Still bloging - my new site

Not sure if my timing was right, but I have moved my blog to a new site. Please check in there if you have been missing posts from me. Or send me an email sawchukfriends@gmail.com
My new site
http://juliesawchuk.ca/2017/12/30/thankful-again/

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!

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!

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?

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.

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.

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.

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.

Drag lift

This was how I started my morning today. Back to our old ways with just a few bits of equipment added into the mix. Melissa and I used to get up, in the stupid o'clock hours of the morning, and go for a run. I'd meet her in town and we'd head out into the darkness - snow, rain, fog - no matter the weather. Today we re-started that tradition and it was so very satisfying. Even though we met at 7:30 instead of 5:30, it still felt early. I've been needing so much more rest these days that getting up at 7 is early. The other obvious difference was the speed we were travelling. Going downhill Melissa can't keep up with me; going up hill she could crabwalk backwards and still keep up.

My equipment add-ons help. I have my freewheel attached to the front, take off my backpack (too heavy) and my armrests (they get in the way) and add in my ski poles with road tips. I can steer (while pushing) using the poles, but I still have to slow down using my hands on the push rims. It was a good workout for me, and we learned as we went which roads in Blyth need new pavement!

So I was all pumped up when I got home. I'm on my own for the day and was set to drink my coffee, eat breakfast and get some writing done. I've not been particularly happy working at the kitchen table so I decided that first I needed to rearrange some furniture. I wanted to be able to look out the window; I can't sit outside on account of the mosquitoes.

Perhaps you know what is coming? On my own, moving furniture, left my phone on the kitchen table, sliding this table down the ramp into the family room, all on my own? Right. Fell backwards out of my chair. This time I didn't hit my head - hooray for that. It really is amazing how much of a problem solver you become when you are sitting on your bony bum 22" from the seat of your wheelchair.

After a dozen different attempts at lifting myself up I made it back up onto my plynth (with some ingenuity and many little naps in between). I then napped for half an hour and got back into my chair. Yes, I should have had my phone. Yes, I could have gotten to it by sliding up the ramp into the kitchen. Yes, I could have reached the landline by sliding across the carpet (and loosing my pants in the process). But I knew I could do it, and I wanted to try. I think I have some bruises from dragging my hips up onto the plynth but otherwise am no worse for wear. Now that it's noon, and having had my second workout, I can start my day.

Flashback

I found myself in a bit of a time warp yesterday. It was a Parkwood physio day so I was walking in the Exoskeleton around the gym. A woman in the tilt-bed (helps retrain the circulatory system) caught my eye. I had not remembered seeing her before - I pay attention to things like that - she was obviously an inpatient. I have a presence in that gym when I am up and walking. People stop and look, often in wonder, and have a "wow" type of reaction.

After a while I stopped for a water break right where she was sitting in her wheelchair, waiting to go back up to her room. She asked me if it was my first time using the Exo, so I explained that I had been walking in it for just about two years. She asked me how my accident happened and as I proceeded to tell her, her eyes got bigger and she whispered "same as me".

I'll call her Joy. Joy was hit by a car while she was riding her bike. Her's was a much more traumatic collision than mine though, more damage to her body, higher injury level, paralyzed one side of her vocal cords and it all happened while she was in the U.S., on her dream holiday, post retirement. Why does life have to suck like that?

I asked Joy if she would like me to come upstairs and have lunch with her and she said that would be nice. Then she told me what room number she was in. It was my old room, my old bed. So I prepared myself, in my head, about what it would be like to go up there and see that space again. It hadn't changed. She, like me, was the youngest in the room. That's hard because it is so helpful to have someone to talk to, someone who is in the same situation as you.

So we ate our lunches together and shared our stories. "It get's better" I told her. Because it does, but I remember very well the three months that I spent in that room, in that bed, looking out the window. Time just crawling by. I excused myself when her daughter came to visit.

Remember, Joy, it only gets better.

It's a pity you are handicapped.

It's not hard to recognize certain facial expressions. One of those is pity. I was at the market in Goderich yesterday morning (somehow managed to get there between bouts of pouring down rain) and was just heading back to my car - lap full of goods - when it started to rain again. When I left the house on my own this morning I knew full well that I might get wet - but so what? It's just water, and aside from a wasted bit of blow drying, what was the big deal? I wouldn't get cold and eventually I would get dry. I had arranged my produce (peaches, blueberries, strawberries, beets and cantaloupe) overtop of the three loaves of bread (yes, a full load) so they would not get wet and had one more stop to make that was right where I had parked. I was counting on the last vendor to just put my two cauliflowers and tomatoes right into the car - it's nice to know the farmers.

