She Doesn't Always Smile...

Hello there sunshine and welcome to another post! Today I am going to hit the pause button on my adventures. Dry your eyes, it’s only for one post! :) A goal of mine with this blog has been, and always will be, to tell the whole truth and nothing but the truth about life with a disability. Well dear readers, the truth is that while I’ve been open about some aspects of my life, I have been very closed in other respects. Today however, I am an open book, because today I need to be. You see, most people know me as “Graciebsmiling”, the one who always has a grin on her face. But only a few people will tell you that she doesn’t always smile…
As most of you may know, I have a condition called Arthrogryposis. But what you may not know is that I also have Scoliosis, which is a curvature of the spine. In my younger years this addition to my disability labels did not have an affect on me. In fact, I was blessed with a childhood of little to no daily pain, something that I’ve learned should never be taken for granted. However, Scoliosis is unfortunately progressive, so as I grew older, my curve grew more severe. At age thirteen I remember sitting in my doctor’s office thinking the world was my oyster. With the words referral to a spinal specialist I didn’t even bat an eyelash. It was in this blissful state of ignorance that, at fourteen years old, clouded my future vision as we made the journey to Vancouver to visit a spinal specialist. I went through the typical routine of x-rays and various scans those with disabilities are no strangers to. It never occurred to me how strange it was that as soon as my scans began, the number of radiology technicians went from one to five. At fourteen years old, after completing numerous scans and tests on my body, I sat in the waiting room still thinking life was roses and sunshine.
The moment my spinal specialist walked into the room was the moment my life would change forever. My expectation was to hear that while my spine was a little crooked, it was nothing to worry about, and I could go on my merry way. My reality was much much darker. I listened in a confused stupor to the specialist tell me the true condition of my spine. The curve was severe and needed to be corrected. But the correction was not the saving grace my family and I were looking for. The correction would take place in the form of a gruelling 16 hour surgery, where I would be opened front and back, have two of my vertebrae removed, and the remaining vertebrae attached to a metal rod from top to bottom. The results would be a straighter spine, but the consequence would be having 90% of my already limited mobility taken away. The solution seemed simple to me at the time… I didn’t need a straighter spine, I needed my mobility, so I just wouldn’t get the surgery. There! Problem solved, enter sunshine and roses. But no… My specialist very abruptly informed me that if I refused the surgery, my spine would continue to deteriorate, which would shorten my lifespan significantly and ultimately be fatal. Said consequences are the unspoken dark side of Scoliosis. After all that, I remember sitting in that room, and completely breaking down.
A little piece of me was left behind that day. I could not speak to anyone for a long while. The one question that kept raging in my mind like a stormy sea was “how?”. How do I choose between life or life with little to no function? I pictured all the things that I loved doing being torn away from me. I pictured myself melting away. I questioned God, I asked Him why. Didn’t I have enough? Why did I need this too? What was the point of this? It was during the next few months of my life that my smile changed. It became a mask I hid behind. On the outside I was still smiley Grace, on the inside I was broken. Only a handful of people knew how much I was truly struggling during that time.
When we are young we have this idea, disillusioned as it may be, that we are invincible. We expect that somehow our youth acts like a force field to tragedy and death. But sooner or later, and it’s different for everyone, we get a slap in the face from reality. We come to realize that tragedy and death come no matter how young we are. I could never have imagined this sobering reality to hit me at fourteen years of age. In the months that followed the news about my spine, the questions, the dialogue in my head, the darkness I had to fight every waking minute, all of these things brought me to an early maturity. I fought with myself, I fought with God, and eventually came to the realization that only I could make the decision that was towering before me. Eventually I found my footing again, mostly because of prayer and my mother. And while I felt I would never be the same blissfully ignorant dreamer I once was, I knew that the darkness had passed. I made my decision, one that I knew would ultimately alter my life forever. Nonetheless, a life without the ability to do the things I loved was no life at all. I decided to reject the surgery and take whatever time God would give me on this earth. But that wasn’t the only decision I made. If I didn’t know how long I had left to enjoy life, then I was going to experience all that I possibly could. It was this decision that brought skiing into my existence, which as you know made a lasting impression on my life.
