Céline Dion insisted on sharing ‘upsetting’ footage of seizure in doc amid stiff person syndrome battle

Céline Dion, 56, insisted on showing footage of herself suffering a seizure in her new documentary, “I Am: Celine Dion.” 

The “My Heart Will Go On” singer, who suffers from a rare autoimmune neurological disorder called stiff person syndrome that has interfered with her ability to sing, is shown having a physical therapy session in 2022. 

On a massage table, she appears convulsing and writhing in pain, moaning in agony, as medical workers tend to her. 

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A man then asks her, “Do you want us to take out the cameras?” 

But the Grammy-winning singer is shown mouthing, “I’m OK.”

The documentary’s director, Irene Taylor, told Yahoo that Dion “didn’t want me to change anything” after watching that footage. 

“Her therapist saw the [medical] episode coming on, and within 30 seconds there was no going back. We just responded as quickly as we could. We really could not move from that corner of the room. I was holding a microphone [and used it] to gauge if she was breathing or not,” Taylor explained. 

She added, “It was very upsetting. Very upsetting. I know it’s hard on some viewers, it was hard on me, too. But I will tell you that Céline felt validated to see herself like that, and she thought it would help her if other people could understand what [SPS] is like.”

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On-screen, Dion tells the camera: “Everytime something like this happens, it makes you feel so embarrassed, and so, like, I don’t how to express it, it’s just … you know, like to not have control of yourself…”

She added that she hasn’t given up dreams about her career. 

“I still see myself dance and sing. I always find Plan B and 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 won’t stop. I won’t stop.”

Dion’s condition has caused her to withdraw from the public eye, although she’s made some brief appearances, like attending the 2024 Grammys and the premiere of her documentary earlier this month. 

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The director told Yahoo! that she and Dion “never had a conversation” before filming about what they would do if Dion had a health issue in front of the cameras.

“I truly thought it was so unlikely, it was not even a conversation we needed to have,” Taylor said, adding that “months might go by” without Dion having an incident. 

“If it does happen, [Céline] told me over and over again, ‘Don’t ask me permission to film, just keep rolling and we can talk about it later.’ ” 

She said that Dion watched the film with the three sons she had with late husband René Angélil: René-Charles, 23, and 13-year-old twins Nelson and Eddy.

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“[Céline] used the film actually as a teaching tool with them, so that she could show them the extent of how she feels about her situation and the extent of what can happen to her body if she goes into an episode of stiff person syndrome,” Taylor said. 

“I Am: Celine Dion” hits Prime Video on June 25.