Celine Dion reveals all about her secret health battles in new Prime Video documentary (Image: Getty Images for L’Oreal Paris)
Canadian megastar Celine Dion has sold out stadiums, topped worldwide charts and broken records with her award-winning voice. But for the last two years, the singer has been robbed of her talent by stiff person syndrome (SPS) – a devastating neurological disorder that causes spasms, muscle rigidity and chronic pain.
“Last year, I got to a point where I couldn’t walk,” she says in a new TV documentary, breaking down in tears. “I was losing my balance a lot and I can’t use my voice yet. Music – I miss it a lot.”
Celine, 56, opens up about her struggles with SPS in her Amazon Prime Video special I Am: Celine Dion . Filmed after she was forced to cancel her 2021 Las Vegas residency, the 100-minute documentary sees Celine talk about her health, the impact SPS has had on her career, and the reality of her day-to-day life.
In one harrowing scene, Celine visits her physiotherapist after her first day of singing in two years and suddenly suffers a seizure. “She’s spasming and it could lead to a crisis,” her physio tells the camera, as Celine begins wailing and shaking. After being given emergency medication and coming to, Celine says, “Every time this happens it makes you feel so embarrassed. You don’t like to not have control of yourself.”
Celine Dion breaks down in tears over her health condition in I Am: Celine Dion (Image: Prime Video)
Celine has revealed that she’s been diagnosed with stiff-persons syndrome (Image: Prime Video)
Celine announced in December 2022 that she had been diagnosed with stiff person syndrome – however, she admits that she first began experiencing symptoms nearly two decades earlier.
“I started to have voice spasms 17 years ago, that’s how it started,” she says. “After having my breakfast, my voice started to go up and it freaked me out.”
It’s then that the muscle spasms began to affect her ability to sing. “When I try to breathe, my lungs are fine. It’s what’s in front of my lungs that is rigid because of SPS. I know what I want my voice to do,” says Celine, and as she sings, her voice cracks. “That’s what happens and it’s very difficult for me to hear.”
Celine began taking Valium to keep the spasms at bay while on stage. “I needed my instrument and it was not working. We started to elevate the medicine – I was on 80-90mgs of Valium a day,” she says. “I don’t want to sound dramatic but I could have died. I was taking those medicines because I needed to be able to walk, I needed to swallow, I needed the medicine to function. One more pill, two more pills, five more pills. The show must go on.”
Eventually, the symptoms became too much for Celine to cope with and she began cancelling her shows. “I was lying about why I cancelled – from a sinus infection to an ear infection,” she says. “Sometimes I would point my microphone to the audience and I would make them sing. There are moments where I cheated and I tapped on the microphone like it was the microphone’s fault. But the lie is too heavy now.”
Celine suffers a seizure in one harrowing scene (Image: Prime Video)
Celine with her late husband René Angélil, who died aged 73 from throat cancer in 2016 (Image: Getty Images)
Struggling with the prospect of being unable to perform, Celine draws strength from opera singer Maria Callas. Celine’s late husband René Angélil, who died aged 73 from throat cancer in 2016, bought her a necklace that once belonged to Maria. “My husband offered this to me,” she explains tearfully while holding the jewellery. “It was owned by Maria Callas. I hope she gives me some strength – I think she will.”
Celine has three children with René – René-Charles, 23, and twins Eddy and Nelson, 13. Being forced to stay at home to recover gave Celine more time to spend with them, and in the documentary she reveals that she’s kept every souvenir from their childhoods.
“When my kids were still very young babies, I was holding onto those moments so much. Their first toy – every piece I remember and I cherish,” she says. “They were important, they’re still important.”
After a “tough” few years raising her kids on her own, Celine attributes her ability to keep going to her late mother Thérèse, who brought up 14 children in Quebec, Montreal with little funds.
“My mum was a very strong person,” she says of Thérèse, who died in 2020 aged 92. “Sometimes, there was nothing left in the fridge but she never told us that we had nothing to eat. She would make dough and there were carrots – she made a few beautiful hot pies. She said that she prayed that she wouldn’t hear, ‘Mum, what is that?’ Mum is the superhero. We only felt love, affection, attention – I have that in me. That is my greatest foundation.”
Celine has three children with René – René-Charles, 23, and twins Eddy and Nelson, 13 (Image: AFP via Getty Images)
Despite suffering with SPS, Celine is as vivacious as ever – and in the documentary enjoys showing off her extensive shoe collection. “When a girl loves her shoes, she always makes them fit,” she laughs. “Every time I went to a store and I loved shoes, they would say, ‘What size are you, ma’am?’ I say, ‘No, you don’t understand. What size do you have? I’ll make them work.’ I walk the shoe, the shoe doesn’t walk me!”
Having spent two years managing her condition, Celine is slowly beginning to return to singing, but she’s taking baby steps. “I’m not quite sure if I’m going to be capable of singing but I can’t live in doubt,” she admits. “Emotionally, it’s very difficult.”
She adds, “People have paid a lot of money around the world to see our shows. I feel like I’m an apple tree and people are in line to leave with a basket of apples. My branches are starting to fall off but there’s still as many people in line. I don’t want them to wait in line if I don’t have apples for them.”
Although Celine has doubts about her future performances, she’s determined to keep working. “Maybe I can sing another kind of repertoire, but it’s going to be their choice whether they like me or not,” she says. “I always find a plan B and C. If I can’t run, I’ll walk. If I can’t walk, I’ll crawl. But I won’t stop.”
