There are few music pop stars in the world with the clout of Celine Dion. For more than three decades the Canadian singer has charmed the world with power ballads that are romantic signature tunes among the young and old, across the globe.
That is why her announcement in December 2022 that she was putting her career on hold after being diagnosed with Stiff Person’s Syndrome (SPS) was greeted with shock and disbelief among adoring fans. The disease is a rare neurological disorder that affects one or two people in a million, according to Johns Hopkins Medicine. It causes fluctuating muscle rigidity that can manifest in muscle spasms and falls.
The story of the 56-year-old superstar’s battle against the condition is chronicled in the new documentary I Am Celine Dion which premiered on Prime Video on June 25, 2024.
“Before I got hit by SPS my voice was the conductor of my life,” she says with a smirk. “I was following it, ‘you lead the way, I’ll follow you,’” she explains while gesturing as if to sing.
The film, directed by Irene Taylor, the Oscar nominated US filmmaker who admits that she hardly knew anything about Dion before this project, is an intimate portrayal of the singer, her family life and the rehabilitation from effects of her illness.
In a departure from the typical documentary format, the film relies exclusively on Dion to tell her own story, without accompanying talking heads. It traces her childhood love for music through grainy family home videos as she recalls signing in the kitchen at age 5 for her audience comprising her 13 brothers and sisters in a little town in Quebec.
“My dream is to be an international star and sing all my life,” she states in one of those childhood videos.
That shy girl with a distinctly powerful voice has risen to become a global icon over the course of 27 albums, selling 250 million records, winning five Grammy Awards and two Academy Awards. But that extraordinary success has come against the background of severe health challenges going back further than her public announcement last year.
“Seventeen years ago, I started experiencing voice spasms. I woke up and had breakfast and after breakfast my voice started to go up,” she reveals. “When I try to breathe, my lungs are OK, it is what is in front of my lungs that is so rigid because of SPS.”
She dealt with that condition by pumping a variety of medicines into her system, 280-290 milligrammes of valium a day, according to her, “I don’t mean to sound dramatic but I could have died,” she exclaims. “I needed medicine to function. One more pill, two more pills, five more pills, too many pills.” She had to explain to her fans why her shows were getting cancelled and also deal with rampant rumors about her gaunt appearance.
The most emotionally draining scene is when Dion experiences a full-body attack with her body jerking in spasms in the middle of a physio therapy session as the cameras roll. Apparently after watching the rough cut of the documentary, she was adamant that that portion be retained to show the debilitating effects of SPS.
Musically, the story is interspersed with archival footage of an exuberant Dion performing on stage in stark contrast to her frail physical condition during the making of the documentary.
“When I was in control of what I love to do, I could record three songs a night,” she states. When you come in studio and you record, it sounds great, but when you go on stage it sounds greater because there is no mistake on stage, because there is humanity, bonding, emotions and when you forget your words, you panic for a second and out of the blue they (audience) start to sing.”
Her humorous side comes across whether showing off her massive collection of shoes and stage costumes or her famous “beat it, Spiderman” retort at the end of the video for the song Ashes from the action film Deadpool 2.
Celine Dion uses the metaphor of a fruit as she takes stock of her relationship with her fanbase: “I am like an apple tree and people are in line and they all leave with a basket of apples. My branches are starting to fall sometime and those branches are starting to produce a little less apples but it still has many people in line.” Then she concludes: “I don’t want them to wait in line if I don’t have apples for them.”
The soundtrack album I Am: Celine Dion released alongside the documentary features 20 songs, including her greatest hits like The Power of Love, My Heart Will Go On, Because You Loved Me, I’m Alive and A New Day Has Come and seven original scores composed by acclaimed cellist Redi Hasa.
