Milestones Are Different With SMA

Kevin Schaefer avatar

by Kevin Schaefer |

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I woke up to a Facebook notification inviting me to a group for my high school reunion. It dawned on me that next year will mark a decade since I graduated. Factor in a pandemic, and it feels more like several decades since I crossed the stage in June 2012.

Between getting this invitation and seeing the new sci-fi noir “Reminiscence,” a movie that explores humanity’s obsession with nostalgia in a world ravaged by the effects of climate change, it got me thinking about the past and where I am now. Many things have changed since I was a teenager rolling through the halls of Enloe High School, while others have remained the same.

In terms of change, I’ve graduated college, established a career in writing and rare disease advocacy, become an uncle, formed lifelong friendships with caregivers, experienced myriad gains and setbacks related to my health, and gained a slick piece of cybernetic equipment. The list goes on.

When it comes to more traditional milestones, I have not moved out of my parents’ house, gotten married, or developed a retirement plan. I remain dependent on government assistance programs to help me manage medical and caregiving expenses, and coordinating with these organizations is often a job by itself — and not a fun one.

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For many people in the SMA community, milestones look different from the standard societal checkmarks. Though I know plenty of people with SMA who have spouses, partners, and kids of their own, and who live independently, others have different lifestyles and goals. Independence isn’t a one-size-fits-all concept, especially when SMA is part of the equation.

Recently, my colleagues Alyssa Silva and Halsey Blocher wrote great collaborative columns about multigenerational living for SMA News Today. Both are adults with jobs and active lifestyles, and they both live with their parents. Alyssa often encounters people who assume this is her only option, as if living independently is impossible for her. In Halsey’s situation, people ask her why she chooses to live with her family, baffled that she doesn’t actively pursue independent living.

Both women’s perspectives highlight the nuances of living with SMA, and their stories illustrate that things like living scenarios are individual matters. There are plenty of people, both with and without disabilities, who choose not to adhere to the more standardized societal expectations. This summer, Forbes reported that while millennials make up a large percentage of today’s homeownership population in the U.S., people in this age group are also buying houses and getting married later in life.

As I consider how my life has evolved since high school, the milestones I’ve met, and the adventures yet to come, I realize that my path is my own. Mine might look different from others my age, and that’s OK. All of us have to carve out our own journeys.

“So make the best of this test,

And don’t ask why,

It’s not a question,

But a lesson learned in time.

It’s something unpredictable,

But in the end it’s right,

I hope you had the time of your life.”

– “Good Riddance (Time of Your Life)” by Green Day

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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

mary beth odonnell avatar

mary beth odonnell

Hi Kevin- I am a mother of an adult with SMA. He, too, hasn't ascribed to the traditional milestones. I often feel as if this is hard for him to accept. however, I've never brought it up to him fearing it may hurt his feelings. I have made the assumption that this must be hard. Your post really helped me see "independence" through a different lens.

I appreciated reading your article and thank you for opening my eyes a bit.

Mary Beth O'Donnell

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