Facing the brutal realities of ALS with humor and heart: this is the powerful story captured in the documentary short, The Hemingway. Co-directors Evan Mathis and Patrick Sean O’Brien offer a raw and intimate look at life with ALS, challenging viewers to confront the disease's harsh truths. But how do you tell such a story without succumbing to the darkness? This is where the magic of The Hemingway truly shines.
The film's creation began when O’Brien, who is living with ALS, reached out to his long-time collaborator, Mathis, with a script. Together, they navigated the sensitive task of portraying the physical effects of ALS without being overly graphic. Mathis explained that the key was to balance the brutal reality with O’Brien's inherent joy and humor.
"The hard challenge was to try and tell the story in all of its sort of brutal, veristic truth without making it disgusting," Mathis said. "As much of the subject matter in this film could be very easily turned dark and kind of disgusting, Patrick’s sense of humor and his joy of life, I really wanted to make sure that that shined through."
And this is the part most people miss... The film doesn't shy away from the challenges of ALS, but it also celebrates the spirit of life that persists despite the disease. J.R. Reed voices O’Brien in the film, while O’Brien himself uses a digital voice synthesizer for public appearances. This highlights the ever-evolving nature of communication for those with ALS.
O’Brien reflected on this, stating, "Using a synthetic voice is a curse and a beautiful blessing.” He reminisced about the days when he could dictate stories and enjoy simple pleasures like eating Lindt chocolate balls.
But here's where it gets controversial... The choice of a human voice, J.R. Reed, was a deliberate one. Initially, they considered using artificial intelligence, but ultimately, they opted for a human voice. O’Brien explained, "Evan was initially thinking of using his own voice. Then when artificial intelligence dropped, we didn’t spend as much time in that world as we might have, because we were settled on a human. J.R. was the perfect fit. I felt early on that we would need a human voice.”
Mathis employed visual effects to represent O’Brien's vibrant spirit. One particularly striking sequence uses an iPhone’s LiDAR Scanner to transport O’Brien from his bed to a forest, symbolizing his mind's ability to transcend physical limitations.
"The idea was that the wall breaks away behind him and Patrick’s mind, basically, is able to elevate him out of his room in Chelsea, Massachusetts, and take him back to where his heart longs to be, which is New York City,” Mathis said. The sequence even includes a model of Katz’s Deli, O’Brien’s favorite spot for a pastrami sandwich, with a hidden LiDAR scan of O’Brien in the forest as an Easter egg.
This innovative use of technology and storytelling beautifully captures O’Brien's continued creative drive, even within the constraints of ALS. Mathis emphasized that O’Brien's mind remains exceptionally active.
"One of the things that’s so special about Patrick is that his wonderful, brilliant, creative mind is still all gas no breaks, even inside a body that doesn’t do what his brain wants anymore," Mathis said. "For those that don’t have the experience of someone with ALS in their life, it really shows that there’s a lot more going on than initially you would see just from the outside.”
What do you think? Does The Hemingway offer a unique perspective on living with ALS? Share your thoughts in the comments below!
