Celine Dion knew something wasn’t right with her body for more than a decade before she received a diagnosis.
In a May 23 interview with Vogue, the singer, who now knows she has stiff person syndrome, recalled the early signs and symptoms of the rare neurological disorder.
It was 2008 and Dion was on her "Taking Chances World "Tour. “Quite rapidly, I was having difficulty controlling my voice,” Dion said. A visit to the otolaryngologist, or the ENT, found no abnormalities.
“They looked at (my vocal cords) from every angle, and they said it was pristine,” said Dion. So, she kept going. First, came a Las Vegas residency and then five more tours. During that time, she noticed her muscles stiffening and she needed support while walking.
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More than 10 years later, with the onset of COVID in 2020, Dion, forced to slow down like the rest of the world, was afforded the time to finally get some answers. “When the pandemic arrived, I said to myself, the universe makes no mistakes, and I will take this time — this opportunity — to search,” Dion told Vogue.
After additional testing, doctors diagnosed Dion with the disorder that causes stiffness and spasms in the muscles for which there’s no cure. Symptoms of stiff person syndrome typically begin in the upper body, according to the Cleveland Clinic. As it progresses, symptoms typically move to the lower body, making it difficult to walk and increasing the risk of falling.
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“It probably sounds very strange to say this to you, but when I was diagnosed, I was happy. I was finally able to move with the wave, not against it,” Dion said.
Since her diagnosis, Dion has been receiving treatment for her symptoms. “I haven’t beat the disease, as it’s still within me and always will be,” Dion told Vogue France in April. “Five days a week I undergo athletic, physical and vocal therapy. I work on my toes, my knees, my calves, my fingers, my singing, my voice,” she revealed.
At first, Dion says she questioned whether her illness was her fault. But, she said, there’s no way to know. “Life doesn’t give you any answers. You just have to live it!” So, she’s determined to find her way through life with SPS. Her chosen way forward is to “train like an athlete and work super hard,” she said. “I’ve chosen to work with all my body and soul, from head to toe, with a medical team. I want to be the best I can be. My goal is to see the Eiffel Tower again!”
Dion will give audiences an intimate look into her life with stiff person syndrome in a new documentary, “I Am: Celine Dion,” which will stream on Prime Video on June 25. It's the first time she's letting outsiders into her home.
“This is the only place I have that I could suffer, cry, go crazy, be happy, sing, miss a beat — and right now, to be vulnerable,” Dion told Vogue.
In the trailer for the film, Dion says, “I’m working hard every day, but I have to admit it’s been a struggle.” She talks about how much she misses singing, and how much she misses the stage and her fans. “If I can’t run, I’ll walk. If I can’t walk, I’ll crawl,” she says through tears. “I won’t stop.”
“I hope that the documentary doesn’t frighten people, but awakens people to SPS,” Dion told Vogue. “It took 17 years for me — please don’t wait that long.”
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