Words by Julie - Living Life With Paralysis

Desire and Fear 1

This morning I awoke in a panicked sweat. I had been dreaming that I was working in a store on the corner of Younge and Bloor Streets in Toronto. It was a convenience type store, with a walk up window. For Younge and Bloor there weren’t many people about – a pandemic has that effect, I guess. One man wanted directions, so I popped out of the door to point to where he needed to go and when I came back into the store there were two other clerks and a bunch of customers. Before it had just been me. I went back to the window to serve a customer with his lotto tickets – told him it might take a while, that the system was down. The other clerk said “here, let me do it” and she came right over to me, took the tickets and reached over top of me to get to the machine. She didn’t wait for me to move out of the way. Then I realized with a “wow” I need to keep my distance from her. I turned around and saw that more people were in the store, some were sitting beside each other, like right beside, having coffee and laughing. As I spun around again I saw that the other clerks were interacting face-to-face with the customers. At this I freaked out and said in as loud, yet polite, as a voice that I could find that “everyone must leave the store, now. The store is only available from the walk-up window. That is where you will be served.” The people in the store looked at me like I was a bit off my rocker, and grudgingly, left. I stood there, realizing that I had been exposed. These people I had been working with, the stuff I had been touching – cash, flowers, lottery tickets – they could all have been contaminated. I had been exposed and I didn’t know what to do. And then I woke up. 

I have been nowhere but my own house and our two cars for the past 82 days. This is nuts. Never would I have imagined that I was capable of being “locked down”. I am way too social of a person. Yet here I am, at home.

This was not an easy adjustment. At first my family lost a March Break opportunity. Theo and the kids were going to go south (last minute decision) and I was going to stay home – by myself. I was going to have ME time. I was working on another book, planning the launch of Roadmap to Recovery with SCIO in Toronto, getting ready for speaking at five different conferences – Toronto, London and Waterloo, working on award submissions for the Huron County Accessibility Advisory Committee and putting forth proposals to work with new (important) people. Then, suddenly, everything was cancelled. 

I felt like the rug had been pulled out from under me. I know I’m being dramatic about it, but it really hurt. And I realize now (with help from some friends and therapy) that I was grieving. I was grieving the loss of my “new me” that I had worked so hard to create. I had just incorporated Sawchuk Accessible Solutions and created my business Facebook Page. I spent the winter learning how to bookkeep and I was working with a friend on some marketing ideas. I was on a roll. When the brakes were applied I didn’t know what to do. 

Charlie, our most photogenic cat, has provided a lot of pet therapy.

After a while, and a conversation with Ellen, my accountant, I realized that I was mourning the loss of all that hard work, that purpose for my new passion. I mean, what place of business was going to be concerned about accessibility during (or after) a global pandemic? No one! Why would they care about accessibility when they can’t even afford to keep their doors open? What the hell was I going to do with myself now?

It’s been rough. I’ll admit that I was not really fun to be around for the first bit. Ask my mom – I called her one day, gave her shit for going out to the store and said goodbye and hung up the phone. Then I realized that it was her birthday. Nice. I have spent my time reading (finished book 8 yesterday), learned how to freehand crochet and “finished” Netflix. I have created (many) schedules and routines for my kids to have some sort of normalcy. Oh yeah, they love having me home…

This is the start of my basket of vegetable crochet.

But now (I am through the “darker days”) I have realized that I was really busy, perhaps too busy. Because now I am home. I am cooking again, exercising everyday, spending time with the kids while they work on their own things. We go for walks up and down the driveway, throw a frisbee. We have family movie night, every night (yes, we have watched every Marvel movie, chronologically, and now I understand what my kids are talking about and why they love their superheroes). Theo still has a job, working most days from 7am to 1pm. I get to make him lunch. We are cooking together. The kids are helping keep the house clean, do laundry, mow the lawn, move soil for the garden…

Theo and I celebrated our 21 anniversary this month.
And Ella turned 17!
No one coming to my door.

I have also realized how fortunate I am. I did not lose a job on which I relied for income. Most of my work was voluntary, travel and expenses covered, but not much else. I certainly do not live off of book royalties. Theo has more work (apparently more beer is being consumed than before…)

But I struggle with this – I have to stay home. This virus would knock me down, and possibly out. There are a number of reasons for this – all have to do with my spinal cord injury. First, upon the initial insult of injury, the immune system becomes compromised. Everything that has to do with homeostasis in the body (systems staying on track) gets pushed off line. That includes one’s ability to fight infection. I think that working in “the germ factory” for 15 years gave me an advantage here, but like everyone knows, this is a new virus. 

Next, I can’t really cough. I mean, I can, but it is pretty sad when I do. There have been times I thought I would die because I had a bit of pepper in the back of my throat that I could not dislodge. Knowing that people who get Covid19 end up on respirators means that I most definitely would, too. I do not have the core muscle strength needed to cough up fluid or mucus that would develop in my lungs. 

So here I am, actually dreaming about being out in public (desire) and then realizing in a panic that I can’t be there (fear). 

Now back to real life. I have come to the point where I have realized that I have to change how I do my work. I know, I’m a little bit slow off the block, everyone else has already figured this out, but I am getting there. 

When we finished building our house I decided (without much consultation) that I would make it my new classroom. People wanted to see it, and learn from us how to build barrier free. We had more than half a dozen families come for a tour and 70+ people show up for the open house/book launch we had in November. Now I have a plan for keeping this going – I’m doing a video series called Building without Barriers. Every week (or more often if I can) I am going to post a short video describing a feature of accessibility of our house. I hope that in the end, I will actually reach more people doing it this way.

Next, I am going to figure out how to do tours virtually, and provide lessons on how to build for access. Stay tuned to my SAS fb page for that.

That is where I am at right now. Finally, planning for the future, not stuck and wallowing in the mud. I am trying not to look too far ahead, because when I do I start to panic again. I need to be with people and knowing that I am in the “highly at risk to Covid19” category means that I can not. Even my own family has to make strict protocols if they leave the house – they could bring it home. 

We are getting through. I recognize that it is easier for some (like my family) compared to others who are essential workers, or work-from-home with children under their feet, or those who have to figure out how to put food on the table. Life is upside down. We will not be going back to normal, but we will figure out how to be together again. We will learn how to stop panicking and live without fear.

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