Life as a Photographer with ALS: ‘As Much Sky As You Can Get!’

Photo by Gregory "Slobirdr" Smith CC-BY-SA 2.0

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 his bag and found the camera, a Sony A7, and unfolded the camera’s tripod on the dirt of the desert floor at Joshua Tree National Park. The photographer could no longer take pictures the way he used to; his arms dangled limply at his sides. He could not twist the lens to focus because of the atrophy in his hands, and didn’t have the strength to push his index finger into the shutter-release button when an image became perfect in his eye. He used to have several cameras, used to carry them on harnesses on his shoulders, used to be able to snap thousands of pictures in the span of a few hours.

The photographer, Anthony Carbajal, had just turned 28. He had a thick beard and short, tapered haircut, and such an optimistic disposition that it seemed his natural state, which could make him appear to have endless energy, though he was often tired. That morning his wife, Laarne Palec, also 28, helped him shower; helped him put on his pants and underwear; let him rest his arm on her shoulder in front of the bathroom mirror as she rolled deodorant under his armpits.

Laarne knelt on the desert floor, near the tripod beneath a Joshua tree. The trees were Anthony’s favorite metaphor; he found hope merely by staring at them, saw defiance in the way they survived.

“Joshua trees are very awkward,” he said. “Their limbs just hang there and don’t work anymore. They are very awkwardly beautiful.”

Read the story