Neuropathy Showdown - Week 3

I want to start this weeks therapy post by writing about my greatest athletic heroes. For some reason my heroes have always been dominated by the sports I love and even though that wasn't considered as 'cool' exactly for a girl, I never let my dreams of one day joining my idols in greatness diminish. Track and field, x-country and basketball teams were the only reasons I even showed up at school while my weekends were filled with skiing, swimming and skating. Sports have always been my life.

During my elementary and high school years I was one of an inseparable posse of four girls; all different but always accepting of one another. One was into shopping and fashion, her bedroom walls covered with pictures of models and she told us we could only ever be skinny enough if our clavicle bones stuck out like the ones in the pictures that adorned her room, so we all-for-one dieted and worked out in those gross tinfoilish suits. One was into loud rock'n'roll with Lita Ford bleached and teased hair (it was the 80's after all), so we all-for-one danced our Friday and Saturday nights away at a nearby teen dance club called Pynx. One liked late nights and parties, so we all-for-one snuck out of our sleepovers and gigglingly-whispered our way to whatever was happening in the district of party coolness within walking distance... after eating LOADS of junk food and freezing at least a few bras first, of course. And then there was me, the country music, sports loving freak of the posse and I only ever talked one of my friends into running my first 1500m race with me; we both finished and it was awesome, I realised then, just exactly why my heroes were my heroes and I wanted more of that release.

I suppose I should first begin by admitting to my pure Olympics addiction... when the Olympics are happening, and even for weeks afterward, my whole world is spoken for! I watch every single possible event that I can. I watch live coverage on one television and I record others on two of the other televisions so I miss as little as I possibly can. It takes me weeks and sometimes even months to get through every showing of every event. Even if it's a sport that I'm not particularly fond of, like soccer (I despise soccer), I still watch because all I see during the Olympics is Olympian Dreams coming true and that's what is most important to me. I learn something from everything I watch in the Games, every moment is important, every moment is necessary... for me. I've not yet been to the Olympics myself but that doesn't mean I won't ever be fortunate enough to experience the games in some way, at some point in my lifetime.

Growing up my wintertime dreams were to become an Olympic skier but although Thunder Bay did have some okay downhill skiing back then... well, I was fortunate just to be able to talk my parents into plain old ski school. I wasn't allowed to join the racing team but still, I skied my heart out and... I dreamed. I wasn't actually allowed to race, but since my parents never skied and never came to watch me ski... I raced every chance I got and just never told on myself. All through our beautifully long, cold winters, Steve Podborski was my Olympic Downhill idol and I took his fearless sureness on my own little self after seeing him burst from the gates to cut his way down the mountain during the 1980 Olympics. He was seriously and amazingly, pure relaxed arrogance, he knew he was good, he knew he was idolized and he knew he had earned it all. Thank you, Steve Podborski!

My summertime Olympic Rowing idol was Silken Laumann and it was thanks to her that I spent my every summer (still do) dreaming of rowing... just dreaming. I never got to try my could-be rowing abilities in my growing years, so I mostly focused on actually doing with my skiing and just kept silently wishing on the rowing. I actually did give rowing a try, just a few years back, but coming to the sport later in life was not easy in the clique of our small hometown club. I have always had a really hard time with finding comfortable in new groups and it's become even harder as an adult... Silken empowered my own athletic dreams with her so-fierce-it-was-almost-angry determination,
overcoming life upsets and major injury through training and belief in herself inspires me still. I first joined my high school track team thanks to Silken's own start there; I sucked at sprinting but did well in cross-country running (boy did I lose the running ability fast), high jump and shot put. Thank you, Silken Laumann!

My all-time football hero is the fantastical Tony Dorsett... I wore my #33 Cowboys t-shirt until it was physically painful to pull onto my annoyingly growing body and full of holes... it eventually fell apart and couldn't be saved but my adoration for Tony Dorsett as he ran like wings were carrying him over the field, well it still takes my breath away! I remember being so insanely and angrily jealous that my best friend, Marky, got to play in the football league and girls weren't allowed. I begged my parents to try harder and get me registered but in those days gender equality was a really tough fight when it came to sports and my parents were not into wanting to be 'sports parents'... much to my despair. I never got to run down a football field', in uniform, like my Tony Dorsett did but my dad and my brother both spent hours tossing a football with me, patiently teaching me the proper grip and release and I couldn't get enough... Dad and Robbie, I appreciate you putting up with my annoyingness more than you could ever know! Thank you, Tony Dorsett!

