My house was about four blocks from my elementary school. Walking to school was a challenge that no one around me really understood. My small, weak legs made that trek twice a day, most days.
My mom was a second-grade teacher at my school, and she would leave early for work, and my sister and I would walk to school when it was time for us to go. Remember latchkey kids? I wanted to walk to school because it’s what my peers were doing.
Often along the way, I would get left behind because I walked so slow. Other school kids would join the trail of walkers along the way. It was not that people who walked with me were mean, it is just what happens when you walk that slow. It still happens to me. People get busy talking, and I am left behind. The worst part is when those walking ahead suddenly realize it. I brace myself for their embarrassment when they turn around. They feel bad, and I do not want them to. The way I felt when I would see everyone far ahead of me was like I was in a long dark tunnel with no end in sight.
On block two of my walk to school, a kind boy from my class would often wait on his porch for me to come by. He would walk the rest of the way to school with me. Seeing him gave me the boost of strength I needed to make it the rest of the way to school.
It brings tears to my eyes to think of his kindness at such a young age. He noticed my struggle and met me there. He didn’t skip a beat falling in step with me, talking about whatever was on his mind that day. I am sure he is just as kind today as he was back then. He will never know the balm he was for my soul. He was a light at the end of the long, dark tunnel.
Recently, my oldest son Luke, a biomedical engineering major at Purdue University, reached out and what he wanted to talk about took me by surprise. He has gotten extremely interested in researching and studying my type of Muscular Dystrophy, Bethlem Myopathy. The knowledge he has gained in a short amount of time is astounding. He has been able to explain my disease to me in a way that no doctor ever has in my 50 years. I now can picture how this is all taking place inside my body. A balm to my weary soul.
By him explaining this to me, it not only made sense, but it also allowed me to let go of some of the self-blame I still carried with me. He told me the actual scientific reason why my muscles cannot grow and why they are slowly becoming weaker.
When I asked him why he decided to research this, he said, “Trying to cure Bethlem Myopathy wasn’t a part of how I saw your disease until you were diagnosed at age 44, or age 15 for me. Before your diagnosis, I just noticed the pride you had in Jack and me when we happily pushed your wheelchair at the zoo, walked with you to the bus stop on the first day of school, and climbed up onto the counter as kids to make it easier for you to hold us. As I got older, I noticed people get too caught up in the details and outside agendas of this world. We tend to lose human connections that can be transformative in discovering new solutions. I see a lot of potential in a world that guides us to use our lives to change the lives of the people we care about most.”
I agree. Using our lives to help others is what life is all about. Even a small gesture like the boy waiting for me on the porch obviously can have a huge impact on someone’s life.
I have been writing this column for a year now. What a balm to my soul it has been. What an absolute honor to write for my hometown newspaper. I am so grateful they created a weekly spot for a disabled writer, allowing me to share my perspective. I hope that those who have read my column have learned something about disabilities, and that you have noticed that disabled people are not so different. We sometimes just need different adaptations to be able to function well. Guess what? Writing this column has helped me to better understand that, too.
Until next time …
Amy Shinneman is a former National Ambassador for the Muscular Dystrophy Association, disability blogger, wife, and mom of two boys. You can find her blog at humblycourageous.com and reach her on Instagram @ashinneman.
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