Céline Dion says she finds strength in and for her three sons to battle stiff-person syndrome, the rare neurological disorder that has prevented her from carrying on 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-altering illness in August 2022, nearly six years after her husband, René Angélil, died from throat cancer. The couple share three children — René-Charles, 23, and 13-year-old twins Nelson and Eddy. Although Dion had mysterious health struggles since the mid-2000s, her symptoms worsened in the years ahead of her diagnosis, which she revealed publicly in December 2022.
The illness, which she has said affects “every aspect” of her daily life, presented her with excruciating muscle spasms, and difficulty walking and breathing. She also said that she has broken ribs from the spasms and her singing voice sometimes becomes more nasal.
“I barely could walk at one point, and I was missing very much living,” 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 kids started to notice. I was like, ‘OK, they already lost a parent. I don’t want them to be scared.’
“I let them know, ‘You lost your dad, [but] mom has a condition and it’s different. I’m not going to die. It’s something that I’m going to learn to live with,’” she added.
And learning to live with it, she has. The five-time Grammy winner will chronicle that journey in “I Am,” whose trailer shows how hard she’s 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’s fans.
When the former Las Vegas headliner first learned of her diagnosis, she was preparing to resume her 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 was “having difficulty controlling” her voice. In May, she told Vogue that she first felt early symptoms in 2008 during her Taking Chances World Tour.
The best-selling French‐language artist, who received a standing ovation at the Grammy Awards in February when she presented Taylor Swift with the award for album of the year , has said in several interviews that she misses the stage and is resolved to make a comeback. In the meantime, she is undergoing intense physical therapy and vocal rehabilitation, and taking medication to manage 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 further open up about her life and “painful, difficult and challenging” health battle in an NBC prime-time special that airs 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,” pointing out how she sounds more nasal.
“Everybody said you look pristine. I was not controlling myself anymore and I want to be controlling,” she said. “When I say that I compensated, we lowered the songs a little bit with the keys and project more nasal. And hope.”
Dion has said that singing now feels “like somebody is strangling you.”
“It’s like someone is pushing your larynx. It is like you are talking like that, and you cannot go high or lower. It gets into a spasm,” she told Kotb in a preview clip last week. Still, she said in Tuesday’s clip, the progressive disorder “didn’t take anything away” from her because of her determination to return to the stage.
“I’m going to go back onstage, even if I have to crawl. Even if I have to talk with my hands. I will. 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 want to and I miss it.”
She also said she regrets not taking time to address her health concerns sooner.
“I did not take the time — I should have stopped, taken the time to figure it out,” she told Kotb. “My husband as well was fighting for his own life. I had to raise my kids, I had to hide. I had to try to be a hero. Feeling my body leaving me, holding on to my own dreams. And the lying for me … the burden was too much.”
