Tuesday, 14 November 2017

My new home

Well, I wish this was my new home...it's just my virtual new home. If you wish to continue reading my blog please be sure to go to www.juliesawchuk.ca click on the red bell, bottom right-hand side. This way you can see my blog and any other bits of info you would like to know about me. Thanks!


Tuesday, 24 October 2017

More reasons to write

Every day in Ontario another person is diagnosed with a spinal cord injury. For some it will be because of a trauma, for others it may even be from violence. Others yet may learn that, because of a tumor or a virus, they may never walk again.

It is with this in mind that I am now writing (and have been for several months) a book. It is not a novel or a reflection on my life post collision; it is a resource. Over the past two years I have learned a lot, much of which does not appear in any book or website that I have been able to find. My stack of reference books is growing, but none so far have filled where I see a void.

My goal is to get this reference, a "roadmap to recovery", into the hands of anyone who finds themselves in acute care with an SCI. It will guide them through the people and the processes of getting the most out of the systems that are in place to help with recovery. The list of people and places involved is quite long; my stack of cards is still growing.

I have a few potential partners for this venture, but nothing sorted out quite yet. I thank Bill and Nikki for the office space - a neutral place to write!

This will be my last post on the blogger site. I am changing platforms to wordpress and it will be hosted on my NEW WEBSITE! Thanks to Michele Studhalter, I have this beautiful site - now I just have to learn how to work with it!  You will be able to continue to receive notifications of new blog posts - visit www.juliesawchuk.ca and click on the red bell at the very bottom right corner of the homepage. You can always click on "contact me" and send me a message too!

Saturday, 21 October 2017

I haven't lost my touch

Back in the day, when Theo and I ran a stand at the Blyth Farmers' Market in the early 2000s, I would bake dozens of these biscuits every weekend from May long weekend until Thanksgiving. I can't even count as high as the number of these tasty things that I pumped out of my Tiny Farm Blyth (emphasis on tiny) kitchen. I had that recipe memorized and could make it my sleep - in fact I think that many mornings I was still sleeping when I made them.


For the past two years I have had lots of other hands making things in 'my' kitchen. I miss the days of baking, cooking and canning, so this afternoon I had the energy (and lack of nerve pain) to take part in supper prep. These are the result. Not bad considering that I made a single batch but doubled the yogurt and had to go back to the lazy susan for more ingredients. So much for my memory.

It likely took twice the time it used to, I suppose as I practice more I will get faster. Although I have more core strength than I did two years ago [came home two years ago this weekend] I don't have enough to work with both arms in front of me. One arm (usually my left) is needed to keep me from falling forward into what ever I have in front of me (picture my: laptop, plate of food, cutting board, mixing bowl) cutting up meat on my plate is quite a workout. My body is so off balance that my muscles and spine often protest.


The other consideration is safety. I also do not possess the core strength required to reach into the oven and pull out something hot, and one arm is not strong enough (unless they were meringues). Burns are highly likely and quite dangerous considering the fact that I may not even feel that I had one. So I get my helpers involved - but of course they are not always around.

This leads me to our new house. I have plans for a wall oven with a door that swings to the side which should make getting hot stuff out a bit easier (and safer). We will also have a cooktop that is lower than that of a regular stove so I will be able to see in the pot rather than having to lower the pot to look inside (or use a mirror that fogs up).

Now if only the kitchen fairies would come and clean up the mess I made...wait a minute, isn't that why we had kids?

Monday, 2 October 2017

Just Say No

I just had a call from my doctor. He was following up on a test I had done last week on Friday - the results were negative. This, from a health perspective, is a good thing. But it sure is not helping me otherwise. What it means is that I don't have another UTI even though all signs would point in that direction - especially today when my nerve pain is off the charts.
There was quite the ticker-tape parade that helped
me finish the 38.5km 4.5 hour ride in Hamilton.
Thanks to Theo, Dave, Dalton, Ali and Mike
for always having my back. 
One of the Men's 50m finals
that we attended on Friday.
What an experience
being in a place where
having a disability was
considered "normal".
I got up to see the kids off to school, had breakfast, checked my email and that was it - all I could manage. So I went back to bed, slept on and off until about 1:30. Theo checked in on me every so often reminding me that rest was good - it'd been a hell of a busy month. He brought me a cappuccino and I cancelled all my events for the day: physio, a meeting for accessibility and a social.

