Celine Dion on surviving Stiff Person Syndrome: ‘Nothing is going to stop me’

Celine Dion said she does not know when she will be able to return to her world tour after being diagnosed with Stiff Person Syndrome (SPS), but clarified “there’s one thing that will never stop, and that’s the will”.

The Canadian singer cancelled her Las Vegas residency due to health concerns in 2021, before revealing her SPS diagnosis in December 2022 and cancelling her Courage World Tour.

The Vogue France cover star, whose best-known hits include My Heart Will Go On from the film Titanic, said that she is learning to live with the disease, but hopes “that we’ll find a miracle, a way to cure it”.

“Five days a week I undergo athletic, physical and vocal therapy,” the 55-year-old told Vogue France.

“I work on my toes, my knees, my calves, my fingers, my singing, my voice… I have to learn to live with it now and stop questioning myself. At the beginning I would ask myself: ‘Why me? How did this happen? What have I done? Is this my fault?’.

“Life doesn’t give you any answers. You just have to live it. I have this illness for some unknown reason.

“The way I see it, I have two choices. Either I train like an athlete and work super hard, or I switch off and it’s over, I stay at home, listen to my songs, stand in front of my mirror and sing to myself.”

The 56-year-old said she had chosen to work with her “body and soul, from head to toe” alongside her medical team, who she described as a “gift”.

“What’s more, I have this strength within me. I know that nothing is going to stop me,” Dion said, before confirming her goal is to see the Eiffel Tower again.

The main symptoms of SPS are muscle stiffening and spasming and there is currently no cure for the disease, but there are ways for it to be treated – including through the use of muscle sedatives and relaxants.

Dion also addressed returning to complete her world tour.

“For four years I’ve been saying to myself that I’m not going back, that I’m ready, that I’m not ready… As things stand, I can’t stand here and say to you ‘Yes, in four months’.

“I don’t know… My body will tell me. On the other hand, I don’t just want to wait. It’s morally hard to live from day to day.

“It’s hard, I’m working very hard and tomorrow will be even harder. Tomorrow is another day. But there’s one thing that will never stop, and that’s the will. It’s the passion. It’s the dream. It’s the determination,” she added.

The superstar, who also sang Think Twice and It’s All Coming Back To Me Now, received a standing ovation when she made a rare public appearance at the Grammy Awards earlier this year to present the album of the year prize.

In her Life In Looks video for Vogue France, she described the standing ovation as “very, very touching”.

“It was very nerve-wracking, but at the same time, a big honour,” Dion said.

“That magic. That excitement. To see the fans, to see the crowd. To see show business again. It took a lot, a lot out of me.”

A new Prime Video documentary titled I Am: Celine Dion is set to detail her battle with SPS, with footage captured by Oscar-nominated filmmaker Irene Taylor over more than a year.

Dion has sold more than 250 million albums during her 40-year career, earning five Grammys and the Billboard Music Award lifetime achievement Icon Award.