Who Are You Gracie Lou?

  Hello there sunshine and welcome to today’s post! 

For this week and before I get into other promised posts, I thought I’d introduce you to someone who has impacted and continues to impact my life in many special ways. She is more of an alter ego or a spirit within me, and through her I have found myself on some pretty crazy adventures. I’m kind of cheating here, because what you’re about to read I’ve actually had written for a couple years now... But if you want to get to know her, I can think of no better way than giving you this description. So I hope you enjoy! This is... Gracie Lou Whatwontshedo. 

My mother always taught me it was unladylike to swear. And yet, with the gradual whir of the helicopter rotors I went through every swear word I knew, and probably a few made up ones too. When one believes, whether founded in the truth or not, that death is too close for comfort, the mind tends to race as far away from reality as it can. She was with me then, whispering to dive far beyond my comfort zone. I don’t always want to listen to her, but in this case, I had no choice. I could risk being decapitated by the razor-sharp blades of the helicopter in trying to escape, or face my fears like the mature woman I pretended to be and stay strapped in my seat. Reality has the ability to make a fool out of the best of us though, because the very moment my winged transportation left the ground I forgot all my melodramatic absurdities. Like a phoenix rising to meet the sun, so was my soul breaking free from its bondage. I can only describe the feeling as taking a breath of life for the very first time. Acting like an adult being the farthest thing from my mind, I began to laugh and cry all at once, as if I was rediscovering my childhood innocence and wonder again. She was right, as is usually the case. 

I can honestly say that the excitement of the helicopter taking off is rivaled by the anticipation of it landing. The doors flew open, and myself and my companions carefully lowered ourselves into the waist deep snow of the mountain peak we had just been set upon. And then came the revelation… I found myself perched on the top of a mountain, whose mysteries were yet to be awakened. My heart was immediately overwhelmed by the visions of majestic beauty that were before me. Light has always been a fascination of mine, but when it is cast on snow of the purest whites, it seems to dance and sparkle like no earthly diamond could display. These blankets of snow were seemingly untouched by any living creature. It seemed as though we were in a different world, one where sorrows and hardships could not reach us. The peaceful quiet of this mountain haven is a sensation I to this day struggle to describe. If I were to try, the only conclusion I can make is that the sights and sounds must be as close to heaven as one can imagine. 

My musings were interrupted by the realization that it didn’t matter if I would be satisfied with just the helicopter ride and the view. She wouldn’t let me daydream all day, not when there were adventures to be had. I can remember heaving in deep breaths as I watched my guide float effortlessly through his first few turns. My heart began to thump, my chest tightened, and as I held in my final breath, I imagined the line I was going to choose. I had heard the term “powder eights” used in the skier world, and though in general I try to be a nonconformist, in this case I had to know what they felt like. Exhaling one final time, my courage rose up within me, and I dropped in for my first carve in the snow. From that point on I will always associate cutting in a new line on skis with having butterflies in the stomach. There is nothing more satisfying than carving into the untouched terrain before you. I had hoped that my first few turns would feel like floating on air or bouncing on fluffy clouds, and I was overjoyed to find that they were. Clouds of snow formed around me as I glided from side to side, tickling my cheeks and forming a smile on my lips. I found my rhythm with my guide, and echoed his movements in perfect harmony. And when we both stopped, unable to wipe the gigantic grins from our faces, we looked back on the magical figure eights we had just drawn in the snow. The helicopter glided over them as if to approve our artistic efforts. 

My ski partner, the man whose heart beats to the same rhythm as mine, gave out a light chuckle which only reflected what everyone was feeling. My body may not have left the sit ski which I was securely strapped into, my physical limitations may not have been altered, but my soul in that moment was truly freed. I had for as long as I could remember chased the feeling of freedom. I learned a great lesson that day, the value of which transcends simply skiing on a mountainside. My body may still be bound, but my heart and soul is free to have experiences without limits. My powder eights in the snow were proof enough that you don’t need an able body to experience life’s pleasures. Just an able mind and the tenacity to see it through. 