For seven years, I experienced adventure after adventure, stepping outside my comfort zone in more ways than I thought possible. But, as reality would have it, as time progressed so did my spinal curve. At age 21 my spinal curve is now at an 85 degree angle. A 90 degree angle is typically what your knee is at when you sit down. Now imagine that as a spinal curve… When I go for scans now, I chuckle at the ten technicians staring in awe at my images. My line is usually, “bet you haven’t seen a sexy spine like that before!” From the moment I wake up till the moment I go to bed I hurt. Sometimes the hurt lasts well into the night, depriving me of sleep. When I sit, the bottom of my ribs touch the top of my hips, creating a pressure and ache that irritates me constantly. My ribs dislocate constantly, and weekly therapy visits have become the norm. I wear braces and supports to help me make it through my days. All of this I have grown accustomed to, my spine like an old arch nemesis, challenging my every move. But since the fall I’ve noticed a change. My difficulties have suddenly become more. I even experienced loss of feeling in my legs for a time. All of this leads me to something very difficult… Even though I have again faced the darkness and came through with a decision, I still cannot find the words to explain it.
Dear reader, in the summer of this year, 2018, I have decided to start the procedure to correct my Scoliosis. This will take place over several months. The treatment begins with something called halo traction, where a device is screwed into my head, and then attached to a weight system. Traction will take place for a minimum of two months, during which time I will live at the Foothills hospital in Calgary under the watchful eye of my spinal specialist and traction team. Traction begins in July, and once completed, will be followed by the spinal fusion surgery. The hope is that traction will reduce the intensity of the surgery, possibly eliminating the need to remove vertebrae. If all goes well with traction, my surgery will take place in September. The surgery is the unknown factor in this whole process. Truthfully the complications are so numerous I don’t care to write them out… The results of the surgery, whether for better or worse, are not known. A consequence of the surgery is having to give up skiing. I knew it would happen eventually, and though it will be one of the most heart breaking things I will have to face, I am truly thankful for every memory I've been able to create. But it’s time… It cannot be delayed any longer…
In light of this life changing event, I have been asked if I regret the decision I made when I was fourteen, especially if I knew what I know now. I’ve thought long and hard about this, and I can answer without the slightest hesitation. I would not have experienced life as I have without that decision. Because of my choice I have started an adaptive skiing program, became the first female tandem bi skier to heliski in Canada, experienced leaps outside my comfort zone which led to unforgettable memories, but most of all, discovered a version of myself that I didn’t know existed. My story has really been a journey. Each step that I made has brought me a little closer to uncovering the strength, courage, and tenacity within me. How can I regret something that has enriched my life more than words can describe? Yes it’s true, there is a dark side to life, as I well know. But darkness might happen in order to see the stars. God has enabled me to see that as difficult as this experience has been, it has shown me that what matters in life is the little things. The things that make us laugh, smile, cry. Every moment, every breath, is a gift more precious than any earthly treasure. I don’t doubt that I will face many trials ahead, but I know it will only last for a time. So long as I have breath in my lungs, eyes that see, and a smile that can make others smile too, I am blessed beyond description. I am already grateful for the love and support being given to me.
My hope is to document my journey, which I sincerely wish will impact the able bodied and the disabled alike. You are not alone if you are struggling. No matter how big the mountain, we can climb it together. And as always, I would greatly appreciate your prayers and thoughts during this time. The love and support keeps this girl smiling!

Kitty Kitty Bang Bang!

Hello there sunshine and welcome to another post! Today's adventure has something to do with cats skiing... or maybe skiing with cats... or maybe just using cats for skis... meow... Ok ok, in all seriousness... No cats were harmed in the writing of this post...

March 24th was the first of our novelty adventures. It was the day we were to go catskiing with Fernie Wilderness Adventures. But we weren't JUST going catskiing... that was the icing on the cake... We were going catskiing with Tony Schmiesing and Brian Sheckler, the two people who inspired our Heliskiing goal, and the first to accomplish said feat in the States. Let me back up a bit...

