The director of 'I Am: Celine Dion' talks about documenting the singer's agony

“This is by far the biggest crowd I've had in a few years,” Celine Dion said onstage at Lincoln Center last week. She was making a rare appearance to present “I Am: Celine Dion,” a documentary that chronicles her struggle with stiff person syndrome, a rare neurological disorder that causes muscle stiffness and has made it difficult for her to do what she loves most. definite. since she was little: singing.

“I can't believe how lucky I am to have my fans in my life,” Dion said, pausing to hold back tears as her son, René-Charles Angélil, who was waiting at the side of the stage, handed her a tissue. “Thank you all from the bottom of my heart for being part of my journey. This movie is my love letter to each of you. I hope to see you all again very soon.”

Director Irene Taylor wasn't exactly a Dion fan when she received a call a few years ago asking if she would be willing to make a film about the French-Canadian singer known for her powerful voice.

“Honestly, I thought it wasn't going to be a good fit. I don't say this out of arrogance. I thought, “What would they want from me? “This is not the kind of movie I make,” Taylor said in a video conference. Her previous documentaries include the deeply personal “Moonlight Sonata: Deafness in Three Movements,” about her deaf son and her father. Finally, Dion convinced her and tried to broach the topic “without peripheral vision,” Taylor said. “I really tried to look at the person in front of me and what was going on.”

The documentary, now streaming on Prime Video, uses clips of performances and interviews from Dion's 40-year career and goes through the basics of her biography, beginning with her childhood in Quebec, where she was the youngest of 14 children, and then his cross journey. from a French-speaking teen star to a chart-topper with power ballads like “Because You Loved Me” and “My Heart Will Go On.”

Weaving together archival footage with contemporary footage of Dion speaking about her health struggles, “I Am: Celine Dion” shows the singer at her most vulnerable, both emotionally and physically.

Gone were the glitz and glamor associated with his stage persona; Dion appears practically without makeup and dressed casually, making ridiculous videos with her teenage twins. She comes off as endearingly eccentric (at one point she breaks out into the Kit Kat jingle “Gimme a Break”), but also self-aware and very funny, as when she delivers an impromptu monologue about her love of Kit Kat shoes. she.

She is also candid about the extent of her health problems, revealing in the film that, by then, she had been experiencing symptoms for 17 years. What first manifested itself through occasional vocal tension became increasingly debilitating, forcing her to find ways to fake it on stage and cancel shows, something she, an artist with an enthusiastic work ethic and devotion to her fans, did. He found it almost as painful as physical pain. condition itself.

Perhaps most unforgettable, the film captures Dion as she suffers an episode of her illness in the middle of a physical therapy session. While she is lying on a table, she suddenly freezes. And although she can barely make a sound, her torn face conveys the agony she is experiencing. At the New York screening, audience members could be heard crying throughout the scene.

Taylor followed Dion for about a year, spending several days with her a month and finding her to be brave and authentic, qualities he hopes are reflected in the film.

“She was very down to earth with me,” he said, “so I just wanted to show that to the woman who showed that to me.”

Taylor spoke to The Times the day after the New York screening. The following conversation has been edited and condensed for clarity.

Did you know about his diagnosis when you signed up to make this film?

I didn't know anything about his illness when I signed up to do this. She had been hiding it from the world, including me. It all made sense once I talked to her. I realized it was a pretty devastating lie I had been telling people for years. Her athleticism on stage did not suggest she was ill. Yes, she was canceling some shows, but she found ways to pretend.

At first I didn't know what the movie would be about. I really didn't know what my opinion would be. I just knew it would be a portrait of her. She asked me: “Is it possible to make a documentary in which no one else appears but just me?” That would sound very self-centered coming from a certain type of person, but it was a genuine question. I told him, “It's certainly possible, but it will be a harder path for you because I need more of your time and I need your authentic self.”

