Some of my biggest lessons have come from my toughest messes. To me, that’s the best way to grow. It’s the best way to move forward and come to terms with the challenges and obstacles people with SMA face on a daily basis. However, being able to learn from the mess doesn’t imply that the journey to overcoming it is necessarily going to be easier.
I’ve hit rock bottom before. And, I’ve grown acquainted with what it feels like to be at the deepest bottom of all bottoms. I’ve sat in the darkest mess and become familiarized with grief and pain. I’ve let it consume me and take the reins of my life, and despite being wrong, I’ve told myself a thousand times that the mess I was in was far too complicated to provide a lesson.
I’ll never forget one of the biggest, and simplest, lessons I’ve received in my lifetime. It was from my critical care specialist during one of my biggest messes. Just months before I received my first Spinraza injection, I became sick with the flu and gastritis, which landed me in the intensive care unit. At the time, I thought my body was so weak beyond repair. I was losing strength at a rapid rate and had coaxed myself into thinking the next time I got sick, SMA would eventually “win.”
I cried almost every day in that hospital bed. Entangled in a web of tubes, I was uncomfortable, irritable, and losing the faith I had so strongly carried throughout the years. Losing steam, I didn’t want to fight anymore. There was no lesson to be learned. There was no flashing, neon sign that led me to rise above this moment in time. There was no light shining in my deep, dark rock bottom. Yet, that was when everything changed.
My doctor walked into my room, looked around, and said, “It’s 2 p.m. and it’s pitch black in here. Let the sunshine in. It’ll make you feel better.”
For a moment, he was no longer just a man in a white lab coat giving me updates on my health prognosis. He was a man with empathetic eyes as he gently reminded me I was stronger than this. He knew how hard it was. He knew how defeated I felt. But, he also knew that deep down, there was a tough and stubborn girl trying to emerge from the rubble.
He walked to the back of the room, threw the shades open, and said, “Promise me you’ll keep those shades open, and I promise you’ll be out of here soon.”
With a new perspective and a little bit of sunshine, I began to see the light at the end of the tunnel — literally. My doctor was right. I was stronger than my struggle, but my current circumstances led me to believe otherwise. My current circumstances took the reins of my life and led me deeper and deeper into the dark.
I believe in the importance of experiencing negative emotions fully. Be sad, be angry, be anything you want to feel, but there comes a point in time when you must realize these emotions cannot control you any longer. There comes a point when, suddenly, you realize you had the ability to control them all along.
But first, you must be willing to open the shades to let the light in.
Note: SMA News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of SMA News Today or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to spinal muscular atrophy.
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