At Pacific Standard, Justin Heckert profiles Anthony Carbajal, a 28-year-old photographer with an inherited form of amyotrophic lateral sclerosis (ALS). Before the disease slowly robs him of his ability to move, swallow, and breathe, Anthony is making the most of his time by inventing hacks to allow him to make photographs. “I like to live in the present,” he says, “About 90 percent of the time, I’m looking forward to the time I do have.”

The photographer was in the pale desert at dusk in early February, standing among hundreds of drooping Joshua trees, under the swiftly changing palate of the sky. He was trying to judge how the failing light would cast the picture he wanted of one tree in particular.

The photographer’s wife noticed he was getting cold, so she wrapped a blanket around his shoulders as he began to shiver in the dark. She rummaged in…

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