One of the most affecting moments in I Am: Céline Dion, a documentary about the singer’s battle with stiff-person syndrome (SPS), comes towards the end when she goes into a seizure. Her feet contract, and her whole body goes rigid, as she moans, prone on a bed – it’s distressing to watch.
Eventually, her physiotherapist administers Valium until she comes around, disoriented and distressed. “It makes you feel so embarrassed,” she says. “To lose control of your body like that.” As someone who also suffers from seizures (I am epileptic) I found it extraordinarily brave of Dion to allow this footage to be shown. A seizure feels profoundly humiliating and I hope very few people will ever see me like this. But Dion is putting it out there to the whole world.
Dion, 56, announced that she was living with SPS in 2022 after being forced to cancel her Vegas residency and tour dates due to the condition. It is an autoimmune and neurological disease so rare that it only affects one in a million people. It can cause progressively worse muscular spasms, and has made it impossible for Dion to sing as she once did. Really, this documentary is less about the obvious traumas – seizures, the times Dion has found herself unable to walk – and more about how the queen of power ballads navigates a life without singing.
She confesses here to years of denial. We see her turn the mic to audiences in wobbly moments on stage in an attempt to disguise them.
Archive footage of old interviews and performances are spliced with Dion now, make-up free, hair drawn back, talking in her Vegas mansion about how the SPS symptoms first appeared 17 years ago, when her voice suddenly went strangely high one morning. The spasms, from her throat to other parts of her body, grew in frequency and intensity, until that terrible realisation a few years ago that she could no longer hide it.
“Before SPS my voice was the conductor of my life […] I think I was very good,” she sobs. She has seen some improvement with medication, but it’s clear that the old Dion is gone for good.
What’s unusual about this film is how vulnerable Dion allows herself to appear, often looking close to despair. This is not the type of triumphant story we so often see in celebrity docs (hello, J Lo’s self-important The Greatest Love Story Never Told). Dion is a sad person, who misses singing like a runner might mourn an amputated leg.
She comes across as phenomenally likeable – always polite and friendly to her staff, grateful for her fans, and kind and loving with her teenage children. Funny and self-deprecating too, as we see in an old interview with Jimmy Fallon where she does an impression of the musical artist Sia singing the lullaby “Hush, Little Baby”. But although Dion comes across as heroic, this never becomes a typical hero’s journey. She – and we – are permitted to feel robbed.
There’s a fair bit of footage of her on stage, belting out “My Heart Will Go On”, but far less than you’d expect about her past. A mere five minutes is devoted to her upbringing as the youngest of 14 children in a financially poor but musically enriched household in Québec, and her marriage to René Angélil, her one-time manager and father to her three children (he died in 2016).
Perhaps director Irene Taylor took the view that everyone is familiar with Dion’s past already, but as a non-Dion obsessive, I would have enjoyed more of that. The provenance of genius is always a fascinating thing.
But the rawness of her pain and the sheer joy Dion takes in singing – whether in front of millions of people or just to her physiotherapist as she does mere moments after that seizure, belting out “Who I Am” by Wynn Starks – is quite something. “What a song,” she declares.
What a voice, even now. What a woman.
‘I Am: Céline Dion’ is streaming on Prime Video
