Some of us walk through life unaware that the sword of Damocles is hanging over our heads. Some are aware of it and decide to just keep walking. Some of us even say “Well, given the large sword hanging over my head that could drop down on my skull at any moment, I might as well go climb Mount Everest while I have time.”

Alex Flynn is gone, and suddenly, I’m terrified.

Alex wasn’t an intimate friend–he was a close friend of many friends of mine, he was someone I admired, and if I’m honest, he was someone I found a little intimidating. But he was one of my Parkinson’s brothers, and a force of nature; the kind of person who just seemed like nothing would ever stop him. 

No matter how hard I train or what perfect “new” diet or healthy habits I develop, the horsemen of my own apocalypse are on the horizon. They are smirking as I try a new supplement or medication. They chuckle to themselves as I literally have my head cut open and electrodes inserted into the center of my brain. (Spoiler: so far, nothing about this procedure has made my life easier or better; if you’re considering it and you want some straight talk, you know where to find me.) Alex Flynn once told me that a stranger had told him to “drink bleach and die,” because they were tired of seeing his face, and why did he have to make such a big deal about having Parkinson’s anyway? 

They say Parkinson’s doesn’t kill you–directly. It just takes out motor functions one by one until you die–technically–from some especially non-negotiable muscle signing out (or from drinking bleach so people don’t have to put up with you, I guess). The myocardium. The diaphragm. Riddle me this: if you’re in an ambulance on the way to ER with a heart attack, and the ambulance crashes in a fiery blaze, did you die of a heart attack or a car crash? A question for the philosophers. I stand in the arena with people from all over the world and watch Parkinson’s destroy titans among us. Those horses are patient; they wait for our most vulnerable moments. I can hear their hooves pounding with increasing speed every second of every day and night. 

So you’ll have to forgive me if I seem preoccupied and selfish, or impatient and unreasonably protective of my time. It’s true: we all die. In the last 18 months I cannot tell you how many people have blown my mind with their late-onset realization of this, as they clutch at their N95 masks and chide their neighbors for having the temerity to entertain house guests, or clutch their pearls because “the teachers didn’t sign up for” possibly contagious children in their classrooms. (Yes, they explicitly did. That is the job.)

So yeah: why did Alex make such a big deal about Parkinson’s? Why do any of us? I don’t speak for Alex Flynn–he did a laudable job of that on his own–but I’d like to suggest that we might be doing it because we are tired of being invisible, tired of being told we’re tiresome, tired of being dismissed as crazy, drunk, flaky, disappointing, difficult and hypochondriacal because we’re bitching about an “old people” disease that “doesn’t kill you.” It does. And it can hit anyone, at any age. So I’d like to counter that question with another question, Socrates-style. What is wrong with us as a species, as a society, that anyone would even ask that question, with or without the cheery exhortation to “drink bleach?” Our lives are precious and fleeting. Some of us get that already, and the rest will, sadly, catch up all too soon. A young, vigorous man just lost his life while on his way to become the first person with Parkinson’s to scale Mount Everest. I can’t think of anything more symbolically freighted. Death has no meaning other than the meaning we assign to it, so can we just link arms and agree that one takeaway might be that we all need to acknowledge that summit we’re trying to reach and that the gods will swat down every single one of us in the attempt? And maybe leverage that awareness to live a little more fully? A little more compassionately? With a little more laughing and a little less eye-rolling? 

Alex Flynn leaves behind a legacy of advocacy for exactly that, as well as a grieving family and friend-circle, and a gaping silence that no one else will ever fill. That’s all I’ve got, other than questions. 

In the immortal last words of Socrates…. “I drank what?”

Heather Kennedy (aka Kathleen Kiddo) is a current WPC Parkinson Ambassador. She presented at the 5th World Parkinson Congress and has served as a WPC Blogger Partner. She is a motivational speaker, writer, visual artist, and mother of two. After many years of misdiagnosis and a disorienting amount of chaos, she was finally diagnosed with Parkinson’s in 2012. She has been interviewed by Michaela Pereira on the on the Los Angeles-based HLN/CNN network show MichaeLA and starred in several Parkinson’s videos which she co-produced with Anders M. Leines, including “Dating With Parkinson’s” and “Anger.”

Ideas and opinions expressed in this post reflect that of the author solely. They do not reflect the opinions or positions of the World Parkinson Coalition®