Celebrity News

Céline’s courage through stiff-person syndrome

The singer opens up about the cruel disorder that is silencing her
Celine Dion in front of a press wallImages: Getty

Céline Dion has delighted fans by appearing at the New York premiere of her documentary I Am: Céline Dion. She was accompanied by her doting son René-Charles Angélil.

The appearance comes after the singing icon, 56, vowed earlier this month that she would return to the stage, despite revealing in 2022 she had been diagnosed with stiff-person syndrome. She says her three children – René-Charles, 23, and twins Nelson and Eddie, 13 – have been “her light” as she deals with the rare disorder.

“I barely could walk at one point and I was missing very much living,” says the Canadian-French singer. Her beloved husband Rene Angélil died in 2016 from throat cancer when Nelson and Eddie were just five years old. “My kids started to notice. I let them know, ‘You lost your dad, but Mum has a condition and it’s different. I’m not going to die. It’s something that I’m going to learn to live with.”

Stream I am Celine Dion in New Zealand on Prime Video from 7pm, June 25. Subscribe here for a 7-day FREE trial to Prime Video.

Celine Dion with her late husband, Rene

The superstar revealed that all three children are incredibly supportive. The twins have even run through drills with her and her physical therapist so they know what to do when she experiences a “crisis episode”.

She explains, “We have panic buttons in the house and they know how to put me on my side. The idea of telling them and showing them, it was not to frighten them. It’s for them to know, ‘I’m your mum and it’s my responsibility. You’re old enough to understand I might need your help.’”

Stiff-person syndrome is an autoimmune neurological condition that causes muscle stiffness and painful spasms that come and go, and worsen over time. It can lead to an inability to walk due to a lack of reflexes. Noises can also trigger a reaction or fall, devastating the legendary live performer.

Céline Dion with husband René and their three sons
Céline in happier times, with husband René and their three young boys.

Earlier this month, the My Heart Will Go On hitmaker said she had been struggling with symptoms for some time and has suffered muscle spasms strong enough to break her bones.

“I had broken ribs at one point because sometimes when it’s really severe, it can break a rib,” she reveals.

She has also experienced muscle spasms in her throat.

“It’s like somebody is strangling you. Like someone is pushing your larynx,” she shares. Céline then adds that she can only speak at a certain pitch when the agonising spasms hit.

“But it can also be in the abdominal area. In the spine,” she adds, while trying to describe what happens to her hands.

Thanks to her sons, joined here by Sir Mick Jagger, Céline will never be All By Myself.

“It’s cramping, but it’s in a position of, like, you cannot unlock them.”

I Am: Céline Dion releases this week on Amazon Prime Video. It covers her life from when she was first diagnosed with the illness and her struggles with it. She says it shows her “journey from discovering my condition to learning how to live with and manage it, but not to let it define me”.

The “eternal optimist”’ has been determined to return to the stage ever since she ended her historic 16-year Las Vegas residency in 2019 and had to cancel her planned world tour for her album Courage in May 2023.

At the time, she said, “It’s not fair to you to keep postponing the shows and even though it breaks my heart, it’s best that we cancel everything now until I’m really ready to be back on stage again.

“I want you all to know, I’m not giving up… and I can’t wait to see you again!”

Celine and son René-Charles at the documentary premiere
René-Charles accompanied his mum to her doco’s premiere.

In February, Céline received a standing ovation when she made a surprise appearance at the 2024 Grammy Awards.

“When I say I’m happy to be here, I really mean it. From my heart,” she said as she took to the stage to present the Album of the Year award to Taylor Swift.

“Those who have been blessed enough to be here at the Grammy Awards must never take for granted the tremendous love and joy that music brings to our lives and people around the world,” she told the delighted audience.

And the singer is still determined to continue doing what she loves. She insists that stiff-person syndrome will never dampen her indomitable spirit.

“The disease didn’t take anything away from me,” she says. “I’m going to go back on stage, even if I have to crawl. Even if I have to talk with my hands, I will.”

Where can I watch ‘I Am: Celine Dion’ in New Zealand? 

I Am: Celine Dion will premiere on Tuesday, June 25 on Prime Video.  Subscribe here for a free 7-day trial. 

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