As I was making my way to the car, I caught a look. I did not know her, but being that this was Goderich, it was possible that she knew me. However, we had never met before. Although it was just a glance, I am sure that it was pity. And I am not interested in it. Say hello, give a wave and a smile, make a comment "here it comes again" or "haven't we had enough?" I was not complaining about the rain, in fact I boldly had left my raincoat in the car! It is not possible to wheel and hold an umbrella, but I left the house knowing full well that I would likely get wet. I made that choice, to challenge to myself - get to market, shop, load the car (ingenious use of my slider board here) and get on to the next thing - all on my own. And so I did, just a bit damp, no pity required.

So what then, was the word? Handicapped. Used by a man whose own father had a disability. Please, let us just let this word go. It is offensive when used as an adjective. People with disabilities who fought to control their own destiny also fought to use the word disability - rendering the word handicapped obsolete. So let's stop using it. You have to decide to make that change, just like you choose to stop swearing in front of your kids when then started saying things back to you that you didn't like to hear. The apple never falls far from the tree - ask any teacher this after parent-teacher interviews. Kids learn ignorance at home.

Language changes, there are many examples I could give, but just remember people first. I am a person who uses a wheelchair. I am not "in a chair", I use a chair. In implies that I never get out. I do; often. I sleep in a bed, drive my car, stand and swim. All without my chair. I am not disabled, I have a disability. I use a wheelchair parking pass and accessible bathrooms.

I ride a hand bike.

And I paddle a kayak.

Go ahead and apply a handicap to your golf game or your next horse race. But don't apply it to me. And save your pity, no one needs it anyway.

Sesquicentennial Celebrations

Not only are we celebrating 150 years since confederation, we are also in the 100th year since women "gained" the vote in Canada. Lisa Thompson, Huron-Bruce MPP, invited 150 women from the region to celebrate these two events at the Assembly of Remarkable Women in Huron County.

Lisa Thompson, Huron-Bruce MPP;
co-host of the dinner

Karri-Anne Cameron - Community Activist,
Chair of the Building Bridges Campaign

Debbie Green - Educator,
Principal F.E. Madill

Marion Studhalter - Role Model;
Current Queen of the Furrow - note the crown!

150 women were recognized as Mentors, Community Activists, Educators, Politicians, Authors & Publishers. I had dinner with many of my friends from education, sat across the table from the first female chair of the IMP and met a woman who herself was turning 100. It was wonderful to see so many of the "movers and shakers" from Huron in attendance, but by no means were they all there. How could you possibly find all the women in this area who have done so much for their community? Many "fly under the radar" doing good for those who don't even realize it. 

I was recognized as a community activist, but really, I am just getting started. I see making more change in my future.

A different perspective

23 months ago a man, driving a car, caused a collision. It was just after 9am, he was returning home from dropping off a couple of videos in town and had stopped to get coffee and a sandwich. As he drove along the straight stretch of road that he had driven a thousand times before he felt and heard, more than he saw, something hit his car. He thought, at first, that a deer had come out of the ditch and ran into the side of his car. As he looked into his rearview mirror, instead of a deer what he saw was the blur of colours, a person, flying into the ditch.

He pulled over as quickly as he could and went back to see if this person was okay. As he got to her he saw she had a helmet on, still attached to her head. He looked and saw a bike, white, about 20 feet ahead. She was conscious and trying to get up, she was asking for his help. He said, "Oh my God. I'm so sorry. I didn't see you". She kept trying to get up, pushing with her arms. Blood on her face. He did his best to sooth her and told her to just lay still. Another man arrived and said he had called 911. An ambulance was on it's way. Someone else stopped and offered first-aid. Thank God.

In what seemed like an eternity, an OPP officer arrived. The ambulance came and put the lady on a stretcher, loaded her into the back of the truck and drove away with lights and siren. Now, all the attention was on him. He felt like he was going to be sick. What had happened? What did he do? What did he remember? No, he did not have his phone. Yes, he was alone. They looked at his car. There was a white streak and scratch on the front right panel and the passenger side mirror was smashed. There was a hot coffee in the cup-holder and a half-eaten sandwich on the passenger seat. No, he had not been drinking the coffee - it was too hot. Yes, he had been eating the sandwich.