On March 21st I could be found pacing back and forth in my bedroom, waiting... Waiting for Tony and his caregiver Jessica to arrive. Scott had gone to Calgary that day to pick them up. For the next week, Tony and Jessica were to stay with us. The whole thing seemed so surreal. A year earlier I watched his video on Facebook about becoming the first quadriplegic to heliski in Alaska. This man, this legend on powder skis, was at any moment going to arrive at my house and stay in my basement suite! By that point I had probably burned a hole in the floor from pacing so much. But at last, I heard voices outside and knew it must be them. I flew from my bedroom door to the elevator, but then… Have you ever had that feeling when meeting someone of note that you’ll have no idea what to say to them? Oh yes, that was me... I sat there, holding the door handle to my elevator, wondering what on earth I would say to the first quadriplegic to ever go heliskiing. It was this slight stupor that was interrupted by my mother asking me if I was going to move or something. I did, I went downstairs, I opened the elevator door, and I was met by one of the most genuine souls I have ever known. That’s really the only way to describe Tony. The awkwardness that exists when first meeting someone was nowhere to be found, because Tony immediately treated me as though we were old friends. I knew instantly that Tony would be a very dear friend to me, which of course remains true. Tony has the great talent of being instantly likeable, interesting, and just generally amazing company. He speaks as though he’s your family, always using words like “hey sister” or “big love”. Every morning I would hear him start playing music just as soon as he was ready, which he’d leave playing softly in the background. Tony is, though I’ve always found this strange to say, a very real individual. He’s also someone you can speak to about anything and know he’ll have a well crafted response. Tony’s caregiver Jess, was equally warm, friendly, overall just a beautiful soul. And then there’s Rhythm, Tony’s faithful and incredibly sassy guide dog. Rhythm, who is a little auburn golden retriever, only remembers she’s a working dog long enough to complete her tasks, but she does so with such a comical flare you’d almost think she was the owner and not the other way around. Tony and Rhythm are both vegetarians, and I can’t say I’ve ever seen a dog get so excited about lettuce hearts... Upon arrival , Rhythm immediately decided being a Canadian suited her, and took advantage of that every chance she got. In summary, the three of them together won our family over within minutes of arriving.
Tony’s first day was spent chiefly in showing him Fernie, unfortunately not in it’s winter splendour, because it was pouring rain… Thanks Fernie, just when I wanted to make an impression! Yet we still managed to have a fun soaked day touring the town, buying chocolate and cheese, and then finishing at Fernie Brewing Company. We then hurried home to welcome our last guest, Brian Sheckler. Brian is Tony’s ski partner in crime, whose presence impacted the room immediately, even if he was only staying for a day and a half. Brian greeted me with a bear hug, which automatically made me like him. Most people hug me like I’m a china doll ready to break if they sneeze in my direction. Brian, like our other guests, became family immediately and added a wonderful new dynamic to our group. With Brian’s arrival, the dream team was completed. What were we missing? Snow….
Unfortunately because of the rain, Tony’s first day was also spent wondering if catskiing would actually happen. The rain was making backcountry conditions variable, which meant there was quite a bit of uncertainty from Fernie Wilderness Adventures about our ski day. We managed to make it through the day with much laughter and smiles, and as we all sat down together in the afternoon, we got the call… We all held our breath as Scott answered his phone… But much to our relief, it began to snow at FWA, making our adventure the next day a possibility.
I barely slept that night, firstly anticipating the events of the next day, but mostly in imagining what a cat would look like. I’ve only seen them in animal form… For some reason, I pictured a big fur covered vehicle with skis and cat ears… I quite literally bounced into the basement the next morning yelling, “WE’RE GOING CATSKIING!!!” I was met with laughter and smiles from our group, who tried to be as enthusiastic as me, but let’s face it… My enthusiasm is as “thpecial” as I am… Poor Scott! He was stressed and preoccupied with gathering my gear together, and instead of being helpful, I just sat there and screamed CATSKIING in his ear… He puts up with so much when I decide to be immature… As we got ready to depart, wheels and ski boots alike, the sky gifted us with a show of pink and crimson. Two wheelchairs, ski gear, and a Sir Scott all piled into our van, affectionately named George, and we set off for our glorious adventure.
Our arrival at the base of Fernie Wilderness Adventures began with a revelation. Cats look NOTHING like what I had imagined! Though considering my imagination, I shouldn’t have been surprised… The cat was square looking, yellow, and to my disappointment, didn’t have ears… We were met by our guides, Brian and Brian… Yes, added together, we had three Brians in our group… not confusing at all… We were also met by Cindy and Kim, who made the whole adventure possible. Ski gear was unloaded, outwear unpacked, and safety briefings completed. I'll summarize the safety talk to save time. “Listen to the guides and don’t be an idiot, or you’re a dead idiot”. Then came loading Tony and I in our trusty steeds. My trust exercise began immediately, as my seat is detachable and needed to be lifted by two people into the cat. The cat is quite high, and as I was being lifted in, I noticed my foot was stuck on the step. Well, before I had a chance to say anything, I was lifted up by my companions, and with that came a dreadful…. POP! Followed by excruciating pain in my knee… I bit my lip for a few seconds, faked a grin, and tried to keep myself from panicking. It was probably just hyperextension I said to myself, nothing to worry about. The pain did not settle down, but I managed to calm myself, and resumed being completely and ridiculously excited. WE’RE GOING CATSKIING was my statement every five minutes until we reached the top of the mountain. It took quite a long time to reach the top, but we didn’t mind. We were too busy laughing, smiling, enduring Kyle Hamilton’s punny jokes. Finally we reached our destination, unloaded from Kitty Kitty Bang Bang as I called it, and sat looking at Fernie Alpine Resort which was situated across from us.
