The Cruelty and Complexity of SMA

Kevin Schaefer avatar

by Kevin Schaefer |

Share this article:

Share article via email
Spinraza and patient stories

Kevin Embracing my inner alien

In season five of the FX series “Sons of Anarchy,” main character Jax Teller (Charlie Hunnam) watches his best friend Opie (Ryan Hurst) die in a prison fight. It’s a brutal scene that features some of the show’s defining elements: Shakespearean drama, graphic violence, and the sense of brotherhood that unites the members of the motorcycle club SAMCRO. Plus, Hunnam’s and Hurst’s performances here make this one of the most memorable scenes in the entire series.

I’m an unabashed “Sons” fan. Despite its myriad incoherent subplots and storylines that took the writers forever to conclude, the wildly popular biker drama from creator Kurt Sutter is one of my favorites. For me, at least, something about how the show merged hard-hitting character drama with a world of pulp fiction is what kept me invested in Jax’s story. Sutter and his crew managed to turn a bunch of worthless thugs into an ensemble of compelling characters with arcs, emotions, and a sense of unshakable brotherhood.

That said, when one member of SAMCRO died, the whole gang was shaken.

By now you’re probably wondering why I went with this introduction. About a week before Christmas, I lost a friend who also had SMA. It’s not the first time this has happened, but his death hit me particularly hard.

Carson Berry, whom I interviewed for this site last year, was a lot like me. Rather than wallow in misery, he had a knack for turning his situations and struggles into jokes. A few years ago on New Year’s Eve, he updated his Facebook status to: “New Year’s resolution: learn how to walk.” Then a few months ago, when he was in the hospital and on all kinds of medications, he still had enough wit to post: “Mission SitRep Day doesn’t matter: my surgery to get feeding tube failed today so we wait until Thursday when OR surgeon will slice me open. On the bright side my nurse is really hot.”

I liked Carson and his subversive humor right away. Our families met years ago, and we reconnected on Facebook in 2016. Though we lived in different states and only saw each other in person once in the last few years, we talked multiple times through social media and over the phone. Plus, neither of us ever ran out of wildly offensive memes to share with each other, and we shared an affinity for things like Ron White comedy specials and the Bill Burr Netflix series “F is for Family.” And speaking of “Sons of Anarchy,” Carson loved this Tweet. I tagged Kurt Sutter a few months ago.

What other stories from last year are you still thinking about? Share the link(s) in our forums.

His death came as a shock to me. He had been sick and in and out of the hospital for a few months, but I just expected him to pull through. The last time we talked was about a week and a half before it happened, and I told him things would get better. I’d been in his boat plenty of times before, and I always recovered. It’s how it always went. I’d come down with pneumonia or something similar, check into the hospital and see that my oxygen levels were dangerously low, spend the next few weeks coughing up all kinds of junk, and then eventually bounce back. That’s always been my narrative, and I just assumed it’d be the same for Carson.

Then it happened. Carson died just a few days before his 22nd birthday, and I was reminded of just how cruel and complex SMA can be. Its cruelty reveals itself in times like this, and its complexity stares me in the face every day.

Since I started this column in 2017, one of my underlying goals has been to help people understand that living with SMA is more nuanced than most people think, and that it’s not all misery and hospitalizations. Life with SMA is an amalgamation of beauty, tragedy, frustration, hope, humor, sorrow, pain, joy, routine, adventure, and everything in between. If it hadn’t been for SMA, Carson and I would have never met and been able to bounce disability jokes off one another.

I imagine that if Carson were still here, he wouldn’t want me to wallow in misery over the fact that his life ended so soon. It may have been short, but it was a full life nonetheless. Carson’s wit, humor, and zest for life affected many people, myself included. I will miss him, but I know that the best way to honor his memory is to keep on living. He may be gone, but someone has to keep writing about the lovely intricacies of topics like diarrhea and disability, urology, and the awkwardness of having an attractive nurse handle your catheter.

Rest in peace, brother.


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.


Helen Baldwin avatar

Helen Baldwin

This is perfect, Kevin. Carson is likely plotting some memorable signs for you!


Leave a comment

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