury
The Christopher & Dana Reeve Foundation is currently undertaking an Instagram campaign to combat the stigmas and misperceptions of what it means to live with a spinal cord injury and paralysis. I recently shared my story at their request. This is what I posted.
A few days after I’d posted for the campaign, I was reading on my patio. It was a beautiful 72 degree evening, but I got chilled. So I came indoors, closed my E-Wand blinds and grabbed a hat and scarf. As I took out the warm neck wrap from the microwave and placed it around my neck, I laughed and thought to myself, “What would people think if they could see me?”
I had just shared those very words. See me. But to what end?
Yes, I want you to see all of the positive and encouraging qualities about who I am and what I’ve done. But I also want you to understand – really see – the impact of paralysis. A spinal cord injury is so much more than the inability to use my legs and hands. I don’t share this to receive pity, and I definitely don’t want to be called an “inspiration.”
But I’m wondering if the world needs to see what goes on when no one is looking. Is what you don’t see skewing your understanding of SCI?
What do you see?
What did you see on Saturday when I was splashing myself with water from the fountain in downtown Louisville? Did you know the heat had actually spiked my internal temperature to 102 degrees? Did you see that I can’t sweat due to my SCI?
You couldn’t see me sitting with a hat and scarf and a hot cup of tea after sitting out on my patio on that nice evening. But for the same reason I overheated, I get cold easily. Do you see someone who is simply “delicate?” Or a body that can’t self-regulate its temperature since the autonomic nervous system is broken?
What do you see as I come into work a couple minutes late? Do you see a person who actually gets up earlier than you? Do you see the extra time it takes to shower and get dressed and do personal care? Do you understand that to some extent my life runs on someone else’s schedule?
Do you see the added responsibilities I have? The extra hours each month it takes to follow up with the insurance company and billing companies to correct their errors? Did you see how long I waited at the grocery to ask you to reach the item on the top shelf?
Do you see the extra expense of living life with a disability? The need to work two jobs to pay for personal care? Have you seen the long list of medical supplies the insurance company considers out of pocket?
Where Is the Balance?
As much I want you to look past my wheelchair and see me and not my spinal cord injury, I need you to see the bits and pieces of life that make me who I am. It’s not all fun Facebook posts or Instagram perfect pictures.
So where do I find the balance? I want people with new spinal cord injuries to have hope that life can be good. Great. But I don’t want to sugarcoat things either. Life can be hard. And that’s just as real.
In my writing I hope you see a balanced perspective. I want you to see me maintaining a career and traveling overseas. I’ve shared the frustration of bladder and bowel issues that led me to a drastic surgery. I need you to learn about the not-so-small parts of life like transferring in and out of bed. Managing spasticity. I hope you can see the joy of playing rugby. The pleasure of rowing. The ability to cook. I want you to appreciate the importance of community and family support. To understand the difficulty of hiring a personal care attendant. The excitement in learning how to put on boots. To comprehend the importance of maintaining my health. To grasp the financial struggles.
I want to be willing to share the good, the bad and the ugly – with the intention of helping you understand how spinal cord injuries affect every aspect of life. But I don’t want that to be the focus of who I am. It is part of me, but not all of me.
See me. All of me.