I Am: Celine Dion documentary reveals brutalness of singer’s health battle with stiff-person syndrome

When Celine Dion revealed in December 2022 that she had been diagnosed with stiff-person syndrome (SPS), it almost sounded like a made-up affliction.

A neurological disorder so rare, it affects only one in a million people and Dion is, so far, the most high-profile person to ever disclose they have it.

Filmmaker Irene Taylor had signed on to direct a documentary about Dion before she knew the resulting movie would be a raw, honest and, at times, harrowing look up close at the Canadian chanteuse’s challenges with a condition that attacks her muscles, affecting every aspect of her physicality.

“I had no idea what the film would be about,” Taylor told The Nightly. “And when Celine’s manager called me one day and said, ‘Look, I need to talk to you about something’, and then told me there’s something mysteriously wrong with her.

“‘We don’t know what it is, but it’s undeniable, we cannot get to the bottom of it and I’m sorry we didn’t tell you earlier.’ I remember my response in that moment was, ‘Oh, the film just went like this to like this,” Taylor said while signalling with her hands that the focus had shifted from a wide-ranging story to one that had narrowed.

“If you imagine the iris of a lens, it just got a lot more focused.”

I Am: Celine Dion is releasing next week on Amazon Prime Video, a one-hour and 42-minute documentary with unfettered access to Dion who generously shares her story with the audience.

There are no graces, filters or obfuscations. Only tears, truths and, often, moments of levity.

A tour through a collection of her archives in a Nevada warehouse brings out stories of the ingenuity of her stage costumes while glimpses of her shoe collection, Sharpie drawer, meticulously folded socks and her feeding her Labrador, Bear, shades in the contours of an ordinary and extraordinary life.

You’re transfixed when she describes how she, a shoe lover, will make any pair sized between six and 10 fit if she wants to — even if she has to curl her toes under to do it. Anecdotes that might make Mariah Carey or Jennifer Lopez seem like a diva only make Dion more endearing.

Dion was adamant that the only voice in the story of her life would be hers — there are no talking heads — and you get the sense of a woman who has always been most herself when she’s onstage performing.

She tells you how her voice has been the conductor of her life, that she’s always been led by it and the opportunities it provided. There’s no guile or arrogance in this, just faith.

She visibly cracks and she tears up when she reveals about how much she misses the experience of being in front of her fans, of the people who come to her shows, of the feeling of giving them something to remember.

SPS has meant she can no longer do live performances. Her last stage show was in 2019, and before that, as SPS started to affect her body, there had been cancelled performances.

The most confronting moment in the documentary comes near the end, Taylor’s cameras present to capture a visceral and brutal SPS episode. Dion has just finished recording a song for the film Love Again (which was not easy) and was wrapping up for the day when the attack came on.

In close-ups, I Am: Celine Dion documents her seized fingers, her unmoving feet. She has no control over her body and her medical team try to manoeuvre her into a better position while also giving her a nasal spray to alleviate the symptoms.

The most bracing aspect is her face, frozen in pain as tears roll down her nose. She can’t speak. She can barely squeeze the hand of those looking after her. The episode passes.

Taylor remembered that day clearly. “I think I must have been palpably out-of-sorts,” she recalled. “Because Celine, just as she was leaving that night, she was getting in her car to go home, and she just took my hand and sort of assured me, like, ‘You OK?’.

“I must have been showing a little bit of my nerves. Then when I got back to my Airbnb with my team, we were all pretty stunned. I called one of my producing partners and told him what happened, walked him through it.

“And had a glass of wine.”

Taylor was shaken, and so will be the audience when they see the scene. This is how stiff-person syndrome manifests, and it’s awful.

Taylor said the Dion you see in the film is the genuine Dion, it was not a performance for the cameras.

There’s been no shortage of celebrity docos in recent years — some of them illuminating, some of them vanity projects. And maybe it’s by virtue of the fact that Dion is contending with what the others are not but there is an honesty in I Am: Celine Dion that gives the film something most of the others lack: purpose.

Dion attended the premiere of her film in New York this week, the first time she’s walked a red carpet since she made her diagnosis public. There was a standing ovation and she teared up as she stood in front of an audience.

It’s as if Dion has made good on the promise she made in the film, “I miss it so much. The people, I miss them. If I can’t run, I’ll walk. If I can’t walk, I’ll crawl. I won’t stop.”