Céline Dion documentary trailer shows her tearing up as she struggles with stiff person syndrome
Céline Dion is ready to open up about the health struggles she has been enduring for years.
In a trailer for her new upcoming documentary, “I Am: Céline Dion,” the music superstar begins share how being diagnosed with stiff person syndrome has affected her life.
"I have been diagnosed with a very rare neurological disorder and I wasn't ready to say anything before," she says in the clip. "But I'm ready now."
"I see my life and I love every piece of it. When a girl loves her shoes, she always makes them fit," she continues.
"It's not hard to do a show. It's hard to cancel the show. I'm working hard every day. But I have to admit, it's been a struggle. I miss it so much."
In a new interview with Vogue tied to the release of the trailer, the singer detailed her early days with the condition.
"Quite rapidly, I was having difficulty controlling my voice,” Dion told the magazine. “It would go really high, and then it would spasm. So the first thing you do as a singer? Well, you go straight to the ENT.”
Doctors looked at her vocal cords but saw no signs of problems, so she pushed through and finished her tour, another Las Vegas residency and then five more tours. Along the way, she also started experiencing muscle stiffness and "having a hard time walking. I was holding on to things," Dion explained.
Finally, in 2020, when the pandemic hit, she had time to search for answers. “After years and years of playing hide-and-seek with myself, with my friends, with my family, with my kids, I no longer wanted to be brave. I had tried as long as I could. It was time for me to be smart," she recalled.
After numerous medical tests, she was diagnosed with stiff person syndrome. "It probably sounds very strange to say this to you, but when I was diagnosed, I was happy. I was finally able to move with the wave, not against it," Dion said.
Her documentary, “I Am: Céline Dion,” described as a “love letter to her fans,” will be available to stream on Amazon Prime Video June 25.
Ahead of its release, the singer will also be sitting down in an exclusive primetime special with TODAY's Hoda Kotb, airing June 11 at 10 p.m. ET, her first broadcast interview since announcing her diagnosis.
The “My Heart Will Go On” singer revealed her illness in an emotional Instagram video posted December 2022. The serious neurological condition is a rare disorder that can cause stiffness and muscle spasms. Stiff person syndrome can impact a person’s mobility, including their ability to sing.
In her 2022 announcement, she said that she needed to cancel her tour, which was supposed to kick off in February 2023.
“While we’re still learning about this rare condition, we now know this is what’s been causing all of the spasms that I’ve been having,” she said at the time. “Unfortunately, these spasms affect every aspect of my daily life, sometimes causing difficulties when I walk and not allowing me to use my vocal (cords) to sing the way I’m used to.”
She returned to the platform in May 2023 to share that she had to cancel the rest of her world tour due to her health problems.
“It is with tremendous disappointment that we have to announce today the cancellation of the Courage World Tour,” she wrote on Instagram in a now-deleted post.
In an additional statement on her website, she said, “I’m so sorry to disappoint all of you once again. I’m working really hard to build back my strength, but touring can be very difficult even when you’re 100%. 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.”
She added, “I want you all to know, I’m not giving up … and I can’t wait to see you again!”
Dion made a rare public appearance at the 2024 Grammy Awards in February to present album of the year. The audience welcomed her to the stage with a thunderous applause. “Thank you all, I love you right back,” she said after seeing the standing ovation. “When I say I’m happy to be here, I really mean it from my heart.”
She has recently been active on social media, sharing a photo with stylist Law Roach the evening of the music awards show. On May 15, she uploaded a backstage snap with Mick Jagger and her sons at The Rolling Stones concert in Las Vegas.
The trailer for her upcoming film arrives after a recent interview with Vogue France where she spoke about living with stiff person syndrome.
“I hope that we’ll find a miracle, a way to cure it with scientific research,” she told the magazine in April. “But for now I have to learn to live with it.”
This article was originally published on TODAY.com
