In Céline Dion’s new documentary, the legendary singer reveals her life behind the scenes as she deals with Stiff-Person Syndrome. A ten-minute alarming and emotional scene towards the end of the film shows a motionless Dion as she painfully deals with a symptom of her syndrome.
Director Irene Taylor talked to The New York Times about how the “Power of Love” singer, who was diagnosed with SPS in 2022, didn’t want to cut anything from the film to show the raw moment. “I could just see this stiffness that was not like the flowing, lithe dancer that I had been filming for several months doing her physical therapy,” Taylor recalled. “Within a couple of minutes, she was moaning in pain.”
Related: What is Stiff-Person Syndrome? All About Celine Dion’s Diagnosis
She continued, “I wanted to know if she was breathing, because she was moaning and then she stopped. I put the microphone, which was at the end of a pole you can discreetly put closer to your subject, underneath the table. I couldn’t hear her breathing.” Her physical therapist and her head bodyguard helped the singer while she was distressed. “We didn’t cut away. 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. I wanted to go just far enough that it makes people think about their own experience and not to run away.”
Did Celine Dion have a seizure?
Celine Dion‘s physician Dr. Amanda Piquet told TODAY that she experienced a spasm, not a seizure. “It’s not a seizure,” Piquet told the publication. “This is a spasm that is occurring, and patients are aware of what’s going on. There’s a lot of anxiety, there’s a lot of panic, your adrenaline’s rushing.”
Piquet, a member of the advisory board of the Stiff Person Syndrome Research Foundation, explained to the outlet that it was “a complete, whole-body spasm.” She added that people who experience Stiff Person Syndrome encounter these spasms for 30 minutes to an hour. “That anxiety, that panic, that continued spasm that was not breaking then very quickly triggered just a complete whole body spasm.”
In the scene, Dion’s physical therapist lays her down on a massage table and gives her a benzodiazepine nasal spray. The nasal spray is a depressant drug that relieves anxiety and reduces muscle spasms.
The weight of the spasms lies heavy with Dion. “Every time something like this happens, it makes me feel so embarrassed,” Dion says after her spasm episode. “I don’t know how to express it, you know, to not have control over yourself.”
Her therapist theorizes that it might be due to her being overwhelmed while she was recording in the studio. “If I can’t get stimulated by what I love, then I’m going to go on stage, and you’re going to put the pulse oximeter on me and turn me on my back?” she asks.”It’s scary, I know,” her PT assured her. “It’s hard. This is not the end of your journey.”
Despite the trials and tribulations of Stiff-Person Syndrome, Dion aims to be back on the stage. “I spent all my life in the music industry being a performer and loving every moment of it,” she told Hoda Kotb.This passion will never go away,” she told the host. “I’m going to go back on stage, even if I have to crawl, even if I have to talk with my hands. I will. Not just because I have to or I need to, but because I want to. I miss it.”