It was in that experience, one I will never forget as long as I live, that I really grew to appreciate her. All my life I had been told what I could and could not achieve. And yet, her voice was always there, beckoning me to a version of myself I could scarcely recognize. This is the magic of Gracie Lou Whatwontshedo. Who is this mythical creature whose influence challenges the souls of mere mortals like myself? To put it simply, Gracie Lou or whatever name is chosen to represent it, is the undeniable spirit we have within us. A spirit that tells us we can go beyond what is deemed impossible. It is the voice that calls us to be courageous, to be tenacious, to achieve our dreams and reach for the stars. In whatever circumstance, whether it be fighting a personal demon or finding the strength to be a pioneer, we all have the capacity to be exactly what we want to be. Though it took me a long time to recognize her presence, I have come to realize that Gracie Lou was apart of me all along. She is always there, daring me to find myself through the experiences I have. And so I continue to seek adventures beyond my limitations. With Gracie Lou in my heart, there really is no telling what I’ll do. 

Fourteen No More!

Well hello there sunshine and welcome to another post!

For today’s post I thought maybe I should introduce myself. Now I know I did an introduction when I started this blog, but that was also almost ten years ago, and I am no longer a socially awkward fourteen year old. I am now a socially awkward adult! Honestly I’m not the same person I was even a year ago, let alone almost a decade ago. Woah... a decade.... That makes me feel old... Anyways, let’s take some time to get reacquainted! Also if you’re new here, you’re probably wondering who the heck I am and why I’m taking up space on the internet... 

Hey there! I’m Grace Brulotte, I’m twenty three years old, and I was born and raised in heavenly Fernie British Columbia. I was born with two physical disabilities, both of which leave me wheelchair bound and reliant on caregivers. The first is a congenital birth defect called Arthrogryposis Multiplex Congenita (AMC), which is a big scary term that basically means stiff joints. From the neck down, all my joints have little to no flexibility. I also have basically no muscle and am not really able to gain muscle. Arthrogryposis isn’t progressive, meaning it doesn’t get worse over time (so they say). I’ll be doing a separate post on AMC later, so stick around for that! The second condition I have is Scoliosis, which is a curvature of the spine. And much easier to spell/say than my other condition... Scoliosis is unfortunately progressive, meaning every year the curve in my spine gets a little worse. My curvature is considered very severe, coming in at a shocking 95 degrees, and is deemed inoperable (too dangerous to fix via surgery). Another post will be coming later on about Scoliosis and my specific situation as well. 

Despite my physical disabilities, I still manage to have a pretty full life! I know, what.a crazy thought... Someone with severe limitations can have a full life! Honestly, since my Scoliosis diagnosis became so serious, I’ve began a new life motto of “accepting what is and letting go of what cannot be”. I enjoy challenging myself to try new things and reach new goals. I love anything outdoors, so in the summertime you’ll find me on long walks to my favourite scenic spots in Fernie. Becoming familiar with plants and trees is another outdoor activity I enjoy. I find it interesting to look up how things were used, either medicinally or practically. I’m able to be a lot more active in the summer, so I enjoy activities like paddle boarding, camping, swimming and of course road trips. The only time you’ll find me indoors is when it’s raining, and even then I tend to have a dance in the rain every now and then. Which is why my wheelchair technicians hate me... Being outside gets restricted for me in the winter unfortunately... The only real outside time I spend is when I’m sit skiing, which I’ve been doing since I was fourteen. I’ve skied every lift and every bowl at Fernie Alpine Resort, conquered blacks and double blacks, went cat skiing twice, and was the first female tandem sit skier to heliski in Canada. But more on all that later... When I’m not skiing, I enjoy reading good classic books, watching feel good movies, and of course writing. 

