This is going to be a tough truth to admit, mostly because I’m still a little embarrassed by it all these years later. But, here we go.
When I was originally offered this role as a columnist for BioNews — the company that publishes this website — I turned it down. Well, I didn’t necessarily turn it down in writing. I boldly left an email on read and never answered, which, in my personal and professional opinion, is much worse. Dear reader, I am actually cringing while writing these words to you.
I was thinking about this the other day when my coworkers congratulated me on my third anniversary with the company. My time here has been nothing short of a rewarding journey in many ways. To think I almost let this opportunity escape … that stopped me dead in my wheelchair’s tracks.
The idea of being a writer was just as intriguing as it was honorable. But, I placed the blame on busyness. There wasn’t any way I’d be able to take on another role and manage my care. There simply wasn’t enough time.
(Apart from cringing, I am also laughing right now. I have at least triple the amount of work today than I did back then. And I am managing just fine.)
However, looking back and reflecting on this time, I can say it wasn’t a matter of busyness. That was simply an excuse to mask what was going on beneath the surface: fear. Until then, I had only shared my writings on my blog. It was a safe space for me. I could hide in my little corner of the internet and have some Facebook friends read my thoughts.
With a company like BioNews, I feared my story wouldn’t measure up on such an impressive platform. However, months later, I received another email from the late, and brilliant, Serena Lawrence with the same opportunity. The email came during a challenging time for me. I was in and out of the hospital with mysterious health issues, fighting anxiety and depression for the first time, working part-time, and planning a huge gala fundraiser for my nonprofit organization.
Life was chaotic, but I couldn’t ignore the fact I was given a second chance. Honored to have been considered (twice) for a position that I only ever dreamed about, I decided to take a leap of faith in hopes someone, somewhere, would read my words. So, on July 7, 2017, I dropped my fear and accepted my new role as a columnist for SMA News Today.
Knowing what I know today, I would have never ignored the first opportunity to work for BioNews. I would have never mulled it over or fearfully made an excuse. I would have, without hesitation, accepted. Alas, life doesn’t work that way, but there’s a critical lesson I learned in the process, which is why I’m sharing this story today.
Stories matter, no matter how insignificant or unimportant they are perceived to be. Life with a disability is isolating at times. Navigating uncharted waters can feel intimidating. Experiencing fears and trepidations that come with having unique needs can often feel despairing. Managing one’s physical and mental health while trying to maintain a steady balance between the two can feel daunting. The list goes on.
In getting more vulnerable with the world and admiring others who do the same, I now understand how stories play a pivotal role in our lives. It’s the thread that weaves us together to create a community. It’s the moment when loneliness and all its emotional baggage are replaced with belonging and acceptance.
This revelation came from an opportunity I thought would simply be “just a job.” Through the words I wrote and read across BioNews, I began to feel less alone. I connected with a community that shared my trials and triumphs where diagnoses were the common thread. And I realized no story was too insignificant to exemplify the power words hold.
I am forever indebted to this company that feels more like a community, its loyal readers, and the people who have inspired me to share my story. Storytelling is what changes the world, and I hope someday you’ll set your fears aside and share yours, too.
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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