‘I watched her body go stiff, her gaze froze’
◆ I Am: Celine Dion gives a rare insight into the singer’s debilitating neurological condition and her desperation to continue making music, writes Rachael Davis
With five Grammys, two Oscars, the Billboard Music Award lifetime achievement icon award and more than 250 million albums sold during her 40-year-career, there’s no denying Celine Dion’s talent, passion, drive and love for music.
But things have been more difficult in recent years, since a diagnosis of stiff person syndrome (SPS), a rare neurological disorder that causes progressive muscular stiffness and spasms so strong that they can cause broken ribs, has profoundly affected her ability to sing and perform.
Since disclosing her SPS diagnosis in December 2022 as she cancelled her Courage World Tour, the My Heart Will Go On singer, 56, has spoken increasingly openly about the impact the illness has had on her life and career.
Now, in a powerful documentary directed by Oscar-nominated filmmaker Irene Taylor, Dion is showing fans the reality of living with SPS and the battles she fights every day to not only continue singing, but to get through daily life.
In the year that Taylor and her crew spent making I Am: Celine Dion, the singer only left her house three times – once to go to the recording studio for her first attempt in three years to record a song.
It was a tough day for the singer, one which ended with Taylor witnessing first hand the terrifying effects of SPS.
“Whereas she had once been able to record a handful of songs in a single day, we filmed her persevere through just one, her voice failing her, then surprising her,” says Taylor, 53, whose 2009 documentary The Final Inch, about the global effort to eradicate polio, was nominated for an Academy Award.
“By the end of the second day, her joy was palpable. However, just minutes after leaving the studio, she felt a muscle spasm in her foot. The exhilaration and stimulation of making all that music triggered a terrifying neurological response.
“Within moments, I watched her body go stiff in front of our camera, her gaze froze and she was suddenly unable to speak. Holding the boom microphone and camera, Nick (Midwig, director of photography) and I were just inches from her face. I feared she wasn’t breathing.”
“Forty minutes after her attack began, she sat up, confessing embarrassment, consenting to our camera remaining in the room. Her therapist put on one of her favourite songs, Who I Am by Wyn Starks.
“As the music began, I watched Celine’s body roar back to life, her eyes filling with ecstasy as she sang along, arms outstretched, giving to herself, and the handful of us in the room with her that day, the kind of once-in-a-lifetime performance that makes her, truly, Celine Dion.”
At the New York premiere of I Am: Celine Dion, the Canadian superstar received a standing ovation, taking the stage to deliver a speech that left her in tears.
“This movie is my love letter to each of you,” she said.
“I hope to see you all again very, very soon.”
It is clear from the depth of emotion displayed in the documentary that Dion is heartbroken by the toll her illness has taken on her ability to perform.
“It’s not hard to do a show, you know. It’s hard to cancel a show,” she says in the film. “I’m working hard every day but I have to admit, it’s been a struggle.”
In the years leading up to her diagnosis, Dion tried everything to continue performing.
In an interview on NBC in the US, Dion told presenter Hoda Kotb that living with the condition was “like somebody’s strangling you”.
“It’s like somebody’s pushing your larynx, pharynx, this way,” she said, pressing inwards on her throat with her fingers.
She also said that “when it’s very severe, it can break some ribs”, and that she often deals with debilitating spasms and cramp-like sensations that lock her joints in place.
Before her diagnosis, she told NBC she was taking diazepam, commonly known as Valium, to help relax her “whole body” in order to perform on stage.
She came to need high doses because of the severity of her muscle spasms, but she was not aware of the consequences. “I did not know, honestly, that it could kill me,” she said.
On reflection, she said, she should have taken the time to “figure it out”, rather than pushing through performances.
But since this tough period coincided with her late husband, Rene Angelil, “fighting for his own life”, and then dying from throat cancer in January 2016, she felt she “had to hide”.
I Am: Celine Dion was already in pre-production when Dion received her diagnosis, and Taylor says she was “stunned” when Dion’s managers sat her down with “some grim news”.
“Doctors were beginning to suspect that this beloved, one-in-a-million entertainer had developed a one-in-amillion disease, that I had never even heard of, called stiff person syndrome,” says the filmmaker.
“There was no cure, they said, and each day Celine might experience a roulette of symptoms – rigidity, difficulty breathing and muscle spasms so severe she might not be able to talk or walk.”
In the film, a tearful Dion shows just how much music means to her. “I miss it so much,” she says.
“If I can’t run, I’ll walk. If I can’t walk, I’ll crawl. I won’t stop.”
I’m working hard every day but I have to admit, it’s been a struggle
I Am: Celine Dion is released on Prime Video today