‘I Am: Celine Dion’ Director Irene Taylor on Whether We Will See the Legend Sing Again, and Filming That Harrowing Climax: ‘She Said, I Don’t Want You to Cut That Scene Out’

“I Am: Celine Dion,” newly released for viewing on Prime Video, is so focused on what the singer has been through in more than a decade and a half of struggling with Stiff Person Disease that it’s hard to believe that director Irene Taylor didn’t even know Dion was ill when she signed on to the project. All she Taylor really knew, when she agreed to direct the film about a year of discussions, was that Dion seemed like a star who really, really had something to get off her chest… with little anticipation of just what kind of floodgates would open.

The day after the film premiered in New York last week, Taylor spoke with Variety about what she learned about what Dion has been struggling, and when — including not just the chronic illness itself, but the singer’s surprising guilty conscience in not having leveled with fans at every step of the way, even when she was in the dark herself. Taylor also shared her thoughts about how comfortable the usually glamorous Dion was in being filmed without makeup from the outset — which little compares to the humility she showed in letting herself be portrayed undergoing a seizure, in a truly shocking scene. (If you want to avoid documentary spoilers altogether, save this reading for after a viewing of Taylor’s powerful and perceptive film.)

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Taylor also addressed a question many fans will have before, during and after seeing the doc: Is there potential for Dion to sing publicly again? However that may turn out, the film ends with with a riveting vocal performance by Dion… moments after a scene so harrowing that Taylor wasn’t even 100% sure her subject was breathing.

You have never done a so-called music documentary before. It would be easy to look at your filmography and think you might be a director who would be attuned to making a film that involves some suffering. But as we understand it, when you were asked if you wanted to do this, you didn’t know about her illness. Can you describe how you came on to the project?

An industry colleague called me one day and asked me what I thought about Celine, and I confessed I didn’t think that much about her. But we’re a similar age, and I grew up listening to the radio like most of us, and I could sing her songs. (The colleague) told me that she thought Celine might be open to a documentary, and she was not involved in any sort of deal; she just thought, “I think you’d be really good for this. I’d love to recommend your name.” And a year later, after meeting her management, after meeting folks from Sony, after meeting Celine herself, I went through my own narrative arc from “Oh, I don’t see how this could be a right fit for me” to “Wow, this actually could be a really engaging experience for me. I’ve never made a film like this before.”

Celine had asked me, “Is it possible that you could make a film that would just be my voice and no one else’s voice talking about me?” And I said, “Well, sure, it’s possible. But you have to be on board for that, as a huge commitment. You have to decide if you’re up for that because you would be carrying the weight of the narrative.” And I didn’t say this to Celine, but I’m saying this to you: Someone can say they’re giving you themselves, but you can catch a whiff of inauthenticity, right? When people are sort of caught up in their own narrative, especially if they’ve been a public figure, they already have a story. Well, I did not know she was sick yet, but I could see that there was something in her that just really felt misunderstood. Lots of public figures feel like they’re misunderstood, that people don’t know them, but with her, I really felt it. I really was like, “Huh. There is something going on here.” And lo and behold, after I said, okay, I’m gonna take the leap — and she said the same thing about me — I basically said yes and she said yes.

About a month later, her manager called me and said, “Look, I’ve got to tell you something. Celine is really sick, and no one knows, and we don’t really know what it is.” But he didn’t tell me how long she had been sick — I had no idea (that it had been 17 years). So basically I went into the first day of shooting knowing she was sick and thinking, OK, maybe this is an obvious focus for my starting point with this film. And then the first day filming with Celine, she just firehosed so much that was inside of her, including so many things that eventually I realized are extraneous and not important. What is important, and this was the clear thing, is that she has been lying and she feels so guilty that she managed to cover it up.

Because she could prop herself up. She was very healthy; she takes very good care of herself. But she finally got to a point where her body was just breaking apart. You know, she couldn’t withstand the amount of pharmaceutical drugs she was taking just to function. She couldn’t stand it anymore.

That first day was the first really extraordinary moment in our filming. The second extraordinary moment, as you might imagine, was when the unimaginable happened while I was filming…

That is the shocking seizure scene near the end.

Statistically, the likelihood that that would happen while my camera was rolling is extraordinarily rare. Here we have a woman who’s a rarefied singer, and an icon who has a rarefied, orphan disease, and then this really rare thing happens while my camera’s rolling. No one expected that to happen. We never discussed, “What if that happens, what do we do?” Never even had that conversation, because we just assumed it wouldn’t happen.

How long did you end up shooting with her? 

Eight or 10 months. Cobbling together some archives that we wanted to get, I think it was about a year, because it took me and my editor about three months to go through 600 hours of archives. I knew that I didn’t want to make a film that was steeped in archive, but I knew that I wanted to sprinkle the archive throughout the film to balance the emotional ballast of the narrative. Because there was a lot of palpable loneliness. There was palpable suffering that I was witnessing that was very evident.

