Director Irene Taylor has opened up about one of the more troubling scenes in her new documentary about the singer Céline Dion.
I Am Céline Dion began streaming on Amazon Prime on Tuesday, and has quickly won praise for its “raw” and “intimate” depiction of the Grammy winner’s struggles with the rare neurological disorder stiff person syndrome.
One of the film’s most troubling scenes falls towards the end of the doc, in which Céline is seen experiencing severe muscle spasms which eventually develop into a 1o-minute seizure.
“It just snowballed very quickly,” Irene told Variety. “She had, just 10 minutes earlier, come out of successfully wrapping up two days of recording for the first time in four years, I think. Her singing voice sounded good. She was in a good mood.
“We were like, ‘Wow, that went great for her’. And then things very quickly went south.”
Earlier in the interview, Irene shared: “Statistically, the likelihood that that would happen while my camera was rolling is extraordinarily rare. Here we have a woman who’s a rarefied singer, and an icon who has a rarefied, orphan disease, and then this really rare thing happens while my camera’s rolling. 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.”
After coming out of her seizure, Céline is heard saying she wants the documentary cameras to stay in the room with her.
“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,” Irene said of the moment, pointing out she’d already been shooting with Céline for eight months by this point, and “not only has she never asked me to stop filming”, she’d even assured the filmmaker to not “ask my permission, just do it” when it came to uncomfortable scenes.
“So I just did my job in that regard. But the human part of me was very uncomfortable.”
Irene continued: “Eventually I showed her the scene, which was 50 minutes whittled down to between [four to five]. I showed it to her, very importantly, in the context of the whole film. 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. I mean, I would have if she asked, because she was only semi-conscious when this happened.
“Anyway, I showed her my fine, rough cut, and the very first thing she said was, ‘I think this film can help me’. I think she meant a lot of things by that. 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.
“I even pressed her. I was like, ‘Well, what about that part where you’re crying and they’re putting something up your (nose)…?’. I actually pulled up the parts that, to me, [were potentially upsetting or invasive]. 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’.”
Irene also told PA: “After the episode occurred, and she sang that beautiful song, she left in very high spirits. Believe it or not, she left that location in very high spirits. And she was actually taking care of me.
“She squeezed my hand and she was just about to drive away in the car, she reached her hand out the window. And she said, ‘Don’t worry about what happened’. And I think that was her way of saying, ‘if you filmed that you can, you know, it’s OK. It’s OK’.”
“In that moment when she reached out and grabbed my hand, maybe I was showing how upset I was, but I was so relieved that she was OK,” she continued.
“But I was also inspired because she sang and she performed and I had never seen her in concert. And I was like this is what it must be like to see Céline in concert.”
The Oscar nominee added: “What you see in this final film is exactly what I showed her the first time. She didn’t want me to change it at all.”
While promoting her new documentary, Céline has shared more about the physical effects of her condition, revealing she’s experienced muscle spasms so intense that they’ve left her with cracked ribs.
The Canadian singer has also made no secret of her hopes to return to live performing in the future, and already has ideas for what that might look like.