Showing posts with label disability. Show all posts
Showing posts with label disability. Show all posts

Tuesday, 11 February 2020

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. 

Sunday, 26 January 2020

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
















Monday, 20 January 2020

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