He was diagnosed with ALS. Now, he’s making his final film

It will be Farina’s final film. Four years ago, he was diagnosed with amyotrophic lateral sclerosis – known commonly as ALS or Lou Gehrig’s disease – a degenerative disease that robs people of their ability to move, talk and, ultimately, breathe. 

Farina can no longer speak, so his friends are speaking for him. They are working to raise funds to complete the film and screen it at October’s edition of the Virginia Film Festival, where last year Farina won the Gov. Gerald L. Baliles Founder’s Award, honoring an outstanding Virginia filmmaker. 

Farina started working on the project years before his diagnosis.

In addition to being an alumnus himself, Farina’s wife and son are UVA graduates. His daughter is in her fourth year at the University. (Photos by Jen Fariello)

“This all started about 10 years ago. 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 with aging was a sort of parallel,” said Peter Thompson, also a UVA alumnus and a close friend of Farina’s.

The film’s premise is that talking about death can seem nearly impossible, but it is important to try anyway. The documentary explores the end of life in a way many might instinctively want to avoid.

“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.”

Thompson said grief and death don’t have to be lonely.

“There will be people with you at the end, if you let them in,” Thompson said.

Farina’s ALS diagnosis makes the subject of his last documentary particularly resonant, but he began working on it before he was diagnosed. (Photo by Jen Fariello)

Those people include gospel singers, death doulas, medical workers and the people who make grave markers, all of whom Farina interviewed for the documentary.

Mariah Botkin, who helps with marketing and distribution for the documentary, has never visited Charlottesville, where Farina is based. But knowing him and working on the film gave her a new outlook and helped her grieve her own loved ones who have died.

“The documentary even shows the people who transport the body after someone dies, and how much care there is there. I think we, as a society, can find comfort in that,” Botkin said.

According to fellow documentarian Wagner, Farina is among the most qualified people to make a documentary about death.

“He’s making a film with a perspective on the subject matter that is unparalleled, that is remarkable,” he said. “It imbues the film with a great deal of power.”

Farina can still communicate via email and other written means, but he is in the final stages of his disease. Working on the documentary, Thompson, Botkin, and Wagner said, has helped them accept the end of their friend and colleague’s life.

“Bridge to Life,” a documentary about men with addiction, is now streaming on PBS. It showed at the Virginia Film Festival. (Contributed photo)

“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.”

Botkin said that even over email, Farina remains exceptionally warm-hearted.

“He has a way of connecting with everyone, and he has given me this optimistic, compassionate outlook. It’s contagious,” she said.

Perhaps more than anything else, Thompson said, Farina may be known for working as an attendant at the Corner parking lot.

“He was working in this booth, and there were people constantly cycling in and out. It really was an island of misfit toys. And Chris carried that sensibility into what he did,” Thompson said. “He wasn’t making films about the president of the United States or Charlottesville’s rich and famous. He knew that everyday people are just as important as that, and that we all have something to offer.”