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Céline Dion on touring again: 'I just don't know - my body will tell me'

Céline Dion details life with Stiff Person Syndrome - pictured here at the 66th annual Grammy Awards - February 2024
Céline Dion details life with Stiff Person Syndrome - pictured here at the 66th annual Grammy Awards - February 2024 Copyright AP Photo/Chris Pizzello
Copyright AP Photo/Chris Pizzello
By David Mouriquand
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The singer opens up about her life ever since her career was put on hold due to a rare autoimmune condition, Stiff Person Syndrome (SPS), in 2022.

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Céline Dion has given an update on her battle with the autoimmune condition that has put her career on hold and meant she has been absent from the stage for four years.

Diagnosed in autumn 2022 with a rare neurological condition known as Stiff Person Syndrome (SPS), the 56-year-old says she’s on the comeback trail.

In a lengthy interview with Vogue France magazine, she describes her relentless daily battle with SPS.

The disease, she stresses, "is still with me and always will be (...) I have to learn to live with it".

The Québécois singer shares her despair in the early stages of the extremely rare autoimmune neurological disorder, which affects an estimated 8,000 people worldwide.

“At the beginning I would ask myself: why me? How did this happen? What have I done? Is this my fault?”

She continued: “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. I’ve chosen to work with all my body and soul, from head to toe, with a medical team. I want to be the best I can be. My goal is to see the Eiffel Tower again! (…) I have this strength within me. I know that nothing is going to stop me.”

Céline Dion presents the award for Album of the Year during the 66th annual Grammy Awards - Feb 2024
Céline Dion presents the award for Album of the Year during the 66th annual Grammy Awards - Feb 2024AP Photo/Chris Pizzello

Dion, who reappeared in public on 4 February 2024 at the last Grammy Awards ceremony, where she presented the award for Album of the Year to Taylor Swift, describes the "athletic, physical and vocal therapy" she undergoes five days a week.

Often misdiagnosed as Parkinson’s disease, multiple sclerosis, fibromyalgia, or anxiety, SPS is a rare neurological condition which causes rigid muscles and painful spasms. According to the National Institute for Neurological Disorders and Stroke (NINDS), it is characterised by “abnormal postures, often hunched over and stiffened” and affects twice as many women as men.

There is no known cure, but it is treatable through anti-anxiety drugs, muscle relaxants, anti-convulsant medication, pain relievers and immunoglobulin therapy, which can help reduce stiffness and lower sensitivity to noise, touch and other stressors.

Céline Dion on the cover of the latest Vogue France magazine
Céline Dion on the cover of the latest Vogue France magazineVogue France

Dion took a trip down memory lane and described the influence of singer-songwriter Jean-Jacques Goldman, who was instrumental in giving her a big break in France: "He taught me to leave room for the music and the lyrics. You can't sing in French with words in English, you can't sing in English with words in French. So he showed me how to let the words be supported by the music so that I could imagine the story.”

“Singing in English takes a lot of embellishment, it takes everything to impress and I love that,” she adds. “Singing in French takes a lot out of you because you want to be more subtle. Sobriety is difficult.”

When asked whether she will return to the stage and tour again, the singer remains cautious: "I can't answer that. Because for four years I've been saying to myself that I won't go back, that I'm ready, that I'm not ready..."

She concludes: "Today, I can't say to you: 'Yes, in four months' time. I just don't know... My body will tell me.”

Additional sources • Vogue France

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