Celine Dion gets candid about stiff-person syndrome journey

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Originally appeared on E! Online

Céline Dion is opening up on her health journey.

Nearly two years after the “My Heart Will Go On” singer shared her diagnosis with stiff-person syndrome, her battle is being explored in the documentary “I Am: Celine Dion” Prime Video documentary, set to release next month. And among aspects of her health journey she’s opening up about is how it nearly cost her her life.

“Céline Dion at some point — she is now much better — but at some point she almost died,” Hoda Kotb, whose interview with the singer airs ahead of the documentary’s release, explained on Today May 23. “It was so jarring to me and moving — I couldn’t believe what they were able to capture in that documentary.”

While fans will have to wait another month for Céline’s full story, the documentary trailer, also released May 23, teases what is to come.

“I have been diagnosed with a very rare neurological disorder,” she says in the trailer. “And I wasn’t ready to say anything before. But I’m ready now.”

Céline Dion’s Sweet Moments With Her Kids

Amid clips of Céline’s visits with medical professionals, mixed in with nostalgic videos of her performing earlier in her career, the “I’m Alive” singer, who recently noted she is working like an athlete to maintain her health, gives crushing details of her affliction in a voice over — and notes the hardest part of it all is her inability to perform.

“It’s not hard to do a show now, it’s hard to cancel a show,” she says. “I’m working hard every day, but I have to admit — it’s been a struggle. I miss it so much. The people. I miss them. If I can’t run, I’ll walk. If I can’t walk. I’ll crawl. I won’t stop.”

Throughout her health journey, Céline’s goal of returning to music appears to motivate her as she looks back at her past gigs, reflecting, “I think we did create our own magic.”

And amid her difficult health battle, the five-time Grammy winner makes it clear she does not let her rare diagnosis define her.

“I see my life, and I love every piece of it,” she continues, seemingly going on to describe her life through a metaphor. “When a girl loves her shoes, she always makes them fit — from six to ten — I love them. Give it to me. Here we go.”

While Céline — who shares sons René-Charles, 23, and twins Nelson and Eddy, 13 with her late husband René Angélil — has largely stayed out of the spotlight amid her health journey, she made a grand return to the music stage in February to present Taylor Swift with the 2024 Grammy for Album of the Year.

“Thank you all,” Céline, who was met with a standing ovation when she took the stage, escorted by René-Charles, she told the crowd. “I love you right back. When I say that I’m happy to be here, I really mean it from my heart.”

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