This project, this thing that started as a flicker in my mind, has grown beyond anything I could have imagined. What began as a rough sketch, a small mock-up to give shape to an idea, has now drawn in people from all corners of the world. They send photos, they share stories, they offer themselves in ways that continue to amaze me. And it’s been a revelation—realizing just how much I rely on the kindness and willingness of others. It’s humbling. It’s also terrifying.
The idea was mine, the concept was mine. I’ve adapted my art to technology, letting a robot lay down the plastic where I tell it to, letting the code I wrote control the lights. It’s all supposed to be mine, right? But none of this would be possible without the help I’ve received. And that’s been a hard pill to swallow . The hardest part, the part that gnaws at me, is accepting that help. I’ve always been an artist who worked alone, who took pride in pulling everything together with my own hands. But now my hands don’t work like they used to, and my ego—stubborn as it is—has to take a backseat. I’ve had to learn to lean on others, to let them carry parts of this project that I can no longer manage on my own. And it’s been one hell of a struggle to accept that.
I’ve made strides, I know that. Over a hundred tiles have come to life, and I’ve seen the first full-size mock-up with the lights, with the stories. It’s something I should be proud of, and I am, but it’s pride mixed with a bitter taste. Because the truth is, if my body wasn’t betraying me, I wouldn’t need this help. I wouldn’t need to hand over parts of my vision to others. And yet, if not for this disease, would I have ever conceived of something this powerful, this raw? It’s a twisted kind of irony, to need something so cruel to create something so vital.
Mentally, this has been difficult. I’m creating images of people dying and people that have passed from ALS in every brutal form I can imagine, and I’m reading stories that drag me into the darkest corners of what this disease does to people. And all the while, I know I’m on that same path. These horrors that I’m depicting, they’re not just abstract—they’re my future. And that’s a weight that’s almost too much to carry some days. But I know these images, these stories—they’re important. They need to be told, to be seen. Because maybe, they’ll light a fire in someone, spark a change, make some difference in this fight.
So here I am, caught between gratitude and grief, between pride and pain. This project is bigger than me now, and I’m learning—painfully, slowly—that that’s okay. It’s okay to need help. It’s okay to lean on others when my own strength isn’t enough. And maybe, in the end, that’s the real art of this project: not the tiles, not the lights, but the collective effort, the coming together of so many hands, so many hearts. Maybe that’s where the true beauty lies.
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