Why I’m taking Gandalf’s advice as I’m turning 30

Embracing the good days and bad as I experience each season with SMA

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by Kevin Schaefer |

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“I wish the ring had never come to me. I wish none of this had happened.”

Frodo says this to Gandalf in “The Lord of the Rings: The Fellowship of the Ring.” He laments that his journey is filled with peril and despair, and he wishes to go home to the Shire. Surely someone stronger and more skilled than him could carry the ring of power to Mordor. Gandalf wisely tells the distraught hobbit that many others share his woes, but that “all we have to decide is what to do with the time that is given to us.”

Like Frodo, I’ve often wondered about the cards the universe has dealt me.

This time last year, I was in a hospital, coughing up large chunks of phlegm and too fatigued to respond to messages on my phone from concerned family members and friends. About a week and a half ago, I was on Capitol Hill in Washington, D.C., to advocate alongside other colleagues from the Cure SMA community. I explored the city with some of my closest friends, and the food we enjoyed was a step above the hospital cafeteria meals I’d eaten a year earlier.

The dichotomy of these scenarios is a good representation of how my life has played out so far. I’ll turn 30 this week. If there’s anything I’ve learned over the past three decades, it’s to embrace the full spectrum of life with SMA.

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Life’s ups and downs

For most of my childhood, I lived just like any other kid. I dealt with prolonged illnesses and broken bones, and I always had an adult aide with me at school. But I didn’t feel like an outsider. Since I never knew anything other than being a wheelchair user, SMA was simply a normal part of my identity.

My sophomore year of high school presented new challenges. I still remember the time I struggled to feed myself in the cafeteria because my arm strength had started to decline. Gradually losing this ability became one of my biggest frustrations, and it made me assess my relationship with my disability. I knew then that things would get harder, and they did.

In the years since, I’ve experienced more physical decline, struggled mentally and emotionally, and wrestled with my independence goals. At times I’ve let internalized ableism tell me I’m a burden to my loved ones and to society. And more insurmountable than anything else, I’ve felt the pain of losing disabled friends too many times.

But again, my life is an amalgamation of highs and lows. The positives for me outweigh the negatives, and I have too many to list here.

Some highlights include traveling across the country, skipping lines at pop culture conventions to meet celebrities, putting on a reading of a play I wrote, and seeing “Hamilton” on Broadway. I’ve danced at weddings, gone to a concert on New Year’s Eve, seen more movies in theaters than most people, and met some of my favorite writers at book signings. I graduated from college and I’ve been working full-time for the past six years.

Oh, and I almost got in trouble for public indecency at a pool in Disneyland.

If I could tell my younger self anything, it’d be to embrace each season, both good and bad. Have adventures, focus on relationships, and don’t worry about things you can’t control.

As I enter a new decade of life, I have no idea what triumphs, trials, or transitions await me. All I know is that I’ll take Gandalf’s advice and use every bit of the time I have.

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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