I asked my doctor "if there is no infection, then why the all symptoms?" He didn't have an answer; that's the thing about nerve pain - no one really has an answer. He asked me if I had been over doing things to which I sheepishly responded "maybe". I said "that is what October is for...rest". He asked if I had a measurable goal for resting this month. I guess I need to make some plans of a different sort.

I honestly don't know how to do that. How to say no. Elaine says that she is going to give me some lessons - but how to I say no to speaking? to helping the county become more accessible? to my family? to my friends?

Me and my mini-me, Anne, standing in the Exo.
Last week, for example, I thought would be quieter because the IPM was over. But we did Greg's ride (38.5 km in the heat on Sunday) I had two appointments, went to London to walk in the Exo (and interviewed two people for my book) and we went to Toronto on Friday to the swimming finals for the Invictus Games (saw Prince Harry and shook the hand of The Honourable David Onley former Lieutenant Governor of Ontario). Plus we had David and Anne for the week. How could I say no to any of that?

The part that really bothers me is that I had to cancel my physio appointment for today. That is the most important thing that I do right now - that is my work! I just called in sick to work - which I almost never did before. And the irony of it all is that I just wrote another column for The Citizen entitled "No Limits, No Excuses". How does anyone ever achieve "work-life balance"?

Take a deep breath, enjoy the fall sunshine and relax. Perhaps when the cat comes and sits on top of me I should just listen to her say "you are going nowhere".

I guess SAWESOME and I will stay put today and my "big plans" will be to pick Oliver up from the end of the driveway.


Friday, 22 September 2017

Rollin' 'round Walton - IPM 2017

Aka International Plowing Match 2017 in Walton, Ontario.

It's probably not the best idea for me to spend the afternoon in the sun and heat and then come home and drink a cider...but I did anyway. Holy cow what a hot day. But the week didn't start that way... this is what it looked like.


Now a plowing match is not normally top of my list of places to hang out (four days in a row) but when in Rome...

And besides, I have been making myself useful. I joined the IPM 2017 Accessibility Committee several months ago and have been working with a keen group of women (yes, all women) on this project ever since. We have had a lot of support from the local IPM committee and from businesses keen to have the accessibility features on site. The brains behind the operation, Charleen O'Rilley, collected a diverse group of people with various experiences and expertise in living in an inaccessible world. It's true, if you don't live it, you don't know it.


There has been lots of publicity about the work that has gone into making this match accessible, in fact it was the topic of my last column in The Blyth Citizen. That, and Scott Miller, CTV did a great story to help spread the word too.
It's working. We (the committee) have had a huge response. People have come to the match that have not been able to for years. Planning a day at an outdoor event, knowing (because you saw it on video) what the bathroom facilities are going to be like for [insert the person who needs an accessible washroom here] makes a world of difference. Scooter rentals, ramped wagons, GOOD accessible parking, it all adds up to a day where all you have to worry about is the weather. Which was indeed a worry. But the match organizers closed the tented city down for the day on Wednesday so they could help preserve the land, and let it dry up a bit. Today we saw corn husks, mulch and wood shavings all being used to help soak up the water that fell from the sky all day Monday and Tuesday.

I spent some time talking to visitors on Tuesday and had the afternoon as a visitor with my family today. What a difference a few small changes make! Ramps to stages, large private bathrooms, viewing areas at concerts and events marked out for people to roll up with their scooter or wheelchair. The ramp up to the stage in the RV Park meant that one girl who uses a wheelchair was able to join her choir up on the stage as they sang during the worship service. The accessible parking area has a drop off zone and a ramped wagon to take you back to your car if you need it. Although we didn't stop to eat I talked to people who made good use of the picnic tables that have open ends to wheel up to. And, for the first time ever, people could tour the plowing fields on an accessible wagon thanks to the Townsend Family.

