Céline Dion Wanted Her Seizure Included in Her Documentary

She said the grueling footage could help others understand what she’s going through.

In 2022, Céline Dion revealed that she had been diagnosed with stiff-person syndrome, a rare neurological disorder that causes involuntary spasms and muscle rigidity. Now, a new documentary about her life provides an intimate look at how the singer has been affected by the illness.

Directed by Irene Taylor, I Am: Céline Dion  — which begins with a warning from Prime that it shows “powerful scenes of medical trauma” — includes a heart-wrenching scene where Dion suffers a two-minute-long seizure. The film shows her lying on her side as she cries out and her face twitches while her team holds and comforts her. Eventually, as the team talks about calling 911, she says, “I’m okay.”

Along with painful muscle spasms, stiff-person syndrome causes rigidity in the body. It can affect balance and posture, making it hard to walk, and can be triggered by things like loud noises, cold, and emotional distress. One or 2 million people have the disease, making it “exquisitely rare,” as one expert told the New York Times. Earlier this year, Dion told French Vogue that she does “athletic, physical, and vocal therapy” five times a week and is living “from day to day.”

Taylor told the Times that when Dion first saw the documentary, she asked Taylor to keep the seizure scene in the final version of the documentary. “She said, ‘I don’t want you to change anything in this film, and I don’t want you to shorten that scene,’” Taylor recalled. Taylor said the singer also saw a potential upside to sharing the intimate moment with the world. “She said, ‘I think this film can help others understand what it’s like to be in my body.’”

Related

• Céline Dion Is ‘Learning to Live With’ Stiff-Person Syndrome
• What We Know About Céline Dion’s Stiff-Person-Syndrome Fight