Céline Dion says she finds strength in and for her three children to fight rigid person syndrome, the rare neurological disorder that has prevented her from continuing her celebrated singing career.
The “My Heart Will Go On” and “It's All Coming Back to Me Now” hitmaker was diagnosed with the life-changing illness in August 2022, almost six years after her husband, René Angélil, died. of throat cancer. The couple share three children: René-Charles, 23, and twins Nelson and Eddy, 13. Although Dion had mysterious health problems since the mid-2000s, her symptoms worsened in the years leading up to her diagnosis, which she revealed publicly in December 2022.
The illness, which she said affects “every aspect” of her daily life, caused her unbearable muscle spasms and difficulty walking and breathing. She also said that she has broken ribs from spasms and that her singing voice sometimes becomes more nasal.
“I could barely walk at one point and I had a long way to go,” the 56-year-old singer told People this week ahead of the June 25 release of her Prime Video documentary. “I am: Céline Dion.” “My children began to realize it. I thought, 'Okay, they already lost a father.' I don't want them to be afraid.'
“I let them know: 'You lost your dad, [but] Mom has a condition and it is different. I'm not going to die. It's something I'm going to learn to live with,'” she added.
And he has learned to live with it. The five-time Grammy winner will chronicle that journey in “I Am,” whose trailer shows how hard she has been working to return to the stage after her diagnosis. The film, directed by Oscar-nominated filmmaker Irene Taylor, is billed as a “love letter” to Dion fans.
When the former Las Vegas star first learned of his diagnosis, he was preparing to resume his Courage World Tour, which began in 2019 but was interrupted in March 2020 by the COVID-19 pandemic. After initial delays, Dion canceled the entire tour in May 2023, about six months after she publicly revealed that she continued to deal with severe muscle spasms and “had difficulty controlling” his voice. In May, she told Vogue that she first felt symptoms in 2008, during her Taking Chances World Tour.
The best-selling French-speaking artist, who received a standing ovation at the Grammy Awards in February when she presented Taylor Swift with the album of the year award, has said in several interviews that she misses the stage and is determined to make a comeback. In the meantime, she undergoes intense physical therapy and vocal rehabilitation, and takes medication to control the disorder, which affects about one in a million people and has no cure, according to the National Institute of Neurological Disorders and Stroke.
The French-Canadian superstar will speak more about her life and her “painful, difficult and challenging” health battle in an NBC primetime special airing Tuesday. In a clip that aired on the “Today” show Tuesday morning, Dion demonstrated how the disorder affects her voice by singing a few lines from “The Power of Love,” noting how she sounds more nasal.
“Everyone said you look flawless. I no longer controlled myself and I want to control myself,” she said. “When I say that I compensated, we lowered the songs a little with the keys and projected more nasally. And the hope.”
Dion has said that singing now feels “like someone is strangling you.”
“It's like someone is pushing on your larynx. It's like you're talking like that and you can't go up or down. A spasm occurs,” she told Kotb in a preview clip last week. Still, he said in Tuesday's clip, the progressive disorder “didn't take anything away” from his determination to return to the stage.
“I'm going back to the stage, even if I have to crawl. Even if I have to talk with my hands. I will do that. I will,” she said. “I am Céline Dion, because today my voice will be heard for the first time, not just because I have to or because I need to. It's because I love it and I miss it.”
He also said he regrets not taking the time to address his health issues sooner.
“I didn't take the time; I should have stopped, taken the time to figure it out,” he told Kotb. “My husband was also fighting for his own life. I had to raise my children, I had to hide. I had to try to be a hero. Feeling like my body is abandoning me, clinging to my own dreams. And lying for me… the burden was too much.”