Let’s see... How would I describe my personality? A little shy at first I’d say. I’m not a huge fan of large crowds, and if I’m meeting new people I tend to be quite antsy. But once I warm up to someone, then all my quirks come out. I’m an enthusiastic and cheerful person 90% of the time. Although if I’m not doing well for whatever reason, people generally don’t know it because I’ll hide behind my well known smile and attitude. Only the people who know me intimately can tell the difference between my real smile and a fake smile. I generally love being social and being around people, but I also value my alone time when I get to go for a walk or listen to music. I’d say one of my greatest strengths, and potentially my greatest weakness as well, is that I care about others and love to help in any way I can. I have a passion for advocacy, and even though it scares me beyond all reason, I love public speaking. I have an addiction to buying cute teacups from thrift shops (or teapots), and literally have a whole cupboard dedicated to them. My rule is that I have to use a different cup every time, and then I feel totally justified in owning so many... I also have a chip addiction, to the point where I have another cupboard in my kitchen which is deemed “The Snack Cupboard”. I’ll buy pretty much anything if it’s purple or has something to do with unicorns. And my shelves are literally exploding with well loved books. Beyond all that, I’m a pretty dorky human being, who will sass attack anyone, and absolutely loves to laugh. 

As far as my professional life goes, I’m a very busy girl.... I manage not one, not two, but three nonprofit societies. For my paid job I am the Administrative Manager of an amazing organization called Elk Valley Hospice. I’ll be doing a post later on finding a job and being employed as a person with a disability, so stick around for that! For my volunteer work, I’ve been the President and Program Manager of FIRE Adaptive Snow Program for almost 10 years now, which I founded when I was just fourteen. My work with FIRE has earned me a national award for administration, I was recognized provincially as the Most Influential Woman in Business, and was the City of Fernie’s Youth Achievement Award winner. In 2019, I became the President and co-founder of the Gracie Lou Foundation, which focuses on inclusion and advocacy for people with disabilities. In June 2019, with the help of some amazing volunteers, we built purple portable ramps for 15 businesses in downtown Fernie, making them accessible for those with mobility challenges. It was such a fun kickstart project and will be followed by many more! 

There you have it! All acquainted with the adult version of Grace Brulotte... She’s fiercely independent, incredibly sassy, crazy busy, ready for a new challenge or adventure, and most importantly... Always smiling! Don’t you forget to smile today, and make sure you join me next time for another post on the Gracie Lou Perspective! 

Instagram - @gracielouwhatwontshedo 

Facebook - @gracielouwhatwontshedo

Email - gracielouwwsd@gmail.com

The Gracie Lou Foundation Facebook - @gracieloufoundation

FIRE Adaptive Snow Program Facebook - @fireadaptive

Where’d you go!?

Well hello there sunshine!

Where have you been!? Yes I know it’s been a while... It’s funny how life goes, isn’t it? You go through phases, you love something for a while and then you don’t, you’re motivated one minute and procrastinating the next, you’re passionate about something and then you move on. But then you come back! And when you do, you’re more fired up than ever! So I hereby solemnly swear that I will try harder to work on this blog, to potentially (I said potentially), bring you a somewhat interesting read every week, and attempt to not neglect said blog for oh.... A year or more. Or I’ll try my darnedest at the very least! And if I don’t then it’ll be like every other New Years resolution that fell by the wayside. Hmm, I never did buy that gym pass... 

Now... I’ve made a fundamental change to this blog, which you shouldn’t have failed to notice if you’re a veteran to it. The blog will no longer be called Disabled and Living in the Real World. Gasp! I know, shocking!! I do have a somewhat reasonable explanation for this... Firstly, since I’m attempting a fresh start with this blog, I figured it too needed a fresh start. While I will always love its previous name, I’m a little older now, a tiny bit wiser, and feel that the blog should be a reflection of where I am currently in life. Gracie Lou, whom I shall introduce you to in a forthcoming post, has become a huge part of my current life path. Not only is she an alter ego if you will, a public persona, she is also someone I strive to be when facing new challenges. But more on that later... This blog shall hereby be known as The Gracie Lou Perspective. Picture a beam of light shining down on the title, a choir singing, fireworks exploding, all that good stuff. 

