In a truly heartbreaking scene from her upcoming documentary, “I Am: Céline Dion,” the legendary artist opens up about her battle with Stiff-Person Syndrome (SPS). The documentary, which can be streamed on Prime Video, offers an unprecedented look into Dion’s struggles over the past few years.
Towards the end of the film, Céline Dion, now 56, courageously returns to the recording studio after being diagnosed with SPS in August 2022. But in an unexpected turn of events, Dion experiences a terrifying SPS crisis during a physical therapy session. The footage captures the moment when her body locks up, and she endures excruciating pain while her care team administers diazepam nasal spray to help alleviate the crisis.
Dion’s vulnerability is palpable as she reflects on the experience. “Every time something like this happens, it makes you feel so embarrassed,” she admits. “I don’t know how to express it… you don’t like to not have control of yourself, you know?”
During her interview with PEOPLE, Dion shares more about her condition. She explains that the overstimulation of emotions or external stimuli can trigger a crisis. “Whether it’s happiness, sadness, sound, or a surprise, it can put me into a crisis,” she reveals. On that particular day, she didn’t anticipate a crisis occurring. “I was fine, and then something was triggered,” she adds.
Director Irene Taylor, who was present during the crisis, also reflects on the impact of witnessing Dion’s experience. “That was truly an extraordinary thing, not only for Céline to experience, but for me to witness,” Taylor says. She made the decision to include the scene in the documentary to shed light on this rare disorder and help audiences gain a better understanding of SPS.
Through “I Am: Céline Dion,” the artist aims to humanize Stiff-Person Syndrome and raise funds for scientific research towards finding a cure. Dion hopes to encourage open conversations about neuropathy and inspire people to support one another. Dr. Amanda Piquet, Dion’s physician, shares the optimism for the future of SPS research, stating, “The future for SPS is bright, and there’s a lot on the horizon.”
Céline Dion’s courage in sharing her journey with Stiff-Person Syndrome is truly inspiring. Her determination to raise awareness and find a cure for this rare disorder serves as a reminder of the strength that lies within each one of us, no matter the challenges we face.
