Why I write

Aside from a few papers in high school and college and a sporadic journal I kept, writing and I really didn’t have much of a relationship.

I was sitting in a church service one Sunday a few years ago, and my pastor challenged us to do something way outside of our comfort zone – something that could push us further toward our purpose in this life.

I couldn’t think of anything more terrifying than vulnerably sharing my story about my life living with a disability, and what it was like being on a lifelong search for a diagnosis. At the time of this challenge, I was still being referred to as “unidentified” by my doctors, so starting out that’s what many of my blog posts centered around.

Of course, I had no way of knowing that just around the corner were the answers I had waited a lifetime on, and in a sense, a new beginning for me. It was like I was finally released to be the person I was always meant to be. The curtain was finally pulled back, allowing me to see and understand so much about myself.

It was a physical as well as an emotional release when I finally heard the words I had been longing to hear my whole life. “Your genetic test results revealed you have a condition called “Bethlem Myopathy.” I stood in the bathroom of a local coffee shop of all places to take in this news. Not exactly how I always envisioned it going down. I had never heard of Bethlem Myopathy, let alone knew anything about it. But yet, I already knew everything about it because it was with me from the beginning. A strange feeling.

As I kept writing, I found that the more I opened up, the more I started to understand about my life. Recounting times from the past, helped me to walk through those times again. I was able to process all those emotions through a different lens. Writing about these life experiences was serving the purpose I had of wanting to reach others who were feeling alone on their path with a disability, while also healing my past wounds.

In time, I began to see a change in myself, and others around me began to see it as well. I became open in a way that I never was before. Bitterness and anger slowly transformed into acceptance and joy. Where only darkness was for so long, a light began to glow. Over time, the light has become brighter. My inner thoughts have become much more positive.

There were many things that deep down I knew were true, but I didn’t really believe those truths until I started writing about them. The more I wrote about these truths, the more I felt them.

Writing continues to open doors for me that allow me to serve my community and help others. While I never envisioned myself as a “writer” here I am. Sometimes our joys in life sneak up on us and take us by surprise. Be ready!

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.