Revealing new footage in an upcoming documentary highlights the profound challenges faced by the legendary singer Céline Dion following her diagnosis with Stiff Person Syndrom (SPS). At 56 years old, Dion bravely shares her personal battle with this rare autoimmune neurological disorder, which leads to severe muscle stiffness and painful spasms. The documentary, which captures her struggles, is eye-opening and at times, deeply distressing.
SPS symptoms are not only unpredictable but tend to worsen progressively. In a particularly heart-wrenching scene, Dion is captured during a severe seizure that lasts an agonizing 10 minutes. Surrounded by medical professionals during a consultation, she gasps for air, visibly in crisis, as the team works swiftly to ease her discomfort.
Following the intense episode, a visibly shaken Dion wraps herself in a blanket, reflecting on the vulnerability of the moment.
“Every time something like this happens, it makes you feel so embarrassed and, you know, like to not have control of yourself…” she shares candidly.
Despite the immense challenges posed by her condition, Dion’s resolve remains unshaken. “I still see myself dance and sing,” she asserts. “I always find plan B and plan C, you know. That’s me. If I can’t run, I’ll walk. If I can’t walk, I’ll crawl. But I won’t stop. I won’t stop.”
The documentary titled I Am: Céline Dion was directed by Irene Taylor, who shared insights with PA about the ethical considerations of filming such personal moments. Initially hesitant, Taylor was encouraged by Dion herself not to seek permission to film, which led to the inclusion of the raw footage in the documentary. “So in that first 30 seconds, I was not focused on filming, I was the sound person and my cinematographer was there. But there were several people in the room and everyone was doing what they were trained to do to help her, they’d all been given medical training on what to do if this happens,” Taylor explained.
The decision to keep filming was a difficult one, but Dion’s encouragement and Taylor’s sensitivity to the situation resulted in a documentary that is both respectful and real. “What you see in this final film is exactly what I showed her the first time. She didn’t want me to change it at all,” Taylor added.
Dion’s health challenges forced her to cancel her world tour, a decision shared with fans last year. “I want you all to know, I’m not giving up… and I can’t wait to see you again!” she announced, hopeful about the future.
I Am: Céline Dion is now available for streaming worldwide on Prime Video, offering an intimate look at the superstar’s journey and her unyielding spirit in the face of adversity.