Céline Dion is bravely opening up about her battle with stiff person syndrome in her first documentary I Am: Celine Dion, which premiered June 25 on Prime Video. But in the new film, fans get a much more raw and deeper look at her illness, which she says she’s been dealing with for over a decade, than they could have ever imagined.
In a recent interview with Variety, director Irene Taylor revealed the one scene that Dion refused to let her cut, despite it depicting a traumatic experience for the singer. In fact, it ended up serving as part of the film’s shocking finale. Spoilers for I Am: Celine Dion ahead.
The “Intensely Revealing” Scene
While filming I Am: Celine Dion, the singer experienced a rare seizure, and the ordeal was caught entirely on camera, which Taylor edited down to a five-minute scene. “It was so intensely revealing that I didn’t want to show it to her out of context, nor did I want to show her the raw footage,” she said. “I would have if she asked, because she was only semi-conscious when this happened.”
Rather than Dion asking for further edits or opting to cut her seizure entirely, she demanded that the scene be kept in the documentary. “The very first thing she said was, ‘I think this film can help me.’ I think she meant a lot of things by that,” Taylor said. “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.”
Taylor even brought up particularly invasive moments of the medical ordeal, and Dion would not budge on showing it all uncensored. “I was like, ‘Well, what about that part where you’re crying and they’re putting something up your (nose)…?’” she recalled. “She said, ‘It’s OK. I told you I don’t want you to cut it. That’s what I go through. That’s what this feels like.’”
Filming The Seizure
As Dion experienced her seizure, Taylor was briefly torn on whether to keep rolling the cameras, before remembering a command that Dion had given her months prior.
“I realized, I don’t know what we’re gonna do with this footage, but I’m just gonna keep filming, cause I’ve 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,’” she recalled. “So I just did my job in that regard. But the human part of me was very uncomfortable.”
Speaking to Vogue earlier this month, Dion said her goal with I Am was to tell her story in a “classy way” while showing her fans the “full truth,” which meant filming moments that could be considered too personal.
“The film was done with so much respect,” she said. “I did allow Irene to capture things that maybe will be hard for some people to see, but it’s my reality.”