With a look of both resolve and nervousness in her eyes, the little girl cautiously entered the glaring lights. The megastar asked her, “Do you know ‘You Raise Me Up?’” while handing her the microphone. Around the arena, cheers could be heard, announcing the amazing event that was about to take place.
The young girl nodded, her voice as gentle as a whisper but as powerful as a symphony, the opening notes of the beloved song filling the arena as she mustered all her bravery. The audience erupted in a collective cry of surprise at that point, feeling both shocked and respectful at the amazing potential housed in such a delicate body.
Céline Dion Shares Raw Video of Stiff-Person Syndrome Crisis in Never-Seen Footage from New Documentary
In a devastating moment from “I Am: Céline Dion,” the famous person battles through an unexpected and horrifying SPS episode.
Fans are getting an unheard-of glimpse inside Céline Dion’s tribulations during the last few years of her life.
After being diagnosed with stiff-person syndrome in August 2022, the 56-year-old superstar tentatively but proudly returns to the recording studio in a devastating sequence towards the end of her new documentary, I Am: Céline Dion (available for streaming globally on Prime Video).
Shortly after, as part of her continuous treatment regimen, she makes her way to physical therapy and her foot starts to hurt.
Dion’s body locks up, indicating that she is in severe agony while her care team gives her a diazepam nasal spray during the SPS crisis episode. One of her teammates says, “We’ll do a 9-1-1 if she goes back into a spasm.”
In the movie, Dion subsequently remarks, “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?
The five-time Grammy winner thought back on the horrifying moment that director Irene Taylor’s crew captured on camera during her PEOPLE cover interview.
“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, adding that she “did not see” the crisis episode coming that day. “Before something triggered, I was fine.”
Taylor’s understanding of the condition deepened when she was “two feet away” from Dion during the crisis.
Taylor remarks, “That was really amazing, not just for Céline to go through it, but for me to see as well.” “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.”
Dion and Taylor had developed a close relationship by the time the movie was in post-production, and according to Taylor, “I knew that putting it in the film was really not a risk because she believed in me at that point.” “I really can only thank her for that because she is an open book, was there, and didn’t hold anything back.”
Dion is attempting to humanize the uncommon illness through the movie and contribute to fund-raising efforts for scientific studies in the pursuit of a solution.
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.
Adds Dr. Amanda Piquet, the doctor who diagnosed Dion and director of the University of Colorado Anschutz Medical Campus’s program on autoimmune neurology: “There are many exciting things in store for SPS, and the future looks bright.”
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