When I was in high school, I followed the written journey of a classmate who was diagnosed with leukemia. Miles Levin struggled to comprehend a senseless battle through the exploration of words. He wore the armor of someone who was too young to fight cancer when he wrote, “Dying is not what scares me; it’s dying having had no impact.”
After a valiant fight, Miles died shortly after graduating from high school, leaving a trail of words behind him. At the time, I had no idea that his story would inspire a chapter of my life. Despite a heartbreaking diagnosis, he found a way to have the impact he desired.
‘Keep Fighting, Stop Struggling’
His thoughts reached far into the future, moving those who outlived him. Years later, Miles’ father compiled his son’s final words and bound them into a book titled “Keep Fighting, Stop Struggling: The Miles Levin Story.”
Miles’ story was the first written journey I followed. I wanted to understand how you could pour your pain into words so you wouldn’t have to carry it around anymore. Nearly 12 years later, I find myself asking the same questions I asked throughout his odyssey. But this time, I’m watching Parkinson’s disease overtake my dad like an evil villain in a Marvel movie.
My childhood hero has Parkinson’s. An invincible father of six meets kryptonite. The man who held my hand when I crossed the street and took me to the ER when I had pneumonia is battling a degenerative disease. And I wonder if whisking sentences together might help us make sense of the senseless.
Exploring illness through words
Today, I write because I love someone who struggles with loss daily. I write because I want to see the world from my dad’s eyes, shaking the illness until pocket change falls out. And I write because I want to understand the tidbits of information that only someone with Parkinson’s can taste.
What does it feel like to shrink? To disappear from your circle of friends? To retire because you no longer want to be seen? What do you think about when you shake yourself awake at night? When it’s 3 in the morning and you can’t fall asleep again because your body won’t let you? Has muscular dystrophy made it harder to smile? Or are the laughs slower in the making? And where do you find hope?
I don’t want to live in the shadows of sadness. But I want to understand life from my dad’s eyes. I want to pick up the sentence where his words end and turn them into a story. I want to bridge the gap between the theoretical and reality, filling in the blanks with my own understanding of what it’s like to feel yourself change. Today, I’m beginning my own journey by tossing words onto a piece of paper in an attempt to find meaning through one man’s journey with Parkinson’s.
Note: Parkinson’s News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Parkinson’s News Today or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to Parkinson’s disease.