A new documentary shows the heartbreaking impact of Stiff Person Syndrome on one of the world’s greatest singers, Celine Dion.
The Canadian star, one of the best-selling artists of all time, is the subject of Oscar-nominated director Irene Taylor’s film I Am: Celine Dion, which follows her as she copes with her diagnosis.
Stiff Person Syndrome, known as SPS, is a rare neurological condition that affects just one or two in every one million people. It begins with muscle spasms and, over time, can cause crippling full-body attacks and torso rigidity.
Dion publicly disclosed her diagnosis in 2022 but has remained largely out of the spotlight since.
However, the new documentary, which was screened to members of the press at Bafta in London on Tuesday (18 June), shines a light on the struggles she continues to face as she battles the painful disorder.
In one particularly affecting scene towards the end of the documentary, Dion returns from the studio where she has been attempting to record the title track from 2023 film Love Again, when her muscles begin to cramp while she is receiving physiotherapy.
“Part of the disease is that as soon as you go into contraction, sometimes [your brain] doesn’t understand the signal to release it, so it understands just staying in a contracted position,” her physiotherapist explains.
He warns that the continued spasms “could lead to a crisis” as Dion’s feet are shown in a locked position, and he administers valium before she goes into a seizure.
The singer is heard moaning and crying out in pain as she is turned onto her side and her therapist calls for help as the crisis worsens.
He and his aid then continue to treat Dion, whose entire body is now contorted and stiff. Cameras continue to film as the distressing scene unfolds over five or six minutes, as she is eventually able to move again.
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“Do you want us to take the cameras out?” her therapist asks, and she shakes her head.
“Every time something like this happens, it makes you feel so embarrassed and like… I don’t know how to express it. Like you don’t have control of yourself, you know?” she says, as she recovers from the seizure.
“Your nervous system now has gone through a battery round,” her therapist says.
Dion is concerned as he explains her brain was “overstimulated”, likely from her returning to the recording studio for the first time in two years.
“What am I gonna do?” she asks. “Because what’s gonna happen, if I can’t get stimulated by what I love, then I’m gonna go on stage… you gonna turn me on my back?”
“It’s scary, I know,” he responds. “It’s hard. This is not the end of your journey, we all know that, but this is a step on your journey.”
He then plays her the “ending song” for the session, and she begins to sing along to “Who I Am” by pop-soul singer Wyn Starks.
“I gotta be me, gotta be I,” she sings, “Gotta be who I know I am inside/ Can finally breathe, taking it in/ Look at me flying!”
“What a song,” she says as the track closes. “What a song.”
I Am: Celine Dion is released to Prime Video on 25 June.