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.
