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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 more than 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 today, breaking into a wide smile. It was the same openhearted 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.
After being forced to cancel the remaining dates of her Courage world tour back in 2022, Dion channeled her tenacity as a performer into her slow but steady process of rehabilitation, with the hope of being able to return to the stage and connect with her devoted fan base once again. (This past February she made her first public appearance post-diagnosis to present Taylor Swift with the trophy for album of the year at the Grammys.) “I wanted to do it as a documentary because it’s not a quick thing and there is no quick fix to what I’ve gone through,” Dion explains. “It’s not just about vocal exercising and doing Pilates. It’s rehabilitation physically and vocally, emotionally and spiritually—the whole shebang. And I want this story to be told in a classy way. I respect my fans and myself enough for them to know the full truth.”
In order to tell that truth, Dion knew that she would need to find the right storytelling partner. Having already begun conversations with a handful of directors at the beginning of 2022 to explore making a film about this phase of her life, Dion was connected with the Oscar-nominated documentary filmmaker Irene Taylor, and the pair hit it off immediately. “I wanted to find someone I could vibrate with as a partner on the project,” Dion says. “I wasn’t looking for someone who would dramatise my life or reinvent what I was going through. Or someone who would always be saying, ‘Can we ask you that? Can we go there?’ When I met Irene, I knew right away that she was the person.”
Speaking with Taylor, whose background as a photojournalist has taken her to all four corners of the globe, it’s clear that it was Dion’s unusual ubiquity—and the presence of so many facets to her the general public might not be familiar with—that drew her to the artist as a subject. Besides, there was Dion’s willingness to open up. “At the beginning of knowing Celine, she said to me very clearly, ‘I would like to be the voice of the film,’ which was like music to my ears,” says Taylor. What did Taylor interpret that urge to mean? “I think what she was saying to me was, ‘If you will let me, I will tell the story. Just talk to me. And over time you can piece this together,’” Taylor explains. “If Celine is saying, I will give you myself, why would I want anyone else? The film is about her, you know—and not only was it about her, it was about her during a very specific time in her life where she was pivoting, and not by choice.”
While the documentary is woven through with archival footage of Dion’s rise to fame—and her many decades at the top of her game as a musician and performer—Taylor was eager to make it a portrait of Dion in the here and now. “I think that her dearest fans have a very good sense of how wide-ranging her repertoire is,” Taylor says. “But I think most people don’t know—the general public, me included. The film is about discovering present-day Celine in the context of this 40-year-plus career that brought her to this point.”
She continues, “I didn’t make a film for her fans, but the film is undeniably this love letter, and her fans really are concerned about her right now. They want to know what she’s doing, but they also want to just let her music wash over them. I think—I hope—the film manages to offer both.”
For obvious reasons, the majority of the present-day footage was shot in Dion’s Las Vegas home—a space she’s deliberately kept sacred and which she was only willing to open up to cameras for the first time after establishing a sense of kinship with Taylor. “This is the only place I have that I could suffer, cry, go crazy, be happy, sing, miss a beat—and right now, be vulnerable,” Dion says. “I needed to trust someone so much to be able to show them that. And just by hearing a little bit of Irene’s own story, I was able to do that. I don’t have a lot of friends. Now I consider Irene a friend. Because she understood.”
Part of the reason Dion has kept her home life so closely guarded, she explains, is to protect her children. (Dion has three sons from her marriage to René Angélil, her late husband and manager who died of throat cancer in 2016.) After many decades of intrusion from the tabloid press, Dion knows when—and how—to keep her private life private. “I died already in newspapers many times,” she says with a touch of gallows humor, before noting that the worst thing about the frenzied speculation around her health has been having to explain the headlines to her children. “I have to remind them not to believe everything you read or hear.” Still, Dion says, it’s partly for the sake of her children that she felt compelled to make the documentary. “The film was done with so much respect,” she says. “I did allow Irene to capture things that maybe will be hard for some people to see, but it’s my reality.”
As for Dion’s reality at this exact moment? She’s taking things a day at a time. “It has been a big burden on my shoulders, and a lot of that weight’s gone,” she says of sharing her diagnosis with the world. “Because now I can just focus on reality. That’s wonderful. My happiness came back.” So too does she hope that releasing the documentary will help raise awareness around stiff-person syndrome and encourage those who identify with her symptoms to speak to their doctors. “I hope that the documentary doesn’t frighten people but awakens people to SPS,” she says. “It took 17 years for me—please don’t wait that long.”
Most of all, though, she’s excited to hand the gift of this documentary over to those keeping the light on for her throughout her darkest moments: her fans. “What’s my mission in life? Is my mission to be a singer? Is my mission to be a spokesperson for SPS? Is my mission to be a mother? Or is my mission to be all of the above? I guess today is the beginning of the rest of my life,” says Dion. “It’s a song that I’ve never sung before. But it’s the most important song I’ll ever sing.”
I Am: Celine Dion is presented by Amazon MGM Studios and is a Vermilion Films production in partnership with Sony Music Vision and Sony Music Entertainment Canada. The documentary will be released globally exclusively on Prime Video on June 25.
This story was originally published on Vogue.com.