The hockey hero of my heart has always been and always will be, my beloved Louis Franceschetti!!! The Leafs started out as my favourite team simply because they were my big brothers favourite team and when it came to sports, my big brother knew ALL... so if he thought the world of the Leafs, then I did, too! Once I had actually learned the ins and outs of hockey I decided I needed to actually play but just like with football, hockey wasn't for girls back in the day and, even if it had been, my mom was dead set AGAINST being a 'hockey parent'. instead, I begged for the next best thing, to play ringette. My mom said no. Anyhow, back to-mah-Lou... I had seen and heard hints of his early years while watching the NHL games on television but when he came to play for the Leafs, my world was beyond iced! My brother may have hooked me onto the Leafs but It was Lou Franceschetti who kept me there with his fearless attack of the ice as he skated out so full of confidence, his massive checks
that set arenas to bellowing his name, his never-give-up belief in doing what he loved... all were natural abilities to him and all were abilities that I worked to bring into my own derby game year later; my silent 'Franceschetti Check comin' up' rolled through my mind with each hit I went for on the roller derby track made me feel like I really could be one with my hero, just in a little different way. Thank you, Lou Franceschetti!

All of these people I sportingly admire have helped to form who I am and what I put into the sports I take on in my own life but there's one man who I look to as... well, EVERYTHING. I've never met him, I likely never will, but I look up to him as though he hangs the moon every time he raises his black-gloved fist in my minds eye. I first heard of John Carlos when I was in grade school, I had seen a picture, in a book brought in by our teacher, of the famous Political Stand taken on the Olympic Medal Stand in Mexico, the one where Tommy Smith (Gold), Peter Norman (Silver) and John Carlos (Bronze) stood in solidarity, of an even greater action than well-earned celebration. I had questions, so many questions that my teacher just wasn't interested in answering other than with "That really has nothing to do with the Olympics..." How wrong that teacher was and though she quickly moved us on to the next page in her book, I never forgot what I had glimpsed on the page prior. Information wasn't as easy to find in the early 80's as it is now with the Internet but I had burned that photo and those names into my brain and I never lost the curiosity that sparked within me that day I had met both with my little heart that believed it needed to know more. Through the years I saw and read the tiniest snippets of the powerful salute that had happened before I'd even been born but it wasn't until the cursed blessing of the Internet along with the book I'd been waiting for most of my life that I finally learned the whole story of the picture that had stayed with me through all those years from one of the only three men who could truthfully share it... THE JOHN CARLOS STORY ...if you haven't already read it, is one that you really can't afford to miss and if you have read it, read it again. It's not just about that incredible Olympic moment but it's about a whole life full of moments that mean so much more. John Carlos is my ultimate hero for more reasons than just his incredible athletic
abilities; he stands strong in his beliefs, he never gives up in his demands for what is right and his "forty-eight hours" ultimatum has changed and challenged me for the better. Thank you, John Carlos!

So, the reason I wanted to write a little about my heroes had to do with being at therapy today. It was a tough day for me... again. I know what you're probably thinking; enough with the complaining about how hard things are!! I know it. I know I've already said how hard it is and I should just get on with it but it really isn't just about how hard it all is physically. It's SO much more. It's about my whole, entire life having been spent looking up to and working toward athletic heroes and now I find myself walking into a neurology day program with a walker. It's awful. BUT, I realized something when I was walking into the hospital today that I hadn't realized before... every single one of my idols has been where I am now, sure injuries are different than being hit with an illness but a setback is a setback nonetheless. Steve Podborski worked his way back from a devastating knee injury to later ski in the Olympics. Silken Laumann worked her way back from a shattered leg to later row in the Olympics. Yes, Tony Dorsett had been forced to retire after he suffered a knee injury of horrible but he had also come back from injuries before. Lou Franceschetti returned to the ice after suffering a broken foot. Even John Carlos couldn't escape injury throughout his career and had to retire from his football career almost immediately after it had begun... still, he never gave up on what his beautiful abilities had given to him to share with the world.

