Since her diagnosis with Stiff-Person Syndrome, Céline Dion has been partly away from the spotlight to focus on her health. The legendary singer opens up about her daily life with the illness in her new Prime Video documentary: I Am: Céline Dion.
The “My Heart Will Go On” singer first revealed her diagnosis in 2022. Months later, in May 2023, Dion announced that she was canceling the rest of her European Courage World Tour tour to focus on her recovery. “I’ve been dealing with problems with my health for a long time, and it’s been really difficult for me to face these challenges and to talk about everything that I’ve been going through,” she captioned an Instagram post. “It hurts me to tell you that I won’t be ready to restart my tour in Europe in February.”
Related: What is Stiff-Person Syndrome? Behind Celine Dion’s ‘Devastating’ Diagnosis
She continued in the video, “Recently, I’ve been diagnosed with a very rare neurological condition called stiff-person syndrome, which affects something like one in a million people. While we’re still learning about this rare condition, we now know that this is what has been causing all of the spasms that I’ve been having.”
Can Celine Dion still sing?
Throughout the documentary, we see glimpses of Celine Dion trying to train and sing in the studio. She’s doing what she loves with some strain from the spasms. In the doc, she explained that the pain “is like somebody is strangling you. It’s like somebody is pushing your larynx/pharynx. When I try to breathe, my lungs are fine. It’s what’s in front of my lungs that’s so rigid.”
In one harrowing scene where she tries to sing, she encounters a spasm on a massage table. Her physical therapist adjusts her body and inserts benzodiazepine nasal spray while her body is twitching. “Every time something like this happens, it makes me feel so embarrassed,” Dion says after the experience. “I don’t know how to express it, you know, to not have control over yourself.”
“If I can’t get stimulated by what I love, then I’m going to go on stage, and you’re going to put the pulse oximeter on me and turn me on my back?” she reflect. Her PT later assures her that she’s not at the end of the road. “It’s scary, I know. It’s hard. This is not the end of your journey.”
Before the documentary was released, the “Power of Love” musician sat down with Hoda Kotb on Today to talk about how she would lower the key of her songs before her diagnosis was public knowledge. “I went on stage and I started to sound more nasal,” she said of her symptoms on stage. “I could say, ‘It’s a little cold starting’ or ‘It’s the third show in a row.’ ‘You’re working too hard.’ But the thing is, it was different. I started to feel like the body was more rigid.”
Though it might be scary at times, Dion is confident that she’ll come back on stage one day. “I spent all my life in the music industry being a performer and loving every moment of it. This passion will never go away,” she told the host. “I’m going to go back on stage, even if I have to crawl, even if I have to talk with my hands. I will. Not just because I have to or I need to, but because I want to. I miss it.”
