At some point in 2008, while on the road with her Taking Chances World Tour—one of the highest-grossing shows of that decade—Celine Dion remembers feeling something wasn’t quite right. “Quite rapidly, I was having difficulty controlling my voice,” Dion tells me over Zoom from her home in Las Vegas, perched on a sofa in a pair of tropical leaf print pajamas. “It would go really high, and then it would spasm. So the first thing you do as a singer? Well, you go straight to the ENT.” With no clear answers from her doctors—“they looked at [my vocal cords] from every angle, and they said it was pristine,” she recalls—she just kept pushing through and finished the tour. Then she completed another Vegas residency. Then five more tours. Somewhere along the way, she also began experiencing bouts of muscle stiffness. “I started having a hard time walking. I was holding on to things.”
It wasn’t until 2020, when COVID forced her to slow down, that Dion finally reckoned with the mysterious health concerns that had been a recurring part of her life for over a decade. “When the pandemic arrived, I said to myself, the universe makes no mistakes, and I will take this time—this opportunity—to search,” says Dion. “After years and years of playing hide-and-seek with myself, with my friends, with my family, with my kids…” She pauses, visibly emotional. “I no longer wanted to be brave. I had tried as long as I could. It was time for me to be smart.”
After undergoing a more intensive round of checks—and a lengthy process of elimination—Dion was diagnosed with stiff-person syndrome, a rare neurological disorder that causes muscle stiffness and spasms. “It probably sounds very strange to say this to you, but when I was diagnosed, I was happy. I was finally able to move with the wave, not against it.” In December 2022, she decided to share this information with the world, through a video posted to Instagram. “I don’t know if you know me well enough to know that I’m an open book,” she says, breaking into a wide smile. It was the same open-hearted spirit that saw her approach her diagnosis with candor, and share the news with her fans soon after. “I couldn’t hold it in anymore.”
Less than two years later, Dion is unveiling the trailer for her new documentary, I Am: Celine Dion, which streams globally on Prime Video from June 25. While the film captures the more challenging moments of Dion’s journey over the past few years, it’s also a remarkable portrait of resilience—and a love letter to the fans whose support has provided her with a light at the end of the tunnel.