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NEW YORK, NEW YORK - JUNE 17: Céline Dion attends the "I Am: Celine Dion" New York special screening at Alice Tully Hall on June 17, 2024 in New York City. (Photo by Roy Rochlin/WireImage)© Roy Rochlin

I AM: CELINE DION review — Celine Dion's harrowing struggle to get back onstage amid Stiff Person Syndrome

The "My Heart Will Go On" singer famously stepped out of the spotlight in 2023

Bryony Gooch
US Writer
Updated: June 19, 2024
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There is a moment in I Am: Celine Dion where the singer explains that she has spent her entire life following that incredible voice of hers. She's emotional as she reflects on the times she's had, performing for crowds all over the world, because of this unbelievable talent she has. 

"I miss music", she says, weeping. At the time of filming, Celine Dion had postponed performing indefinitely due to her experience of Stiff Person Syndrome, a neurological disorder she had been secretly grappling with for over 17 years. 

WATCH: Celine Dion gets emotional in I AM: CELINE DION documentary
Directed by Academy Award nominee Irene Taylor, I Am: Celine Dion will be available on Prime Video on 25 June

What started with a vocal spasm in her throat one morning has led her unable to sing with the same ease and gusto she used to - and there was a point where she couldn't walk without losing her balance. She explains the pressure of going into the studio where music producers expect Celine Dion, and she asks: "Who is Celine Dion?"

I AM: CELINE DION is an emotional watch© Premier PR
I AM: CELINE DION is an emotional watch

In many ways, this is what the documentary attempts to answer: who is Celine Dion now that she can't do the thing she loves the most in the world? Director Irene Taylor follows the Queen of Power Ballads around her palatial Las Vegas residence with her sons and staff, showing her idyllic yet empty life. But what's most interesting is the deconstruction of her legacy juxtaposed with her life right now, as she journeys to get back on stage.

Celine takes us to a large warehouse that archives all of her old stage outfits, red carpet gowns, and her children's old toys and drawings. She explains that these things were important in the past, and they remain important now. There is a sense that she is holding on to this archive of her performances because she hopes to one day return to it. 

Celine remains passionate about singing© Premier PR
Celine remains passionate about singing

But with the realization that Celine has been grappling with SPS for 17 years, clips of her old performances are suddenly recontextualized with the news of her long-time struggle. Small moments on stage that once seemed quirky are now framed as moments her voice was spasming, whether it's a specific way she sang a phrase or a moment she decided to get the audience to sing. 

Despite medicating with valium in order to perform with her disorder, there were times when the medication would exit her system before she could even go on stage. They would have to come up with an excuse for the cancellation, whether it was a sinus infection or another illness. Not even 80-90 mg of valium per day could counter the adrenaline she would get before performing, which led to her spasms.

Celine Dion waving at the camera with Rene© ullstein bild Dtl.
Rene proposed secretly in 1991

"I could have died", she said, reflecting on the "too many pills" she took. The news came out in the end because "the lie is too heavy now".

The most harrowing moment comes towards the end where she has an episode, moments after she has been singing. Celine had been in the studio for two days - an attempt to get back to being able to perform, where she fittingly sings "Love Again", the title track for the eponymous motion picture which also reflects her own progress to get back on stage. As she suddenly experiences a spasm, her whole body is paralyzed. It's a claustrophobic, nightmare moment as the camera gives an up-close shot of Celine, clearly distressed by her condition as she can't move at all. 

As she eventually exits this state of despair, her sports therapist plays a song - and she sings along, with a resounding message for fans: Celine will keep on trying to sing, no matter how restricted she is by Stiff Person Syndrome.

Directed by Academy Award nominee Irene Taylor, I Am: Celine Dion will be available on Prime Video on 25 June

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