If my heroes could all fight back, so can I.



And so... on to my weekly therapy update!


Physiotherapy - Appointment 5: (June 13, 2016.)

Today (Monday) I used my walker for the first time. sure, it was humiliating but I was far less wobbly and I wasn't tense with terror of falling the whole time I was using it. My husband dropped me off at the hospital door and asked me if I could get the walker out by myself... the look of pure 'are you fucking kidding me ANGER' I shot at him had him out of the car to help me in a flash. Let me tell you, if I thought I was embarrassed about the walker, I now realize I am not even half as embarrassed as my husband clearly is... I'll digress just a little to when I first found this out for sure.....

We were heading out to our camp on the weekend and he had carefully loaded everything we would need into the car before helping the boys settle into their spots. Once the boys were settled I made my way back through the garage, balancing myself by holding onto the other vehicles, to get my tote bag and pull the walker out.
"Should we bring this so we can go for a walk?" I asked.
He turned to look at the walker, "No, you can just hold onto me, it'll be fine."
"But I'm supposed to start..."
"THERE'S NO ROOM IN THE CAAAAAAAR, GILLIAN!!!"

Okaaaaaaaay... point received!

Anyhow, he did help me today with getting the walker in and out of the car, both before and after my appointment but he couldn't help but chuckle a little at how ridiculous I guess I looked using a walker. I refused to cry today so I turned away quickly and went inside on my own where the days work was about to begin.

Today was an hour and a half of exhausting physio! We started with learning how to safely re-teach my body to stand up from a chair without pushing myself up using my arms. Sounds easy but was far from an easy feat and it took massive amounts of strength to do just two sets of ten repetitions starting from perched high on the lift therapy table to a lower standard chair height. Not fun but I did much better than I even thought possible and through the pain of forcing my muscles, the fear that I would fall and the embarrassment of how I looked it was the pride that I had slowly, shakily and uncoorinatedly accomplished. This was my biggest learning of the day, as small as it may seem. I didn't realize just how much extra work my arms have been doing all this time. I think to myself oh, my legs are getting stronger... I kneel down to hug my boys all the time but really, I depend on my arms to steady me on the way down and the way back up so my legs aren't doing any of the actual work themselves. I have learned a little too well to compensate for my lost abilities and re-learning to trust my legs fully is proving now to be quite a challenge. It's weird that I can control my legs when sitting but I somehow disconnect when standing. It's worsened again lately but I am hoping that by building my muscles I will never fully relapse. So starting from scratch, it is!

The remainder of my session was spent with the following exercises:

- learned to stand up and sit down without depending on my arm strength
- assisted standing knee lifts
- assisted standing toe lifts
- assisted standing heel lifts
- assisted standing glute kickbacks
- assisted standing hamstring kickups

-NuStep for 20 minutes... except that I actually did 23 minutes because I really wanted to make it to
finishing 2 full laps which I did at 22:58 on the machine timer. I want to keep track so I can keep beating my own NuStep record every time!

Going backward still sucks but I'm starting to realize that going forward means actually dealing with what's happened rather than just trying to bypass it all by brushing it off as though I am already my healthy, normal self again. I left physio today feeling, for the first time, honestly hopeful. Life will again soon be good, I'm pretty sure.


Physiotherapy - Appointment 6: (June 16, 2016.)

Today was a busy one in the therapy room again but I've decided I actually prefer it to be; when there's more happening around me I don't seem to feel so self-conscious doing my thing when everyone else is also doing their own thing. It's a room where everybody struggles so everybody understands and faltering isn't so devastatingly embarrassing but instead it's just proof that we are all working our way back to healthy... each on our own but together.

