A Letter to Muscular Dystrophy

Dear Muscular Dystrophy,

MDA National Ambassador Amy Shinneman

At times you dazzle me, showing me the heights of human love and kindness, and at other times you take me to the deepest, darkest parts of my soul. I have silently pleaded, please just let this end. I don’t want to do this anymore. I’d like to say that was a one-time thought, but you’ve made it impossible to tell that as a truth.

I want to love you because you are a part of me, but you make it so hard at times. You feel like a best friend when I achieve feats that seem impossible due to my physical weakness, but also you feel like my worst enemy living inside of my body when you fail me, and I’m once again lying on the floor.

You robbed me of big chunks of childhood joy, while I sat in silent envy of my friends, as I watched them effortlessly turn cartwheels, run and jump.

You are stuck to me like glue during the countless hours in waiting rooms, operating rooms, and rehab facilities.

You have no doubt made me a mental champion, stronger than I could ever be without you. If they made trophies for staying mentally strong for 49 years, I think I’d win one.

You’ve been my greatest and toughest teacher.

For so long, I didn’t even know your name. I begged for you to reveal yourself to me, but you made me wait. You taught me patience, even when I didn’t want you to. When you finally introduced yourself to me, it was like I had known you all along.

You’ve easily caused me more pain and tears than anything else in my life. You’ve taken me to the lowest depths of loneliness many, many times, but also like a trusty sidekick, you sat with me in those pits of despair until I pulled myself out.

You’ve introduced me to some of the finest and smartest doctor’s around, if only to frustrate them because they couldn’t “figure you out”. Your elusive ways dumbfounded them.

You are slowly stealing from me things I once could do, and for that I am angry with you, while simultaneously, I’m grateful for ever being able to do those things.

You’ve been a teacher to my children who get a front row seat to your ugliness, as well as your beauty.

You’ve relentlessly stripped me to the core of my confidence, only to later restore it, as I spoke to a crowd of hundreds of people, proudly introducing us together.

You have, most importantly, brought me to a place of ultimate, spiritual connection, as I confidently and assuredly walk my life’s path, and for that, I thank you.

You ignite within me a fight to eradicate you, not just for me, but also for the many others who also know you well. In the same thought, I wonder what life would look like without you. Would I miss you?

You have forced me to walk humbly and courageously day in and day out. I had no choice, but to finally accept you if I wanted to live life to the fullest. I’m glad that we finally got there together. One day, I hope to say goodbye to you in this lifetime, but I do think, “yeah, I’d miss you”, if only to remember the good you have brought to my life.

Love,

Amy