Celine Dion made her first public performance in two years at the Paris Olympics opening ceremony, singing "L'Hymne A L'Amour" at the base of the Eiffel Tower. This followed her diagnosis of stiff person syndrome (SPS) — a rare, progressive neurological disorder that compromises her ability to put on a show. The artist’s difficult and resilient moments of navigating the health condition are in the new Amazon Prime Video documentary, I Am: Celine Dion, directed and produced by Emmy winner Irene Taylor (Beware the Slenderman, Moonlight Sonata: Deafness in Three Movements).
Taylor says that before coming inside Dion’s Las Vegas house, the musician already committed to the film, which often shows her crying, not wearing makeup, not looking like the glamorous musician people know onstage.
“She told me, ‘Do not ask if you can come into a room. Do not ask me if you can talk to me about something. Just do it.’ She was essentially saying, ‘Don't make me self aware of this process. Just be here.’ And over time, that's really what happened,” Taylor recalls. “And from day one, she was pretty good at just moving through her house, assuming that if we wanted to, we would follow her from one room into the next. That might include her dressing room, even her bathroom area where she kept her medication. We were with her through medical treatments in her home. We filmed her while she slept.”
Stiff person syndrome causes muscle spasming in spurts. Outwardly, the body goes rigid. Dion didn’t know how to suppress it effectively, and she spent years taking higher Valium doses, Taylor says. That included ingesting a pill (or more) briefly before starting a concert, but because the medication wore off quickly, sometimes she felt a spasm when walking onstage. In those cases, she pointed the microphone toward the audience because she couldn’t sing, Taylor explains.
“She would sometimes just not sing a note. But she would tap the microphone as if we're all on the phone when you say, ‘Oh, you cut out.’ … She would look at the microphone and tap it as if that was just a blip.”
Celine Dion reminisces on her childhood. Credit: Amazon Prime Video.
The symptoms lasted for 17 years, Taylor says. That unnerved the filmmaker when digging through 600 hours of archives, which went back to when Dion was as young as 12, performing and giving interviews.
“When you look back at these performances, you wonder: What was she feeling that day? And I think it was just so mysterious in the beginning that she was keeping it to herself, and just trying to use general medications to calm her nerves about it, but also to calm whatever was going on in her body, which I don't think the medical community really understood very well.”
Taylor suggests that the illness made Dion humble (she was also funny and kind). The singer admits in the film that it’s embarrassing to lose control of her body. Having to contain that inner panic, Taylor notes, “definitely keeps someone real.”
“I think it was just so mysterious in the beginning that she was keeping it to herself, and just trying to use general medications to calm her nerves about it, but also to calm whatever was going on in her body, which I don't think the medical community really understood very well,” Irene Taylor says of Celine Dion’s Stiff Person Syndrome. Credit: Amazon Prime Video.
Ultimately, Taylor says she hopes people will acknowledge that some artists do their craft not in spite of having an illness, predicament, or sensory deficit — but instead, the condition informs their work.
“Even if Celine has to choose songs that have a narrower musical range, even if she has to change her repertoire, even if she can't hit that high note in ‘All By Myself,’ she brings with that a certain humility. And now that the world is seeing this story, hopefully people can appreciate and understand why she would move in that direction. But … she still has her singing spirit, and she would sing her way through interviews.”