When Céline Dion began experiencing the debilitating symptoms of the rare autoimmune and neurological disorder known as stiff-person syndrome, she had to find a way to move forward. This disorder would later be identified by doctors, but for Dion, the journey was challenging from the onset.
“I went on stage and started to sound more nasal,” the legendary music star recalled in an interview previewed on the Today show. “I could say, ‘It’s a little cold starting’ or ‘It’s the third show in a row.’ ‘You’re working too hard.’ But it was different. I started to feel like my body was more rigid.” These spasms, key symptoms of stiff-person syndrome, accompany slurred speech and double vision.
The painful muscle contractions can become so severe that patients may lose their ability to walk or speak.
Also Read: Celine Dion Reveals How Stiff Person Syndrome Led to Her Broken Ribs
For Dion, it felt “like somebody is strangling you. It’s like somebody is pushing your larynx/pharynx.” “When I try to breathe, my lungs are fine. It’s what’s in front of my lungs that’s so rigid,” Dion explains in her new Prime Video documentary ‘I Am: Céline Dion’, with footage airing on Today.
Despite her health troubles, Dion powered through her Taking Chances World Tour, driven by the fear of disappointing her fans. She told Kotb she “compensated” by adjusting the songs to a different vocal register. “We lowered the songs a little bit with the keys,” Dion said, noting that she relied on “hope” to carry her through. “I did my very best because my fans accepted my invitation, and I did not know what to tell them. ‘I will do my best tonight?’ No. You’re going to give it your all or you don’t come at all.”
While Dion’s inner drive remains strong, she finds additional strength in her family, particularly her sons René-Charles, and twins Nelson and Eddy, whom she shared with her late husband René Angélil. Angélil passed away from throat cancer, leaving Dion to navigate these challenges as a single parent.
“I let them know, ‘You lost your dad, [but] mom has a condition, and it’s different. I’m not going to die,'” Dion recalls in a new cover story. “‘It’s something that I’m going to learn to live with.'” This reassurance to her children underscores her resilience and determination to continue living life to the fullest despite her health challenges.
-Sushmita Sarkar