As the sun sets behind the mountains in an exclusive neighborhood 30 minutes from the Las Vegas Strip, a recognizable voice resonates from behind a closed door.
“Is that Celine?” I ask the security guard stationed outside the hotel suite. He nods.
I am about to interview a musical megastar, and it sounds like she is in a cheerful mood. The iconic voice I hear casually singing is one that fans feared they might never hear again.
“I’ve been dealing with problems with my health for a long time,” Celine Dion shared in an Instagram video in December 2022. “I have been diagnosed with a very rare neurological disorder.”
Following this devastating announcement, Celine Dion canceled the remainder of her world tour and has rarely been seen in public since.
The medical name for her little-known illness is Stiff Person Syndrome (SPS), a neurological condition that causes muscles to spasm. As we sit down to talk, Celine reveals that it went undiagnosed for years.
The 56-year-old describes the distress she felt as a performer when she began to notice changes in her voice on tour. “It was just feeling a little strange, like a little spasm,” the Canadian star says. “My voice was struggling, I was starting to push a little bit.”
She demonstrates the subtle difference by singing the first few bars of her 1993 hit “The Power of Love,” showing how she had to force her voice to hold the notes that once came effortlessly. Occasionally, she would ask the conductor of her backing musicians to lower the key for a few performances.
“I needed to find a way to be on stage,” she explains. She hoped that singing fractionally lower might give her voice a chance to recover.
Audiences would never have known the struggle she was facing behind the scenes. However, Celine says that at the time, taking a break felt impossible.
“These shows were sold out for a year and a half, going around the globe. And I’m going to say to people, ‘Excuse me about my spasm? Excuse me about my je ne sais quoi?'”
She put immense pressure on herself to keep the show going, not understanding the cause of her symptoms. But it all became too much.
Her eventual diagnosis brought the realization that this was not tour fatigue. It was permanent.
