Céline Dion Shares Raw Video of Stiff-Person Syndrome Crisis in Never-Seen Footage from New Documentary

Céline Dion gives fans an unprecedented look at her struggles in the last few years of her life.

In a heartbreaking scene near the end of her upcoming documentary, I am: Celine Dion (streaming globally on Prime Video), the superstar, 56, is making a temporary — but triumphant — return to the recording studio after being diagnosed with Stiff Person Syndrome in August 2022.

Moments later, she goes to physical therapy (part of her ongoing treatment plan) and begins to feel cramps in her foot.

As her body locks up, it’s clear that Dion is in excruciating pain as her care team administers diazepam nasal spray in the midst of an SPS crisis episode. “If the spasm happens again, we’ll call 9-1-1,” says a member of her team.

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“Every time something like this happens, you feel so embarrassed,” Dion says afterward in the film. “I don’t know how to put it… you don’t like not being in control of yourself, you know?”

During her PEOPLE cover interview, the five-time Grammy winner addressed the terrifying moment captured by director Irene Taylor’s crew.

“One part [SPS] the condition is that overstimulation — whether it’s happiness, whether it’s sadness, whether it’s a sound, a surprise — can send me into a crisis,” says Dion, adding that she “didn’t see” the crisis coming that day. “I was fine , and then something started.”

For Taylor, being “two feet away” from Dion during her crisis helped her understand the disorder more fully.

“It was truly an amazing thing, not only for Céline to experience, but for me to witness,” says Taylor. “I continued shooting because that’s my way of working, and then I decided that we’ll decide afterwards whether to edit it into a film.”

Dion with director Irene Taylor and cameraman.

Courtesy of Prime Video

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While the film was in post-production, Dion and Taylor formed an incredibly deep bond, and “I knew it really wasn’t a risk to put it in the movie because she believed in me at that point,” Taylor says. “She’s an open book, she was really there and didn’t hide anything, so I can really only thank her for that.”

With the film, Dion works to humanize the rare disorder and helps raise money for scientific research in hopes of finding a cure.

“Neuropathy can be very broad. So I try to really get involved in fundraising for people to get counseling and talk about it with their neighbor, their friend, their husband,” says Dion.

Adds Dr. Amanda Piquet, who serves as director of the Autoimmune Neurology Program at the University of Colorado Anschutz Medical Campus and is the physician who diagnosed Dion: “The future for SPS is bright and there’s a lot on the horizon.”

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Source: HIS Education