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!