Celine Dion is being open about her health. In an interview with Hoda Kotb on Tuesday — portions of which aired on Today show ahead of the scheduled primetime special – the 56-year-old singer opened up about Living with Rigid Person Syndromeher desire to return to acting and the silent struggles she faced alone.
According to the legendary “My Heart Will Go On” singer, the first sign of her medical issues came more than a decade and a half ago while she was on her Taking Chances world tour in 2008. She shared that she would experience what she considered vocal spasms and general rigidity that took more than 10 years to be diagnosed. The medical mystery led the singer to do “crazy things to keep going”, including taking large doses of diazepam – also known as Valium.
“Let’s put it this way, we’ve tried a lot of things,” she told Kotb. “Trying too many things when you don’t know what you have can kill you.”
At the height of her grief and health difficulties – following the tragic consecutive deaths from cancer of her husband, René Angélil, and her brother, Daniel Dion – the singer remembers taking up to 90 milligrams of Valium a day to overcome the pain and continue performing.
“I didn’t want to stop,” Dion shared about trying to avoid pausing her performances. “I honestly didn’t know it could kill me. I would take, for example, before a performance, 20 milligrams of Valium and then just walk from my dressing room backstage… it was gone (from my system). “
According to Recovery Villagethe maximum recommended dosage of Valium is 40 milligrams and higher dosages can lead to serious health complications, possible overdoses, and in some serious cases, death.
“90 milligrams of Valium can kill you,” Dion told Kotb. “You can stop breathing. And at a certain point, the problem is that my body got used to 20, 30 and 40 (milligrams) until I went up and needed that (dosage). It was relaxing my whole body, but why? For two weeks, for a month?”
She continued: “Okay, the show must go on, you say, ‘I’m fine.’ But then you get used to it.”
Fortunately, Dion told Kotb that with medical intervention, she was able to wean herself off her pain management medication — something that can also be dangerous. After stopping taking the “bad meds,” she says the pain became unbearable, but it also allowed her to focus on getting to the bottom of her symptoms. For her, not finding an answer was as scary as finding one.
“Nobody wants to go to the doctor and say, ‘I hope they find something.’ Everyone says, ‘I hope I’m okay,’ but I would be okay if they found something,” she explained. “That was the question. But what will they find?”
After years of no answers, doctors finally gave her a diagnosis that shocked her and everyone around her: Stiff Person Syndrome. The one-in-a-million condition is classified as “a rare disorder of motor function characterized by involuntary stiffness of the axial muscles and superimposed painful muscle spasms, which are often induced by fright or emotional stimuli,” according to the Mayo clinic.
Dion — who hasn’t performed live since March 2020 — told Kotb that amid her health issues, stepping away from music and singing — the only career she’s known — was as arduous as her path to recovery.
“It’s been very difficult, very painful, challenging, scary,” Dion told Today anchor. “I spent my entire life in the music industry being an artist and loving every moment of it. That passion will never disappear.”
And this isn’t just idle talk. The “All By Myself” singer shared that although she can’t yet specify exact dates or details, she is promising fans that she will return to the stage, even if it means crossing heaven and earth to do so.
“I will return to the stage even if I have to crawl, even if I have to talk with my hands, I will go, I will go,” she said. “I am Celine Dion because today my voice will be heard for the first time, not just because I have to or because I have to. It’s because I want it and I miss it.”
She added: “I can’t wait.”
Ahead of Tuesday night’s special airing, NBC released a clip of the conversationwhich came a year and a half after Dion revealed his diagnosis.
In the clip, Dion explained what it’s like to sing amid her health battle, noting, “It’s like someone is strangling you. It’s like someone is pushing your larynx here.”
The condition, Dion said in the clip, causes parts of her body to spasm, and was once so severe that she broke a rib. In the interview with Kotb, she elaborated that this has also presented itself in other parts of her life, including her hands locking up while cooking, leaving her unable to move.
“It could be in the abdominal area. It could be in the spine, in the ribs. But it seems like if I point my feet, it stays there,” Dion said. “Or if I cook, my fingers or hands will stay in position. It’s crampy, but it’s like you’re in the position where you can’t unlock them.”
Fans will get an inside look at Dion’s health journey in I am: Celine Dionthe Prime Video documentary series that will be released on June 25th.
“It’s not difficult to put on a show, you know? It’s hard to cancel a show,” the mother of three said in the trailer. “I’m working hard every day, but I have to admit, it’s been a struggle. I miss people a lot, I miss them. , I’ll crawl. But I won’t stop.
ET I spoke to Kotb before the broadcast of her interview with Dion, and she shared this as many fans of the singershe “didn’t know how bad” Dion’s health difficulties were.
“I didn’t know the extent of the disease. I didn’t know how debilitating it was for her,” Kotb said. “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.”
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