My physio session today started out with something I definitely needed, an actual lesson on how to properly and safely use the walker. A walker looks like it should be the easiest thing in the world to get used to but it actually isn't. I haven't actually left my house with the walker except to go to a doctors appointment and my therapy appointments nor do I plan to, however, after almost wiping out coming down the ramp outside my doctors office I knew I obviously wasn't using the walker to it's full expected potential. Would I have asked for help? Likely not. Was I grateful for the help in lesson form? BEYOND grateful!!! I learned how and when to use the brakes, how to maneuver myself and the walker to work together as a unit. I learned that the walker really is capable of helping me hold myself up straight and sure, instead of stumbling and fumbling all over the place. I now feel confident instead of less than as I did when having to actually purchase the walker and I was more than just a little pissed off after the therapy lesson that the health care store I had bought the walker from didn't even take the twenty seconds necessary to show me how the brakes locked on the walker they sold to me. I kind of feel that a specialty store should be at least mentioning that there are brakes on walkers as well as how and when to use them to the people who are depending on the walkers to keep them safe.

I don't want to sound whiney and angry but picking my walker up was not exactly a positive experience.....

I'm sure when I went into the store (holding my husbands arm for support) I didn't look like the usual 'walker candidate' in my fun Fabletics workout wear and roller derby team hoodie, having gone straight from therapy but I thought that looks weren't meant to be judged?? I told the lady my name and that I had received a call my walker was ready. She asked the name of the person I was picking it up for. I again gave her my name. Another lady overheard and said she would just go and look for the walker after the first lady started to ask... yet again... the name of the person the walker was forrrrr (nothing like forcing me to have to admit it again and again and AGAIN). The second lady was back in a flash with my walker while the first lady went off to retrieve a basket for it... the worst part of the ordeal was the basket, I think; it was horrible, a heavy black-metal basket that would have to be taken off each time the walker was in its folded position. I was SO thankful when an old friend of my sisters walked in and I learned she worked there and was just returning from her lunch break; if she hadn't shown up I would be stuck with that metal basket of horridness! She saw how I hated the basket and quickly explained that because I was buying (not renting) the walker I actually had a choice between that one and a nylon basket that folded easily with the walker which both eliminated the hassle of the hard basket aaaaand managed to also look just a might sportier... if you can imagine a sporty walker! Back to the first lady who, after snapping the hard basket onto the walker, snapped that she had put that one on because she didn't know how much weight the person would be putting into the basket... "Sometimes they put tanks in there, y'know!" Finally my husband spoke up and said, "It's for my wife... standing right HERE!" before turning to me and asking, what are you planning on putting in there? Do you want to go to the army supply store and buy a tank, too?" trying to lighten the atmosphere a little. "My therapy shoes and water bottle," I answered with a defeated shrug. Lady number two answered quickly, "You'll be fine with the nylon one!" The first lady who still wasn't accepting the fact that it was I who needed the walker silently finished ringing up the bill and had me sign the papers before telling me... "Have fun off-roading with that thing!" ... Gee, thanks for first causing mortification to my soul, only to follow up with full-out making fun of me..... It was not a good start for me with the already dreaded walker.....

Back to my therapy session... Today I learned:

- learn to properly and safely use walker
- to shift my body weight fully and safely from one leg to the other
- knee lifts for learning to walk properly again
- side stepping with weight shifting

Let me tell you... today equalled EXHAUSTION! I thought I had been doing really well in being able to get around, even with my unsteady gait. I honestly had no clue that I have been 'shuffling' instead of actually walking while keeping all of my weight on my severely weakened left side to compensate for my even greater-affected right side. It's scary to have to start trusting that my body is finally ready to start working again when, for over a whole year, it's been stuck just in preservation mode. Re-teaching my legs the movements that before the illness just came naturally is pretty wrenching... The old saying 'if we had to think about walking, no one would ever make it across a room' now has much greater meaning in my world because I do have to think about walking. And thinking about every movement, even for something that was once a natural ability, really does make it feel I might never reach the opposite wall. If I'm being honest I have to admit that not only do I want to reach that wall but I also just want to haul off and hit the fuck outta that wall when I reach it, just to help release a little of the stress... I'll save that for when I can make it across on my own so I don't look ridiculous holding my walker with one hand while punching the wall out with the other.....