Filmmaker with advanced ALS rallies friends for final documentary

Film, started before diagnosis, tackles death and dying

Written by Marisa Horak, MS |

Two people are pictured from behind with their heads together and their arms around each other in an illustration.

Filmmaker and University of Virginia graduate Chris Farina had the idea for a documentary about death and dying about 10 years ago. Now he’s in the final stages of amyotrophic lateral sclerosis (ALS), and is relying on friends to help him complete the project.

One of those friends is fellow documentary filmmaker Paul Wagner. “He’s making a film with a perspective on the subject matter that is unparalleled, that is remarkable,” Wagner said in a university news story. “It imbues the film with a great deal of power.”

ALS is caused by the progressive dysfunction and death of the nerve cells that control muscle movement, which leads to muscle weakness, paralysis, and eventually death. Farina can no longer speak independently, though he can communicate electronically.

His friend Peter Thompson, who works to promote healthy aging, said Farina’s idea was to make a documentary that encourages people to talk openly about death and dying.

“This all started about 10 years ago,” said Thompson, former director of the Center at Belvedere, a senior center in Charlottesville, Virginia. “Chris and I were having a conversation about how he was thinking about doing a film on death and dying, and my work at the Center at Belvedere was a sort of parallel.”

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The documentary features interviews with people involved in different areas related to death and dying, from death doulas and medical workers to gospel singers and people who make grave markers.

“Our relationship to death in the United States is dysfunctional, and that costs the person who is in the final stages of their life, and even more so, the people who loved them,” Thompson said. “We don’t have the language to talk about death, so we use a lot of euphemisms that don’t always help us.”

The film shows that people don’t have to deal with death and grief alone, said Thompson.  “There will be people with you at the end, if you let them in,” he said.

Farina’s friends said working on the film has helped them come to terms with the fact that this will be the award-winning filmmaker’s last project.

“I’ve been able to see Chris much more regularly in the last few months, and I see how he handles it with dignity and as much of a smile as his body can muster,” Thompson said. “ALS is a rare disease, but most of us will have some period of decline before we die. If I face something similar, I’ll know that Chris smiled through this, so maybe I can, too.”

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