But Celine was very direct with me. She never told me that she stopped filming. In fact, she said, “Don't talk to me about whether you can do something or not, because that will discourage me. You are here in my house, you have carte blanche, do what you have to do.” That's a profound tool to give me. She didn't get involved in my editing. She didn't ask me to change anything. It's a unique opportunity to be able to make a film about a public figure and have so much agency.

When did you find out about the disease?

I got a call saying, “Could we talk about this?” It was a call with someone from the record company and a couple of people from her management team and they basically said, “She's not well and we don't have a name for it.” There was no consensus on this. I had that information from the first day of shooting, and then it was like a fire hose towards me. “I've been lying to everyone for seventeen years. “I feel very guilty.” I felt so overwhelmed that first day. I think I had been holding it in for a long time. During the first half of filming, I watched her flail around, not knowing what she had and the doctors not knowing what to do about it. Then, over time, there was consensus and she was very relieved when she received the diagnosis, even though she is an orphan disease. She told me: “I don't want to have a rare disease. Nobody knows how to solve it.”

When he got that formal diagnosis, that's when he wanted to tell the world, and the way he wanted to do it was through Instagram: just tell people directly. Then I took a turn in my filmmaking and decided how to incorporate telling the world into the story.

Irene Taylor said she was unaware that Celine Dion had been battling a debilitating illness for years when she took on the documentary project.

(Richard Shotwell / Invision / Associated Press)

With celebrities and public figures, it can be difficult to remove them from your narrative. How did you find it as an interview topic?

I had reservations when making the film, because I saw “Celine Dion” in quotes, as a very cultured public figure. She had a personality and I was a little cynical about it. I didn't want to make a movie about someone who had an agenda. It was necessary to talk to her and then connect on a personal level about certain personal things. We both love trees. We both raised children. She was very interested in breaking down everything that was in [the background on] Our Zoom calls: “What is that?” You could tell he was just trying to rebuild me.

I had made very intimate films about people I know very well, like my parents and my son. I just didn't know where I would fit. In the end, I realized that the fact that Celine was so used to the cameras, the fact that she had lived her life under the lights, actually made her a very authentic subject. I realized that instead of [her celebrity] Being something to be careful about was actually working in my favor, but only because she had decided, “I have nowhere else to go.” She seemed to have it all. In fact, she was living a very private lie and she called it a lie. I was surprised by the language she was willing to use to describe herself.

We see Dion I have this very intense episode, where it is clear that she is in excruciating pain. Tell me about filming that. — What was going through your head?

All this happened in a matter of a minute. We were in a physical therapy session. We spent 10 minutes on two days of [her] recording [music] for the first time in several years. She left elated, because she didn't believe she was capable of doing it. Ironically, it is that euphoria, that emotional high, that can trigger this type of response. We could have turned off the camera, but at that point we had been filming for eight months and Celine said, “Film everything.” I thought, “I have to make sure this woman is breathing,” so I put the headphones in my ear and listened, but I couldn't hear her breathing. I asked him: “Is she breathing?” She was able to squeeze [the therapist’s] hand. I looked at my [director of photography]and we move on.

In fact, I appreciated that about four minutes into the episode you hear her therapist mention that the cameras are in the room and he asks her if she's okay. He wasn't sure what he would say at the time, but he said he was fine. I couldn't believe what had happened and I was so grateful that she was okay, but I realized that it could be an opportunity, if Celine was willing to do it, to really show and validate her suffering.

Six months later, I showed him a draft of the film. He was very nervous. He knew that there was no way he would do this without his consent. She said, “I think this movie will help me.” She then said, “Don't cut that scene.”

How did this project change your perception of her? Are you a fan now, or at least an admirer?

A filmmaker must be very careful not to let himself be intoxicated by anything. But I really allowed myself to be inspired by her. We are almost the same age. I have my health and I saw someone who was really struggling. She finds so much joy in making music that she's going to come out with something on the other side of this that will be very powerful. It may not be the Celine Dion who earns tickets and basically does three aerobics classes during a concert. It may be a different intensity, it may be a different artistic approach, it may be a different way of acting. But I can tell you that she is very focused on advocating for people with this disease.