Céline Dion insisted on keeping muscle spasm footage in documentary, director says

(CNN) — Céline Dion insisted that graphic footage of herself having a violent muscle spasm should stay in a new documentary about her life, the film’s director has said.

In an interview with Variety, Irene Taylor, the director of “I Am: Céline Dion,” said the legendary singer insisted on keeping the “intensely revealing” moment in the final cut.

Upon being shown the footage, “the very first thing she said was, ‘I think this film can help me,’” according to Taylor.  “And then she said, ‘And I don’t want you to cut out that scene, and don’t cut it down.’”

The scene in question came as a shock to Taylor, who did not expect to film Dion having one of the spasms associated with stiff person syndrome, the neurological condition with which she was been diagnosed.

“Statistically, the likelihood that that would happen while my camera was rolling is extraordinarily rare,” she said. “No one expected that to happen. We never discussed, ‘What if that happens, what do we do?’ Never even had that conversation, because we just assumed it wouldn’t happen.”

Dion first shared her diagnosis in an emotional video post back in 2022.

The disorder is “a rare, progressive syndrome that affects the nervous system, specifically the brain and spinal cord,” according to the National Institute of Neurological Disorders and Stroke.

Last year, Dion announced that she canceled her “Courage World Tour,” with a source close to her telling CNN at the time that she “will likely never tour again.”

“It just snowballed very quickly,” said Taylor, describing the moment when the spasm happened. Only minutes before, Dion had finished two days of recording for the first time in four years.

Despite her discomfort and uncertainty about filming the incident, Taylor told Variety that she held on to her boom mic and kept filming.

“I realized, ‘You know what? I have a job to do, too’… But the human part of me was very uncomfortable,” she said. “But I really believe in the power of nonfiction, and I really believe that we can transport people in their own imagination by showing them real things, not scripted things.”

Earlier this month, Dion addressed the crowd at a screening of the film and spoke of a newfound hope for her condition. She also thanked her fans, saying the film was a “love letter” to each of them.

The documentary was released Tuesday on Amazon’s Prime Video streaming service.

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