Céline Dion, 56, was responsible for keeping images of her seizures in the final edition of her documentary “I Am: Céline Dion,” which had its official premiere on Tuesday (25).
The singer-songwriter suffers from a rare and incurable condition known as Stiff Person Syndrome (PRS), which is characterized by muscle spasms and stiffness.
During the documentary, Céline is shown in a physiotherapy session held in 2022, in which she convulses and writhes in pain – it is possible to hear her moans of agony as the doctors tend to her.
“Do you want us to take the cameras off?” asks a member of the production, to which the singer replies, “I’m fine!”
Irene Taylor, the documentary’s director, said in an interview with Yahoo that the singer watched the footage and insisted she “didn’t want them to change anything.”
“Her therapist saw the [medical] episode coming, and within 30 seconds, there was no going back. We just responded as quickly as we could. We really couldn’t leave that corner of the room. I was holding a microphone [and used it] to assess whether she was breathing or not,” Taylor explained.
The director continued, “It was very disturbing. Very disturbing. I know it’s hard for some viewers, it was hard for me too. But I will tell you that Céline felt validated to see herself that way, and she thought it would help her if other people could understand what [SPR] is like.”
On screen, the “My Heart Will Go On” singer appears saying, “Every time something like this happens, it makes you feel so embarrassed, and then, like, I don’t know how to express it, it’s just… you know, like you don’t have control of yourself…”
She added that she hasn’t given up on dreams about her career. “I still see myself dancing and singing. I always find a Plan B and a Plan C, you know. That’s me. If I can’t run, I’ll walk. If I can’t walk, I’ll crawl. But I’m not going to stop. I’m not going to stop!”
Irene said she and Dion “never talked” before filming about what they would do if the singer had a health crisis in front of the camera.
“I really thought it was so unlikely that it wasn’t even a conversation we needed to have,” Taylor told Yahoo, adding that “months could pass” without Céline having an incident.
“If that happens, [Céline] told me repeatedly, ‘Don’t ask me for permission to film, just keep filming and we can talk about it later.’ She
said the singer watched the film with her three sons René-Charles, 23, and twins Nelson and Eddy, 13, from her marriage to musician René Angélil, who died in 2016 of throat cancer.
