Céline Dion insisted that no changes be made to a harrowing new documentary about her battle with Stiff Person Syndrome (SPS) after she was filmed experiencing a lengthy spasm.
The Canadian singer was diagnosed with the condition, a rare autoimmune neurological disorder that causes muscle stiffness and uncontrollable spasms, in 2022.
Her subsequent struggles are set to be documented in new Amazon Prime release I Am: Céline Dion – a heartbreaking look at the superstar’s daily life since making the decision to withdraw from the public eye while coming to terms with SPS and its debilitating effects.
And the documentary’s director Irene Taylor says Dion was adamant that a near 10-minute scene in which she experiences a lengthy spasm be retained.
It shows her grunting, appearing to be in pain, while lying on her back in spasm, unable to move. She is attended by medical workers, before recovering and singing.
Céline Dion insisted that no changes be made to a harrowing new documentary about her battle with Stiff Person Syndrome (SPS) after she was filmed experiencing a lengthy spasm
The Canadian singer was diagnosed with the condition, a rare autoimmune neurological disorder that causes muscle stiffness and uncontrollable spasms, in 2022
Taylor told the PA news agency she was thinking “should I film it” when Dion went “very quickly” into the attack, but decided to continue as the singer, known for her powerful voice, had told her not “to ask permission to film something”.
She added: ‘So in that first 30 seconds, I was not focused on filming, I was the sound person and my cinematographer was there.
‘But there were several people in the room and everyone was doing what they were trained to do to help her, they’d all been given medical training on what to do if this happens.
‘So she was in the best hands she could be in. If they needed an extra pair of hands, I would have dropped my microphone and gotten in (to) help them without a doubt. But I did decide to keep filming, knowing that we didn’t have to use it.’
Dion revealed her diagnosis in 2022 and has previously said it that can cause spasms so strong that can break ribs and feel like strangulation of the throat.
Taylor added that Dion said “we can always talk about it later if I’m uncomfortable with it” and “just basically stayed out of the way”.
She also said: ‘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”.
Her subsequent struggles are set to be documented in new Amazon Prime release I Am: Céline Dion – a heartbreaking look at the superstar’s daily life with SPS
The Canadian star has cancelled all live performances while she battles the rare condition
The documentary director Irene Taylor says Dion was adamant that a near 10-minute scene in which she experiences a lengthy spasm be retained
‘And I think that was her way of saying, if you filmed that you can you know, it’s OK. It’s OK. I don’t know what it looked like. And I thought, yeah, but she doesn’t know what it looks like. Like… she was only semi-conscious. So ultimately, I did edit it into the film.
‘And 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.’
When asked why she thinks Dion grabbed her hand, she replied saying she thought she was “hiding” her emotions.
‘In that moment when she reached out and grabbed my hand,” she said. “Maybe I was showing how upset I was, but I was so relieved that she was OK.
“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.
‘Because I was like so overcome with, you know, this like ‘Hell yeah’, like (I felt) emotion (on) me. You know, when she did all of her Céline Dion things, her mannerisms, and so, I really appreciated that.’
It shows her grunting, appearing to be in pain, while lying on her back in spasm, unable to move. She is attended by medical workers, before recovering and singing
Dion revealed her diagnosis in 2022 and has previously said it that can cause spasms so strong that can break ribs and feel like strangulation of the throat
Taylor, also known the Oscar-nominated documentary The Final Inch and Beware The Slenderman, said: ‘I would have never shown it if she didn’t want me to, that’s just the honest truth. It’s too personal.’
Taylor says that Dion “never asked me how I was editing something”, but explained “it’s fair to say that she set the film on the course it took by wanting to give a lot of herself”.
She said: ‘I couldn’t have done it without her will, you know the will is very powerful and I think any public figure can decide to let go of this narrative that’s been constructed about them for a long time, because sometimes they don’t even have control of that narrative, it’s like, it becomes a force of its own.’
Directed by Academy Award nominee Taylor, I Am: Céline Dion has been available worldwide on Prime Video from June 25.
