Celine Dion has always been an open book on stage, but her new documentary, “I Am: Celine Dion,” reveals a deeply personal and previously hidden side of the iconic singer. The film, set to premiere on Amazon’s Prime Video on June 25, delves into Dion’s battle with stiff person syndrome, a rare neurological disorder that has profoundly impacted her life and career.
The documentary offers an unfiltered look at the 56-year-old’s private struggles with the condition, which causes muscle rigidity and severe spasms, affecting her ability to perform. As Dion navigates this challenging journey, the film captures several poignant moments that highlight her resilience and vulnerability.
One of the most striking revelations in the documentary is Dion’s admission that she wasn’t always forthcoming with her fans about her health issues. She confesses that many of her concert cancellations, previously attributed to common illnesses, were actually due to her more serious condition. Dion recalls moments on stage where she masked her struggles by blaming technical issues, tapping on the microphone as if it were at fault. “The lie is too heavy now,” she admits, acknowledging the burden of hiding the truth.
In a lighter segment, Dion humorously reflects on the strict regimen she has followed to maintain her powerful voice. She contrasts her disciplined lifestyle with that of rock stars who indulge in partying and sleepless nights. “They drink, they party, and they don’t sleep. They’re super cool people,” she says, miming an air guitar. “Me, I have like, water. And I sleep 12 hours.”
The documentary also delves into the devastating impact of stiff person syndrome on Dion’s voice, her most cherished instrument. She describes the desperate measures she took to regain control, including increasing doses of Valium. “I needed medicine to function. One more pill, two more pills, five more pills. Too many pills,” she recounts. “I don’t want to sound dramatic, but I could have died.”
Dion uses a powerful metaphor to describe the pressures of her career and the toll her illness has taken. She likens herself to an apple tree, providing sustenance to those who seek it. “I give them apples — the best — and I shine them. And they all leave with a basket of apples,” she says. “My branches are starting to fall sometimes. Get crooked. And those branches are starting to produce a little less apples. But there’s still many people in line. I don’t want them to wait in line if I don’t have apples for them.”
The film’s climax captures a harrowing moment when Dion experiences a severe spasm in her left foot, escalating into a full-body attack. Her sports medicine therapist, Terrill Lobo, explains that her body and brain are overstimulated, leading to a crisis. The scene shows Dion curled up on an examination table, her body twitching uncontrollably, tears in her eyes. “Every time something like this happens, it makes you feel so embarrassed,” she says, expressing her fear of a similar incident occurring on stage.
Despite these challenges, Dion’s determination shines through. In the same room where her attack took place, she stands up, cranks up the speakers on a mobile phone, and sings along to Wyn Starks’ “Who I Am.” “What a song,” she sighs, embodying her indomitable spirit.
In an exclusive interview with TODAY’s Hoda Kotb, Dion opens up about her experience with stiff person syndrome, her decision to go public with her diagnosis, and her hopes for the future. She reveals that her voice is getting stronger and expresses her belief that she will return to the stage. “I believe in myself, in my bravery,” she says, though she acknowledges that she may still need to cancel performances occasionally. “I know that I have a good team right now (who will say), ‘No show tonight.’ It’s going to be hard. It will probably happen.”
Dion’s journey with stiff person syndrome has been a long and arduous one. She first noticed symptoms in 2008 while on tour in Germany. Over the years, she experienced muscle spasms, balance issues, and trouble walking, all while caring for her late husband, René Angélil, who passed away in 2016. It wasn’t until the pandemic that she began to seek answers, eventually receiving her diagnosis in December 2022.
Since then, Dion has been working tirelessly with her medical team, undergoing various therapies to manage her condition. She remains determined to return to the stage, even if it means adapting her performances. “I’m going to go back onstage, even if I have to crawl. Even if I have to talk with my hands, I will,” she tells Hoda. “It’s because I want to and I miss it.”
As Dion continues to navigate her health challenges, she remains hopeful and focused on her recovery. Her documentary, “I Am: Celine Dion,” offers fans an intimate and inspiring look at her journey, showcasing her unwavering strength and resilience in the face of adversity.