Then came the skiing…. I had never experienced backcountry skiing before then, and let me just say, while it is wildly unpredictable, it’s one of the most incredible feelings. Knowing that you’re the only one on the mountain, the line you choose won’t be touched by anyone else, it makes you feel like you literally are king of the mountain. Our first run completed with the ridiculous grin one has when skiing powder, we loaded into the cat for another run. This time we were deposited by a run called Little Quarry. This run would become Tony’s and my nemesis, though for different reasons. I sat at the top of the run thinking that Scott had finally lost all his marbles. The steepest run I would ever ski, it glared at me in all its intimidating glory. It almost teased me, knowing that I was shivering on the inside. I watched Tony and Brian drop in first, skiing this monster with all the gracefulness of a ballet dancer. As they reached the bottom, a sinking feeling took hold of my chest. It was my turn… I looked at Scott, mumbled that I didn’t want to do this, which he conveniently didn’t hear. Before I knew it, I found myself screaming down Little Quarry, who I’m sure was laughing at me, its newest victim. We reached the bottom, and I stared back up at it, promising that one day I would return and conquer it. However, Little Quarry took a lot of energy from me, so I opted to stay in the cat for the next round. I waited patiently with one of our group members, Debbie, who was also an instructor for the adaptive skiing program. After chatting and laughing for a while, we both began wondering why it was taking so long for the group to return. Finally our ski guide returned, though he was bearing bad news. His short comment was that Tony had a little accident but was completely fine. “Little accident” was the understatement of the year… Little Quarry had claimed yet another victim, for Tony had a horrific crash, which had visibly shaken up the whole group. A few weeks later, we discovered that Tony had actually broken his leg in this accident, though we didn’t know it at the time. For the next round, Tony decided to stay in the cat and warm up. It was the run that I switched instructors and had a chance to ski with Brian, which was thrilling! Though it seemed Little Quarry put a curse on the group, because he and I went crashing into a tree well, and Kyle fell while filming, giving himself whiplash. Our last run reunited the whole group, which was filled with victorious catskiing hoots and hollers. It was with that that we ended our day, and began the long trek back to the base. The whole ride down was spent reminiscing our adventures, with many tears shed over the wonderful memories gained. My tears were in euphoria, but mostly because by that point I could barely move my knee. I finally worked up the courage to tell Scott, who was properly angry with me for not saying something sooner. We later discovered that I had earned my first real ski injury, because I tore the MCL in my knee… Regardless of our various injuries, the group that sat eating delicious soup and sipping warm drinks at the base was a happy one. We had all been united by an incredible experience, and would share those memories for eternity. We continued the party at home with pizza and far too much laughter, if that’s possible, which brought a close to a beautiful day.
The next morning, we said a tearful goodbye to Brian, who had to get back home. Tony was feeling badly from his accident, though at the time we didn’t know why, and spent most of the day resting. He and I chatted for a great length of time, which only reassured me of our growing friendship. We then cleaned ourselves up and when out for Disability Awareness Night, which was a fabulous night to raise funds for project heli. Tony was treated as he should have been, a celebrity amongst us Fernieites, and the whole evening was a huge success.
I soaked up my last few days with Tony, Jess, and Rhythm as much as I could, dreading the day of their departure. I couldn’t fathom not hearing Tony’s music playing downstairs every morning, and hearing his “hey sister” as I emerged from the elevator. But as the saying goes, all good things must come to an end. After a week of beautiful memories, it was time to say goodbye. I think it goes without saying that many tears were shed in the process, but the gentle assurance was present that these new friendships would last a lifetime. And so, our honorary Canadians left for home, thus ending our spectacular catskiing adventure.