I think for the whole film, we only did like two formal interviews where we said, “Today, let’s sit down and really talk.” It was just like we would be together and then have a conversation for 20 minutes in the living room, and then later on we’d be in her dressing room and she’d be putting on her socks and then she would talk, and then she’d start crying. And then another time, I would think it would be a heavy day and she would be very jokey and lighthearted all day. So the film was really all about balance, because the pendulum just kept swinging so hard between light and dark, and happy and sad, and clear and obfuscated.

NEW YORK, NEW YORK - JUNE 17:  (L-R) Céline Dion and Irene Taylor attend the "I Am: Celine Dion" New York special screening at Alice Tully Hall on June 17, 2024 in New York City. (Photo by Cindy Ord/Getty Images)
Céline Dion and Irene Taylor attend the “I Am: Celine Dion” New York special screening at Alice Tully Hall on June 17, 2024 in New York City.

Do you think it was always her intention to have a film that would really zero in on what was happening with her condition and her illness, even though she didn’t reveal to that to you before you signed on? Was that always her end game, do you think? 

I don’t think I can speak to Celine’s end game, because that would suggest a very calculated plan on her part. I think that she wanted to be heard. I’m not sure she really just wanted people to really believe that she was sick and understand that she was sick, or if it was that this was the only way she knew to tell people, “I actually haven’t been truthful.” You know, she had called herself an open book for many years, but she was withholding this one part.

The film is not the reveal to the world that she’s sick. That was her choice to make, and when we had been filming for several months and she had gotten the diagnosis, finally, she had accepted that she now had a name for her disease. It was right around that time, like two or three months later, that she was feeling devastated and just said, “The lie is too heavy.” I saw the writing on the wall at that point, and I thought, “You know, I don’t think Celine can wait a year for the world to know why she’s now canceled her residency and two tours. And I’m not gonna try to control that.” That’s not my business. I could try to pivot and incorporate that telling into the film, so that’s what I did. So it’s kind of like before the announcement and after the announcement — you know, before Christ and after Christ; that’s kind of in my brain how I saw the narrative of the film. She felt better once people knew, because then the lie component… You know, she’s a deeply moral person, and I think she had a discomfort with that part of her that wasn’t being as true as she wants to be.

There are a lot of tears in the film. Were you ever crying with her behind the camera, or did you keep up a pretty solid demeanor as she’s getting so emotional? 

I never cried with her. I’m a crier, but I do not cry in my films with my film subjects. That is not my place. I think there are many ways to be empathic and to show them you’re empathic, even if you want to cry. There were moments that I really felt a huge emotional tug. But I have to tell you, as much as I felt an emotional tug, I felt frequently this incredulous feeling of, “I cannot believe she’s saying this to me. Wow.” She was so open and raw. It was surprising.

Let’s talk about the whole last sequence of the film, because you said you weren’t prepared for a seizure to take place while you were filming her at all. It takes very dramatic turns, including, after she has recovered from what is happening to her, this moving, impromptu performance. Probably no one expected one of Celine Dion’s great singing performances to be in a sweater in a nondescript room moments after she has a traumatic experience. What were you thinking as all that was going on? 

It just snowballed very quickly. She had, just 10 minutes, earlier come out of successfully wrapping up two days of recording for the first time in four years, I think. Her singing voice sounded good. She was in a good mood. We were like, “Wow, that went great for her.” And then things very quickly went south.

In the room next door to her recording booth, her therapist was there waiting for her because she gets this therapy every day. My cinematographer and I have this old cinema-verite-style (arrangement where) the director is the sound person and the DP. So I was the sound girl for most of making this film. I had a boom microphone. So I was holding the boom and I actually used the boom to try to hear her breathing, because actually I thought it was very possible she was not breathing. She was not moving and I wasn’t sure what was happening. But it really was not my place to help her physically because she had people there. She had the sports therapist there who understood the gist of what was happening. She had one of her security people there; it looked like he was caressing her to soothe her, but he was making sure she wouldn’t fall off the table — all 230 pounds of him, just making sure she was not going to fall. And then the manager was on the phone with the doctor, and everyone was doing their job.

And I realized, “You know what? I have a job to do, too. I don’t know what we’re gonna do with this footage, but I’m just gonna keep filming, because I’ve been filming with Celine for eight months, and not only has she never asked me to stop filming, she specifically told me, ‘Do not ask my permission, just do it.’” So I just did my job in that regard. But the human part of me was very uncomfortable. But I really believe in the power of nonfiction, and I really believe that we can transport people in their own imagination by showing them real things, not scripted things, not things that come out of my imagination, but just things that I knew where to point the camera and this is what happened. And in this case, I didn’t overthink it. I just kept filming.