So what can you expect from this new and hopefully improved blog? More narratives of the world as I see and experience it of course. But I’d also like this blog to be somewhat useful. Not just me telling you how hectic my life is on any given day. I refuse to have a “millennial” blog where all I do is talk about myself, repeat the word "like" after every second word, and post 20 pictures of the food I eat. That’s like totally 2019! So you can expect practical advice, real world experiences, reviews, potentially some interviews with other people, and much more. I hope to speak to those in the disability community, offer my experiences and hear theirs, be an advocate to the best of my abilities, shed light on the things that have been hidden, offer a different perspective, and hopefully redefine “disabled living” for society today. I know, way to set the bar high! But hey, go big or go home right!? ;) 

I hope you’ll join me as I attempt (if at first you don’t succeed, try till it pisses you off, swear a bunch, cry and yell and scream, and then for god’s sake try again) to not fail at blogging... again... You can subscribe on the right side by entering your email, and you’ll receive a notification when I make a post. And then you can marvel right along with me that I didn’t procrastinate and actually got it done. And don’t worry, a notification of a new post is all you’ll receive via email subscription. Also feel free to follow me on any of the social media outlets listed below. Don’t be a stranger! Let me know in the comments if there’s a blog subject you’d like me to address. 

Until next time, enjoy some pictures summarizing how much life I’ve neglected to capture on this blog.... Bad Gracie Lou! And hey, don’t forget to smile!

Instagram - @gracielouwhatwontshedo
Facebook - @gracielouwhatwontshedo
Email - gracielouwwsd@gmail.com
The Gracie Lou Foundation Facebook - @gracieloufoundation

Flying into the History Books...

Hello there sunshine and welcome to today's post! I would like to start by saying I have been dreading this post for a long while now... Confidence is always an issue for me, and this is no exception. Ever since my heliskiing adventure happened, I knew there would come a time when I needed to transfer what was going on in my head to the written word. I honestly don't think I can do that... But as this is one of the most monumental experiences that has ever happened in my life, obviously it's important for it to have a portion in my blog, so... I will try dear reader, even though I might fail miserably, to describe the day of all days... The day I made history...

At 5:00 in the morning on April 3rd I woke up tired, groggy, and well... cranky... I had barely slept that night and therefore felt like I had been hit by an Eastbound express train. When I sat up and tried to tell myself that I was actually a human, my knee reminded me that it was still angry from the night before. MCL tears are no fun.... My neck reminded me that it also was mad at me for not being able to stay calm when faced with something exciting. I got up, proceeded to try and get dressed, but while doing so fell backwards and hit my neck off the counter, which not only made it angrier but added to my gloomy state of mind. Each layer of clothing I had to put on seemed to take an eternity, which it did because my fingers acted the way they always do and got stuck in every fold of the sleeve. I was in desperate need of coffee, which only upset me more because... I CAN'T DRINK COFFEE! I made one last attempt to remind myself that I was a human before going to the lobby, where I would demonstrate how dangerous a hungry, tired, coffee deprived woman can be. Actually that wasn't the plan, but the annoying thing about skiing with Scott for two seasons is that he automatically can tell when I'm upset... my mask doesn't work on him... He grabbed me by the shoulders, held me at arm's length and said, "Smile for me, Gracie Lou. We're going heliskiing."

Heliskiing? Of course, that was the reason we were all at The Prestige in Golden BC that morning, but up until that point, it seemed like a dream to me. We had arrived there two days early in order to allow my body rest from the travel, but that whole time I was on edge, thinking that if I moved too much I'd break the spell and the dream would be over. But it wasn't a dream! I was in the lobby of The Prestige in Golden because I was about to become the first female tandem sit skier to heliski in Canada. This is what we had been anticipating for months before. This is what the community of Fernie supported so faithfully. This is what Scott worked towards with such perseverance. That was enough to make me smile. I felt Grace coming back to me again, and I began to giggle and laugh and run through the parking lot like the dork I am. That excitement lasted all through breakfast, and even when we took a couple wrong turns going up to Purcell lodge, which resulted in a few U-turns and confusion for our team following us. 

