One in A Million
This is dedicated to Steve Perko who was truly one in a million, gone but never forgotten.
Having an incurable disease has very few upsides, better parking and the ability to shame obnoxious strangers in a public setting are the two that come to mind. Other than that, it is a battle to remain who we were before diagnoses, our fight is to remain ordinary. But in truth, we will never be ordinary again, that ship has sailed.
After returning from the most recent “Movement Fair”, I took some time to think about what I had witnessed. This year’s theme was Parkinson’s superheroes and right off the bat I was handed a superhero cape to wear, that was not going happen, I felt silly. I know that sounds weird coming from “The Mouth”, but I am little more complicated than you might think. Moving on, I thought back to all I had heard, Jimmy Choi’s speech was inspiring and his physical strength is amazing, he is truly a testament to hard work. But the most inspiring moment came when a gentleman in the front row took to the stage at the very end of the program. With a severe tremor and his voice effected by Parkinson’s, he spoke. I will be honest, I did not understand a word he said, but what I saw was inspiring. He was motivated and proud, he was stronger than Jimmy Choi, he is who I aspire to be.
Parkinson’s is like the “is the glass half empty or half full?” question. But our question is, “is our life over or just beginning?” Do we look at each day as an opportunity for success or do we fall short because we are afraid of our future. Do we have the courage to stand on that stage or do we hide from the light? I remember shortly after my diagnoses telling friends that I was depressed because I could now see my future and it was Parkinson’s disease, and in my mind my life was over, my glass was half empty. I no longer felt I deserved to be happy, because I had a disease, I was no longer ordinary.
Clark Kent was the mild manner reporter from The Daily Planet, who underneath his ordinary exterior was the extraordinary Superman, the man of steel. He can do it all with little effort and nobody knows who he is. I thought how can we be called superheroes when our struggles can be so public, and even simple tasks are challenging. I would like to see Superman change clothes in a phone booth with Parkinson’s, they would still be looking Lois Lane and Jimmy Olson, we live in a tough neighborhood.
The truth is we are extraordinary, the feats we perform may seem simple to those outside our world, but to those within, they are amazing. From a simple smile to heart felt laugh, and all points in between, our battle to live a “normal” life is inspiring to those who share in our journey. We bring joy to those within our family, and grieve when one is lost. We live another day because we can, and we hope and pray the others will not follow, we truly are extraordinary.
Going back to the gentleman on the stage, as he spoke it came to me, those capes were not some kind goof, they were a celebration of courage. Courage to get on that stage and speak, courage to compete on American Ninja Warrior, courage to laugh, courage to cry, courage to try, and courage to die fighting. That’s what we superheroes do.
written by Mark Hitechew