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Celine Dion Opens Up About Her Battle with Stiff Person Syndrome

Celine Dion performs onstage with a grey background

Robyn Lawrence


Released on the 17 June, the documentary I Am: Celine Dion opens the doors to the legendary singer’s once-private life away from the stage. 

Not only does this documentary celebrate Dion’s career, but it also explores her battle with Stiff Person Syndrome (SPS). It’s a look into how medication, physiotherapy and medical trauma have shaped her life.

What is Stiff Person Syndrome?

Stiff Person Syndrome is a rare neurological disorder that causes severe spasms and muscle stiffness. The painful muscle contractions can affect any part of the body, most commonly starting in the back and legs.

Dion’s battle with the condition

The documentary follows the build-up to Dion announcing her diagnosis to the world in December 2022, as well as the aftermath of it.

Dion reveals to her fans she’s been dealing with spasms for nearly 20 years. She discloses she often takes life-threatening amounts of Valium just to get through her performances. Dion demonstrates the restraint the condition has put on her voice. Singing a high note from her song ‘I Wanna Know What Love Is’, she is unable to reach the iconic note, subsequently breaking down in tears. Her bravery to show the world she can’t do what she was once known for is heartbreakingly courageous.

The Celine we will always love

The 50-time lix Award winner makes her own coffee, vacuums her own floor and lounges around in front of the camera with no makeup on. This rare insight into her life helps the audience to see Dion as an ordinary person, who just happened to have an extraordinary career.

“It almost signifies to the audience that Dion the singer still exists”

Archival footage is shown throughout the documentary of her iconic performances. It almost signifies to the audience that Dion the singer still exists. It flips back and forth between past and present footage, demonstrating the changes in her life. It’s edited in a way that creates a sense of empathy and respect for Dion as a person, as well as her outstanding career. The star takes us on a tour of her warehouse filled with memories, from iconic red carpet looks to pictures her children had drawn as kids.

The heartbreaking finale

Her struggles with SPS are noticeable throughout the documentary, yet it leads up to one harrowing moment when Dion succumbs to a seizure. It feels invasive and almost wrong to witness someone in their most vulnerable state. An intimate moment between the singer and her team, she’s laid in a fetal position, unable to communicate with her voice that is loved by so many.

“As Dion cries during this scary moment, her fans must definitely be crying with her”

Known for standing on stage performing some of the most iconic songs ever written, she’s only able to produce sounds similar to moans. As Dion cries during this scary moment, her fans must definitely be crying with her.

The documentary is haunted by sadness and grief throughout. Dion grieves the performer she once was, at times revealing her sadness in a way that is painstakingly raw. Simply put, the documentary poignantly exposes what illness can do to the body. She’s wary but not frightened to show the world what she goes through. But it would be wrong to ignore her tenacity to keep fighting, despite the creeping uncertainty of her condition. The willpower she has to keep going, and to get back to doing what she loves most, is a bone-deep determination that everyone can be inspired by.

The documentary strips back the layers of fame that once surrounded Celine Dion, to reveal a woman who is keen to keep fighting on.

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Featured image courtesy of celebrityabc on Flickr. No changes were made to this image. Image licence found here.

Currently studying BA Journalism and Media at the University of Leeds. Love writing about nature, all things lifestyle and discussing important topics!

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