The first person I met upon arrival was Rudi Gertsch, or The Rudi Gertsch I should say. Scott made sure I was very familiar with just how much of a legend Rudi is before we came. Not only was I going heliskiing, but the man who was one of the fathers of heliskiing in Canada would be my guide... I felt intimidated and honoured all at the same time, but he immediately made me feel at ease, due to his warm and friendly spirit. The Purcell lodge was just what a lodge ought to be, with a huge fire blazing, plenty of log detailing, and a beautiful balcony with clear views of the mountains we'd be playing on. While sipping Rudi's special homemade tea, Jeff Gertsch, who is every bit as lovely as his father, began our safety briefing. He started with telling us about the avalanche beacons, how they worked, what they did, warnings not to wear anything magnetic or metal near them, etc. We then took a walk up to the heli to learn the proper way to approach it. And then the conversation took a switch... Let me summarise what the next 45 minutes sounded like.... "If you make this mistake, you'll die. If you do this by accident, we'll all die. If you break this, you'll have to remortgage your house to pay for it. If you touch this, you owe us a beer." We then went back to the lodge and had a long discussion about avalanches. Basically, "If you're caught in an avalanche, do this. If you see someone else caught in an avalanche, do this. Heliskiing is dangerous, so let's do our best to come back in one piece." At that point, there was one thing and one thing only running through my mind... WHAT THE HELL AM I DOING HERE!?!? I'm dead no matter what in all of these situations! Who said this would be fun!? I'm too young to die!! "Sit skier dies in avalanche while trying to make history", oh yes, I can see the headlines now! WHAT IS WRONG WITH ME!?!?!? Evidently, I wasn't hiding my conniption as well as I hoped... Scott said I looked as white as snow by the time the safety talks were finished. The next few minutes of getting ready and in the heli were a blur of silently wondering if I'd ever see solid ground again... I said one more farewell to my parents, made sure I told them I loved them, and then the heli doors were closed and latched. I took one look at Scott, who was smiling and chuckling to himself, and then tried to take a breath and clear my mind. It was too late to run, so I'd have to live with my crazy decision to be the disabled adventure hero... darn me... 

I was in this apprehensive mood for a moment or two longer, and then the heli rotors started spinning... They spun and spun, and then all of a sudden I felt us lift off the ground and take to the skies. It was as if someone had flipped a switch in my brain. I immediately started to smile my normal Grace smile, giggle and laugh, and make everyone else do the same because, WE WERE GOING HELISKIING!!! Every little bit of anxiety melted away in an instant as I gazed at the mountains from a bluebird sky. My feelings at that moment are hard to describe, except to say it was the most life altering freedom I have ever experienced. And oh, it was beautiful. I wish there was a word to describe the glory I saw from that helicopter. Looking down on the mountains from the sky is truly one of the most breathtaking views in the world. The peaks sparkled in the light of the sun. The blankets of snow that covered them reflected the meaning of pure. It was untouched and looked as soft as a cloud. Nothing could demonstrate God's artistic creation so profoundly. My life would've been complete with just the experience of flying in the heli, but there was more awaiting me, as we made our mark in the untouched snow and landed. 

As soon as I felt my skis sink into the 30 centimetres of fresh fluff the Purcell mountains had gotten the night before, I knew this skiing experience would be unlike anything I've ever had before. I watched as Rudi cut the first lines and skied a few turns ahead of us. He eventually stopped and signalled for us to follow. I held my breath as I felt Scott start to turn me away from the slope and pick up speed. The feeling one has while skiing powder is hard to describe at the best of times, but backcountry skiing? It's an entirely different world...  It felt as though I was completely weightless. I almost thought I was defying gravity. Not one single bump did I feel as we carved out our turns, only a lightness that made it seem like I was floating on a cloud. We stopped just behind Rudi (never go ahead of your guides... ever...) and looked back. Evidence of our presence remained in the snow, almost like the markings figure skaters make on the ice. And that's when it hit me... All the emotions that had been building for the past year filled my heart and soul... and eyes... Not only was I heliskiing, which was the best experience of my life, but I had also just made history. And no one can ever take that away from me. It was the feeling of barriers and the word impossible being shattered, of burdens falling off my shoulders, of labels and preconceived notions being broken down. It was liberating! I looked back at Scott, who I could tell was feeling the same thing I was, and smiled. I won't ever forget that moment, it was one of the most precious memories I'll have from this adventure. 

