After four years of observing Maggie May, I conclude that her dog brain only thinks about three things: food, sleep, and squirrels.
But I don’t need to tell you that the human brain is a fine machine– from its complex design to its cognitive functions, emotional regulation, and creative flair, to it’s uncanny ability to mange and address every thought that scurries about, to its audacity to consciously decide to hit the snooze button and go back to sleep.
Even though our brains can accomplish marvelous things, like any machine, they can also unexpectedly break down. Parts wear out. Mechanisms fail. And sometimes the damage is beyond repair.
Living with a rare brain disease has been like embarking on an uncharted journey, filled with twists and turns I never anticipated.
For years, I tried to navigate life’s winding paths with the same ease as my friends, but my body had other plans. Imagine trying to ride a bike uphill on a windy day while blindfolded—that’s kind of what living with ataxia feels like. Every moment of everyday.
Yet, through this struggle, I’ve come to realize something: happiness doesn’t need to be sidelined by challenges.
Ataxia has taught me resilience, though I wouldn’t call it a lesson I asked for. Some days, I feel like I’m trying to dance while my feet have forgotten the steps. And even though coordination might falter my spirit doesn’t have to.
I’ve learned to find joy in the little things—like the warmth of sunlight on my face or the sound of Springsteen’s “Thunder Road” playing in the background. These moments remind me that happiness is not always grand–sometimes it’s simply a harmonica soothing a loud, crazy world.
What’s struck me most about this journey is how it’s reshaped my perspective. I used to think happiness was a destination—a finish line to cross once I achieved certain milestones. But living with ataxia has shown me that, as cliche as it sounds– it’s more about embracing the present. I’ve learned to celebrate small victories, like cooking dinner for my family or sharing a laugh with friends, even when my words stumble out awkwardly.
I’ve also discovered that my struggles give me a unique perspective that can inspire others. If I can find happiness while grappling with the unpredictability of ataxia, perhaps others can find strength in their own challenges.
Ultimately, I’ve realized that happiness isn’t about being unscathed— it’s about embracing the scars and navigating the ups and downs with an open heart. Life may not always be easy, but within the struggle lies the potential for profound joy.
Continuing this journey– I have created (and still creating) a new website called The (Dis)Abled Writer— a virtual companion for those struggling with and confused by ataxia. It’s the site I wished I had 11 years ago.
Also, on October 5, flanked by family, friends, and members of the Philly Ataxia Support Group, Team J-Strong will be participating in a 1.4 mile walk at the rideAtaxia fundraiser. In just three days we smashed our fundraising goal. Huge thanks to everyone who donated!
But we’re still looking for more support. In recent years, there have been significant advances in ataxia research, and a cure is on the horizon! However, we’re not there yet. Every dollar raised goes directly toward funding this crucial research. Thank you for helping us make a difference. If you would like to donate to help support ataxia research, click here.
I find it fascinating how joy, much like misery, has the power to reshape our perspectives in profound ways. Life with ataxia can be undeniably tough, steeped in its own special brand of misery. But even amidst that struggle, joy still exists—it always has–quietly waiting for our silly human brains to notice it.
Be well,
Jay
Finding Joy in the Journey: Lessons from Living with Ataxia