Living with SMA makes life transitions look different

One of my favorite comfort shows is the CBS sitcom “How I Met Your Mother.” Centered around the romantic quest of Ted Mosby, who as his older self recounts to his kids the story of him meeting their mother, the series is also an ode to lifelong friendships. Surrounding Ted are his best friends, Marshall, Lily, Barney, and Robin. The miscellaneous adventures of this ragtag group are prominent throughout all nine seasons of the show.

Most of the time, the characters live in close proximity to each other and hang out every night at the same pub in New York City. Yet as the story evolves and they get older, life transitions occur, and the group dynamics change. Marshall and Lily become parents, Robin advances her career as a broadcast journalist, and Ted has multiple ups and downs in his relationships before eventually meeting the woman in the show’s title. And Barney, while known for his playboy shenanigans, also undergoes an emotional arc that becomes an essential component of the show’s overarching narrative.

“How I Met Your Mother” resonates with me in new ways every time I watch it. I love the humor, but equally relatable are the emotional and dramatic beats. As an adult living with SMA, I’ve felt all of the highs and lows that the characters in the show go through. I’ve experienced the joy of having lifelong friends, the heartbreak of losing loved ones, the successes of career milestones, and the uncertainty that comes with life transitions.

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Recently, I FaceTimed with one of my best friends since college, who now lives in another state. Her big news is that she’s expecting her first child later this year. I joked that my biggest news right now is that I have a skin wound near my waist that’s almost fully healed. Plus, the new Superman movie is less than two months away.

Joking aside, conversations like this make me think about the ways that my life is similar and vastly different from others. Over the past decade, I’ve seen friends get married, have kids, move away, and pursue amazing career opportunities. Likewise, I’ve become an uncle to three rambunctious and lovable kiddos, found fulfillment in a rewarding career, traveled across the country, and formed relationships with people in disability communities across the world. I’ve also used my disability card to cut in lines at pop culture conventions to meet celebrities.

My life is an abundance of highs and blessings, but the transitions and independence aspects look different for me than they do for friends outside of the SMA community. Whereas many of my high school and college friends are focused on having kids, buying houses, and saving for the future, my priorities revolve around finding caregivers, managing my SMA and other health conditions, and navigating the complexities of our healthcare system. I define independence on my own terms, and I prioritize my well-being over meeting milestones that society dictates.

I don’t deny that I might be in a very different place if I didn’t have SMA, but I can’t say with certainty that I would be better off. Living with my disability has not only informed my perspective on things, it’s also brought me to an amazing community and some of the most fulfilling relationships I’ll ever have. All of us say that it’s a club none of us volunteered for, but it’s one we can’t imagine our lives without.

Through every transition and uncertainty, I’m grateful to have friends and family both within and outside of the SMA community by my side. That kind of support is, like Barney Stinson likes to say, “legen — wait for it — dary.”

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.