I Am: Celine Dion reveals star’s life-threatening disorder in devastating detail

A devastating new doco reveals what this musical A-lister has been battling behind the scenes for years. WARNING: Spoilers.

WARNING: Spoilers.

Much of director Irene Taylor’s new documentary I Am: Celine Dion focuses on the effect Dion’s diagnosis of Stiff Person Syndrome has had on her most famous asset, her voice.

We watch as Dion pines to go back on tour, struggles to record new music, and ponders what she will do without her famously elastic vocal range.

But it’s only in the film’s final minutes that we’re shown, in devastating detail, how the rare neurological disorder also threatens her life.

The film, set for Australian release on Prime Video next Tuesday, follows Dion as she deals with a formal diagnosis for an issue that had been plaguing her for 17 years.

The condition causes muscle spasms and stiffness, and strangles her voice at the higher and lower end to the point where, in 2020, she was forced to cancel all future live performances.

She hasn’t sung live since, instead living a quiet life in Las Vegas with her children, focusing on her health and seeking treatment for the disorder.

The illness has greatly reduced Dion’s famously huge vocal range.

In the film’s harrowing climax, we watch as Dion dips her toe back into the music business, struggling through a recording session for a new song.

She gets through it, but can’t hide her frustration as the notes she used to hit so easily remain just out of reach.

After the session, she meets with her physical therapist, and notes that one of her feet has started to spasm.

Within minutes, her entire body is in seizures, her face contorted in pain as staff rush to offer medical assistance, wondering aloud at what point they should call 911.

Dion’s medical team rush to help her as a Stiff Person Syndrome episode sets in.

The camera never leaves her as we watch the whole episode play out: Dion, her usual animated self just minutes ago, now appears trapped inside her own body, unable to move or even speak. Tears pour from her eyes, her brow furrowed in fear.

As her team quickly administer some drugs to relax her muscles, Dion starts to wordlessly wail. It’s unclear whether she’s in pain, or simply overcome with sorrow at her predicament.

The scene is difficult to watch.

Unfolding over 10 minutes on screen, it makes for devastating viewing, and would feel exploitative were Dion not insistent the cameras remain in the room to capture her entire ordeal.

And in a moment that encapsulates the heartbreak and joy of the film, as Celine slowly comes out of the crisis, her physical therapist puts on a song to soothe her.

Soon enough, she’s passionately singing along, once more losing herself in the music she loves so much.

It’s an astonishing climax to a film that’s equal parts heartbreaking and hilarious, all thanks to Dion herself.

As anyone who’s watched her interviews in the past (or the endlessly quotable ‘Celine Dion is Amazing’ YouTube compilation) would know, she is such an entertaining hang: Goofy, eccentric and always completely herself.

A compelling mix of daggy earnestness and camp (a visit to her giant warehouse full of costumes elicited gasps at my screening), and all with a surprising lack of vanity for such a scrutinised star.

There’s a distinct Aussie flavour to the doco, too, as one segment of the film is given over to Dion’s eternal appreciation for John Farnham.

Celine grapples with the notion she may never tour again in the doco.

A scene in which she laments she’s never been able to live the life of a rock star, drinking whiskey in bars until 4am and getting on stage the next night with a raspy voice, is made funnier when we realise who Dion is holding up as a bastion of rock n’ roll excess: You’re The Voice-era John Farnham. Ozzy Osbourne he is not.

There is no happy end to I Am Celine Dion, despite the star’s insistence she will one day return to the stage. By the film’s end, it’s apparent that her struggle with Stiff Person Syndrome will be a difficult journey for many years to come.

Ultimately, it’s a film about struggling with a loss of identity. Whatever you might think of her music, nobody could ever deny Dion’s talent. She’s always been the singer who can go from 0 to 100 without breaking a sweat. In one telling moment, she describes her career, her body, her life, as basically being a vessel for that voice.

Take that away, Dion wonders, and what does she have? Perhaps in the reception to this film, she’ll at least be heartened to realise she means much more to her fans than ‘just’ those high notes.

I Am: Celine Dion will be available to stream on Prime Video from Tuesday June 25.

Originally published as I Am: Celine Dion reveals star’s life-threatening disorder in devastating detail