He sat in the back of the cruiser while the officer spoke to him. What had just happened? How could this be? How could he have not seen this person, a woman, on a bike? He had not seen her.

After that it was all a blur. He doesn't remember how he got home, or what he told his wife and kids. Everything would be different now. He could not look people in the eye. Could not even look at himself in the mirror. He had caused irreparable harm; damage that could not be undone. He would remember this for the rest of his life. Every day he wished he had the courage to look her in the eyes and say he was sorry; longing to be forgiven.

He had not seen her.

-------

You are forgiven.

Addiction takes all forms

First physical activity I have done since Wednesday.
Also, first time with my new poles.

Today is day five of a change in medication. I was feeling at the top of my game, so I decided now was a good time to see about reducing the amount of drugs I am taking. Of course, right? Feeling great, so let's screw with things so the likely outcome is feeling crappy? Well, that is not the entire truth. You see, every day I get a bit of a foggy head in the morning between 10 and noon. It varies from day to day, but some days I just stare into space, sometimes ending up crawling back into bed. I have not been great at tracking the effects of my meds, but I think that this spacey head thing began when I started the antidepressant, and I think it got worse when I doubled it a few months back. So on the advice of my doctor, I have reduced it by half to see if those side effects will abate.

Having gone from 60mg to 30mg is not that big of a change, even though it is by half. It all depends on the dose, right? So I can only imagine what going cold turkey would feel like. I slept a full ten hours last night - felt okay this morning - so I think I am making progress, but it's not easy. By the end of the day my nerve pain is back to a 10 and I am weepy. Ella is away at camp right now, and last night I cried because I missed her. May times this week I have wondered why I am doing this, surely it is not worth it?

Knowing how physically and emotionally difficult this small of a change in medication has been for me I can only imagine what others have/are going through. The dose is the poison, right? So those on strong shit like opiates - I can only imagine. They must just make everything feel so much better, and then consequently are so incredibly difficult to control, let alone cut out.

Theo and I had a funny conversation last night. He overheard Oliver telling his friend "my Dad is addicted to World of Tanks" (which, for those of you that don't know, is a video game). This, of course, is one of those "out of the mouths' of babes" kind of thing kids say. They want to emphasize a point plus they don't really have filters. (I can only imagine what he says about me and Netflix.) Imagine this boy going home and repeating what Oliver said. Those parents may say something along the lines of Theo not having "grown up". Now, let's change the the conversation by replacing World of Tanks with a drug or alcoholic beverage of choice. What is the response? Something like, "Oh, yeah, they've had a hard time."

It has been a hard time. And there definitely have been moments (or more than moments) that I have thought "get of that *&^% computer" and I'm sure he has thought the same as me. But now I am going to try to think of it differently. It's the escape that helps to get through. And we, collectively, have to remember that we don't know what trauma/abuse/pain someone has/is dealing with. But they got there somehow. And is sure is hard to get back.



This is what double polling in a wheelchair looks like, with not a lot of practice and on a rough and sandy trail. Keep in mind that my videographer is 11.

On loathing thyself

This one was taken by a photographer hired by London Health Science Centre's Inside Magazine.

This is not the first time, nor will it be the last, that I talk about my body. Specific parts that do not look or behave as they used to. It's was yesterday's topic of discussion at my therapy session. My belly. I know in the past I wrote about it being warm and soft, but now it's just there, sticking out in a way that is not pleasing to my eye. Body image is something that everyone struggles with at some (or many) points in time. Too fat, too thin, no butt, too big a butt, no muscles, crooked nose, dark circles, fat ankles, ugly toes, thin hair, too many freckles...pick your poison.

But here's the thing that I learned yesterday. You're going to have to live with it. Changing your body is not really an option. Well, you could go super disciplined with diet and exercise for a certain amount of time - but that is not a sustainable lifestyle choice, in my opinion. We all will give in. So what do you have to do? Give yourself a hug and say I love you just the way you are? Do you trick yourself into loving your flaws? Pretty hard. Or do you recognize the truths. Age - you only get older - cells regenerate more slowly. Work - usually sedentary - consumes more time, meaning less time for exercise. Babies - they change our bodies forever.

Then, in my case, it's physics and biology. No neuromuscular activity means no abdominal wall to support the abdominal organs. So my gut is intestines just "hanging out" instead of being tucked in, in a lovely organized fashion. My posture sucks too, which doesn't help. No muscles below my chest activating postural support without serious conscious effort means that my girls don't stand out like they should either.

