Celine Dion has been leaning on her fans long before her Stiff Person Syndrome diagnosis. ET’s Nischelle Turner spoke with Hoda Kotb the day the Today host primetime interview with the iconic singer airs on NBC, and Kotb, 59, shared how Dion’s audience helped the singer your health difficulties.
Dion, 56, has been battling health problems for nearly two decades. Although Kotb notes that Dion “knew something was weird in her throat” from the beginning, she says the singer was largely able to “explain” her symptoms. However, that changed four years ago when things “started to get debilitating.”
While on stage During those years, Dion had a trick for overcoming difficult moments during a performance.
“She would sing her songs and then get on the mic and broadcast it to the crowd,” Kotb told ET. “Why? To get a break. Her fans were helping her.”
When COVID-19 hit, Kotb said it was “weirdly a blessing” for Dion “because now she could heal, she could stop, she could be home.” However, during this time at home, Dion canceled his remaining Courage World Tour dates due to “severe and persistent muscle spasms”. After that, Dion went into a kind of self-imposed isolation.
“She’s used to singing in front of big crowds, so because she couldn’t sing, she said she didn’t want to go out and be with her kids because people would say, ‘Oh, she seemed fine with her kids… Why wasn’t she on stage? ? I had to get my ticket money back,’” Kotb says of Dion, who share children René-Charles, 23, Nelson, 13, and Eddy, 13, with her late husband, René Angélil.
“She was so worried (about her fans), so it was kind of isolating where she lived,” Kotb adds. “She was learning how to work with a physical therapist to keep her muscles flexible and know what to do when something started to cramp.”
It was at the end of 2022 that she managed Diagnosis of Stiff Person Syndrome.
According to Mayo clinicStiff Person Syndrome is “a rare disorder of motor function characterized by involuntary stiffness of the axial muscles and superimposed painful muscle spasms, which are often induced by startles or emotional stimuli.”
When Kotb sat down to interview Dion, she, like, many fans of the singer“I didn’t know how bad” his health difficulties were.
“I didn’t know the extent of the disease. I didn’t know how debilitating it was for her,” says Kotb. “I had no idea she was worried about losing her life. I didn’t know any of those things, so I think what surprised me most was what she went through in secret… She was fighting it herself.”
Now, thanks to Kotb’s interview and the next documentary, I am: Celine Dionfans are getting a peek into Dion’s personal struggles.
“In the documentary, there is a scene where she has cramps in her feet. It feels like, ‘OK, so what? Leg cramps’. (But) she is lying on a table (and) her entire body, from head to toe, is frozen and tears are streaming from her eyes,” says Kotb. “The documentary filmmaker told me, ‘I was so scared of seeing someone die.'”
“Slowly, his muscles loosened and his breathing resumed and everything returned to where it should be,” she continues. “Celine was the one who said, ‘I want people to understand what I’ve been living through and facing.’ I think that was really important for her, seeing how bad it was. Now you can understand where she is now.”
This is “tearing your way back,” says Kotb.
“Celine Dion is a light spirit, no matter what is going on in her body. Her eyes are light, you feel her energy, you feel all this kindness,” says Kotb. “…She feels like she’s letting people down because she wants to perform for them. She wants to sing for them…She’s stepping back, and that’s what we see in real time. This woman is like, ‘I’m going to show them what I have to offer them.’ She knows in her heart that she will be back on stage.”
However, it’s not an easy path to returning to acting, as Kotb explains: “That voice, she told me it was easy. She said: ‘I was up and down everywhere and never thought about it.’ And now she’s like, ‘Can I talk about this?'”
“I think she’s trying to figure out what a new normal is for her because she was getting really emotional talking about her voice. She calls her voice the driver of her life. That really is her north star. That’s right,” says Kotb. “…I said, ‘Do you sometimes get mad at God?’ And she said, ‘No, I’m going to get on with my life, I’m going to show people that I’m going to come back.’
When the day comes that Dion can return to the stage, Kotb predicts her fans will be as supportive as they’ve always been.
“I think her fans will be there for her in a way she’s never experienced before,” she says. “I was imagining when she came back on stage and a whole stadium full of people singing for her.”
Kotb adds, “I think her goal and the reason she spoke to us is to show what she’s been through, but more importantly, where she’s going. I am working.’ She will work. She will work as much as she is able.
Dion’s full interview with Kotb for NBC Evening News airs Tuesday, June 11 at 10pm PT/ET. I am: Celine Dion premieres on June 25th on Prime Video.
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