Celine Dion Had to Adjust Songs Amid Stiff-Person Syndrome Symptoms
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Celine Dion is opening up about when she first started experiencing symptoms of what would later be diagnosed as the rare neurological condition stiff-person syndrome and how it affected her performances.
“I could say, ‘it’s a little cold starting’ or ‘it’s the third show in a row, you’re working too hard.’ But the thing is, it was different. I started to feel like the body was getting more rigid,” Dion tells Hoda Kotb in a preview for an NBC News interview airing in a primetime special Tuesday night.
The singer says that she first started experiencing real problems during her 2008 Taking Chances tour, ahead of a concert in Germany.
“I said to my assistants and to my people, ‘I don’t know if I can do the show. I don’t know what’s happening,’” she recalls, talking like she sounded at the time, her voice weak and thin, as she previously detailed that singing with the disease makes you feel “like somebody is strangling you.” “I was very, very, very scared. And then you panic, and the more you panic, the more you spasm.”
“I went onstage … of course,” she added. “And I started to sound more nasal.”
In order to try to find a way to perform and not disappoint her fans, Dion says she “compensated” by “lower[ing] the songs a little bit with the keys and project[ing] more nasal and hope.”
“I did my very best because my fans accepted my invitation and I did not know what to tell them,” she explained. “I will do my best tonight? No. You’re going to give your all or you don’t come at all.”
Though she received positive feedback (“Everybody [said], ‘You look pristine’”), she knew she “was not controlling [my voice] anymore and I want to be controlling.”
After more than a decade of testing, Dion was diagnosed with stiff-person syndrome, revealing her health issues in December 2022.
After initially postponing performances, she canceled all of her tour dates in 2023 and 2024.
But she is determined to perform again.
“I’m going to go back onstage, even if I have to crawl, even if I have to talk with my hands. I will,” she said. “I will. … Not just because I have to or because I need to, it’s because I want to. And I miss it.”
After the preview aired on Tuesday’s Today show, Kotb indicated an announcement about Dion’s return to the stage could be coming, pointing out that she asked the singer when she’d return and Dion asked her manager if she could share that but he said no.
Kotb also shared that the special would reveal “times when [Dion] almost lost her life.”
Kotb’s full interview with Dion airs in an NBC primetime special Tuesday at 10 p.m.