The most fascinating part is how word spread. Scott Miller's video has over 30,000 views - a lot from people sharing it with those who would benefit from knowing - often changing minds and deciding to attend. And word didn't just spread via YouTube, it also spread by word of mouth around the match during setup. Poor Charlene was getting calls and texts at all hours - staff who were setting up their tents and exhibits wanting to know what was best for accessibility purposes - which of course was a good thing.

I feel like this could be a new beginning - one where the people who run outdoor venues will begin to understand that setting up to create access for all just makes sense.

I heard Rick Hansen speak on CBC yesterday - 30 years ago he finished his roll around the world to raise awareness for people with disabilities and today marks the opening ceremonies for the 2017 Invictus Games in Toronto. All of these things coming together at the same time will help everyone understand that not everyone can walk up steps...but a ramp means access for all.


Sunday, 17 September 2017

Broad Shoulders

Once again, I'm finding it hard to find the time to clear my mind and write. My list doesn't seem to ever get any smaller. I try to knock a few things off, but it's hard to say no...so the list just gets longer.

It's been a beautiful month, but also a crazy one - Bone density (in Toronto), botox (in Owen Sound), IPM (almost here), theforwardmovement.ca (just getting going), Greg's ride (awesome shirts Ella), building my website (thanks Michele), Accessibility Advisory Committee (no comment), cycling strategy (riding along), Adapted Car Show (a Parkwood reunion), physio (when I get there), Invictus Games (watching swimming), preparing to speak (as an RH Ambassador), Cowbell (food+), friends (to walk, roll and bike), kids (back to routine), relationship (getting back on track), family (all going to Greg's ride), writing for the Citizen and writing a book (just getting started). All this is not in any particular order, but as I write I realize that the things that get written on the calendar are the things that are most likely to happen. The others, well they just get squeezed in wherever they happen to fit, and only if energy is available.

Steve and I have been trying to find the perfect time to get out on our bikes together again. He was/is my tri training friend; he's training, I'm hoping. We spent many early mornings sweating on the trainers or lapping up the pool. We finally made yesterday work for a ride.

It was my first time back on the county roads and it happened to be just around the corner from where this journey all began. In the spring the County decided to repave a section of road from Benmiller to Saltford, and as they were already doing the paving, they also paved the shoulder. This was a decision made with the urging of the cycling community - and it is a great first step to providing safer cycling in our county. It's a stretch of about 6km from the top of the hill in Benmiller to the top of the hill at Saltford. We parked so that we wouldn't have to do either of those hills - I'm not ready for them yet.

The wide shoulder makes me feel safe. And the cars all passed with so much space I hardly gave them a second thought. My new vest lights up and Steve has a super bright and large light on the back of his bike - pretty hard to not see us.

The best part was the speed. Theo and I talked about this the other day - how much we like the speed of being on a bike. Yesterday I got up to 31 km/hr which felt awesome. Slow is slow though, I'm sure Steve could have walked along beside me and still been faster. We call that "granny gear". I learned too that I can't ride alone; my chain came off the bottom ring twice - I'm still learning about the gears - and it's out of my reach. I  rely on my riding partner to fix it. I need to spend some time with someone like Rob Buren. He is the first Canadian paraplegic to complete an Ironman. I'm sure he fixes his own chain.

On the drive back to Blyth I couldn't believe how skinny the road felt. Riding a paved shoulder was a whole new experience for me, one that made me question (again) why we pay taxes for gravel that gets dug out of the ground and then plowed into the ditch every winter. Surely that does not make sense? We need to think big picture and long range - the short sightedness of "wait until after the election" has got to change. Make decisions now, ones that make sense so we can all feel a little safer.

