Celine Dion withdrew from the stage to treat her stiff person syndrome, a rare condition. She explained why she made a film from it, available this Tuesday, June 25 on Prime Video.
A return, but not in song. After several years away from the spotlight, Céline Dion unveils the documentary this Tuesday, June 25 I am: Celine Dion, a Prime Video feature film centered on his fight against stiff person syndrome. A neurological disease which affects her voice and which forced her to put her career on hold.
“I want to be on stage tomorrow. But if I do too much, I can have a seizure. The body stiffens, the voice, everything. Everything stops working. For a few minutes or hours”, had -she confided during an interview with TF1 on June 16.
Symptoms incompatible with the frantic pace to which the singer has subjected herself throughout her career. Just since the first signs appeared in 2008, Celine Dion has carried out six tours and seven years of residency in Las Vegas. It was only in 2020, when the pandemic forced her to slow down, that she relied on the medical profession to seek a diagnosis. And since the announcement of her illness, the singer had walled herself in an almost impenetrable silence.
Until today: as the release of this film by Irene Taylor approaches, Céline Dion opened up as she had not done for years in long interviews to talk about her new daily life. She notably mentioned the reasons which pushed her to make a documentary.
Celine Dion has postponed numerous concert dates between 2021 and 2022, causing concern among her fans. It was only in December 2022 that the singer revealed that she suffered from stiff person syndrome, through an Instagram video, by canceling the last dates of her tour Courage World Tour.
“Lying, for me, was too heavy a burden to bear,” she explained in an exclusive interview with the American channel NBC. “Lying to the people who brought me to where I am today, I was no longer capable of it.”
More recently, the singer explained why she was keen to make a film about it: “I have been an open book all my life. With my sorrows and my joys. I have always told everything. I can’t change, that’s how I’m made,” she explained on TF1’s 8 p.m.
“I had no choice to leave the stage because my vocal cords have always led the way. I had no choice, the disease took control of my vocal cords and my entire body.”
“(I said to myself), ‘I’m afraid for my life, for my kids, my team, my fans. I’m 56 years old and they’ve given me an incredible life. Every time I’ve invited them , they were there. They sang with me, for me, welcomed my children…’ (…) What I’m experiencing is something that will never go away. so far into these lies (…) That’s enough. If it’s something that’s going to take me away, the newspapers must not say that I’m dead, even though I’m alive.”
• To raise awareness
One of the stated objectives of this documentary is to raise awareness of stiff person syndrome. Celine Dion expressed this desire last January in a press release about the film.
“I wanted to document this part of my life, in order to help those who have the same diagnosis as me,” she said, adding that she wanted to “raise awareness of this little-known disease.”
“These last few years have represented a great challenge for me,” she also explained in this press release relayed by the Guardian. “(This is) my journey, from discovering my illness to learning to live with it and manage it, without letting it define me.”
Thus, the one who waited “almost 17 years” before consulting wanted the spectators to learn from her error, as she explained during her interview with TF1: “It’s also one of the reasons why I did this documentary I want them to know. Don’t experience pain alone. Talk to your neighbors, your friends, your lovers, your children, your husband… It’s about accepting your weaknesses but also talking about them. and consult. Don’t suffer alone.”
• For herself
“I wanted to make a documentary about it because it’s not something quick, and you can’t provide a quick cure for what I’m going through,” she explained to Vogue last month.
“It’s not just about some vocal exercises and doing Pilates. It’s physical and vocal, emotional and spiritual rehab – the whole shebang. And I want this story to be told with class. I respect my fans and I respect myself enough to let them know the whole truth.”
“I wanted to belong to myself for once. Let me say that I am, perhaps for the first time, Céline Dion.”
