The Things I Lost in the Fire
There’s a strange kind of discipline in knowing the precise second your energy will abandon you. I didn’t have this particular skill before. Before the fire—or my stroke(s)—I didn’t clock the mileage it took to shower, to walk from the bedroom to the coffee maker, to actually drink the coffee before it gets cold. But now, it’s an expertise, a checklist of “how much.” How much standing, how much sitting, how much pretending that I’m good. Some days, I feel like I’m riding my motorcycle along the edge of my limits, savoring the thrill of pushing forward, even as I know the “fun gap”—that place where exhilaration meets restraint—is closer than ever.
Masking comes easily; it’s a gift, really. “How are you?” takes only one word—“Fine.” And in truth, I am fine, except in all the ways I’m not. Fine, except the sudden need to lie down, which can eclipse the most ironclad plans. Fine, except the limitations that shadow everything. The sound of the world itself, sometimes even my own voice, feels like an endless echo bouncing through my brain. It’s as though post-stroke, I’ve inherited an internal misophonia, a heightened sensitivity not just to sound but to life’s demands, big and small.
Some mornings, I’m ambitious, like really ambitious. There’s something about a morning, after all, that fools us into believing anything can happen. I’ll think, “Today, I’m going to accomplish something big” I’ll pick out my best outfit—something black of course—give myself a pep talk in the bathroom mirror, and make my way to the door. Then it hits. The fatigue. A wall that’s not brick and mortar but feels just as immovable , like a solid debris filled tsunami. The outfit goes back on the hanger, and I’m reminded that my dreams have to wait a bit . This feels a little like entropy—desire itself suffering a slow fade, erode not by lack of will but by pure, relentless limitation.
The Dr’s and Neurologists call it “post-stroke fatigue,” but that phrase doesn’t quite do it justice. Fatigue sounds polite, like something that shows up on a Sunday afternoon after a busy weekend or after a long road trip. This is something different. It’s an uninvited guest that takes up space, demands my silence, and forces me to recalibrate everything I thought I knew about myself. It’s not just tiredness; it’s as if parts of me are simply missing, as if the things I lost in the fire took more than I initially realized.
My work—well, I don’t work in the way people understand. That’s the part that’s hardest to explain. But if I try to imagine myself in an office, a “real job,” with a “mediocre middle aged boss,” all I see is the inevitable—the fatigue setting in, the need to lie down after an hour, the constant battle between what I can do and what’s expected of me. I feel fortunate, in a way, to have spent most of my 40s self-employed. It’s made me the kind of boss I’d want to work for. My workdays are shaped by my own terms, with flexibility to adapt to whatever the fire left behind. I’m accountable to myself, and if I need to lie down or step away, there’s no guilt, no one to explain it to. This has taught me that success isn’t just about productivity; it’s about meeting my own needs with grace and understanding.
One unexpected change has been the clarity that came from removing myself from people and projects where I couldn’t be fully present, or where an attitude—whether of arrogance, insincerity, or indifference—seemed to linger. I can sense these attitudes quickly now, and I avoid them at all costs. I suppose I could say I’m principled, though I did have to look it up to be sure. Let’s just say I have some principles, without risking insult to those with far more established inventories.
So, I focus on what I can create. It’s ironic; the fire took so much, but here I am, lighting my own small sparks where I can. Writing a line or two, sketching an idea, shaping a project that’s mine, wholly mine. The need to work this way makes me think of my project Ephemeral Monolith— a public art piece designed to transform over time, altered but still standing. The fatigue has taken something similar from me, changing me in ways that aren’t fully visible but are unmistakable to me. But just as that sculpture will erode with the elements, I’ve decided that my own evolution is part of the story, too. This life isn’t what I pictured, but I’m alive and it’s still mine, and like the monolith, it’s shaped by forces I can’t control but can still stand alongside.
Maybe the things I lost in the fire weren’t things at all. Maybe they were the parts of myself that no longer fit, that never fit. Now, what’s left is rawer, quieter, and yes, a bit more fragile. But here, with no fantasies or fictions to hide behind, I am exactly who I need to be—unmasked and honest, with all the things I’ve lost and all the things I’m still learning to find again.
