To Build a Fire: Lessons on Living with a Disability
Now that it’s December, I wake up before the rest of the house, the air thick with chill. The first task of the day is always the same: I build a fire, hoping to fill the room with warmth before anyone else stirs. It’s a small act of care, one that brings comfort to the cold morning, but it doesn’t come easily.
I lower myself to the floor, carefully stacking logs into a pyramid, steadying my shaking hands long enough to light the match, then waiting for the flames to catch. When they do, I push myself into a makeshift push-up position, hold my breath, pull my legs in, wobble like a rowboat on a rough sea, and finally rise, exhaling with relief.
At first, I thought healing would come with time. I remember the day the word “ataxia” was first spoken to me—how it felt clinical, distant, almost as if it were meant to keep me from the truth it carried. The neurologist spoke softly, his hands behind his back as he gave me the diagnosis: a degenerative disorder, one that would take my coordination and balance, one that I could not outrun. It felt like a slap—a reality I couldn’t avoid.
Ataxia wasn’t something I could simply cure or manage. The doctor spoke of time—time to adjust, time to adapt, time to get life insurance—but never did he mention that healing wasn’t about time at all. Healing is about effort.
I believed, at first, that time would help. I thought that if I just waited, if I let enough days pass, the fear and frustration would eventually fade. But with ataxia, time didn’t heal anything. It didn’t slow the progression. It didn’t soften the cramps in my hands, the unsteady gait, or the vertigo. Time, instead, deepened my understanding of the reality I was now facing. And that knowledge, without effort, was empty.
I had to learn that healing isn’t about waiting for time to fix what’s broken. It’s about showing up for myself, every single day—even when the world doesn’t seem to be built for someone like me.
Time doesn’t teach you how to adapt. It only makes clear the limitations you face. But effort—effort shows you how to keep going.
It takes effort to take small steps. To relearn how to walk without falling, to steady my hands enough to write or drink without spilling. It takes hours with my physical therapist, pushing myself beyond the discomfort, retraining muscles that seem to forget what they were once capable of. It takes mental work, too—a quiet, persistent resolve to keep trying, even when the results don’t come quickly, or when the path forward feels unclear.
Ataxia doesn’t just affect my body; it affects my ability to do simple things: walking, speaking clearly, using my hands. There are times when I feel defeated, when the weight of it all makes me want to give up. But I remember what my neurologist told me: “You may not be able to control the disease, but you can control your response to it.”
Healing, then, has never been about time. It’s like lighting that morning fire: it’s not the waiting that warms me, it’s the effort I put into it. Every day, I show up with intention and patience, even when everything inside me tells me to stop.
I’ve let go of the old saying that “time heals all wounds.” Time won’t fix what’s broken, and ataxia will continue to affect my body, whether I want it to or not. I’ll never be the person I once was. But time does give perspective. It helps me understand that healing isn’t about the absence of struggle, but the ability to continue on, no matter how small the victory.
Every step, every adaptation, every moment of acceptance becomes part of the process.
Now, when I light the fire each morning, I don’t just do it to chase away the cold. I do it to remind myself of the work that’s required to bring warmth and light into my life each day—work that can’t be done by time alone, but by the steady, intentional effort I’m willing to put in, no matter how long it takes.
Healing, like building a fire, is about showing up with purpose, day after day. Even when the flames seem slow to catch, even when it feels like the warmth won’t come. And in that effort, I find what I need to keep living. Even when life doesn’t unfold the way I imagined, I can still find the warmth to carry me through.
Be well,
Jay
Are you writer? Are you looking for writing advice or writing tactics that you can help guide you on your writing journey?
One, Line, One Love: Episode 47: A Creative Conversation Between Two Everyday Writers
In this episode of One Line, One Love, Gail and Jay explore the power of embracing your own contradictions as a source of writing inspiration. They dive into both literary and societal contradictions, offering rich ground for any writer’s creativity. Reflecting on their personal writing journeys, they discuss how this approach can engage and inspire readers. Through this conversation, they highlight how contradictions can bring depth and authenticity to writing, making it more relatable and compelling. If you’re a writer in search of your next topic, this episode is a must-listen!
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Warm greetings to everyone who found me on the University of Pennsylvania’s Ataxia Clinic’s website! Thanks for stopping by. I have ataxia and though I’m not a doctor, I hope my words comfort, encourage, empower, and serve as good company on your journey.
Jay Armstrong is a speaker and an award-winning author. Despite being diagnosed with a rare neurological disease, that impairs his movement, balance, eyesight, and speech–Jay presses on. The leader of the Philadelphia Ataxia Support Group, he hopes to help you find joy, peace, and meaning in life.
