A year after Celine Dion canceled her tour as she adjusted to living with stiff-person syndrome, the superstar vocalist has now opened up in a primetime interview with NBC News to discuss the fear she felt during the rare neurological condition’s onset, how the decade-long struggle that nearly took her life also tore her apart as she hid the truth and the perseverance she has shown to ensure that she will see the stage again.
Dion, 56, was diagnosed with stiff-person syndrome in 2022 but has revealed that for her, since 2008, its impact has been felt in many ways. The rare disorder causes muscle stiffness and painful spasms, double vision and impaired mobility in some of the roughly one in one million people who have been diagnosed with SPS worldwide.
In an exclusive interview on Tuesday night, Dion told NBC News’ Hoda Kotb that during the decade of testing that it took for doctors to arrive at the correct diagnosis, she became so dependent on the relief provided by increasingly high doses of diazepam, commonly known as Valium, that her growing tolerance led her to take life-threatening amounts of the prescription drug.
“I did not know, honestly, that it could kill me. I would take, for example before a performance, 20 milligrams of Valium, and then just walking from my dressing room to backstage — it was gone,” Dion said, describing how quickly the pain relief would vanish. “At one point, the thing is, that my body got used to it at 20 and 30 and 40… It was relaxing my whole body. For two weeks, for a month, the show would go on. … but then you get used to [and] it doesn’t work anymore.”
At one point she was taking 90 milligrams of the drug daily, she told NBC News, to ease the muscle spasms from the disorder that can be so intense that a person can break their rib as they ripple through the body. Dion shared about the moments when the disorder became obvious to her and the people on her team during her 2008 Taking Chances Would Tour, ahead of a concert in Germany.
“I said to my assistants and to my people, ‘I don’t know if I can do the show. I don’t know what’s happening,’” she recalls in the interview, mimicking her voice at the time. “I was very, very, very scared. And then you panic, and the more you panic, the more you spasm. I went onstage … of course. And I started to sound more nasal.”
There was a decision made that this vocal defect would be “compensated” for by “lower[ing] the songs a little bit with the keys and project[ing] more nasal — and hope.”
Dion, whose Las Vegas residency at Caesars Palace has seen 1100-plus performances over 16 years, has not graced a stage since March 2020; the silver lining of the global COVID-19 pandemic was that Dion was granted the time to gain control of her health and curb the dangerous dependency on medication.
“It was an opportunity for me to take a break,” she said. “Do not be brave. And to be smart. … I stopped everything with the help of doctors. I was weaning off all the meds, and especially the bad ones. I stopped everything because it stopped working.”
Yet, Dion and her team of doctors still struggled to discover what exactly was happening to her body. And even though she was no longer taking the stage, her symptoms persisted.
“It’s very complex. I wanted to — from head to toe — figure it out,” she told Kotb. “And I wanted to also figure out: ‘Is there something that I can do for myself or am I at the end of my career?’”
She also began to shoot a documentary, titled I Am: Celine Dion, with filmmaker Irene Taylor about her experience, which premieres on Amazon Prime June 25. The film sees her open the door to her private life with rare home videos, including her first pregnancy and the birth of her son but also contains what Taylor describes as a shocking moment.
“It shows in real life what this disease is like. It shows how it happens,” Taylor tells NBC News. “One moment she was giggling, and five seconds later, we were in a totally different stratosphere.”
Dion has been working with her team of doctors over the past few years and says she is determined to return to the stage and bring her stunning voice — and hit every note — for her fans, no matter what.
I’m gonna go back on stage, even if I have to crawl, even if I have to. I will,” she told Kotb. “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.”
NBC News’ full interview with Dion can be streamed starting June 12 on Peacock.