So what is one to do? Positive self talk is a start. Reminding yourself about biology, you can't trick genetics, physics or time. Your 14 year old self is gone. Love the 40 year old self instead.

Or do what I did. First, go shopping. Now I am not normally one to promote consumerism, but sometimes, well, you need something new. Or eight things new. You can spend $80 on a new dress, wear it to four different events (with different people of course) and boom - it's a $20 dollar dress. Or you can spend $80 at the second hand shop and get eight new things (like on did on Saturday). Next, put on some makeup and get your hair done. Then get an awesome picture taken so that you can see past those flaws with your own eyes.

LHSC wanted to share my story with the general public, share the good work that happens there. Here is the link to the article and the video that goes along with it. LHSC Inside Magazine Summer 2017 

You must crawl before you walk

Have a good look at this photo. This is Erin Yungblut - from 2011. At this time she was skiing for Madill, racing the final leg of the senior girls relay. What a race it was - maybe you can tell from my reaction? I was pretty excited - that's me with my arms in the air.

This is Erin now, racing as a biathlete for Team Canada. She has gone a very long way - from Wroxeter to Canmore (and every Nordic nation) in a short amount of time. Talk about hard work! The hours of training she puts in everyday are quite astounding. If only I had her drive! Check out her Blog

This is the two of us at physio in Wingham last week.  We were taking a break from "learning to crawl". Now, she is the one cheering me on - how the tables have turned! Even though she is not home all that often we manage to pack in a meaningful visit when she is. I am so grateful for her ongoing support.

Crawling is HARD. OMG it was hard. My arms were shaking, my face was red and I was just about DONE.

It's a bit hard to tell, but here is what's happening: I am attempting to lift my knee off the mat and push it forward. All the while I am trying to stay balanced side-to-side (requires core) with the help of Mark and Erin. Some knee pull-through attempts were more successful than others :) Not bad for a first try. After that it always gets easier. Right?

The last frontier

Skin. It is the largest organ of the human body. Maybe you didn't think of it as an organ? It's actually more like a system, but let's not get too complicated. Multiple types of tissues working together; nerve cells sending and receiving messages, glands secreting sweat and circulating blood to regulate temperature and water levels, protecting our body from being viciously attacked by bacteria and viruses that surround us every day. That is a lot of responsibility. So what happens then when some of those jobs can't be performed? Do you die? In short the answer is no, but the longer version is what has been stewing around in my head for quite some time.

It all came into my mind yesterday. The kids and I were listening to the CBC show called "Out in the open" which focuses on topics that people are thinking about, but maybe not talking about. Yesterday's program was about the loss experienced by those who have had miscarriages - not a particularly uplifting topic, but neither are most of the topics that people don't talk about - which is WHY they don't talk about them. Either that or they are personal body issues that are considered to be just plain gross. At the end of the show they invite people to call or email their suggestions about a topic, which was when Ella suggested that I should. I said that I could talk about what it's like to live with paralysis because most people don't know.

So off I went, later that day, to the CBC site to make my pitch, "tell my story". While I was typing I ended up going in an unexpected direction. In the end, I realized that I had been thinking about it but, had never put it into words. Paralysis is so much more than just not walking. It may have started a few weeks ago when one of my Parkwood friends was sharing some of her stories of getting back out there after having had her heart broken. One of her dates was starting to do the "can you feel this?" (something my kids did with me very early on) and her response was "oh, so we're going to play this game, are we??"

But maybe I have been thinking about it long before that? Which is where even I get uncomfortable about sharing.

Do you remember in biology class seeing the image of the sensory nervous system, the one that shows how the lips and hands are super sensitive compared to all else? It shows them as grossly exaggerated? Well, even though this is true, the rest of the body is important too.

Okay, Julie. Just get to the point already? I miss it. My skin, that is. Not that it's gone, of course. But what it should be doing for me - I miss. There's the physiological stuff - sweat and temperature regulation, sure - but it's the being able to feel. Ever spoon with anyone? The handle is just as important as the spoon itself. Have you ever tapped people on the knee while having a conversation? Guess what? Can't feel that either. You know that feeling of being so close there is no space between you? No daylight or air exists in between? Not only does that rarely happen, I'd have to look and see if it is. I can't tell. Touch is so important - you don't know what you've got until it's gone.