At that point, after Rudi's expectations were exceeded with how well Scott and I could ski, he made a suggestion that would become legendary to both of us. "Would you like to try some powder eights?" Rudi is known for his powder eights... I'm sure I'm not explaining this properly, but powder eights are when the first skier makes tight turns down the slope, and the second skier matches their rhythm except in the opposite direction. We stopped at the bottom and looked back at the perfect figure eights we had just drawn out. The most beautiful powder eights I've ever seen... That moment had way more of an impact on Scott though, whose goal it had been to ski powder eights with Rudi for many many years. I'm only sorry he had to share that with me... But it was a moment I shall never forget. Our chariot was waiting for us at the bottom, so we loaded up and began all over again. Just a note here, I don't think I can ever be content riding a chairlift again... the heli wrecked me... 

Emotions for both Scott and I were very high as we paused for lunch, and then Rudi said, "You know Grace, every time I take a group out, someone always asks me what my best day was. Up until now, I didn't have an answer. Now I have an answer." My whole heliskiing day could've ended right there and I would've been over the moon. To hear the man who not only brought heliskiing to Canada, but also had been guiding for 50 years, say our adventure was the best in his mind was incredible. To say that I was honoured and overwhelmed was an understatement. And on that note, we continued to ski... My heart was so full at that point I felt like it would explode... More powder eights followed, some with the heli flying over us, and all within the most perfect weather imaginable. It all felt like a dream... a wonderful wonderful dream... 

I sat out the last run of the day to give Scott a much deserved free ski, which I didn't mind at all, because well... the heli has to turn around to fly back to the bottom... which means it literally has to turn sideways... Have you ever looked straight down a tree while being sideways in the air? It's fantastic! When Scott got back in the heli it looked like he had just gone to heaven and back... he got his powder eights with Rudi... After five glorious runs, four for me, we lifted off and headed back to the lodge. I watched our powder eights get smaller and smaller and eventually fade away. Our tracks may get covered so other skiers can enjoy the freedom of fresh lines, but in my mind, I will always see them, and they will always signify a life changing experience. 

We landed on solid ground again, which I'm not going to lie was kind of a relief, and I knew I could never be the same. I smiled like an absolutely starstruck dork the whole rest of the day. I literally felt like I was floating in another reality. We all went back to the lodge to unwind and enjoy some apres ski snacks. But I went out on the balcony and just stared at those glorious peaks, which were transformed and took on a whole new meaning to me. The feeling that dominated my heart and soul was thankfulness. I could never have gone on such an adventure if it weren't for Scott and his belief that anything was possible. I am ever so grateful to Rudi, Jeff, and the Purcell Heliskiing team for supporting our out of the ordinary vision. They are an incredible team who I am honoured to know and ski with. And honestly, none of this would have happened without the wonderful community of Fernie, who gathered around me to make my dreams come true. Amazing feats can be accomplished when one has the support of those who share a common goal, a common dream. I know I can't thank everyone who helped me to make history, but just know that what you have done will stay with me forever. Thank you does not seem adequate... 

Dear reader, if there is anything I would wish you to take away from what you have just read, it is this... It's ok to be afraid when faced with a new challenge. Fear is part of the struggle that comes with stepping outside what is comfortable. Don't be ashamed of that fear, it's natural, normal even. But never, never ever, let fear be what stops you from trying something new, from going on an adventure, from being a pioneer. Make the choice to be an overcomer, take the difficult path that leads to the unknown. For what you will discover at the end of that path might surprise you and even change your life. The victory is sweet, but the struggle and fight to get there is even more rewarding. Most importantly, never give up!
I watched the sun set on the beautiful peaks I had just become acquainted with, and as I drifted off to sleep that night, all I saw was powder eights. They may have been erased the next morning, but they'll always be there in my heart, representing a breakthrough from fear, and a new definition of possible. 

