Navigating the Many Highs and Lows of Life With SMA

Kevin Schaefer avatar

by Kevin Schaefer |

Share this article:

Share article via email
lessons from my father | SMA News Today | illustration of alien

I recently attended my first pop culture convention since the onset of the COVID-19 pandemic. Masked up, I felt right at home among the crowds of “Star Wars” and “Stranger Things” cosplayers passing by. Though it had been three years since my last con, I eagerly anticipated a day full of quirky costumes, creator signings, and waiting in line at the concession stand for greasy chicken tenders.

The day started off great as the convention staff gave the friend who came with me free admission for serving as my honorary personal care assistant. He emptied my catheter that afternoon and charged my wheelchair when the battery ran low, so he definitely earned his stripes. We also received fast passes to cut in line for all the celebrity signings, which is a sweet deal when the guests included Giancarlo Esposito and Brendan Fraser. For me, I was set on meeting my personal hero and ambulatory doppelgänger, Kevin Smith.

living with SMA | SMA News Today | Kevin Schaefer poses for a photo with Kevin Smith at a recent pop culture convention.

Me and Kevin Smith. (Courtesy of Kevin Schaefer)

As I reveled in the sheer geekery of meeting Smith, a cult movie director and podcaster, just hours after taking a selfie with “Stranger Things” actor Grace Van Dien (“CHRISSY, WAKE UP!”), I was pretty thankful for the beauty of disability perks. I felt a bit like nerd royalty as I cut past the dozens of other fans who had to wait for a much longer period of time. It didn’t even faze me that in between signings, an employee at the ticket booth said to me, “Don’t run anyone over! I know you want to.”

I’m sure this person’s stand-up career is going exceedingly well.

living with SMA | SMA News Today | Kevin Schaefer poses next to actor Grace Van Dien at a recent pop culture convention.

“CHRISSY, WAKE UP!” (Courtesy of Kevin Schaefer)

Yet as the day wore on, my body reminded me of its limitations. When I’m in my element and surrounded by things and people I love, it’s easy to ignore the effects of SMA. Though I’m more cognizant of it today, there have been plenty of instances where I’ve completely ignored signs of fatigue and pushed myself too hard.

In this case, I was more cooperative with my body. Around lunchtime, the arm that I use to drive my chair was starting to wear out. I had been maneuvering around the convention floor for a couple of hours at that point, and I knew it was time for a break. My friend and I pulled over to a corner and grabbed lunch. Afterward, I attended a panel, which gave me another 45 minutes to sit and rest my arm.

Recommended Reading
SMA clinical trial | SMA News Today | taldefgrobep alfa | illustration of now recruiting banner

First Patient Enrolled in Phase 3 SMA Trial of Taldefgrobep Alfa

Pacing myself certainly helped, but the frustrating truth is that my right arm, which I use the most, has been wearing out more easily these days. From instances where I struggled to cross the street to pausing repeatedly in the middle of Disneyland during my recent trip, just getting from point A to point B can feel like a Herculean task. Whereas moving the joystick on my chair used to be something I didn’t even think about, I now have to factor in how much energy I have and if I need someone with me in case my energy plummets.

This is the reality of SMA. My disabled life isn’t the miserable existence that media outlets and societal stigmas often portray it as, but I’d be lying if I said it didn’t take a toll on me. There are days when I wish I didn’t strain myself driving up and down the ramp to my house or have to deal with my butt getting sore from sitting all day. Then there are days when I’m really glad I get to cut in line to meet Kevin Smith and have people marvel at the sight of my Jaco robotic arm in action.

Living with SMA is an amalgamation of ups and downs. It teaches you to constantly adapt to any scenario and to embrace things as they come.

Now, check out my new office decoration.

living with SMA | SMA News Today | A photo of columnist Kevin Schaefer with writer and filmmaker Kevin Smith sits on a shelf next to a Batman and Green Hornet comic book signed by Smith.

Kevin Smith signed a comic book for me. (Courtesy of Kevin Schaefer)


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.

Comments

Leave a comment

Fill in the required fields to post. Your email address will not be published.