ALS is a thief, and it doesn’t wait. It doesn’t care who you are, what you’ve got planned, or how much you love the life you’re living. I knew that when I started this project, knew it was going to be a fight against time, but it’s different when you feel it creeping up your bones, when your shoulder starts giving out, and you know that clock’s not slowing down. That’s the cruelty of this thing—it takes piece by piece, doesn’t leave anything untouched, doesn’t ask permission.
But this isn’t just about me. It’s about all of us who’ve felt this disease sink its claws in, who’ve had to watch it strip away everything, leaving just enough to remind you of what you’ve lost. And yet, in the middle of all that taking, something else happens. It’s like a fire, like a forging—people get stronger. They start holding on tighter, fighting harder. Every person who sent me their portrait, every single one who said, “I want to be part of this,” they knew what they were up against. And some of them, they didn’t make it to see this project finished. ALS took them. But it didn’t take the fight they left behind.
That’s the thing about this disease—it thinks it’s got all the power because it’s so damn good at taking. But it doesn’t get that every time it tries to break us, we get harder to crack. It can strip us down, but it can't take away the grit, the guts, the fire that’s left burning. This project, this flicker of light in the darkness, it’s us saying, “You don’t get to have the last word.” Every face, every light, every damn bit of this is a rebellion against the silence ALS tries to force on us.
So yeah, I’m angry. I’m exhausted. I’ve felt the depression gnawing at my bones, whispering that maybe it’s all too much. But I’m not done yet, and neither is this community. We’re not going anywhere. ALS can come for our bodies, it can steal our time, but it’ll never take the fight out of us. It’ll never kill the spirit that refuses to lay down. And as long as I’ve got breath, as long as we’ve got each other, this disease doesn’t stand a damn chance. And ALS, that bastard thief, doesn’t get to have the final word.
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