Superstar singer Celine Dion opens up on suffering from stiff person syndrome and the toll it’s taken on her health and her career in a new documentary
WORDS: LAUREN MORRIS PHOTOS: GETTY
MY HEART WILL GO ON
Canadian megastar Celine Dion has sold out stadiums, topped worldwide charts and broken records with her award-winning voice. But for the last two years, the singer has been robbed of her talent by stiff person syndrome (SPS) – a devastating neurological disorder that causes spasms, muscle rigidity and chronic pain.
“Last year, I got to a point where I couldn’t walk,” she says in a new TV documentary, breaking down in tears. “I was losing my balance a lot and I can’t use my voice yet. Music – I miss it a lot.”
Celine, 56, opens up about her struggles with SPS in her Amazon Prime Video special I Am: Celine Dion. Filmed after she was forced to cancel her 2021 Las Vegas residency, the 100-minute documentary sees Celine talk about her health, the impact SPS has had on her career, and the reality of her day-to-day life.
In one harrowing scene, Celine visits her physiotherapist after her first day of singing in two years and suddenly suffers a seizure. “She’s spasming and it could lead to a crisis,” her physio tells the camera, as Celine begins wailing and shaking. After being given emergency medication and coming to, Celine says, “Every time this happens it makes you feel so embarrassed. You don’t like to not have control of yourself.”
Celine announced in December 2022 that she had been diagnosed with stiff person syndrome – however, she admits that she first began experiencing symptoms nearly two decades earlier.
“I started to have voice spasms 17 years ago, that’s how it started,” she says. “After having my breakfast, my voice started to go up and it freaked me out.”
It’s then that the muscle spasms began to affect her ability to sing. “When I try to breathe, my lungs are fine. It’s what’s in front of my lungs that is rigid because of SPS. I know what I want my voice to do,” says Celine, and as she sings, her voice cracks. “That’s what happens and it’s very difficult for me to hear.”
Celine began taking Valium to keep the spasms at bay while on stage. “I needed my instrument and it was not working. We started to elevate the medicine – I was on 80-90mgs of Valium a day,” she says. “I don’t want to sound dramatic but I could have died. I was taking those medicines b
