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I Am: Celine Dion - Why Did The Documentary Feature Singer's Whole Seizure Episode? Director Irene Taylor Reveals
Celine Dion's new documentary, I Am: Celine Dion, reveals her struggle with stiff person syndrome, capturing intimate and raw moments of her life.
Spoilers Alert: Spoilers ahead for the latest documentary film I Am: Celine Dion
Celine Dion opened her life to the cameras for the new documentary I Am: Celine Dion on Amazon Prime Video, setting no limits on what could be filmed. The documentary offers a deeply personal look at Dion’s battle with stiff person syndrome, an autoimmune condition causing severe muscle spasms and stiffness. During one session with her physical therapist, captured on film, Dion had a seizure, and the cameras continued to roll.
Why did director Irene Taylor film Celine Dion's seizure?
Director Irene Taylor discussed the filming process and the decision to include Dion's medical emergency in the documentary. Initially, Taylor had no idea Dion was ill. They began working on the film during the pandemic, assuming her being home was due to the global situation. It was only after agreeing to make the film that Dion's manager revealed her illness. They filmed for months without a definitive diagnosis.
After the diagnosis, Taylor did not consider stopping the project. Instead, she focused more narrowly on Dion's experience, moving away from the idea of touring with her. During an interview with the New York Times, Taylor revealed, "When I realized that a) she had a problem with no name and b) when I actually started filming I could see how her body looked different, her face looked different, I was able to focus."
Dion did not set any boundaries for the filming, allowing Taylor complete access to her life. Taylor revealed to the NY Times that, "There were no discussions on parameters, and that is because Celine did not ask for those parameters. She said to me, on the very first day, “You’re in my home, the fact that you’re here means I have let you in. Don’t ask me permission to shoot anything.” This trust, built over time, allowed for the raw and intimate portrayal seen in the documentary.
Taylor recalled the moment Dion had a seizure during a physical therapy session. She described the stiffness taking over Dion’s body and her subsequent moaning in pain. Concerned for Dion's well-being,
Taylor discreetly checked if she was breathing while her therapist and bodyguard attended to her. Taylor and her team continued filming, capturing the intense and uncomfortable moment without cutting away, inspired by a Buddhist parable about cultivating compassion by not looking away from suffering.
Taylor told the NY Times, " There were moments where I was like, OK, this is really intense. I let it go two or three seconds more, and then I would cut."
Celine Dion asked to keep the seizure scene in the documentary
When Taylor finally showed the film to Dion, she was prepared for Dion to request the removal of certain scenes, especially the seizure. However, Dion watched the film and expressed to the outlet that it could help her and others understand her condition better. She insisted on keeping "that scene" as it was.
Taylor shared with the outlet about her conversation with Celine. "Deeper into our conversation, she said, 'I don’t want you to change anything in this film, and I don’t want you to shorten that scene.' She just called it “that scene,” and we both knew what she was talking about."
Taylor also noted that Dion wanted to show the film to her sons to help them understand her illness. Watching the film together, Dion reassured them, demonstrating her role as a mother and a woman coping with her condition, teaching her children about her experience with the disease.
I Am: Celine Dion premiered on 25 June 2024; and is available to stream on Amazon Prime Video.
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