Celine Dion has admitted that singing hasn’t been easy since she was diagnosed with Stiff Person Syndrome (SPS).
In a recent interview with “Today Show” host Hoda Kotb, Dion spoke about what her life has been like living with the rare neurological disorder and how it has affected her body, including her voice.
“It feels like someone is choking me, pushing against my larynx and pharynx,” the performer told Kotb, actually pushing back against his throat with his hand.
Dion demonstrated what her voice sounds like when she tries to sing, speaking even higher. “When I talk like that, I can’t sing high or low,” she said. “My voice spasms.”
Celine Dion told “Today” host Hoda Kotb what it’s like to sing with stiff person syndrome. (Francis Specker/CBS via Getty Images)
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The “It’s All Coming Back to Me Now” singer first announced her diagnosis in December 2022 and canceled her 2021 “Courage World Tour” as well as her Las Vegas show.
SPS is defined by the Cleveland Clinic as “a rare autoimmune movement disorder that affects the central nervous system (brain and spinal cord).” People with the condition first experience stiffness in the core muscles, and then, over time, the legs and other muscles in the body become stiff and rigid.
“I Am: Celine Dion,” an upcoming documentary on Amazon Prime, gives fans a glimpse into her life, in which Dion discusses her career-defining songs and recent struggles, including her decision to stop touring.
“It’s not hard to do shows, but it’s hard to cancel shows. I work so hard every day and it’s been really hard, honestly. I miss it so much,” she can be heard saying in the trailer, as old footage of Dion onstage and new footage of her working out to get in better shape.
Dion isn’t sure if she’ll be able to return to the stage anytime soon. (Simone Joyner/Getty Images)
In April, the singer spoke to French Vogue about the possibility of returning to the stage, saying she “cannot answer” yes or no.
Dion acknowledged that for the past four years she had been conflicted about whether to perform again, suggesting that her health had been deteriorating even before she made the public announcement. “I kept telling myself I’m not going back, I’m ready, I’m not ready,” she said.
“My body will tell me, but I can’t just wait. It’s morally tough to live from day to day,” she said. “It’s tough. I’m working hard, but tomorrow will be harder. Tomorrow is another day. But there’s one thing that never stops: the will. The passion. The dream. The determination.”
The “My Heart Will Go On” singer also gave Kotb details about her SPS, saying the muscle spasms were so severe that she “broken some ribs at one point.”
Dion explained that SPS puts your hands and feet in a position that makes it impossible to unlock them. (Gotham/GC Images)
“You may have pain in your abdomen, spine or ribs,” Dion says. “But when you stretch your legs out in front of you, [stuck position]Or when I cook, and I love cooking, my fingers and hands get stuck. My legs get cramps, but they’re like I can’t unlock them.”