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.

First Challenge, First Chair

Hello there sunshine and welcome back! Ok ok, let me yell at myself for you... "Welcome back!? I didn't go anywhere! Where have YOU been??? You think it's ok to just leave for months after introducing your new adventure? What kind of blogger are you anyways? You're fired! After you catch up on all the adventures you neglected to tell us about..." Sound about right? Well let me fix the situation... and then maybe you'll un-fire me... de-fire me... take-back-firing-me... You get what I'm saying...

Let's go all the way back to December 2016... even though we're almost at December 2017... December 4th my alarm rudely woke me up at 5:00 in the morning. I rolled over, looked at my clock, shivered, pulled my blankets over my head, and tried to remind myself why I willingly chose to wake myself up that early. (Admittedly, when I first woke up I did all of those things plus throw up...) I had a dislocated rib and was just starting to come down with the stomach flu. So why was I awake in the wee hours of the morning when I was vomiting and had a dislocated rib? Because first chair of the season waits for no man, woman, child, or grumpy/sick/hurting Grace. Scott and I had been planning first chair to be our first adventure for months. Scott had camped in front of Timber chair in freezing temperatures, along with the necessary but not comfortable bed partner of my sit ski, so I could be a trail blazer. And I wouldn't be the Grace that I am if I let a little puke and pain stop me from conquering a new challenge! Puke be damned, my reputation was on the line!

I forced myself to get up, told my mom that I was sorry I was making her get up this early, spent the next hour getting into my under layers (not kidding, that's how long it takes), managed to get down half a piece of toast, threw it up before leaving, grabbed my outerwear, and said a last minute prayer that I wouldn't be sick again while loading the chair. My overactive imagination did what it always does in high-pressure situations... I could picture the newspaper headlines... "First Disabled Girl to Puke on First Chair". Ok Grace, deep breaths... In through the nose... Out through the mouth... I hate admitting that Scott's breathing exercises, which he nags me to do pretty much every time we're together, do actually work... We pulled up to the parking lot near the Timber chair, and the first person I saw was Scott, followed by at least 100 other people in line. Scott was all smiles and energy, which is surprising considering that he slept outside in December, until he saw my face. "How are you?" he said, "Besides green?" At that point I was just trying not to lose my mind... Ok ok, trying not to lose the rest of my mind...

I spent the next half an hour getting my outerwear on and trying not to sound like a basket case for the newspaper reporter. The next thing I knew, Scott was setting me into my sit ski, clipping me in, and whisking me over to the chairlift. I joined Ryan and G-Money, the other two incredible individuals who camped at the hill the night before. This would be the sixteenth first chair for G-Money, and I felt truly honoured to be sharing it with him. As I looked down the line of 100 eager faces waiting for the chairlift to open, I couldn't help feeling overwhelmed and grateful. That moment was the beginning of a new season for each of those individuals. A season full of new memories, adventures, discoveries. The energy of that moment was almost tangible. And there I was, a disabled skier, about to experience a skier's "right of passage". I wasn't disabled in that moment. I was a skier... which means more to me than words can describe. But at the same time, I was disabled, and I was being a trail blazer. It thrilled me that I could make this statement for the adaptive community. Impossible can be just an attitude, not a reality, not a definition, not a label, and never final. I was so proud that I could have that experience if only to show that anything is possible.

"You see this ticket?" said Sir Scott. "It's going on your sit ski, and it's not going to get covered or come off unless it's another first chair ticket." As the time grew nearer to load the first chair, the energy of the crowd stepped up a notch. The cheers, the hoots and hollers, the laughter, it was brilliant! And then the countdown began... "10, 9, 8, 7..." The crowds cheered, the Fernie Alpine Resort banner dropped, we skied onto the platform, chair number 1 whisked us away, and just like that it was over. I looked at the people beside me, heard the excitement behind me, and made a point of capturing the memory in my mind forever. The day I became the first sit skier to get first chair at Fernie Alpine Resort, and the beginning of many more adventures... Come back soon to hear more...