In a heart-wrenching moment from “I Am: Céline Dion,” the superstar faces an unexpected and terrifying episode of stiff-person syndrome (SPS).
Fans gain an unprecedented look into Céline Dion’s struggles over the past few years through her new documentary, available globally on Prime Video. Diagnosed with SPS in August 2022, the 56-year-old singer tentatively but proudly returns to the recording studio in a poignant sequence towards the end of the film.
Shortly after, as part of her ongoing treatment regimen, Dion experiences severe foot pain during a physical therapy session. Her body locks up, signaling intense agony. Her care team administers a diazepam nasal spray, prepared to call 9-1-1 if her spasms worsen.
Dion later reflects on the incident in the documentary, saying, “Every time something like this happens, it makes you feel so embarrassed. I’m not sure how to say it. You know that you dislike losing control of yourself?”
During her PEOPLE cover interview, Dion recalled the harrowing moment captured by director Irene Taylor’s crew. “Overstimulation—whether it be happiness, sadness, sound, or a surprise—can put me into a crisis. That’s one part of the [SPS] condition,” Dion explains. “Before something triggered, I was fine.”
Taylor, who was just two feet away from Dion during the crisis, gained a deeper understanding of the condition. “That was really amazing, not just for Céline to go through it, but for me to see as well,” Taylor remarks. “I continued to film because that is how I work, and I thought we would decide later whether or not to incorporate that into the movie.”
By the time the film reached post-production, Taylor and Dion had developed a close relationship. Taylor felt confident including the footage, saying, “I knew that putting it in the film was really not a risk because she believed in me at that point. I can only thank her for that because she is an open book, was there, and didn’t hold anything back.”
Dion aims to humanize the rare illness through the documentary and contribute to fundraising efforts for scientific research in search of a cure. “Neuropathy has a very broad spectrum. For this reason, I’m making a lot of effort to raise money so that people can speak with their husbands, friends, or neighbors about it,” Dion explains.
Dr. Amanda Piquet, the doctor who diagnosed Dion and director of the University of Colorado Anschutz Medical Campus’s program on autoimmune neurology, adds, “There are many exciting things in store for SPS, and the future looks bright.”
