My right hand’s trembling, betraying me more each day. I’ve got to brace it, hold it steady while I work on these tiles. It’s a damned reminder, a cruel joke—my neurons flickering, trying to connect, slowly dying out. This connection, this shared curse, binds us all with ALS. It’s real, and it’s really shitty.
The tiles are piling up now, stacks of stories and faces. We laid them out in a 16-tile row to gauge the sheer size of it. Ten and a half feet of relentless, unyielding art. My first reaction was to laugh at the enormity, but then the weight of it hit me. These individuals, coming together to form something vast, something that transcends the sum of its parts.
This project was never about just the individual. In the beginning, it was all about silhouettes—shadows of what once was. But as each tile took shape, I saw more than just shadows. I saw the people, their struggles, their strength. For a fleeting moment, I’d forget they were part of a larger mosaic.
ALS is a thief, robbing us of ourselves, changing us in ways we never asked for. But it also forges bonds, brings us together in a way nothing else can. Through this artwork, I hope the weight of ALS is seen and felt. That it strikes a chord deep enough to drive change. So that ALS is not just seen but understood, and someday, somehow, conquered.
Every stroke, every detail, is a battle against time. The right hand may tremble, but it creates. It defies. And in that defiance, there’s a spark of hope, a flicker of life that refuses to be snuffed out.
댓글