'I Am: Celine Dion' documentary on Prime Video: Devastating, terrifying look at Stiff Person Syndrome battle
"You don’t like to not have control of yourself," the Canadian icon says in the film, now on Prime Video
Hearts broke around the world in December 2022 when Canadian legend Celine Dion announced that she had been diagnosed with Stiff Person Syndrome, a rare neurological disorder that affects the central nervous system, characterized by painful muscle spasms and stiffness, and can include seizures. The newly released documentary I Am: Celine Dion (now on Prime Video) is an intimate, vulnerable and gut-wrenching look at the artist's life with an illness that forced her to stop performing and now can rarely leave her home.
The film's director, Irene Taylor, combines interviews with Dion at her Las Vegas, Nevada home with archival video of the artist, including footage of her as a child and powerful performances throughout her career. But at the core of story is an exploration of who Dion is when she can't do the very thing that brings her joy.
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The dream for Dion is exactly what we see her say in an interview early in her career: "My dream is to be international star and to be able to sing all my life." She is an international star, and now the goal is to hopefully sing again.
“There’s been moments where I had to go to the studio and I knew they wanted Celine Dion. Who’s Celine Dion?" the artist says in the documentary. "Celine Dion is the one who sang … the highest note ever, ... and she’s the best."
'I needed medicine to function'
There's something special and beautiful about watching someone who was truly born to be a singer, an artist and performer, but that's also what's particularly devastating about I Am: Celine Dion.
As Dion explains in the documentary, when she tries to breathe her lungs feel fine, but in front of her lungs she feels "rigid." That's when Dion starts to try to sing and her voice cracks, and she instantly starts crying. You can see it in her face how distressing it is for Dion to not be able to sing like she used to.
"It's very difficult for me to hear that and to show this to you," Dion says with tears in her eyes. "I don't want people to hear that."
Dion is incredibly candid about what she's been experiencing for the past few years, identifying that 17 years ago she started to experience "voice spasming" and recalling one morning she woke up, ate breakfast, and her voice started to "go up."
"It freaked me out a little bit," Dion says in the film. "I was scared. I didn’t know what to do."
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The artist goes on to reveal that as she continued performing, her voice started to deteriorate, which meant increasing the medication she took.
"My adrenaline, my heartbeat, my pressure. I’m like, ‘The dream is about to come true again for me tonight,'" Dion recalled. "But then I feel a spasm and my voice goes up. The medicine was burned out, it was gone."
"I was to 80 milligrams to 90 milligrams of Valium a day. That’s just one medicine. I don’t want to sound dramatic, but I could have died. ... I was taking those medicines because I needed to walk, I needed to be able to swallow. I needed medicine to function. One more pill. Two more pills. Five more pills. Too many pills. Show must go on."
But as we know, eventually the show couldn't go on any longer and in May 2023 Dion had to cancel all her remaining tour dates.
"Lying. I can’t lie anymore. From a sinus infection to an ear infection, to whatever," Dion says in I Am: Celine Dion.
"Sometimes I would point my microphone towards the audience and I would make them sing it. There’s moments where I cheated and I tapped on the microphone, like it was the microphone’s fault. ... There’s also moments where we had to stop the show. Quick change and I never came back. The lie is too heavy now."
Celine Dion: 'I won’t stop'
The most difficult moment in I Am: Celine Dion is near the end of the documentary when we see Dion have some joy recording the song "Love Again." But shortly after her foot starts to spasm, which turns into an absolutely terrifying seizure. We see it all. We hear her groaning, wailing and sobbing, unable to speak and barely able to move.
When she recovers from the seizure, Dion asks if the excitement of recording sparked the attack. Her therapist informs her that is the case, because her brain was too "overstimulated."
"What am I going to do?" Dion says in response. "If I can’t get stimulated by what I love, and then I’m going to go on stage and your’e going to put the pulse oximeter on me and you’re going to turn me on my back?"
It's absolutely devastating to watch a moment of joy result in so much pain, with Taylor exposing such a significant moment of vulnerability for Dion in that moment.
“Every time something like this happens, it makes you feel so embarrassed," Dion says. "You don’t like to not have control of yourself."
But while I Am: Celine Dion is an intimate look at Dion's reality with Stiff Person Syndrome, it's also a celebration of the life she's lived to date and how important she is to so many people around the world. We're left with a deep understanding of exactly how resilient Dion is, now and forever.
"If I can't run, I'll walk. If I can’t walk, I’ll crawl, but I won’t stop,” Dion says at the end of the film.
If I can't run, I'll walk. If I can’t walk, I’ll crawl, but I won’t stop.
