Riding the Roller Coaster of Being a 20-something With SMA

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by Kevin Schaefer |

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In the film “Licorice Pizza,” 20-something protagonist Alana (Alana Haim) leaps from one adventure to the next in the eccentric atmosphere of 1970s Southern California. She meets the smooth-talking teenage actor Gary (Cooper Hoffman), who’s immediately smitten with her. Together, they start a business, encounter a cast of characters ranging from a loose cannon movie producer to a charismatic politician, and along the way they discover truths about themselves and each other.

Whereas most coming-of-age stories focus on adolescents trying to navigate things like high school and acne breakouts, “Licorice Pizza” flips the script by focusing on a woman in her 20s who has no idea what she wants to do with her life. When the film starts, Alana works a job she hates, lives with her parents and two older sisters, and is desperately hoping for something or someone to sweep her away to a new life. Her relatability draws viewers in, as does Haim’s stellar performance.

As a young adult with SMA approaching the end of my 20s, Alana’s story rings true in many ways. On one hand, I’m fortunate to have both a career I enjoy and creative endeavors outside of my main job, vibrant communities I’m a part of, and loving friends and family. On the flip side, there are days when I feel like I know next to nothing about adulthood. I’m too right-brained to handle financial matters, and I laugh at my 5-year-old niece’s fart jokes. And even though strangers ask me about it regularly, I still don’t have a driver’s license.

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Add SMA into the equation, and adulthood becomes a never-ending carousel of chaos, where the goal is to not fall off the mechanical horse in the middle of the ride. On your left is a laundry list of MyChart messages to respond to and medical appointments to schedule. To your right, an insurance company looks at you with a fresh stack of denials for adaptive equipment that you need to function. In front of you is the lingering anxiety that comes with trying to find and manage a reliable team of caregivers.

I guess it’s more like a roller coaster.

I’ve written before about how independence means something different to each person in the SMA community. Some prefer multigenerational living, while others do well living on their own. No matter the situation, it’s easy to feel impostor syndrome when it comes to independence and success, something my colleague Brianna Albers wrote about recently. Thoughts of envy and even guilt can keep us awake at night.

During this year’s Cure SMA conference, I met a motivational speaker and successful author with SMA. He’s happily married with kids, and his résumé would impress even the most seasoned entrepreneurs. My initial impression was, “Here’s a guy who has it all figured out.”

And yet even the most motivated and ambitious people in this community still need to rely on others for support. About a week ago, this author called me, and we ended up talking for an hour. As I learned about his story, several things stuck out to me. For one, he didn’t go to college and went through a period of depression before he entered the workforce. This contradicted my assumptions that he was some kind of superhuman who popped out of the womb with dreams of changing the world.

Second, and even more mind-boggling, this guy came to me for caregiving advice. Me? I thought to myself, “Dude, I live with my parents and have Funko Pop figures of the original X-Men displayed on top of my refrigerator.” True, I’ve advised younger people with SMA about college and work life, but I couldn’t fathom helping a bestselling author 15 years my senior.

Even with our different stages in life, we were able to help and support each other. The ties that bind those of us in the SMA community go well beyond circumstances and financial statuses.

In an interview with The Independent, Haim discussed the connection she felt with her “Licorice Pizza” character. She said, “When I think about Alana Kane, she’s in the same situation. She wants to succeed. She wants to do something. She wants to figure out her life, desperately. But none of the puzzle pieces are falling into the right place.”

None of us really have “everything figured out,” no matter what we tell ourselves. To me, that’s part of the thrill of living with SMA, and I’m here for the ride.

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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