Her documentary shows the intensity of Dion's pain, including lengthy scenes showing in extreme detail her suffering attacks that not only left her unable to move but also unable to speak.
Celine Dion has vowed that her “passion as a performer will never fade” despite health issues being just a small part of her biggest story.
“I'm not dead,” the singer told AFP on the red carpet ahead of the premiere of the heartbreaking and entertaining documentary. I am: Celine Dion.
The film focuses on her breakthrough career and her recent struggle with a rare neurological disorder that has severely hindered her ability to perform.
“When life throws something at you, you have two choices: you deal with it or you don't want to deal with it,” Dion said.
She called her decision to talk about her illness in the documentary “the greatest gift and the greatest responsibility” and said she hopes it will inspire others with similar disabilities.
Ahead of the premiere, the Quebec-born star switched to his native French, telling reporters: “It's painful to be here, but at the same time I'm very emotional.”
“I still feel like I have a lot of support and love and I hope this documentary will be helpful because it has helped me so much,” she said, expressing her gratitude to her family, medical team and fans.
“Even if it's a never-ending battle, take it one day at a time.”
“The show goes on”
The 56-year-old first revealed in December 2022 that she had been diagnosed with Stiff Person Syndrome, a progressive autoimmune disease for which there is no cure.
She was forced to cancel her remaining shows indefinitely.
Treatment can relieve symptoms that can cause muscle stiffness in the trunk, arms, and legs.
Overstimulation can lead to severe spasms and can also cause the voice to shake uncontrollably.
“The show will go on,” she promised, but said it was important for her to be honest about the physical and mental intensity of her condition.
The film's Oscar-nominated director, Eileen Taylor, told AFP that Dion's only request was to be able to tell her own story in her own words.
“Would that be possible? Instead of other people talking about me?” she recalled the superstar asking.
“It was like music to me as a storyteller,” Taylor said.
“She was so open and so genuine,” the director continued, “in her joys and in her pain.”
Related article: Celine Dion gives rare interview about health
An intimate film chronicling Dion's trials and triumphs
This intimate film features archival footage of the charismatic performer known and loved worldwide, as well as tender scenes of her home life with her children and dogs, adding to a quirky, heartwarming portrayal of Celine as a parent.
But the film also documents the intensity of Dion's pain, including long scenes showing in extreme detail her suffering attacks that not only left her unable to move but also unable to speak.
This shocking episode moved some audience members to tears during the screening.
But the documentary's focus isn't so much on Dion's illness, but her love of her family, friends and music.
Though she is clearly distressed by the loss of the voice she once knew, it's her joy for life and unwavering sense of humour that shines through in the film.
The documentary is a “love letter”: a heartfelt tribute to fans
The documentary about Dion, who has sold more than 250 million albums over her decades-spanning career, will be available globally on Prime Video from June 25.
Earlier this year, Dion made a surprise appearance at the Grammy Awards to present Taylor Swift with the Album of the Year award.
However, since disclosing that she has SPS, she has rarely been seen in public.
Speaking to a packed, enthusiastic Manhattan audience ahead of the screening, Dion likened herself to an apple tree.
She metaphorically speaks throughout the film of how she has always felt the need to produce shiny fruit for the fans who are willing to pay big bucks and wait in long lines to see her perform.
Dion was moved to tears as she said a fan recently messaged her saying, “We're not here for the apples, we're here for the trees.”
“This film is a love letter to each and every one of you,” she said to a standing ovation.
“And I hope to see you all again soon.”
WATCH NOW: Inside Celine Dion's health struggles – stiff-person syndrome spasms, broken ribs and more
