How living with SMA is like making a play
My brother and sister-in-law recently took my nephews to see “Paw Patrol Live!” when the show came to our area. Anyone who has kids under the age of 5 is likely familiar with the popular animated series about a canine police force. The live show brings these characters to the stage for an immersive and family-oriented theatrical experience. Reviews range from “YAY!!!” to “Son, there are other cartoons we can watch, too.”
When I saw my nephews the next morning, their eyes lit up like mine did after seeing “Hamilton.” This event was their first exposure to live theater, and it warmed my heart that they embraced the experience wholeheartedly. It also dawned on me that the venue they attended was the same one I’d performed at years ago during a middle school show.
I’ve written about my acting background before and how my years spent in the performing arts shaped who I am today. I made memories and lifelong friends, participated in numerous productions, and acquired skills that I still apply today. In particular, the lessons I learned continually help me manage life with SMA.
The planning stages
Many people outside the theater world don’t realize how much preparation goes into making a play. One of the first steps in getting every production off the ground is the audition process. Even seasoned actors often dread auditions, and I can’t say I was ever excited about them.
Once auditions are done and everyone has their assigned roles, the cast and crew get together to read through the script. The director does the most preparation and has to execute multiple other steps before the first rehearsal.
Likewise, living with SMA requires an immense degree of planning, day in and day out. Each week I manage caregiver schedules, coordinate medical appointments, and ensure that I have transportation anytime I leave the house. It’s akin to directing a play, as I’m responsible for all of the moving pieces.
Another essential component of theater is the collaborative aspect. It doesn’t matter if it’s a one-act play with two characters or a massive production with dozens of roles; producing a play requires teamwork. There’s no such thing as working alone when you’re part of a production.
Everything that one actor does affects the rest of the cast and crew, and each individual better be willing to play nice with others. I’ve played leading roles and parts without any lines. In both cases, I had to be onstage and ready to go at just the right time.
When it comes to SMA life, I don’t believe it’s a solo game, either. I depend not only on paid caregivers to make it through each day, but also on an abundant support system of family members, friends, and strangers. We refer to this in the theater community as an ensemble. And just like a play, every member of my ensemble plays a crucial role.
Embracing the unexpected
Yet no matter how intricate the planning is or how well the cast and crew work together, live theater is about embracing the unexpected. Things happen during a live performance that no one can control, but the show must go on. Actors and crew members put their improvisational skills to the test.
During one production in my sophomore year of high school, I was doing a voice-over role and remained backstage the entire time. Right when it was time for me to perform, my microphone didn’t work. Without this device to amplify my voice, I wasn’t sure if the audience would hear me. I had no choice but to project as loudly as I could.
Anyone who reads my column knows that my life with SMA is a regular stream of unexpected scenarios. From travel issues to wheelchair malfunctions, I always have to be ready to improvise. It’s good to prepare for potential obstacles as much as possible, but a big part of living with SMA is accepting what I can’t control.
So while I’m not performing onstage these days, I carry the lessons from my theater years with me every day. Now, the show goes on.
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.