I wrestle with this damned laptop, my hands shaking, muscles playing their sick little games. But I force them, make them bend to my will just long enough to crack open the inbox. And there it is—a flood. Not just a trickle, but a full-blown deluge of faces, stories, lives. Not 10 or 20, but hundreds, crashing into me like a freight train I never saw coming.
At first, there's a jolt—a thrill, even. But that thrill burns out fast, like a hit of something strong that leaves you hollow once it fades. Reality slaps me in the face—this thing is real now. Not just some idea bouncing around in my mind, but a living, breathing being demanding my attention. Each face, each story weighs on me. A heavy burden, but one I’m damn sure ready to carry.
I work slow, methodical. These aren't just submissions—they’re lives. Moments, etched into my mind as I stare at their faces. It feels like I’m sitting with them, each one telling me their story. Two, three hours per tile, and the printer grinds away, spitting out these fragments of life from dawn till the dead of night. Seven hundred hours. Miles of filament. And 256 lights flickering like the nervous system of a body betraying itself—erratic, desperate.
The gravity of it pulls me down, yet it’s that same gravity that keeps me tethered to this earth, driving me to look ALS in the eye and say, “Not today.” I’ll claw my way through every obstacle, drag myself inch by inch if I have to, because this project has to show the world the real horror, the relentless grind, the quiet strength it takes to stare this disease down.
ALS rips so much from us—strength, independence, time. But through this, I’m clawing some of that back. I’m fighting to give these stories the light they deserve, pushing back against the darkness ALS casts over us. It’s my way of saying, “You don’t get to define us. You don’t get to win.”
And then it hits me—this project isn’t just daunting, it’s alive. But I keep going, tile by tile, story by story. Every hour, every light, every damn piece of this puzzle is worth it. Because this isn’t just about showing the world what ALS does. It’s about fighting back. ALS can take our strength, our time, our bodies—but it’ll never take our spirit. Not today. Not ever.
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