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Words by Julie - Living Life With Paralysis

Thoughts a-flying 3

We’re on board! Ella and I are set to fly to Vancouver – it’s early, and we missed having time to stop and get a coffee or breakfast before we had to board (even though we were up at 4 am). They were paging “passenger Julie Sawchuk” when we were still at security! (I have to board first because I need the aisle chair which blocks the flow of all other passengers). It was all fine though – I didn’t feel pressured and we got to our seats where I claimed the window seat.

One night earlier this week, as I was falling asleep, I had some really profound thoughts about this next adventure. I felt that I should get up and write them down, but then I convinced myself that I would be able to remember it all and write it in the morning. Well of course I couldn’t remember the next day, no matter how I tried.

So the non-profound thoughts are these:

I recently made the mistake of assuming (read: ass-me) that everyone knew what I was up to these days. I was wrong. People have moved on with their lives – the shock of my collision has worn off – and it would seem that my life has returned to nothing particularly interesting. Which is as it should be. Everyone has their own shit they are dealing with, getting through, celebrating and just living! Besides, I don’t seem to fit the profile of someone with a disability – why there is a profile I’m not sure but it’s unfortunately true. To quote a lady at the pool “what’s a good looking looking young woman like you doing [using]* a wheelchair”?

Perhaps now it’s time for me to reach farther? I want to be heard by those how see the potential for making change and are willing to do the work themselves. Accessibility for inclusion, independence, energy saving and safety. That’s going to be my game plan. Who’s up for it?

As we fly over Lake Winnipeg, covered with ice and snow, blue sky above, I can’t believe that this is actually happening. A year ago it was some random crazy thought I had, that I should do this, here we are, on our way. And it’s thanks to the support of so many people, encouraging me to make a go of this next adventure, and helping make it financially possible. When I started the GoFundMe I was hoping to be able to cover the cost of the course fees, but in the end, we will have everything (including our meals) paid for by the fund. That and I have our friends the Underwoods to thank for the AC points that have lifted us up into the air!

I’m looking out over the engine of this jumbo jet and am amazed, again, that it can fly. Is it science, or magic?

I’ll backtrack now, and tell how this adventure/learning experience all came to be.

It started out with a letter, thanks to my friend Darryn, from Rick Hansen when I was in hospital at Parkwood. It was a personal letter, one where Rick encouraged me to recover well and to take all new experiences in stride. At the time it was helpful, but now I see from his perspective – that there is so much that I can do knowing what I do now. What I have learned in the last two year has the potential to help so many people. And after this next two weeks, I’ll know even more.

I have to admit, I have lately been feeling rather “large headed” when it comes to accessibility and issues surrounding life with a disability. But then this week I sat through a meeting with some of my accessibility colleagues and realized that I don’t know everything. Not even close. My friend Charlene has 11 years of experience from learning and loving her son. Plus her own body has decided to fail on occasion. She has a lot going on, and here she sat with these plans we were assessing finding situations that may not have been ideal for the residents and celebrating the detail and thought that had gone into them. Things like windows and doors wide enough to drive hospital beds through and considerations for emergency escape. This is something that, although we have thought about it in our current living situation, we have (Mom, don’t read this) not really put into practice.

Ella and I are currently travelling to Vancouver where, for the next two weeks, we will be participating in a course at Vancouver Community College, where I will study for the Rick Hansen Foundation Accessibility Certification. Upon completion, I will be a certified assessor, able to give the Rick Hansen stamp of approval on any building that is worthy of certification. Ella is along for the ride, and to be my help should it be needed. I laugh at bit at that because although tomorrow she turns 15, she still travels with her pink fleece blanket and her stuffed cat shimmer 🙂 But she is a good problem solver when it’s needed, and we’ll have some fun along the way, I’m sure. Just the girls. We’ll miss our boys, though, that’s for sure.

This is the only course of it’s kind, only offered in B.C. right now. I will be one of the first in Ontario to have this CSA approved certification. I’m excited to meet a new group of like minded people. The last time I did any kind of professional development was a learning to teach with Case Studies three-day workshop in New York. That was two months before my collision. I didn’t get much time to put it into practice… this time it’s going to be different.

As usual, I travel with a bit of trepidation. What will our accommodations be like – will the bathroom be manageable? Will I be able to be sufficiently independent? How many of my 100 “daily energy units” will I have to expend before I leave the hotel every day? What will my body be like when I get home – I won’t be able to do physio or ride my FES, swim or stand in my standing frame for two weeks. And I’ll be sitting all day – I doubt I’ll find a spot to stretch out my joints. How well will I be able to stick to my “whole30”ish lifestyle change? Will my pain and fatigue be manageable?

I guess I’ll just have to wait and see. One day at a time. I am thankful though to know that most of the time if my pain is bad, a good night of sleep will set it at bay. Tomorrow is always a better day.

When I get back and have had time to recover, Lorie and I will be planning our second “building an accessible Huron” workshop. The first one we hosted last month was “sold out” before we really advertised and we were pretty excited about how it all went. We are also in the early stages of discussing a partnership to form a professional accessibility business. I am already receiving calls and being questioned by people I meet in town about how to make a place (like a church or a business) more accessible for everyone.

We’ve just flown over Saskatoon – still locked in winter’s grip – and the valley where Theo’s family still calls home. Perhaps if I close my eyes for a few minutes when I open them there will be mountains and then spring on the other side. I’m curious about what staying in Vancouver will be like. After all, it’s been 20 years since we were in Toronto, and I have not lived in a city since the collision. Sidewalks (although poorly designed for wheelchair use) are far superior to gravel driveways and narrow country roads. Getting around on public transit has the potential to be far superior (in an accessible city) to having to haul my chair in and out of my car all the time. There is a possibility that I will say “let’s move to the city” when we get home…

But speaking of home…as soon as it’s possible we’ll be putting a shovel in the ground to start the new house. It is planned and ready to build, right in front of the old house. Here’s hoping that there is a big pile of dirt out there when we get home!

Tired and hungry, but we made it to Vancouver. Now just to get to our hotel…

But first – Vancouver – here we go!

 

* although this is representative of what she actually said I have changed the word “in” to “using” because I take offence at the implication that I am “in” my chair as though I am confined – an equally offensive word. I know, I’m ridiculously sensitive.

 

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