The last two years I have poured my heart and soul into serving as the National Ambassador for the Muscular Dystrophy Association. I have had my life shaped in great ways on many different occasions. Aside from the birth of my two boys and raising them, no other single experience has changed my life in such a positive way as that role did.
Public speaking and vulnerably sharing my story about my lifelong journey as a disabled person used to be two things that used to caused me great anxiety. My role as the National Ambassador was full of moments like that, and guess what? I learned to face my fears, and the more I did those things, the more I realized that by facing the things that caused me the most fear and anxiety, I was changed for the better.
I learned that standing up and speaking, sharing my story as someone living with a rare form of Muscular Dystrophy, it really wasn’t about me just getting through the speech, or writing the blog post. It was about who I was helping by doing those things.
I lived the first 44 years of my life searching for a reason for my weak muscles and difficulty walking. Searching for answers, wanting a diagnosis instead of being referred to in the medical world as “unidentified.” All I wanted was to find someone in the world who understood me on the level of understanding I was desperately seeking. I just wanted that one person who could say, “I get it.” To fill that gaping hole of loneliness I felt from being so physically different from those around me.
I had a very loving and supportive family, and wonderful friends. But still, I needed someone who was just like me. So, when I was finally diagnosed with Muscular Dystrophy five years ago, I immediately set out on a mission. That mission was to find those feeling that same loneliness and meet them where they were, and tell them, “I get you.” To be the person for someone else that I always longed for.
I have been overwhelmed with those reaching out and thanking me for being so open and vulnerable to help others. It is not always easy sharing some of those difficult memories of what life has been like living with a disability, but I have seen firsthand what a difference that can make. I have heard from parents of children who are disabled, young women and men, and many people around my age who are also living with a disability who have become great friends.
As I transition out of the role of National Ambassador, I am excited for this new opportunity to share my story on a different level. I hope to continue to raise awareness for those living with disabilities while sharing some past and present ups and downs of what life is like from my view. I grew up in Noblesville, so being able to share this with the community I was raised in is an honor for me. 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.