Céline Dion is brave enough to show her seizures

One of the most moving moments in I am: Celine Diona documentary about the singer’s battle with stiff person syndrome (SPS), comes towards the end when she suffers an epileptic seizure. Her feet cramp and her whole body stiffens as she lies on the bed moaning – it’s disturbing to watch.

Eventually her physiotherapist gives her Valium until she comes to, disoriented and distressed. “It’s so embarrassing,” she says. “Losing control of your own body like that.” As someone who suffers from seizures myself (I am epileptic), I thought it was extremely brave of Dion to allow these recordings to be released. A seizure is deeply humiliating and I hope very few people will ever see me like that. But Dion is making it available to the world.

Dion, 56, revealed she will be living with SPS in 2022 after the illness forced her to cancel her Vegas residency and tour dates. It’s an autoimmune and neurological disorder so rare it affects just one in a million people. It can cause progressively worse muscle spasms and has left Dion unable to sing like she used to. In fact, this documentary is less about the obvious traumas – seizures, the times Dion couldn’t walk – and more about how the queen of power ballads navigates a life without singing.

Here she admits that she has been in denial for years. We see her turning the microphone towards the audience in uncertain moments on stage to hide this.

Archival footage of old interviews and performances is intercut with Dion, now makeup-free and with her hair slicked back, speaking in her Las Vegas mansion about how the SPS symptoms first appeared 17 years ago, when her voice suddenly became strangely high-pitched one morning. The spasms, from her throat to other parts of her body, became more frequent and intense until she came to the horrifying realization a few years ago that she could no longer hide them.

“Before SPS, my voice was the conductor of my life (…) I think I was very good,” she sobs. With medication, her condition has improved somewhat, but it is clear that the old Dion is gone forever.

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What is unusual about this film is how vulnerable Dion makes herself appear, often almost desperate. This is not the kind of triumphant story we see so often in celebrity documentaries (hello, J Lo’s smug The greatest love story never told). Dion is a sad man who misses singing like a runner mourns an amputated leg.

She comes across as incredibly personable – always polite and friendly to her staff, grateful to her fans, and kind and loving to her teenage children. Funny and self-deprecating too, as we see in an old interview with Jimmy Fallon in which she imitates the musician 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 allowed to feel cheated.

There’s quite a bit of footage of her on stage belting out “My Heart Will Go On,” but far less about her past than you’d expect. Just five minutes are devoted to her upbringing as the youngest of 14 children in a financially poor but musically rich Quebec household, and her marriage to René Angélil, her former manager and father of her three children (he died in 2016).

Perhaps director Irene Taylor felt that everyone was already familiar with Dion’s past, but as someone who is not a Dion fan, I would have enjoyed more of it. The origins of a genius are always a fascinating thing.

But the intensity of her pain and the pure joy Dion feels when she sings—whether in front of millions of people or just for her physical therapist, as she does moments after her seizure, belting out Wynn Starks’ “Who I Am”—is something quite special. “What a song,” she explains.

What a voice, even now. What a woman.

“I Am: Céline Dion” is on Prime Video