Céline Dion insisted no changes be made in a harrowing new documentary about her battle with stiff person syndrome (SPS) after she was filmed experiencing a long 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 will be documented in the new Amazon Prime release, I Am: Céline Dion, a heartbreaking look at the superstar’s daily life since she made the decision to retreat from the public eye while coming to terms with SPS and its debilitating effects.
And the documentary’s director, Irene Taylor, says Dion insisted that a nearly 10-minute scene in which she experiences a prolonged spasm be preserved.
It shows her grunting, appearing to be in pain, while lying on her back spasming, unable to move. She is treated by medical workers, before recovering and singing.
Céline Dion insisted no changes be made in a harrowing new documentary about her battle with stiff person syndrome (SPS) after she was filmed experiencing a long spasm.
The Canadian singer was diagnosed with the disease, 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 launched “very quickly” into the attack, but she decided to continue because the singer, known for her powerful voice, had told her not to “ask for permission to film.” something”.
She added: “So in those first 30 seconds, I wasn’t focused on filming, I was the sound person and my director of photography was there.
“But there were several people in the room and they were all doing what they were trained to do to help her, they had all received medical training on what to do if this happened.”
‘So she was in the best hands she could be in. If they needed an extra pair of hands, she would have dropped my mic and walked in to help them without a doubt. But I decided to keep filming, knowing we didn’t have to use it.”
Dion revealed her diagnosis in 2022 and previously said it can cause spasms so strong they can break ribs and feel like a chokehold.
Taylor added that Dion said “we can always talk about it later if I don’t feel comfortable” and “basically stayed out of it.”
She also said: ‘After the episode happened and she sang that beautiful song, she left in high spirits. Believe it or not, she left that place in a very good mood. And she was actually taking care of me.
‘She squeezed my hand and when she was about to leave in the car, she stuck her hand out the window. And she said, “Don’t worry about what happened.”
Her subsequent struggles will be documented in the new Amazon Prime release I Am: Céline Dion: A Heartbreaking Look at the Superstar’s Daily Life with SPS.
The Canadian star has canceled all of his live performances as he battles this rare condition.
The documentary’s director Irene Taylor says Dion insisted that a nearly 10-minute scene in which she experiences a prolonged spasm be preserved.
‘And I think that was his way of saying, if you filmed that, you can know it’s good. Alright. I don’t know what he looked like. And I thought, yeah, but she doesn’t know what she looks like. Like… she was only semi-conscious. I finally edited it for the movie.
‘And what you see in this final film is exactly what I showed him the first time. She didn’t want me to change it at all.
When asked why she thinks Dion grabbed her hand, she responded by saying she thought she was “hiding” her emotions.
“That’s when she reached out and grabbed my hand,” he said. “Maybe she was showing how upset she was, but I was so relieved that she was okay.”
“But I was also inspired because she sang and acted and I had never seen her in concert. And I thought this is what it must be like to see Céline in concert.
‘Because I was so overwhelmed with, you know, this like ‘Hell yeah,’ like (I felt) emotion (over) me. You know, when he did all his Céline Dion stuff, her mannerisms, etc., I really appreciated it.
It shows her grunting, appearing to be in pain, while lying on her back spasming, unable to move. She is treated by medical workers, before recovering and singing.
Dion revealed her diagnosis in 2022 and previously said it can cause spasms so strong they can break your ribs and feel like your throat is being strangled.
Taylor, also known for the Oscar-nominated documentary The Final Inch and Beware The Slenderman, said: “I would never have shown it if she didn’t want to, that’s the honest truth.” It’s too personal.
Taylor says that Dion “never asked me how I was editing anything,” but explained that “it’s fair to say that she put the film in the direction it took by wanting to give a lot of herself.”
She said: “I couldn’t have done it without their will, you know the will is very powerful and I think any public figure can decide to let go of this narrative that has been built on them for a long time, because sometimes they don’t even have control of that narrative, it is as if it becomes a force of its own.
Directed by Oscar nominee Taylor, I Am: Céline Dion has been available worldwide on Prime Video since June 25.