I know I have talked about this before, and I know that not everyone is a "touchy" person, it doesn't score high on your needs for feeling loved, but it does for me. And now that two-thirds of my skin can make contact with absolutely no sensation or response? I need it more. I hug most people - even if I don't know you that well and sorry if you are not a hugger. My kids lay in bed with me most mornings even just for a few minutes. It's wonderful and I give them long hugs every chance I get.

Theo's never been a touchy/feely person, I would be the one to walk up to him and initiate a hug. We are in a different place now. When I roll up to him my forehead hits his bellybutton, maybe. It does not accomplish the desired effect. We have pushed-together twin beds (my side has the head/foot going up/down option) which make a King. I go to bed early, he stays up late. I sleep in, he gets up early. We used to go to our queen bed around the same time, read a bit, snuggle and fall asleep. Now it's different. I'm usually asleep when he comes to bed and he's long gone by the time my ears hear the first stirrings of morning. And I think he's afraid - afraid to touch and make my pain worse. But I'm not always in pain.

Our attempt at a selfie. I think we are too old to learn how :)

I have written about getting some motor function back - just a bit in my hip flexors. The reason that has happened is because I have been working hard to try and get a message to those muscles, only then can they respond. It's a multistep process. And I have had lots of therapists helping me. Perhaps what I need to get my sensory system - my skin - to respond is a continuous game of "can you feel this?" It should be part of my therapy. Theo should be my therapist.

Relationships are hard.

Nordic para style

A month or so ago I received an invitation. It came at a time when things were piling on top of each other on the calendar and I was just about to leave for Cuba. I wasn't sure that I was going to be able to make it work, but I knew that I needed to try. This was my chance to learn how it all worked, if I was capable and if I really wanted it. It is being back on skis. The invitation was for a dryland training camp for Para Nordic skiing. It was a weekend St. Catherine's, meeting at the YMCA and using the Welland Canal trail to ski on. Being at the Y at 8:30 am required a couple of overnights so I decided to take a traveling companion with me - someone who also loves to ski.

Michele Studhalter and I. Sporting our matching buffs - thanks Erin :)

Michele is one of my former student athletes. Freshly graduated from Laurier Business she has found herself a position as a marketing specialist in the start-up soaked city of Waterloo. She also has some serious training goals - competing in the Mt. Tremblant Ironman this August. So when I picked her up in Waterloo she piled all of her training gear, including her bike and her roller skis, into my car. Off we went, in the rain and the wind, all the way to Niagara where the fruit trees were all full of blossoms - so beautiful.

Michele has always been my video girl - when she was on the team at Madill we always had great end of the year videos to celebrate with. She has since upgraded to using a gopro - which was exciting and here is the YouTube of what she put together.

In true Nordic Skiing style we were out in all weather. The first day was, shall we say, damp? After that it got a bit nicer, but I was reminded about the difference wind makes - best to start with it in your face and return with it at your back - not the other way around!

Just like downhill skiing, Nordic requires a sit-ski that attaches with a regular ski binding to the skis. If you look carefully you will see a couple of different sit-skis that I used over the weekend. None of them were actually designed for me or fit me properly...so make-shift materials were used. The duct-tape is the most obvious but you may also see a car seatbelt, foam from a floor mat, a pool noodle, foam pipe insulation and lots of velcro. Red Green eat your heart out.

The tighter the bucket is attached to the user, all the better for maneuverability. In order to make turns  you almost need to throw your body in the direction you want to go, lifting your skis up off the surface (pavement in the case of roller skis or tracks in the case of snow). This was the part that I found quite difficult and I was grateful for all the coaches (especially Michele) who were there to keep me going in a relatively straight line. The second day I skied while seated in my wheelchair (instead instead of the sit ski) it was much easier for me to go where I wanted.

The best part was the feeling. Strapping on ski poles and just going. It was like coming home - hard to explain. With very few exceptions I have skied every winter since I was three or four. Not knowing if I would get back to it or not, this weekend was very revealing for me. I saw what others were able to do given the limitations their bodies had placed on them. I met women the same age as me who were not just skiing, but also kayaking! I completed a baseline endurance test on the ski erg (like an upright rower). I also got to be coached rather than be the coach (which at times was tricky!) Having someone to guide me, remind me to breath, the importance of rest and giving me permission to do so. It was so welcoming.

