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Celine Dion Talks About Life With Stiff-Person Syndrome: “I Have to Deal With This, and I Am”

Celine Dion has made few public appearances since revealing in 2022 that she had been diagnosed with stiff-person syndrome, a rare neurological disorder. But the singer turned out in New York on Monday evening to debut her highly anticipated Prime Video documentary, I Am: Celine Dion, which chronicles her battle with the condition.

Celine-Dion

Photo: Getty

“This is by far the biggest crowd I’ve had in a few years,” said Dion in a speech in front of guests like Gayle King and Laverne Cox at the premiere, held at Lincoln Center’s Alice Tully Hall. “I’m so proud to be here tonight to share this film with you.”

Dion, who hasn’t performed since 2020, delivered an emotional 10-minute speech before the film began, thanking the documentary’s director, Irene Taylor Brodsky, and her neurologist, Dr. Amanda Piquet, for “solving the mystery” about her health and helping her manage and treat her condition. “She has replaced my fear with hope,” said Dion. She then thanked her 23-year-old son, René-Charles, who stood onstage nearby, and her 13-year-old twins, Nelson and Eddy, for their daily love and support.

When she thanked her fans, Dion began to cry. “Thank you to all of you from the bottom of my heart for being part of my journey. This movie is my love letter to each of you. I hope to see you all again very soon,” she concluded, earning loud cheers and a standing ovation.

 

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Prior to the screening, Dion spoke about her unrelenting determination and resilience while battling Stiff-Person Syndrome. Despite the physical challenges she’s faced, she remains confident that she will be able to return to the stage. “When life imposes something on you, you have two options: You deal with it, or you don’t. I want to deal with it because I am a mother. I have three magnificent kids, and the biggest responsibility for me is to fight for them and to tell them that mom has a condition, but mom is fine. And that is what keeps me positive,” Dion told Vanity Fair on the arrivals carpet. “I have to manage it and tell myself that. There are moments that are hard. I have days that are better than others. It’s not going away. I have to deal with this, and I am.”

Her condition today is “good,” she said, thanks to rehabilitation. “It’s five days a week. Sometimes we push it even further because I’m getting ready to perform,” she said. “My passion as a performer will never disappear. So I am training, rehabilitating myself.” She added that she’s “working hard” to be at the level she once was, when she was easily able to belt out high notes. “I will sing again,” she said. “That’s for sure.”

With the release of her documentary—streaming June 25— Dion hopes her story will bring awareness to the life-altering condition of Stiff-Person Syndrome, and that it will let fans know she didn’t abandon them.

“I’ve been so much about ‘the show must go on, I’m so strong, everything is okay, no problem,’ and I couldn’t do this anymore. I was like, ‘Yes, the show will still go on, but you will know why I was not there yesterday and last year.’ My fans deserve to know why. I did not turn my back on them, and I want this documentary to tell the world and my fans the reasons why I have been away.”

Originally published in Vanityfair.com

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