Céline Dion Insisted on Sharing ‘Upsetting’ Footage of Seizure in Doc Amid Stiff Person Syndrome Battle
Céline Dion, at 56, has bravely chosen to include distressing footage of herself experiencing a seizure in her new documentary, “I Am Celine Dion.” The iconic singer, renowned for hits like “My Heart Will Go On,” has been battling a rare autoimmune neurological disorder known as stiff person syndrome, which has significantly impacted her ability to sing.
The documentary reveals a poignant moment from 2022, where Dion is undergoing a physical therapy session. The scene is raw and emotional, with Dion lying on a massage table, convulsing and writhing in pain, while moaning in agony as medical personnel attend to her. A man in the room asks if she wants the cameras removed, but Dion, despite her distress, mouths, “I’m OK.”
Irene Taylor, the documentary’s director, explained to Yahoo that Dion was adamant about the footage remaining unaltered. “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 said. She emphasized how emotionally taxing the situation was, saying, “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.”
During the documentary, Dion candidly shares her feelings with the audience: “Every time 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…” Despite these challenges, she remains hopeful about her future. “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”, via Daily Mail.
Dion’s struggle with stiff person syndrome has necessitated her withdrawal from the public eye, although she has made some notable appearances, such as attending the 2024 Grammys and the premiere of her documentary earlier this month. Taylor disclosed that they had never discussed how to handle potential health incidents during filming. “I truly thought it was so unlikely, it was not even a conversation we needed to have,” she said, noting that “months might go by” without an incident. However, Dion had given clear instructions: “‘Don’t ask me permission to film, just keep rolling and we can talk about it later.’”
The documentary also serves as an educational tool for Dion’s family. She watched the film with her three sons, René-Charles, 23, and 13-year-old twins Nelson and Eddy, whom she had with her late husband René Angélil. Taylor mentioned, “[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.”