Your SMA mission, should you choose to accept it

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by Kevin Schaefer |

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In the “Mission: Impossible” franchise, each movie starts with Tom Cruise’s character, Ethan Hunt, opening an encrypted message that outlines his next assignment. As an agent for the Impossible Mission Force (IMF), Hunt uses his unique skills to take down global threats that are too much to handle for other organizations. Before the messaging device self-destructs, it contains the phrase, “Your mission, should you choose to accept it.”

Hunt’s missions range from going rogue after his agency is framed for a terrorist attack to preventing an artificial intelligence weapon from falling into the wrong hands. No matter the stakes, he jumps from skyscrapers, hijacks vehicles, and even rides a motorcycle off a cliff to then jump on a moving train.

It may sound crazy, but sometimes living with SMA can mirror the adrenaline of Hunt’s adventures. While it may lack the spectacle, the other elements are strikingly similar.

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Accepting the mission

I’m not a big fan of calling people with SMA “warriors” or “heroes,” simply because the act of living with a disability is no more inspiring than a nondisabled person living their life. We don’t need reverence or pity for merely having a neuromuscular condition that others don’t.

On the flip side, there are numerous mission opportunities for disabled people. We can live our lives in solitude or engage with the world to make it a better place for us. For the SMA community, that can mean opposing ableist institutions, advocating for accessibility in public spaces, and raising awareness and funds for medical research. In these scenarios, we do have a choice to sit back or do something.

Building a team

While Ethan Hunt is the face of the “Mission: Impossible” franchise, he wouldn’t survive without the other members of his IMF team. They’re his right-hand man, Luther (Ving Rhames), the tech-savvy Benji (Simon Pegg), and the expert assassin Ilsa (Rebecca Ferguson).

Likewise, living with SMA requires constant support from other people. I rely on caregivers for basic physical needs, and friends, family, and my healthcare providers for mental and emotional support. My independence and well-being hinge on my version of an IMF team.

The villains

The third “Mission: Impossible” installment features my favorite nemesis of the series, the cunning and ruthless arms dealer Owen Davian (Philip Seymour Hoffman). Through his ability to outsmart and manipulate his enemies, Owen poses a genuine threat to Hunt and his team.

I equate managing SMA-related obstacles to an ongoing chess match. No matter how hard I try to stay on top, my rivals remain one step ahead of me. I may not battle international fugitives, but my antagonists come in the form of insurance hassles, bouts of fatigue, and chronic pain. Like Davian, each is a formidable opponent. There are times when these foes come close to crushing me, but somehow I manage to snag a third-act victory lap.

My life with SMA is simultaneously a roller coaster, a comedy, and a blockbuster action movie. Yet no matter the weight I often feel or the scope of my challenges, like Ethan Hunt, I can still defy the odds. Plus, I can pull off some impressive stunts with my arsenal of medical equipment.


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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