How Evan Mathis and Patrick Sean O’Brien Bring Truth and Humor to ALS in ‘The Hemingway’ Documentary

Capturing Joy in Darkness: A New Film on Patrick O’Brien

In an exploration of the balance between humor and hardship, filmmaker Mathis sheds light on Patrick O’Brien’s journey through ALS. “The hard challenge was to try and tell the story in all of its sort of brutal, veristic truth without making it disgusting,” Mathis noted. He emphasized the importance of showcasing O’Brien’s vibrant personality, saying, “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.”

J.R. Reed voices O’Brien in the film, and during the Contenders panel, O’Brien utilized a digital voice synthesizer to respond to questions. O’Brien described the duality of using synthetic speech, stating, “Using a synthetic voice is a curse and a beautiful blessing. When I was still able to speak, I would dictate stories and eat Lindt chocolate balls. Those were the days.”

He further shared insights about his collaboration with Reed. “Evan was initially thinking of using his own voice,” O’Brien explained. “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 symbolize O’Brien’s spirit, including a sequence that metaphorically transports O’Brien from his bed to a forest. This visual representation of his longing for freedom illustrates his inner resilience. “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 explained. He added that a model of Katz’s deli, O’Brien’s favorite spot for pastrami sandwiches, appears in the skyline to signify the connection to his past.

That sequence, like the film as a whole, showcases O’Brien’s relentless spirit amid the challenges posed by ALS. Mathis highlighted, “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. 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.”

For those interested in deeper insights, the panel video will be available on Tuesday.