FRESH AIR AND FREEDOM

January 18, 2018

Winter. It's the season I love most for being active. The love started early!

 

 

I couldn't get enough of tobogganing or making snowmen in the backyard. I loved to "skate" up at the outdoor rink that my elementary school built each year. (Though skating for me really just meant that I would slide around on the ice in my snowsuit - shuffling along on my hands and knees.) It was a different way to experience movement, to feel what it was like to slide and glide with ease, and I LOVED it, even if it looked strange or boring to others! 

 

It didn't matter that it was crazy cold outside, either. In the winter, with the snow around me, I felt care-free. If I fell while playing - which happened a lot thanks to CP - the landing was soft with an abundance of Muskoka snow to cushion the impact!

 

While everyone else around me grumbled about the temperature, or about shoveling the driveway for the fifth time that day, I was always eager to get outside, breathe in that Canadian winter, and to just go walk, or play. Little has changed for me on this since I grew up even though movement has become challenging due to the long-term effects of my spasticity.

 

Then, along came this year. As Christmas time approached, I eagerly looked forward to another frosty season. I thought about all of the walks I would get to take with friends to see the Christmas lights at night, which has become one of my favourite things to do. I looked ahead to the holiday break where I could escape the city for a few days, to visit with my nieces and nephew and go tobogganing with them. And since I have an obsession with cozy scarves, I was giddy with happiness that I had MONTHS ahead of me to wear them all, while bundling up to go outside. I was fashionably ready for winter and I could hardly wait! 

 

But as is so often the case, my body had an entirely different agenda in mind for the start of winter. One morning, back in the last week of November, I woke up feeling EXTRA stiff and unusually tight in my hips and legs. I hadn't put my back out and this wasn't a case of sleeping in a bad position. There was so much tone and tightness in my hip flexors that I couldn't comfortably take a deep breath without feeling a wave of muscle spasms wrap around my mid section and a sharp pain in my back and hips when standing or walking. I went to physio assuming that a good stretch would resolve the tightness as it so often does, and then I'd be on the mend. 

 

We stretched, and we did what we usually do, and soon enough, I was on my way out the door feeling ok...until about 15 steps later, muscle spasms kicked in with such intensity that I had to crawl back toward the clinic. (Yes, I crawled across the parking lot.) Not ideal, but stubbornness is a character trait that runs deep in me, and sometimes, a girl's gotta do what a girl's gotta do! Plus, I assumed this would still be a quick fix.


My rational mind searched through my mental database of "weird, out-of-the-blue pains and problems I've dealt with from Cerebral Palsy" and although nothing quite matched my current predicament, I had enough experience to draw from, to be hopeful that this round of tightness and pain would ease up in a few days. In the meantime, I 'just got on with it' since life and it's responsibilities don't stop for CP.

 

Weeks went by with little improvement. Christmas came, I loaded up on muscle relaxants, tried massages, kept up with stretching, tried heat, tried hydrotherapy, and when none of that really made a difference, I just resigned myself to hope that come the new year, this strange blip of moving like an extra-stiff Tinman would be over. 

 

Finally now, as I enter this 3rd week of January, I've got a bit of relief. And so last night....that beautiful, bright, crisp, cold but sunny January night, I was able to safely go for my first winter walk all on my own...8 full weeks after what I thought would just be an inconvenient muscle spasm.


 

I teared up on that short but meaningful walk - thankful that I could just be outside under my own power, rather than a wheelchair - but also drained and angry and frustrated with this body of mine. 


Here's the thing though: I might not have loved these last 2 months, but let me tell you - I LOVED LAST NIGHT. I loved once again having my freedom. Having a tiny bit of my independence back. I loved being able to stand, and step, and breathe in all that winter air - without severe pain, if even just for a moment. It won't last, but I made a point of cherishing it right then and there.

 

And in the back of my mind, I loved knowing that I am another month closer to a life lived without large periods of time like this that test my patience and my persistence. I loved knowing that I am another month closer to St. Louis, and another month closer toward seeing my dream of SDR surgery come true that puts an end to my spasticity for good. 
 

I still have such a long way to go to fundraise in order to see this happen, but I am beyond thankful that I'm on my way.

 

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