Looking Back and Looking Forward

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by Kevin Schaefer |

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moving on

Kevin Embracing my inner alien

This week, my Facebook news feed was filled with graduation pics, friends posting sentimental messages about the times they had in college, and of course, even sappier posts from their parents. Then, if friends aren’t graduating, they’re getting married, starting new jobs, or moving away from my small town in North Carolina.

One of my best friends since middle school is moving to the West Coast in September for work, two of my close friends from college will get married in a couple weeks, my cousin will get married in September, my brother is in a serious relationship, and I barely see some friends because of work schedules. Meanwhile, I’m here writing articles in the same house I’ve lived in since I was a child and listening to the “Hamilton” soundtrack on repeat.

Naturally, seeing so many people I know transition to new chapters in their lives has left me with an overwhelming sense of nostalgia. I try not to dwell too much on the past, but sometimes that feeling is inescapable when I have time to think and scroll through social media on a quiet Saturday night.

I still love my job and where I am in life right now, but nevertheless, there are days when nostalgia, envy, and anxiety simultaneously pierce me in the gut. No matter how good my life is or how many things I have to be thankful for, I can’t deny that having SMA affects me mentally. It’s a topic that’s come up on various columns in SMA News Today before, and it’s one that’s different from patient to patient. (Check out this forum discussion on SMA’s effects on mental health.)

Will I ever live independently? Will I ever find that special someone? Wouldn’t it be nice to turn the clock back to a simpler time when adult issues didn’t matter? These are the questions that often occupy my mind when it has the time to wander.

The other day, I found myself flipping through a journal that my high school drama teachers gave to me when I graduated. Little did I know then just how important this little black book would be to me in the next few years. I wrote in it often during my early college years, filling it with various musings, and in some cases, heavily emotional experiences. I recorded crushes I had on girls, awkward and embarrassing encounters with said girls, and all of the thoughts and emotions in between.

Today, I no longer have the ability to handwrite as a result of my SMA’s progression. It’s one of the abilities I miss the most, as there’s nothing quite as intimate and rewarding as putting a thought down on a page. I spent many nights and afternoons in my teens and early 20s recording my thoughts on paper, writing stories and outlines, and drawing terribly amateur storyboards and sketches. Looking back, these journal and creative writing sessions were more than just a time for me to reflect and vent; each one provided a dose of emotional, mental, and spiritual growth.

I continue to write about my day-to-day life and all of the complexities and emotions that come with having SMA — only now I get paid to do it. It’s funny how life plays out.

There are certainly days when I long for the past. Back when I had more abilities and the faces of cherished friends from high school and college were all around me. I miss those times.

Yet for every time I experience those feelings of loneliness and anxiety about my future, those emotions are beautifully juxtaposed with waves of joy and hope. For every lonely night when it seems like everyone I know is either too busy or too far away, the next is spent with a best friend who’s still around and there to talk to. Life is as crazy and unpredictable as it is wonderful, and I wouldn’t have it any other way.

This feeling will pass.
This workload will pass.
These people will pass.
But look at you, with the gift of memory.
You can time travel to the good stuff just by closing your eyes and breathing.
Then come right back to now, eyes up for the good stuff ahead.
You magic thing.”
-Lin-Manuel Miranda


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.


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