How Having SMA Friends Has Helped Me

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by Kevin Schaefer |

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(Courtesy of Kevin Schaefer)

Kevin Embracing my inner alien

Growing up, I only had a handful of friends with SMA. As a result of my desire to be “normal,” I didn’t show much interest in engaging in any kind of disability community. Aside from participating in the annual Muscular Dystrophy Association (MDA) Muscle Walk fundraiser with my family, connecting with other SMA individuals wasn’t exactly on my radar.

My attitude toward this subject has no doubt changed as an adult, and I’m grateful to have so many relationships with people in the SMA community. Through my trials, tribulations, and discoveries, I’ve learned the importance of having friends and mentors who “get” the challenges I face every day.

While a sophomore in college, I was going through a difficult time, emotionally and mentally. School was fine and I had good friendships through the student newspaper and a student ministry I was involved in, but I was struggling in my personal life. This was before I had certified nursing assistants (CNAs), and the role of full-time caregiver was becoming overwhelming for my parents.

I bore no resentment toward my parents for feeling overwhelmed and often exhausted, but nevertheless, we all felt trapped. I had been denied in the past by government organizations for caregiving services, and we simply didn’t know how to start that process or who to turn to.

It would still be a few months before we finally got the help we needed and started hiring CNAs, but during that period of bitter frustration and downright suffering, one of the people who helped me the most was my friend, Jonathan Greeson. A fellow writer, comics enthusiast, and SMA person whom I admired, I began asking him for advice about all the chaos and confusion in my life.

Jonathan and I met years ago through the North Carolina Electric Wheelchair Hockey Association, an organization he founded. We’d kept in touch on Facebook over the years, but it wasn’t until I went through an emotionally difficult time that I sought him out for counsel.

I messaged him about my situation at home, frustrations regarding my deteriorating arm strength, and social anxieties I had about things like dating and how it tied to my SMA. He immediately replied with sincere, understanding words. With him, there was no need to explain myself as he knew exactly what I was going through. As we talked openly about things that I wasn’t comfortable sharing with other friends, I came to realize just how therapeutic these conversations were.

Between our talks and reading his book and blog posts, I began to acquire more confidence in my everyday life. Just knowing that there are other people out there who go through the same things as you makes a world of difference.

Today, I have many friends in the SMA community, and every person I meet at conferences and other events brings with them a unique perspective. So, as I think about my angsty teenage self and attempts to distance myself from other SMA individuals, I’m grateful that side of me changed. Now, the more people in wheelchairs I meet, the more I feel ready to roll.

If you can come up with a cornier joke than that, let me know.


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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