Imagine being trapped inside your own body, your mind still sharp and vibrant, but your physical abilities slowly slipping away. This is the stark reality of ALS, a disease that robs individuals of their mobility while leaving their intellect intact. But here’s where it gets inspiring: The Hemingway, a powerful documentary short co-directed by Evan Mathis and Patrick Sean O’Brien, doesn’t just show the harsh truths of ALS—it celebrates the humor, resilience, and unyielding spirit of those living with it.
The film is a deeply personal project, chronicling O’Brien’s own journey with ALS. When he approached his longtime collaborator, Evan Mathis, with a script, the goal was clear: to tell a story that was brutally honest yet profoundly uplifting. In a candid conversation with Deadline’s Matt Carey at Contenders Documentary, Mathis revealed the delicate balance they struck. “The challenge was to portray the raw, unfiltered reality of ALS without crossing into discomfort,” Mathis explained. “Patrick’s incredible sense of humor and love for life became our guiding light. We wanted that to shine through every frame.”
And shine it does. Despite the weighty subject matter, the film is infused with moments of joy and laughter, a testament to O’Brien’s indomitable spirit. But here’s where it gets controversial: How do you authentically represent a voice silenced by disease? For O’Brien, the answer lay in J.R. Reed, whose voice serves as O’Brien’s in the film. “Using a synthetic voice felt like a double-edged sword,” O’Brien shared during the panel, his words delivered through a digital voice synthesizer. “It’s a curse because it’s not my own, but it’s a blessing because it gives me a voice again. When I could still speak, I’d dictate stories and savor Lindt chocolate balls. Those were the days.”
The decision to use Reed’s voice wasn’t immediate. Initially, Mathis considered using his own voice, but the advent of AI technology briefly entered the conversation. “We toyed with the idea of AI,” O’Brien recalled, “but we quickly realized we needed the warmth and authenticity of a human voice. J.R. was the perfect fit.”
Mathis’s creative genius is on full display in the film’s visual storytelling. One particularly striking sequence uses visual effects to transport O’Brien, still confined to his bed, to a serene forest. It’s a metaphorical escape, a reminder that the mind remains unbound even when the body is not. “We used an iPhone’s LiDAR Scanner to capture Patrick in his bed and seamlessly transpose him into a different world,” Mathis explained. “The wall behind him breaks away, and his mind lifts him out of his room in Chelsea, Massachusetts, to the place his heart longs for—New York City. As we rise up a skyscraper, we include a model of Katz’s deli, Patrick’s favorite spot for a pastrami sandwich. And here’s a fun Easter egg: the LiDAR scan of Patrick in the forest is also hidden inside the deli scene.”
This sequence, like the film itself, is a testament to O’Brien’s relentless creativity in the face of adversity. “Patrick’s mind is still firing on all cylinders, even though his body doesn’t cooperate,” Mathis noted. “For those unfamiliar with ALS, the film reveals the depth of what’s happening beneath the surface. It’s a powerful reminder that there’s so much more to a person than what meets the eye.”
The Hemingway isn’t just a documentary—it’s a celebration of life, a challenge to societal perceptions of disability, and a call to see beyond physical limitations. And this is the part most people miss: ALS doesn’t define a person; it’s how they choose to live with it that truly matters.
So, here’s a thought-provoking question for you: In a world that often equates physical ability with worth, how can we better celebrate the creativity and resilience of those living with disabilities? Share your thoughts in the comments—let’s keep this important conversation going.
Check back Tuesday for the full panel video and dive deeper into this inspiring story.
