Exciting news! There is a place in society for people like me! We may walk a little differently, at times move less fluidly, or maybe even develop speech patterns that are hard for the listener to follow. The marketplace prefers not to engage our non-conformity, but those are the rules of the sandbox. Just another obstacle with which to contend. It serves as even more motivation to tell our story in a way that humanizes our plight, not in search of pity, but for understanding why this is a battle worthy of our efforts.
The Greatest Showman
It’s one of my favorites; a great movie, in my opinion, one of the few I sat through to the end and one of the handful that I own earning a spot next to American Sniper and Lord of the Rings.
It’s message; misfits can find a place to belong. The movie tells the story of the visionary P. T. Barnum who saw something of value in those his society didn’t embrace. Both the celebrated and commoner alike considered them to be freaks and oddities, pushing them into the shadows. P. T. befriended, and at times exploited, their uniqueness, drawing them out of the darkness giving them a place in the limelight.
Blind Sided
Not all days are good days. It’s essential that the reader understands that there are times an integral part of the story must be told in its correct and unvarnished form even when the nerves are raw. In reality, all things warm and fuzzy fill very few days, and a pom-pom waving cheerleader cannot soothe every emotion that accompanies a denigration of one’s health. I can assure you that there are no pleated skirts in my closet.
Parkinson’s progresses in a non-linear fashion with changes in symptoms seemingly coming out of nowhere, along with each comes uncertainty and confusion. Subtle nuances feel like seismic shifts, as muscles tighten making walking problematic, tremors return relegating the clean shirt to a fond memory, or the efficacy of a successful treatment plan suddenly goes south. Each serves as a reminder that the disease is taking greater control of one’s own body.
These shifts have consequences, both economically and socially. In my case, the idea that something would come along and jeopardize my ability to maintain an active lifestyle or interfere the advancement of my career, extending it beyond my late 50’s never hit the radar. In the years preceding my diagnosis, there was nothing in my playbook to prepare me for something like this. Assuring my lovely wife that a walker can be repurposed as an extra closet rod to hang my dress shirts, or double serve as a portable potting bench to grow my pharmaceuticals, assuming the state legalizes it for medicinal purposes was never a conversation that I thought I would have.
Hope in Progress
We have hope, buoyed by advances in research in understanding the disease and progress made in treatment plans. New drugs are in the pipeline and coming to market that may provide relief to many and hope for all. Some would go so far as saying that it’s a great time to have PD and a cure is around the corner. But hope is still an emotion, and relying on feelings alone to carry the day can be as fickle as relying on the wind to take us to our destination.
Strength in Optimism
We are not alone in our struggle and do not need to be ill-equipped to fight this battle. Many of us have banded together, supporting each other, in the only way we know how by focusing on the positive and sharing in each other’s victories, no matter how small. In many ways, we see ourselves as misfits, now much different from who we once were, impaired in some respects, but much stronger, more resilient and insightful in others. This fight is our fight; we must be willing to use every weapon at our disposal if we expect to make a difference. Some days we miss the mark, but with tomorrow, we get the chance to redeem ourselves from how we falter today.
Fight we Must
We fight this fight because we must; this battle came to us. We will win because we can with the help of those that walk by our side and at times, in our place. For every misfit, there is someone who has been there, shining a light, illuminating the path on a dark and mysterious journey.
If you are interested in sharing your story, Contact me. I look forward to sharing yours and connecting it with those engaged in this battle. Welcome to the front lines.
Ivy will be sitting this one out. She has found peace; sleeping on the couch laying on her back with all four’s in the air. Sometimes I forget she’s not just my sidekick, she’s a dog!
Thanks for reading, liking, and sharing,
Al and his faithful, but rested sidekick, Ivy the wonder pup.