The new documentary, I Am: Celine Dion, shows the difficult reality of Celine Dion’s life after being diagnosed with Stiff Person Syndrome and her fight to restore both her body and her voice. It’s an unflinching look at what it takes to keep the show going – at any cost.
There’s a line from Glee that sprung to mind while watching the new documentary, I Am: Celine Dion, out today on Prime Video. Lea Michele’s character, Rachel, tells her boyfriend Finn, “I’m like Tinkerbell, Finn. I need applause to live.” It’s easy to see the same obsessive drive as the throughline in Celine’s life – she was born to be a star and to sing on a stage. And from a young age, she did exactly that.
Celine’s revelation in 2022 that she suffered from Stiff Person Syndrome was a long time coming; in the doco, she admits she had been experiencing symptoms for 17 years. But the show must go on. One of her first symptoms was her voice box spasming, affecting her range and her notes. She started taking a whole host of medication and when that stopped working, she kept upping the dose. At one point, she admits, she could have died.
It is easy to look at stars like Celine – stars so powerful that you only need a first name – and think they must have it all. Early on in the film, her twin boys ask her if she could pick anywhere in the world to travel, where would she go? She replies that she has long travelled the world, but never really got to see any of it. “We call that the price to pay,” she says ruefully.
The Price Of Fame
The popular podcast You’re Wrong About, which debunks celebrity and pop culture assumptions, has a long-standing thesis that fame is abuse. In many celebrity documentaries, we see that that is sometimes literal – abusive managers, family who take advantage, a public that viciously turns on you. Celine’s story involves none of that – although the circumstances of her marriage to her manager Rene will always raise eyebrows. In her case, the abuse is the levels of pressure she is willing to put herself through.
Hers is a generational talent; you’d be hard-pressed to find a person alive today who hasn’t sung along to a Celine Dion song, and if you’re a fan of karaoke, you’ve no doubt enjoyed the catharsis of screaming “baby, baby, baby” during a rendition of It’s All Coming Back To Me Now. In many ways, the documentary shows Celine to be one of the last surviving divas and it’s a curious mix of being totally ego free and diva-level bonkers.
In the interview segments of the documentary, she appears with her hair scraped-back, her reassuringly untouched face make-up free and stern. Juxtaposed with that is her performer nature – she has every costume piece she’s ever worn stored away in a warehouse, which she takes the viewer on a tour of, and when she returns to the recording studio towards the end of the film, there are about 30 lit candles behind her.
But the performer and the realist are both in harmony when it comes to showing the brutal realities of her new normal, living with Stiff Person Syndrome. The documentary is unflinching it what it shows – incredibly intimate, devasting footage of the toll this rare disease has taken.
Early on, we see a curled-up Celine immobile on the floor, unable to move or speak, while her physio calls 911. Throughout the documentary, we see the effort it takes to talk, to move, to stretch – often, this footage is spliced against a younger Celine, whirling, twirling and belting along the different stages of her career. This is the peak Celine we all remember – and the standard that current Celine is clearly measuring herself against.
At one point, when she hears a past recording of her voice, Celine stars to cry. “I think it I was very good,” she says softly.
The Spotlight Is Always On
There is so much archival footage on display here – clearly, like so many performers of her level, Celine has been documenting her life for decades. Birth videos, backstage breakdowns… it’s all there.
As a young girl in a poor family, with 13 siblings, Celine’s stratospheric career meant she was always going to be a famous singer and perhaps, there was another, more triumphant documentary in the works. When the documentary’s director and Celine signed on to the project in early 2021, they would have had no idea that just one year later, Celine would be pulling out of her much-anticipated Vegas residency and basically disappearing from the public eye altogether.
In the final act of I Am: Celine Dion, the documentary builds to a key scene where Celine returns to the recording studio for the first time in two years. Losing her voice, she says at one point of the film, has been the hardest part of all.
Surrounded by her shrine-like candles, a cautious Celine starts singing, warming up her injured voice. It’s good – any other performer would be happy with that as a starting effort. But Celine is not any performer – her voice, as she says, “has been the conductor of my life.” The next day, she listens to it and she’s mostly disappointed with herself, but towards the end of the recording, there are glimpses of That Voice returning. Emboldened, Celine heads back into the recording studio to try again, singing stronger as she goes.
In the movie version of this, we would end there – knowing that a return to the stage was imminent, that her heart really could go on. But the documentary is harsher, because life is harsher – straight after the recording session, she goes to a physio session and a foot cramp seizes her quickly. Within a minute, she is in a full-body seizure – unable to speak or move.
It is incredibly violent and disturbing to watch one of our most beloved singers in such clear, unrelenting agony. The only sound she makes is an agonized groan between gritted teeth, the kind of animalistic noise that might give you labour flashbacks. Once she has loosed up following two injections, the physio asks her if she wants them to turn to the cameras off and she grunts no. She’s still committed to putting on a show, even if it’s not the one she wanted to give.
As the film finishes, Celine talks about how desperate she is to return to the stage. “If I can’t run, I’ll walk. If I can’t walk, I’ll crawl. But I won’t stop.” It’s inspirational, yes, but it’s also a reminder of how much pressure this 56-year-old woman is putting on herself to return to form, against an incurable disease so rare it affects one in a million people. There are rumours that Celine will perform at the Paris Olympics and while we all want to see her thrive again, to hear that voice return to its glory, we have seen the behind the scenes of what it will take to get there. Is the cost worth it?