I didn't start out to rant about municipal politics (even though it has been on my mind as of late). I wanted to record the feeling of being back on the road. Although I felt so free and fast it reminded me of what I've lost. I've got to find it. Independance. We so take it for granted.


Tuesday, 29 August 2017

Nothing to be concerned about; just don't look at the sun!

Just when I thought (again) that I had things figured out, I learn (again) that I don't. But that's okay, because now I have yet another experience to look back on and think "remember when that happened?" Of course it was the first day of our summer vacation and I had a medical "event" unlike any other. It turned out to be just another UTI and the Dr said the symptoms were nothing to be concerned about. Wow. All ended up fine, but it snuck up on me unlike any other. We carried on, this time cottaging not so far away, and it was lovely. I read two whole books (more on that later), Theo played guitar, kids ate all the ice cream they could possibly stomach and most of all we relaxed.

We had a campfire and Theo & kids played on the beach. We visited the cheese factory and museum (well, some of us did).


I loved being able to ride out the driveway and along the flat quiet streets of Point Clark. We went for miles. Getting on and off my bike requires significant help - my knees and feet do not go where they are supposed to and the seat height is quite challenging - but we did it. I also rode up a hill that I thought might actually not be possible. I got to the bottom and actually said to Theo “I’m not sure I will be able to do this!” (which is not my usual thought process). If you know Concession 2 down into Point Clark, then you know the hill. This is the sign at the top of the hill...pictures of hills never do them justice, I thought this was a better image.

I wanted to get on my bike as much as I could in preparation for Greg's Ride - Share the Road's ride for safe cycling advocacy. Team Julie will be there again this year; if you would like to join us it is in Hamilton on September 24th. It's not a competitive ride; there are three distances to choose from. Just click on the link (above) and use the discount code 20TeamJulie17 to be a part of my team. Then send me a message and let me know your t-shirt size. This year Ella created the design!







We were at the cottage when we “watched” the eclipse. I bet no one else had a viewing box made from a catheter box. Theo is very resourceful.

The kids loved go-carting so much that we all went the second day and even I got into the car. They were very helpful there at the Family FunLand and I went screaming (literally) around the track with Theo at the wheel (even though I was trying to steer!). Super fun - but see my ankle? Below the bandage is my first skin issue - I couldn’t feel my ankle bone rubbing against the inside of the car. Pretty minor when I hear about my fellow SCIs with pressure sores on their hips from their wheelchair cushions!


We spent Saturday with Erin at the Listowel Rifle and Revolver Club for “Erin’s shoot” - the big fundraiser to support her biathlon career. The kids and I shot the biathlon targets from 50 meters. I was lucky enough to get to use Erin’s actual biathlon rifle - a sleek and well sighted rifle. I shot clean and had the highest score (Gold medal!) of all participants (novice and club members!) and have been “recruited” to join the club. I suppose it could be my next sport?
What can I say but AWESOME. 

Me and "my girls" Erin Yungblut and Michele Studhalter.
Erin is a biathlete and Michele an Ironman!
Oliver learned some new yo-yo tricks
from our friend Mark. 

Shooting "pron" with the best rifle on the line. 
Being away from home I realized how “use to” I have become to the accommodations we have made to our old farm house. Little things really make a difference, like the placement of bars in the bathroom and smooth floors. The cottage was “accessible” - I could get in and out the doors, but reaching the taps and rolling over carpet - not easy. I have high standards but I guess I need to lower my expectations?

So that is summer! Kids went to camp, Theo worked on the shed, I shopped at all the local farmers' markets and went to physio. I also spent my time writing - for the local paper “The Citizen” (about accessibility in and around the county) and for Spinal Cord Injury Ontario (SCIO). The SCIO project is rather large, and I’ll give more details when I know them, but I think that it is the beginnings of my first book :)

I was recently reminded that I have not given much of an update of what’s been going on at physio, so check out my recent YouTube video using the RedCord. Standing with my arms!


P.S. With Michele's help I am making some changes to how I post and I will also have my own website www.juliesawchuk.ca - so stay tuned.