Pandemic or the SCI Life

Posted by Reeve Staff in Life After Paralysis on March 20, 2020 # COVID-19

By guest author Elena Pauly, WAGs of SCI co-founder

For the first time in a long time, our planet is moving through a major shift. The quickness of it all is coming to a quick stillness. It feels as though last week, we were all moving through our daily lives monotonously. Going to work, grocery shopping, enjoying a cinema, or dinner with friends hardly seemed like a threat or detrimental to our health.

What on earth? Literally.WAGs of SCI

I look out the bedroom window, down the street to find nobody insight. How quickly it has all changed. Hearing words in the media like "isolation," "social distancing," "unprepared" is all I've personally experienced long before the COVID-19 Pandemic began. Being the partner of a man who sustained a C6 fracture four years ago, "medical urgency," "Intensive Care Unite," and "Ventilators" are words I'm also quite familiar with.

Our accident happened overseas while on holiday in Cuba. The feelings of fear, uncertainty, and isolation were no strangers of mine. I can't help but to be reminded how quickly our lives had changed and the parallels of the helplessness I am seeing around us at this present moment, as the world begins to slow.

The SCI life has also proven to be slow, and many times we have forcibly socially distanced ourselves. But, I think this is the FIRST time in four years that our friends and family can truly understand what it may have looked like for us from the get-go.

Sitting in isolation with your partner is something I can say most WAGS of SCI are quite good at. Not being able to access certain public services because of lack of access or safety is also something we get, more times than we'd like to admit.

Running to our partners' needs, accidents, or medical emergencies, we do with our eyes closed. Because most of the time they happen late at night when everyone else has long gone to bed.

We know what it's like to be still and pass the time until it's safe to rejoin society. We do it all the time. We sit and wait until the medication kicks in, and the spasms soften, or the nerve pain subsides before we continue on with our days to run errands.

Oh, and the inconvenience of not being able to continue on with your job or family dinners and plans? Yeah, we know that too. In fact, most of us have lost our jobs after our partners sustained a spinal cord injury, and yep, money did get tight. We didn't have the government coming forward with security packages.

So, no, it's not the end of the world. This, too, shall pass. And everyone will pick up where they left off. Still, I can assure you that the disability community will be the last to benefit. Nothing will change to make the lives of those living with disabilities less expensive. Nobody will pick up that bill.

We fight for simple accessibility buttons to be installed in our buildings as is. For the right to enter and exit your home safely. We fight for the right to an accessible public bathroom. "I have a dream," for my partner to be able to go pee without paying $7 per catheter and for the snowy city sidewalks that he utilizes to take public transit to be shoveled off. I have a dream that one day he will wheel in the door from university to tell me that he didn't have any issues at all. I can't help but shut the bathroom door most days and cry for the fact that life shouldn't have to be this hard for my partner.

These are daily realities. So, as the world comes crumbling down and we feel guilty for staying home and not being able to get that"spring project" done or have your favorite Door Dash meal delivered, or being able to hop back in the office, others have it much more complicated. I hope we can sit in stillness and take this time as an opportunity to look outside of ourselves and at all individuals in our communities. We are all going through a similar experience together. We all depend on each other because, as the world has proven, we are all connected.

My name is Elena Pauly and I co-founded the international support group for Wives and Girlfriends of Spinal Cord Injury; WAGS of SCI with Brooke Page. My boyfriend, Dan Duffy sustained an SCI on January 2, 2016, after a shallow diving accident left him a C6 quadriplegic. In November of 2017, WAGS of SCI was born as a result of lack of support we as caregivers and lovers are left within our community after our men sustain a spinal cord injury.