Céline Dion Reveals New Footage of Stiff-Person Syndrome in Documentary

In a poignant moment captured in her forthcoming documentary, ‘I Am: Céline Dion’, streaming globally on Prime Video, the iconic superstar tentatively returns to the recording studio following her diagnosis of stiff-person syndrome (SPS). Soon after, during a physical therapy session as part of her ongoing treatment, Dion begins to experience spasms in her foot. The scene unfolds with palpable tension as her body stiffens, signalling an excruciating SPS crisis.

Amid the crisis, Dion’s care team administers diazepam nasal spray, a moment documented with stark realism. “If she goes back into a spasm, we’ll do a 9-1-1,” a member of her team remarks, highlighting the severity of the situation. Reflecting on the distressing episode in the documentary, Dion opens up about the emotional toll: “Every time something like this happens, it makes you feel so embarrassed. I don’t know how to express it … you don’t like to not have control of yourself, you know?”

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During her interview with the magazine, the five-time Grammy winner delves into the unpredictability of SPS, noting how overstimulation—whether from emotions or external triggers—can trigger such crises unexpectedly. She candidly admits, “I did not see the crisis episode coming that day. I was fine, and then something was triggered.”

Director Irene Taylor, who captured the crisis scene up close, shares her perspective on witnessing Dion’s vulnerability. “Being two feet away from her during that moment really helped me understand the disorder more fully,” Taylor reflects. 

By the time the film entered post-production, Taylor and Dion had forged a profound connection, solidified by Dion’s willingness to share her journey unreservedly. “She is an open book, and she was really there and holding nothing back, so I really can only thank her for that,” Taylor acknowledges.

Through ‘I Am: Céline Dion’, Dion aims to humanise stiff-person syndrome and raise awareness and funds for scientific research toward finding a cure. “Neuropathy can be really wide,” Dion emphasises, underscoring her advocacy efforts. “That’s why I’m trying to be really involved in raising funds and encouraging people to discuss it openly with their community.”

-Sushmita Sarkar