Since her 2022 diagnosis with stiff person syndrome, Celine Dion has largely avoided the public eye. Now, details about her fight against the rare disorder are coming to light.
“I wasn’t ready to say anything before, but I’m ready now,” the singer says in the trailer for “I Am: Celine Dion,” premiering June 25 on Prime Video. Directed by Academy Award-nominee Irene Taylor, the documentary follows Dion as she navigates her dramatically changed life.
“Serving as a love letter to her fans, this inspirational documentary highlights the music that has guided her life while also showcasing the resilience of the human spirit,” a press release said.
Stiff person syndrome, which affects about one in a million people and has no cure, is characterized by muscle rigidity and spasms, heightened 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 tease to an upcoming “Today” interview, hinder her ability to perform or even carry out everyday tasks — and have broken her ribs.
When she’s cooking, she said, “my fingers, my hands will get into a position … like, you cannot unlock them.” And singing, “it’s like somebody’s strangling you.”
“She’s on, like, the fight of her life right now,” Kotb said in the tease. “She’s fighting through it. She’s trying to figure out if she can come back.”
When Dion first learned she had stiff person syndrome, she was gearing up to resume her Courage World Tour, which began in 2019 but was interrupted in March 2020 by the pandemic. After announcing initial delays, Dion went on to cancel the entire tour in May 2023.
“I’m so sorry to disappoint all of you once again. I’m working really hard to build back my strength, but touring can be very difficult even when you’re 100%,” Dion said at the time. “It’s not fair to you to keep postponing the shows, and even though it breaks my heart, it’s best that we cancel everything now until I’m really ready to be back on stage again.”
“I want you all to know, I’m not giving up,” she said.
The five-time Grammy Winner has kept her promise, telling Vogue France in April that she undergoes athletic, physical, and vocal therapy five days a week.
“It’s hard, I’m working very hard and tomorrow will be even harder,” she said. “But there’s one thing that will never stop, and that’s the will. It’s the passion. It’s the dream. It’s the determination.”
As for when she might return to the stage, “My body will tell me,” she 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.
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