Since her 2022 diagnosis of stiff person syndrome, Celine Dion has largely avoided the public spotlight. Now, details are coming to light about her fight against this rare disorder.
“Before I wasn't prepared to say anything, but now I am,” says the singer in the trailer from “I Am: Celine Dion,” which will premiere June 25 on Prime Video. Directed by Academy Award nominee Irene Taylor, the documentary follows Dion as she navigates her dramatically changed life.
“This inspiring documentary, which serves as a love letter to his fans, highlights the music that has guided his life while showcasing the resilience of the human spirit,” a press release. saying.
Stiff person syndrome, which affects approximately one in a million people and has no cure, is characterized by muscle stiffness and spasms, increased sensitivity to sound and lights, and emotional distress that can cause spasms, according to the National Institute of Neurological Disorders and Stroke.
Such spasms, Dion told NBC's Hoda Kotb in a Friday preview of an upcoming “Today” interview, hamper her ability to perform or even carry out everyday tasks and have broken her ribs.
When he cooks, he said, “my fingers, my hands get in a position… like you can't unlock them.” And singing: “it's like someone is strangling you.”
“She's in the fight of her life right now,” Kotb said in the preview. “She is struggling to get over it. She is trying to find out if she can come back.”
When Dion first learned she had stiff-person syndrome, she was preparing to resume her Courage World Tour, which began in 2019 but was interrupted in March 2020 by the pandemic. After announcing initial delays, Dion canceled the entire tour in May 2023.
“I am very sorry to disappoint you all once again. “I am working very hard to regain my strength, but traveling can be very difficult even when you are 100%,” Dion saying At the time. “It's not fair to you to keep postponing shows, and while it breaks my heart, it's best that we cancel everything now until I'm really ready to get back on stage.”
“I want everyone to know that I will not give up,” he said.
The five-time Grammy winner has kept her promise, telling Vogue France In April he undergoes athletic, physical and vocal therapy five days a week.
“It's difficult, I'm working very hard and tomorrow it will be even more difficult,” he said. “But there is one thing that will never stop and that is the will. It's the passion. It's the dream. It's determination.”
As for when he might return to the stage, “My body will tell me,” he said.
In February, Dion received a standing ovation when she made a surprise appearance at the Grammys to present the album of the year award to Taylor Swift.
