Celine Dion is getting candid about her health. In an interview with Hoda Kotb on Tuesday — portions of which aired on the Today show ahead of the scheduled primetime special — the 56-year-old singer opened up about living with Stiff Person Syndrome, her desires to return to performing, and the quiet struggles she faced alone.
According to the legendary “My Heart Will Go On” crooner, the first sign of her medical issues cropped up 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 overall tightness that ultimately took more than 10 years to diagnose. The medical mystery led to the singer doing “crazy things to keep going,” including taking major doses of diazepam — a.k.a. Valium.
“Let’s put it this way, we tried a lot of things,” she told Kotb. “Trying a lot of things when you don’t know what you have can kill you.”
At the height of her pain and health struggles — after the tragic back-to-back cancer deaths of her husband, René Angélil, and her brother, Daniel Dion — the singer recalled taking as much as 90 milligrams of Valium per day to push through the pain and continue performing.
“I didn’t want to stop,” Dion shared of trying to avoid pausing her performances. “I did not know honestly that it could kill me. I would take like, for example, before a performance, 20 milligrams of Valium and then just walking from my dressing room to backstage… it was gone [from my system].”
According to the Recovery Village, the maximum recommended dosage of Valium is 40 milligrams and higher dosages can lead to serious health complications, potential overdoses and in some serious cases, death.
“90 milligrams of Valium can kill you,” Dion told Kotb. “You can stop breathing. And at one point, the thing is that my body got used to it at 20 and 30 and 40 [milligrams] until I went up and I needed that [dosage]. It was relaxing my whole body, but for what? For two weeks, for a month?”
She continued, “Okay, the show must go on, you go, ‘I’m fine.’ But then you get used to it.”
Luckily, Dion told Kotb that with medical intervention, she was able to wean herself off the pain management drug — something that can be dangerous, as well. After coming off the “bad meds,” she says the pain became unbearable, but that it also allowed her to set her sights on getting to the bottom of her symptoms. For her, not finding an answer was just as scary as finding one.
“No one wants to go and see a doctor and say, ‘I hope they find something.’ Everybody says, ‘I hope I’m fine,’ but I was going to be fine if they find something,” she explained. “That was the thing. But what are they gonna find?”
After years without 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 axial muscles and superimposed painful muscle spasms, which are often induced by startle or emotional stimuli,” according to the Mayo Clinic.
Dion — who has not performed live since March 2020 — told Kotb that amid her health struggles, stepping away from music and singing — the only career she has ever known — has been just as strenuous as her road to recovery.
“It’s been very difficult, very painful, challenging, scary,” Dion told the Today anchor. “I spent all my life in the music industry being a performer and loving every moment of it. This passion will never go away.”
And that is not just lip service. The “All By Myself” singer shared that while she cannot specify dates or exact details yet, she is promising her fans that she will get back on the stage, even if that means crossing heaven and earth to do so.
“I’m gonna go back on stage even if I have to crawl, even if I have to talk with my hands, I will, I will,” 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 need to. It’s because I want to and I miss it.”
She added, “I just can’t wait.”
Prior to the special airing on Tuesday evening, NBC released a clip of the conversation, which came a year and a half after Dion revealed her diagnosis.
In the clip, Dion explained what it feels like to sing amid her health battle, noting, “It’s like somebody’s strangling you. It’s like somebody’s pushing your larynx this way.”
The condition, Dion said in the clip, causes parts of her body to spasm, and it has previously been so intense that she broke a rib. In the interview with Kotb, she elaborated that it has also presented itself in other parts of her life, including the locking of her hands while she’s cooking, leaving her unable to move.
“It can be in the abdominal. It can be in the spine, in the ribs. But it feels like if I point my feet, it will stay in it,” Dion said. “Or if I cook, my fingers or my hands will get in position. It’s cramping, but it’s like you’re in the position of you cannot unlock them.”
Fans will get an inside look at Dion’s health journey in I Am: Celine Dion, the Prime Video docuseries that’s set to be released June 25.
“It’s not hard to do a show, you know? It’s hard to cancel a show,” the mom of three (Dion welcomed son René-Charles and twins Eddy and Nelson with Angélil in 2001 and 2010, respectively) said in the trailer. “I’m working hard every day but I have to admit, it’s been a struggle. I miss it so much, the people, I miss them. If I can’t run, I’ll walk. If I can’t walk, I’ll crawl. But I won’t stop.”
ET spoke with Kotb ahead of the airing of her interview with Dion, and she shared that like many of the singer’s fans, she “didn’t know how bad” Dion’s health struggles were.
“I did not know the extent of the illness. I did not know how debilitating it was for her,” Kotb said. “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.”
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