Celine Dion insisted on keeping distressing seizure scene in her documentary: ‘Don’t cut that’

Celine Dion insisted on keeping footage of her having a seizure in the documentary I Am: Celine Dion, director Irene Taylor has revealed.

The documentary, described as a “love letter” to the Canadian singer’s fans, follows her extraordinary career while offering a behind-the-scenes look at her nearly 17-year struggle with a rare neurological disorder called Stiff Person Syndrome, or SPS.

The condition afflicts about one or two in a million people. It starts with muscle spasms and, over time, crippling body seizures and torso rigidity.

Dion revealed her illness on social media in 2022 after it forced her to reschedule and then cancel her world tour. She has stayed largely out of the public eye since.

A scene towards the end of the documentary shows Dion returning from a studio after recording the title track for the 2023 film Love Again and having a seizure.

Taylor describes shooting the scene and explains why she kept the cameras rolling despite believing she would not be able to use the footage in the documentary.

“Statistically, the likelihood that would happen while my camera was rolling is extraordinarily rare. Here we have a woman who is a rarefied singer, and an icon who has a rarefied, orphan disease, and then this really rare thing happens while my camera’s rolling,” she told Variety.

“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,” Taylor said.

“It really was not my place to help her physically because she had people there. And I realised, ‘You know what? I have a job to do, too. I don’t know what we’re gonna do with this footage, but I’m just gonna keep filming, because I have been filming with Celine for eight months, and not only has she never asked me to stop filming, she specifically told me, ‘Do not ask my permission, just do it.’ So I just did my job in that regard.”

Celine Dion in ‘I Am: Celine Dion’ trailer (Prime Video)
Celine Dion in ‘I Am: Celine Dion’ trailer (Prime Video)

After filming concluded, Taylor said she showed a rough cut to Dion and was prepared to be asked to cut the scene, but Dion was insistent on keeping it to provide a more authentic experience of what it was like having SPS.

“She cried through most of the film. I was watching her out of the corner of my eye, but I was a little embarrassed to watch because that was such an intimate moment for her,” Taylor told The New York Times.

“The first thing she said to me was, ‘I think this film can help me.’ Then she said, ‘I think this film can help others understand what it’s like to be in my body.’ And then she said, ‘And I don’t want you to cut out that scene, and don’t cut it down.’ And by ‘that scene,’ we knew what she meant.”

Céline Dion onstage at the 66th Grammys (Getty)
Céline Dion onstage at the 66th Grammys (Getty)

Taylor also mentioned how open Dion was about filming and how she gave her carte blanche consent to shoot anything.

“She said to me, on the very first day, ‘You’re in my home, the fact that you’re here means I have let you in. Don’t ask me permission to shoot anything.’”

“I felt like I had to take that access with tenderness, dignity and class,” she said.

In a recent interview, Dion said she was planning a new show in Las Vegas and talked about how physical therapy was helping her rebuild her voice.

“My voice will be rebuilt,” the singer told the BBC.

“I mean, it started a while ago already. My voice is being rebuilt as we speak, right now.”

“We have been working so hard to put this show together, because I am back,” Dion said, referring to the proposed show in Las Vegas.

I Am: Celine Dion is streaming on Prime Video.