Celine Dion May Never Perform Again
In a new documentary, the singer talks about her autoimmune disease and her love for singing.
Early in the documentary I Am: Celine Dion, you see a cellphone video of Dion lying on her side on the floor of a hotel room, moaning softly. She seems to want to speak but can’t get out any words. Her body is stiff, her position unnatural. In the background, you can hear a man calling the concierge and asking for “the fire department, please, and a rescue unit.” Another man tells Dion to push into his hand if she’s in pain, but it’s unclear if she can hear him. The scene would be difficult to watch even if its subject weren’t one of the most famous musicians in the world.
Soon after, the film cuts to archival footage of Dion onstage in Las Vegas, in a bedazzled gold jacket, belting her first No. 1 hit in the United States, “The Power of Love.” She winks at the camera, rocks to the beat, and pumps her arms, looking completely in her element. Her love of performing seems innate—the same delight shines in her eyes in clips of her as a teenager, learning English and launching her career in Quebec, and in later decades, as her star rose. The Las Vegas scene reminds us not only how much we’re missing Dion during her hiatus from performing, but also how much she is missing us.
The documentary was filmed over several years as a team of caregivers have worked to address Dion’s rare illness: stiff-person syndrome, an autoimmune disease that affects just one or two out of every 1 million people and is not well understood. Large parts of the body go rigid during spastic episodes. Many people with the condition develop anxiety and agoraphobia. Dion says that her lungs are fine, but everything outside them is rigid, which makes singing impossible. A few moments of creative editing are overly stylized, which is a shame because her condition needs no dramatization. It is degenerative and can be fatal.
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She reveals in the film that she’s been ill for 17 years. She developed tricks to distract audiences when she felt her vocal cords spasm in the middle of a concert—pointing the microphone toward the crowd so they would sing for her, or tapping on it to make it seem like there was a problem with the audio system and not her voice. She canceled shows, feigning ear and sinus infections, and took valium daily. She pretended for as long as she could, which seems so exhausting that you have to wonder if it made her condition worse. She is 56 now. In the documentary, she doesn’t talk about wanting to be well; she talks about wanting to sing.
Dion shares nothing in common with young performers who lament how hard it is to be famous; she seems to live for her fans. They “give me lots of energy—lots and lots,” she says in an early interview in French. “Being onstage is the gift of show business.” She is the rare superstar who you feel somehow deserves her international fame and the wealth it has given her. Good for her, I thought as I watched her tour a warehouse full of designer gowns she has worn to major events, and walk through the Vegas compound where she lives, surrounded by enormous paintings, sculptures, Louis Vuitton trunks, and antique furniture that looks like it came from Versailles. Her twin tween sons are endearing too: One takes a break from playing in a decked-out video-game room to listen attentively when she comes in for a visit, proffering a degree of eye contact that I’ve never witnessed in a 13-year-old. Later, one of the twins jumps out of his seat to thank a butler who hands him a milkshake from a tray.
Okay, that last one was pushing it. But these are children whose father died when they were 5 and whose mother may well be dying now. And Dion was in no way destined for a life of abundance. She was the youngest of 14 children, all of whom, she says, smiled sweetly and pretended to like the carrot pie that their mother once made them for dinner because it was all they could afford.
From the first time she took the stage, as a 5-year-old performing at a family wedding, Dion was a star. She shot anxious looks at the guitarist behind her whenever he missed a note, because she—we are meant to understand—would never miss a note. That night, her mother gave her the advice that she would channel into her illness: If something goes wrong in a performance, pretend that everything is fine and keep going. At the age of 12, Dion was discovered by a manager, René Angélil, whom she later married. She began recording albums in English and French, eventually going multiplatinum in both. Most Americans knew her voice before her name because she sang the theme to Disney’s Beauty and the Beast, released in 1991. But soon her name was everywhere.
To be clear, I’m nowhere near Dion’s biggest fan. I missed her first major album in the U.S., The Colour of My Love, on account of being 4 when it came out. But her next, Falling Into You, had me on my knees when I was 6, belting in my best friend’s bedroom about nights when the wind was so cold that my body froze in bed, and days when the sun was so cruel that all the tears turned to dust and I just knew my eyes were dryin’ up forever. We couldn’t wait for scenes like this to play out in our own lives, and though—it turns out—they weren’t terribly realistic, Dion’s heartful crooning about fairy-tale love connected with people of every age, perhaps especially those who were old enough to know better.
My real appreciation for Dion grew in 2018, when I saw her perform in Vegas. I had agreed to attend with some friends, expecting a silly night of singing along to her hits like I was a kid again. It was the best live performance I had ever seen. Her singing was stunning, of course. She ad-libbed frequently, taking pleasure in showing off her range, and her voice was warm and supple. But she was also funny. Very funny. She broke into stand-up between songs and showed no desire to be perceived as cool, hunching over to maximize the range of her hip thrusts while strumming an air guitar. She told stories that drew gasps, like that she’d originally refused to sing “My Heart Will Go On”—she didn’t feel like doing another movie theme song—until Angélil persuaded her to record a demo track so that he could sell it to another artist. The demo was so good that she never had to record it again, and he never had to shop it around to other artists; it’s the version we know.
That night, Dion didn’t even have to mention her late husband—or their love story, which still makes me, along with many of her fans, a bit uncomfortable because of how young she was when they met—for us to know when she was singing about him, maybe even to him. She cried, and so did we.
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Since canceling a Vegas residency in 2021, Dion has mostly been isolated in her home, trying to get better. “If I can’t run, I’ll walk. If I can’t walk, I’ll crawl,” she says in the documentary. The skin on her face now hangs forward and down, as if she’s exhausted by the power and duration of her own grief. Describing what this hiatus has been like, she performs her sadness almost too perfectly, because she’s Celine.
The documentary captures the first time in years that she had managed to record anything that even vaguely resembles her former self, the song “Love Again,” for a rom-com by the same name that came out in 2023. But her emotions trigger another spasm. Tightness in her big toe spreads to her ankle. Her therapist gets her to lie down, and soon her whole body is seizing. Her face darkens and contorts, and her upper lip twitches. The team treating her discusses when to call 911. But she comes to after being given valium and benzodiazepine, ashamed of having lost control. To cheer her up, her therapist plays one of her favorite songs—“Who I Am,” by Wyn Starks. She responds with the glee of a child who’s been handed a chocolate bar, mouthing the words and punching the air, pretending she’s onstage again.
The way the documentary was advertised suggested that it was going to be a more typical, will-she-or-won’t-she-make-it countdown to Dion’s big comeback, and I went in expecting it to end with the announcement of another residency or tour. But the film makes clear that she is nowhere near being able to hold a concert. She seems to nap for most of the day and says that just walking is painful. Her spasms are triggered by strong emotions, but they also happen at random. By the end, I didn’t care if Celine Dion would ever be able to perform again; I just hoped she would live. But I also understood that, for her, there is no difference.