I came home with a new perspective, an understanding that I can push my body a little bit harder than I have been. If it were possible I'd say that I had a spring in my step. Michele and I both made new friends and connections - not just to skiing but to other sports and to our shared interests in coaching. It was like I was returning to a family that I had been away from for a long time, and I hope that I will be able to see them all again soon.

Speaking of perspective, Michele writes her own blog, and it just so happens we were thinking along the same lines! Michele's Blog

I'm not sure where this will all lead me, but you know I am going to try it again - even on snow :)

Payoff

I have been getting behind on my posts. Too much going on and not enough time to keep up. I'm still working on a post from two weeks ago...but wanted to get this all down while it is still fresh in my head!

57 minutes of walking; 2443 steps!

I broke my own record this week. First, I drove myself to Parkwood, by myself. Usually, I have a friend or Theo or even one of the kids (but not behind the wheel) come along, but today I thought I would fly solo. It was one of the rare "high energy" level days - where two hours of physio doesn't completely knock me on my butt. I even managed to pick up the StopGap ramp paint (the first batch of ramps are nearing completion) and a few groceries for the long weekend.

It was an Ekso day, and because I got there early (interesting...) I was able to walk for the longest time ever. Boy was I exhausted (yes, Barry, I was tired).

Speaking of tired, I have changed up my physio schedule to reduce driving time so I am now doing one and a half hours with Bill and Mark once a week. One and a half hours is a long time - especially with the RedCord system - but it's working. I am on a roll with my new found ability to upload videos and make use of YouTube. This was from two weeks ago. I am using the support of my knees against the bed but am able to hold my hips pretty steady with their own strength. Look closely and you can see how I can shift my hips from side to side. 

Since then, the strength of my hip flexors has improved tenfold. The most exciting thing of all...my new muscles! They have been identified as the quadratus lumborum (QL for short) and are a part of the hip flexors group of muscles. I realized they were working last weekend when while laying in bed on my side I was able to roll my hips front to back. Just like that, all of the sudden they were working! As you watch this look carefully at what my right knee is doing. The left side also works :)

All this work I am doing to get the message through and get the muscles going - well, it's working! Patience, slow and steady and hard work on a whole new level. I feel like I am panning for gold, one tiny nugget at a time. 

Mountain Trike

Yesterday I came home to this in my pile of mail.

Outspoken is the publication from Spinal Cord Injury Ontario - the Not-for-Profit that works to advocate and educated for people with spinal cord injuries. I had written the article back in January (they publish quarterly). I attended the Abilities Expo with my Mom and Dad and thought it would be good for others to learn about some of the new devices that are out there. I am pleased with how the article turned out (with the exception of my misspelled name) - the layout is great and the pictures really add to it. Nice to see Jeff Adams (Canadian Paralympian) in them too - I had a great chat with him at the Expo.

I had not expected to see my face on the cover of the magazine. The photos were taken in November on a rare sunny day. I am sitting in my Mountain Trike. It was something I purchased to be able to get around on my property (10 acres is rather large when on wheels). It is made in the UK and took some time to finally arrive, but I'm happy with it.  This is what it looks like in action in fall and on snow. The wheels are connected to the push handles by bike chains and the steering is on the right handle connected to the third wheel at the back. The breaks are on both handles. It doesn't move as fast as I'd like it to, but it does well on uneven terrain.

This will be my first summer with it so I hope that I will be able to get out into the garden and around the property more than I did last year. I did get out in the snow, but it had to be pretty light and fluffy to get through it!

Spread the word, share the road.

Perhaps is is because of the turning of the Earth toward the sun, but most likely it has to do with the people that have surrounded me in this season of spring. Those who have given me new ways to inspire my body to keep going and those who are determined to band together to make changes for the better. I will save the adventures of this past weekend for another post - where my companion and I travelled to make new friends and learn how duct tape is sometimes not enough. It's what happened yesterday that requires the most immediate attention.

This is the first of 60 share the road signs that are going up in Huron County. It is one of the initiatives put forth by the Cycling Strategy presented to the County back in January. These signs are going up in locations around the county where visibility may be tricky and as reminders that cyclist will be on the roads. We all came out to celebrate this sign going up and what a show of support we had! Not only did we have members of the cycling committee and people on bikes, we had the County Warden, and staff from the departments of planning, communications, works, the Health Unit and Scott Miller from CTV made a great story of the event.

It was a show of strength, that we are a team working together to make change. Spread the word, share the road.