Céline Dion photographs the singer’s heartbreaking health battle

An early scene from I am: Celine Dion shows the five-time Grammy winner doing what she does best: belting out the highest notes. Fans of the Quebec singer – or really anyone who has paid even a little attention to pop culture over the past three decades – will immediately recognize the contours of Dion’s powerful vocals. It’s a reminder of why the 56-year-old music legend is so popular – and what she has to lose in the current battle for her health and voice.

The documentary, which is now in theaters and available to stream on Amazon Prime Video on June 25, is based on an Instagram video Dion posted in December 2022. In the clip, a tearful Dion speaks directly to her fans, apologizing for canceling her four-year residency in Las Vegas. “I’m sorry it took me so long to get back to you guys. I miss you so much,” she says, before revealing her illness: stiff person syndrome (SPS), a rare neurological autoimmune disorder that causes painful muscle stiffness and spasms. Her message is one of devastation and regret for letting her fans down – and in many ways, that’s the central note of I am: Celine Dion.

“She cancelled her brand new residency a week before it was due to start. You can imagine how many people were affected by that,” said the film’s director, Irene Taylor (Leave No Trace, Moonlight Sonata: Deafness in three movements), told W. When filming began, Dion had not yet received a diagnosis for the illness that she now knows had plagued her in some form for nearly two decades.

For this reason, I am: Celine Dion is less a classic celebrity biopic than a snapshot of a very difficult time in a life otherwise marked by “tremendous happiness,” as Taylor puts it. The most heartbreaking scenes show Dion in the grips of her illness, tears streaming down her frozen face as paramedics guide her through excruciating muscle spasms. She is at her most distressed when she is talking about (or demonstrating) the effects of SPS on her vocal range and strength.

Still, there are lighter moments too – including archival footage of the always dapper Dion belting out megahits like 1997’s “My Heart Will Go On” and cozy scenes of the singer at home with her kids. (There’s also a fun break where she shows off her vast wardrobe, saying of her shoe collection, which ranges from sizes 6 to 10: “When a girl loves her shoes, she always makes sure they fit.”) Shots of her in outfits from her collaboration with Law Roach are also in the film – and between the tears, Dion’s trademark silliness is often on display, reminding us what a true showman she is.

Below, Taylor Dion describes her approach to creating this intimate documentary and explains why there were no limits to the filming:

Why did Celine want to make this film?

I think it was because of the pandemic and slowing down – she reconnected with her children. As she puts it, “I was brave for 17 years and didn’t tell anyone except my close friends and family, but now it was time to be smart.” She realized that she was a single mother and didn’t want to orphan her children. She pushed herself so hard and supported herself with medication so she could walk and function.

She’s been struggling with this for 17 years?

For 17 years. She talked about how much Valium she took. Celine doesn’t take pills. She doesn’t drink. She’s very honest. If she’s addicted to anything, it’s singing and telling jokes.

Her private life is not talked about much, but the scenes in which she shows symptoms are extremely vulnerable. What limitations did she have when filming?

She didn’t put any limits on me. I heard that she had seen some of my films and had a sense of where I was going and where I wasn’t going. Celine told me things that another filmmaker would have picked up and done. I really had no interest in answering a ten-year-old’s questions about gossip. I was blissfully ignorant in a way because I hadn’t done my research. I wasn’t a fan. I respected her and grew up with her. I could sing a lot of her songs. But when I found out she was sick, I was really only interested in what was right in front of me.

You can clearly see how responsible she feels for everyone around her. Have you ever thought that she is too hard on herself?

Personally, I feel like she was too hard on herself, but I put myself in her shoes and understand her. People would say, “How can you be so sick when you did that very athletic feat last night? How is that possible?” We all know what it’s like to feel worthless. Throughout history, the word hysteria has been associated with femininity. She was afraid that people just wouldn’t believe her. When she lost the fan component, it was a really difficult adjustment for her.

What do you think or hope is next for them?

You could say that Celine is technically disabled by this illness. She may not hit the so-called golden notes anymore, but now she sings with a different kind of intensity. She may choose a different repertoire. She may work with new artists she never thought she would work with, or new songwriters. She may be taken out of the canon of pop music and put in a new place, so that this disability is actually a superpower. There will be something on the other side, and we will hear a lot from her.