And then eventually I showed her the scene, which was 50 minutes whittled down to between 4-5, not including the song. I showed it to her, very importantly, in the context of the whole film. It was so intensely revealing that I didn’t want to show it to her out of context, nor did I want to show her the raw footage. I mean, I would have if she asked, because she was only semi-conscious when this happened. Anyway, I showed her my fine, rough cut, and the very first thing she said was, “I think this film can help me.” I think she meant a lot of things by that. And then she said, “And I don’t want you to cut out that scene, and don’t cut it down.” And by “that scene,” we knew what she meant. I even pressed her. I was like, “Well, what about that part where you’re crying and they’re putting something up your (nose)…?” I actually pulled up the parts that to me that were (potentially upsetting or invasive). She said, “It’s OK. I told you I don’t want you to cut it. That’s what I go through. That’s what this feels like.”

Celine was not involved in the editing of this film, but she was quite firm with me actually about it, like, “That’s what you should show.” I said, “Yeah, but I cut it down.” Because it was more difficult than you even see, basically. But I did think about doing a sound design section very late in the edit. And it comes near the beginning of the film, which was my way of revealing that she has this disease at the top of the film — not the actual reveal where we’re recording her, but at the top of the film where you hear all these newscasters from all over the world, and it’s a medley of sound design. To my sound designer Laura Hirshberg, who is very well-renowned for her sound work out at Skywalker Ranch, I said, “I think I want to let Celine chime in on this soundscape that we’re creating, because she’s tried to describe with me to me what it feels like when she’s having this episode.” She always used to describe it like, “It’s like an electrical storm inside my head.” I didn’t play it for her, but, just through FaceTime after we were done filming, we talked for about an hour and she described in detail what it feels like. And so Laura and I really tried to mimic that in the sound, to sort of honor her experience.

Celine still wants to sing, we learn in the film, but she knows it can’t be at full capacity, and says, “Maybe I can sing another kind of repertoire, but then it’s gonna be their choice to still like me.” Do you have a sense, based on seeing her sing, of what might be possible for her singing-wise in the future? Do you think she is comfortable trying to do things in the studio, or elsewhere, with lowered expectations?

Celine and I talked a lot about different ways she could sing, including having a narrower vocal range in some of the songs that she performs. I think that she even talked about doing a project in American Sign Language. She was really just trying to think of all these different ways she could still sing and perform and express herself, but not necessarily sing that five-octave, wide timber that everyone’s used to. And I think she is comfortable trying to do things in the studio, and I believe that right now she is working on her voice a little more than when we were filming, which is I think partly a sign of her having a more stable prognosis and medication regimen with her new doctor. So that would be my non-professional, just observational opinion.

A lot of subjects, even if they were dealing with a health crisis in front of documentary cameras, might still go heavier on the makeup, the glam lighting, etc. Was she just fearless about that from the start, or did you have an influence on her being portrayed starkly?

Celine was completely fearless from day one. She showed up in pressed slacks and a pressed white shirt without any makeup on, and her hair pulled back into a simple bun, and it was very clear right away that she was lacking any self-awareness. She did not comment on the fact that she didn’t wear makeup. She did not comment on the fact that she was going to be casual. I never asked her to wear anything specific. I never asked her to dress down.

There was one day when I knew that I’d be coming over and nothing was planned; she didn’t have any plans to her day whatsoever. I told her simply, “Look, we can just come there and kind of follow you through the house, having your breakfast, making coffee, and you see that day in the film.” She’s making coffee; she’s hanging out with her dog; and she happened to wear her favorite pajamas. And she was telling me just the other day, actually, long after we finished filming, that she’s been wearing those pajamas several days a week and they are her favorite.

So we didn’t talk too much about how put together and kind of produced her (public) look was. I really kind of stuck in the present day because I knew that I would show that (more glamorous) person through cinematic means. So I didn’t want to bring up additional things for her to be self-aware or self-conscious about. I can tell you she was just all about comfort, and I was heartened that she could be so comfortable in front of the camera.

We talked about some of the heavy stuff in the film, but do you have a favorite moment that is not one of the more harrowing or emotional moments?

I think actually one of my favorite moments in the film is when she is wearing those beautiful Dior pajamas, and she is going through her day and listening to Maria Callas by her pool. That was such a quiet afternoon with her, and she really just let us do our thing. We put on a long lens and shot her from probably 50 feet away, and I think she just got lost in the music. Maria Callas always makes her feel very thoughtful, and also, as she said in the film, Maria Callas gives her strength. I think Maria Callas has always been a vocal mentor for Celine, and Celine talked to me a lot about Maria Callas’ life. We didn’t include that in the film, but I think she found courage in the way Maria Callas moved through the world, in spite of some of the ways people spoke about her when she was living during that time. And so I know that she is really an inspiration to Celine.

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