I Am: Celine Dion – A cross between Spinal Tap, Sunset Boulevard and a harrowing medical documentary

Charting her battle with stiff person syndrome, this powerful, vulnerable film shows a side to the superstar we have never seen before

There has never been a music documentary like I Am: Celine Dion, a weirdly compelling yet discombobulating cross between Spinal Tap, Sunset Boulevard and a harrowing medical journey. A day after watching it, I’m still not sure how I actually feel about it.

It is routine for showbusiness documentaries to proclaim that we have never seen their star like this before. In this case, it is actually true. Indeed, I don’t think a major star has ever allowed themselves to be filmed in such exposed and vulnerable situations. We see the Canadian superstar in the full throes of a medical emergency, her body going into rictus, hands twisted, limbs frozen, teeth bared, tears streaming from her eyes as she groans in audible pain.

In 2021, the 54-year-old was diagnosed with stiff person syndrome, a rare neurological disorder only found in one in a million, that attacks the muscular system causing spasms, rigidity, breathing problems, and chronic pain. Crucially for one of the most celebrated and technically gifted singers of our times, it affects her voice, which has become prone to spasming, shifting in range and timbre, exacerbated by a loss of lung power. “My voice was the conductor of my life,” Dion tells the camera in one of many frank and emotional interviews, speaking slowly, deliberately. “Music … I miss it a lot.”

Celine Dion at a New York screening of the documentary "I Am: Celine Dion". Photo / Cindy Ord via Getty Images

That is an understatement. The heaviness of her loss permeates the film. Without her extraordinary vocal ability, Dion is seen in the midst of a full-blown existential crisis, struggling to work out who she is if not a singer. Stripped of makeup, hair tied back in a simple bob, granny glasses perched on her nose, looking much older than the glamorous image usually presented to the public, the star wobbles precariously between despair, denial and defiance that this version of her life and self is over.

Filmed over a year in late 2021 and 2022 during the waning period of the Covid pandemic, the star seems adrift and isolated in a sterile, luxurious mansion in the bleak Nevada desert, attended by masked and silent staff. The only other people we really meet are her two pampered and innocuously pleasant twin sons, Eddy and Nelson (then both 11), who are either clamped into VR headsets or strapped into immersive video-gaming chairs.

Dion is invariably charming, often goofily funny, yet the directorial decision to make her’s almost the only voice we hear creates an atmosphere of self-obsession. She marvels over her cupboards with hundreds of designer shoes. “When a girl loves her shoes, she makes them fit!” Dion declares, in an amusing monologue about fashion fetishism as she tours a 12,000sq ft warehouse where she keeps all her couture costumes, displayed so that she can take a trawl down memory lane in a perfectly maintained museum to herself. “I will sound selfish, but it’s all about me,” she admits, only half joking, during a brief and ultimately traumatic visit to a studio to try and record a new song.

The doco shows a vulnerable side of the superstar, as Celine Dion opens up for the first time about her diagnosis. Photo / Prime Video

Oscar-nominated producer and director Irene Taylor had already begun pre-production on a Dion documentary when the diagnosis was revealed, and so what was meant to be a flattering narrative based around her long-running Las Vegas residency turned into something far more raw and emotional than anyone might have expected, including the participants. “The lie is too heavy now,” Dion confesses, as she reveals the extent of her medical issues and the ways in which they had been covered up over the years.

It is a film filled with tragedy, pathos and unintended comedy, artfully made yet uncertain of its own trajectory. Copious archive footage is beautifully assembled but deaf to tonal disjuncts, cutting from scenes of her late husband’s funeral to Dion melodramatically singing All By Myself on stage in Vegas.

In the wake of her medical emergency, Dion defiantly and even joyously sings along to her own recording of Who I Am, but such a bravura ending is misleading. Every human being faces a waning of their powers as age and mortality take their toll. Dion is experiencing an accelerated health crisis, albeit slightly softened by the privileges of her wealth and fame. It is astonishing that cameras were on hand to capture this in such close detail, and perhaps even more astonishing that such a public figure decided to allow filming to continue. Yet there is little sense of resolution, possibly because the cameras stopped rolling after a year while Dion remains on a journey through the stages of grief, and hasn’t arrived at acceptance yet.

“I still see myself dancing and singing,” she insists. “If I can’t run, I’ll walk. If I can’t walk, I’ll crawl. But I won’t stop. I won’t stop.”