How Celine Dion Gave Herself a Break Onstage While Battling Stiff Person Syndrome (Exclusive)

Celine Dion has been leaning on her fans well before her Stiff Person Syndrome diagnosis. ET's Nischelle Turner spoke to Hoda Kotb the day the Today host's primetime interview with the iconic singer is set to air on NBC, and Kotb, 59, shared how Dion's audiences have helped the singer through her health struggles.

Dion, 56, has been battling health issues for nearly two decades. Though Kotb notes that Dion "knew something was funky with her throat" early on, she says the singer was largely able to "explain away" her symptoms. However, that changed four years ago when things "started to become debilitating."

While on stage during those years, Dion had a trick for getting through hard moments during a performance.

"She would sing her songs and then she would take the microphone and put it out to the crowd," Kotb tells ET. "Why? To get a break. Her fans were helping her."

When COVID-19 hit, Kotb says it was "weirdly a blessing" for Dion "because now she could heal, she could stop, she could be home." However, during that time at home, Dion canceled her remaining Courage World Tour dates due to "severe and persistent muscle spasms." Afterwards, Dion entered into a self-imposed isolation of sorts.

"She is used to singing for big crowds, so since she couldn't sing, she said she didn't want to go outside and be with her children because people would say, 'Oh, she seemed fine with her kids... Why wasn't she on stage? I had to get my money back for my ticket,'" Kotb says of Dion, who shared sons René-Charles, 23, Nelson, 13, and Eddy, 13, with her late husband, René Angélil.

"She was so concerned about [her fans], so it was kind of an isolation where she was living," Kotb adds. "She was learning to work with a PT to keep her muscles limber to know what to do when something starts to to cramp up."

Celine Dion

Celine Dion at the 66th Annual GRAMMY Awards.


It was in late 2022 that she got her Stiff Person Syndrome diagnosis.

According to the Mayo Clinic, Stiff Person Syndrome is "a rare disorder of motor function characterized by involuntary stiffness of axial muscles and superimposed painful muscle spasms, which are often induced by startle or emotional stimuli."

As Kotb sat down to interview Dion, she, like many of the singer's fans, "didn't know how bad" her health struggles had been.

"I did not know the extent of the illness. I did not know how debilitating it was for her," Kotb says. "I had no idea that she was concerned about losing her life. I did not know any of those things, so I think the thing that surprised me the most was what she'd been through in secret... She was battling this by herself."

Now, thanks to Kotb's interview and the upcoming documentaryI Am: Celine Dion, fans are getting an inside look at Dion's personal struggles.

"In the documentary, there is one scene where her foot cramps. It seems like, 'OK, so what? Her leg cramps.' [But] she's laying on a table [and] her entire body from head to toe is frozen and tears are coming down her eyes," Kotb says. "The documentary filmmaker said to me, 'I was so afraid that I was watching somebody die.'"

"Slowly, her muscles loosened and her breathing resumed and everything came back to where it should have been," she continues. "Celine was the one who said, 'I want people to understand what I've been living and dealing with.' I think that was very important to her, to see how bad it was. Now you can understand where she is right now."

Where that is is "clawing her way back," Kotb says.

"Celine Dion is a light spirit, no matter what's going on in her body. Her eyes are light, you feel her energy, you feel all of that goodness," Kotb says. "... She feels like she is letting people down because she wants to perform for them. She wants to sing for them... She's working her way back, and that's kind of what we see in real time. This woman is like, 'I am going to show them what I have to offer them.' She knows in her heart she's gonna be back on stage."

Celine Dion

Celine Dion performs onstage.

Denise Truscello/WireImage

It's not an easy road to get back to performing, though, as Kotb explains, "That voice, she told me it was effortless. She said, 'I would go up and down and all around and never think about it.' And now she's like, 'Can I bring it up?'"

"I think she's trying to figure out what's a new normal for her because she was getting very emotional talking about her voice. She calls the voice the conductor of her life. That's really her north star. That's really it," Kotb says. "... I said, 'Sometimes do you get mad at God?' And she goes, 'No, I go on with my life. I am going to show people that I am going to be back.'"

When the day does come when Dion's able to get back on stage, Kotb predicts that her fans will be as supportive as they've always been.

"I think her fans are going to be there for her in a way that she has never experienced before," she says. "I was imagining when she gets back on stage and a whole stadium full of people [are] singing for her."

Kotb adds, "I think her goal and the reason she talked to us is to show what she's been through, but, more importantly, where she's going. She's like, 'Don't feel sorry for me. I'm working here. I'm working.' She's gonna work. She's gonna work it as much as she is capable of."

Dion's full interview with Kotb for NBC Nightly News airs Tuesday, June 11 at 10 p.m. PT/ET. I Am: Celine Dion debuts June 25 on Prime Video.


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