Having creative outlets sustains me in life with SMA
Actor Ethan Hawke has a TED Talk titled “Give yourself permission to be creative.” In it, he speaks not just to professional and aspiring artists, but to every person’s need for human expression. He talks about how creativity exists in things like leadership, and how embracing our creative intuition is liberating.
At one point, Hawke discusses what happens when people experience overwhelming grief and overwhelming joy. It’s in those moments that people often turn to art and poetry to try to process those emotions. “And that’s when art’s not a luxury, it’s actually sustenance.”
I’ve wanted to tell stories for as long as I can remember, and I regularly consume videos and podcasts like this. From the time I was a kid, I sought the advice of storytellers about everything from having creative discipline to tips for breaking into media and entertainment industries.
As I reflect on the relationship between my life with SMA and my creative outlets, I know that they are intertwined. Without my intrinsic need to express myself, I don’t know how I’d be able to cope with the loss, frustration, and chaos that come with living with SMA. I also don’t know that I’d be able to make sense of the inherent good that stems from it.
Back in March, I embarked on a major milestone in my creative journey. I sat in a small conference room while a group of actors did a table reading of my original play. The experience was both daunting and exhilarating, as I had written the script in my home office a year before. And while the majority of the actors were just acquaintances, others were friends and teachers who knew me well. I wondered about their reactions in particular. The story I presented to everyone there, albeit fictional, was as personal as anything I write about in my column.
I filled the script with plenty of irreverent humor, but I also strived to balance it with raw emotion. There are storylines that deal with the main character encountering public displays of ableism and grieving the loss of another friend with SMA. Writing the first draft required vulnerability, but hearing the words performed by other people was a whole different level.
By the time we finished the read-through and everyone congratulated me, I felt a spectacular wave of emotions. My play was a culmination of my lifelong passion for storytelling and the nuances of my life with SMA. I poured my heart and soul into it, and I’ll continue to do so with future creative endeavors.
A few weeks ago, I gave my niece and nephews a pair of inflatable guitars that I got at a screening of “Bill & Ted’s Excellent Adventure.” They play with them with the same enthusiasm as professional rock musicians. They’re not worried about performing well or even if they’re playing with real instruments. The joy on their faces is the result of embracing unfiltered creativity.
Living with SMA can feel like my mind is always running. New and recurring issues present themselves every day, and I often don’t want to face them. Yet, my creativity allows me to process the good and the bad, and everything in between. It helps me slow down and recognize the things I’m capable of. Maybe the old adage that the pen is mightier than the sword still rings true.
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, and are intended to spark discussion about issues pertaining to spinal muscular atrophy.
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