Dion put her battle with Stiff Person Syndrome on full dispay in her new documentary, ‘I Am: Celine Dion.’

Irene Taylor, director of the new documentary “I Am: Celine Dion,” talks about the decision to include a grueling scene of the pop star in crisis.

Celine Dion didn’t discuss filming limitations with the director in advance.Credit…Amazon Studios

Celine Dion welcomed the cameras. For the new documentary “I Am: Celine Dion” (streaming on Amazon Prime Video), the singer set no restrictions on what to film.

What follows is a painfully intimate portrait of a pop star’s body fighting itself. Dion announced in 2022 that she had stiff person syndrome, an autoimmune neurological condition that causes progressive stiffness and severe muscle spasms. During a session with her physical therapist that was being filmed for the documentary, Dion has a seizure. The camera continued to roll throughout the medical crisis.

In an interview via video call on Monday, the director, Irene Taylor, discussed shooting the documentary and why Dion’s emergency was included in the final cut. These are edited excerpts from the conversation.

I spoke with her at length, and I did not know she was ill. We were in the middle of the pandemic and I didn’t think twice about her being at home. Most of us were, and performers around the world were sort of out of commission temporarily.

We got to a place where we agreed to make the film. It was several weeks after that mutual decision that her manager asked me for a call. I figured it must be something serious because we got on the phone that day, and he told me that Celine was sick and that they didn’t know what it was. We were filming several months before there was a definitive diagnosis.

After getting the diagnosis, was the conversation on the table to stop filming?

Definitely not. When I realized that a) she had a problem with no name and b) when I actually started filming I could see how her body looked different, her face looked different, I was able to focus. The iris of my perspective got much smaller.

There was a point when I first decided I was going to do the film and I thought, “What am I going to do? Go on tour with her?” When I found out about the diagnosis, it narrowed the scope of how I would enter into her life.

Music documentaries authorized by their subjects aren’t known for depth or extremely personal moments. This, by contrast, is very raw. Were there early discussions on how much you could show?

There were no discussions on parameters, and that is because Celine did not ask for those parameters. She said to me, on the very first day, “You’re in my home, the fact that you’re here means I have let you in. Don’t ask me permission to shoot anything.”

I felt like I had to take that access with tenderness, dignity and class. There’s a lot that the camera does not see. If there was a little bit of tension or discomfort, I would back off. That’s partly what built trust over time, that she gave me everything but I didn’t take it.

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Celine Dion, right, with the director Irene Taylor, working on their documentary.Credit…Julie Begey Seureau

Tell me about your reaction in the moment toward the end of the documentary, when Dion starts to seize up during physical therapy.

I could just see this stiffness that was not like the flowing, lithe dancer that I had been filming for several months doing her physical therapy. Within a couple of minutes, she was moaning in pain.

I wanted to know if she was breathing, because she was moaning and then she stopped. I put the microphone, which was at the end of a pole you can discreetly put closer to your subject, underneath the table. I couldn’t hear her breathing.

I was very panicked. I was looking around the room, and I saw that her therapist called for her head of security. Her bodyguard immediately came into the room. I could see right away these two men were there to take care of her and they were trained to do it.

Probably within about three minutes, once this human response to want to be helpful and drop everything subsided, Nick [Midwig, the film’s director of photography] and I eased into filming everything as it happened. It was very uncomfortable. I’ve never been in a situation with a camera that has been that touch and go.

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There’s one shot on her face for close to two minutes, forcing us to really see her wrenched in pain. Why did you make the decision to not cut away for so much of that?

I spent my 20s living in Southeast Asia, and I learned a lot about observation through Buddhist teachings. There’s a Tibetan Buddhist parable about this goddess named Green Tara, who is said to be disguised and living in the world as a suffering human.

The parable teaches you that when you see a suffering being on the side of the road, when you see someone’s body ravaged by poverty or ravaged by violence, you should not look away because if your love can touch someone’s experience, you’re cultivating compassion.

I love my profession because I’m trying to access a human experience I may not have direct contact with. But if I don’t look away, if I look at this and I don’t flinch, it cultivates something in me that makes me try to understand that person better.

So we didn’t cut away. There were moments where I was like, OK, this is really intense. I let it go two or three seconds more, and then I would cut. I wanted to go just far enough that it makes people think about their own experience and not to run away. There are uncomfortable aspects of being alive, and if cinematic storytelling can get us closer to tolerating that discomfort, I want to do that with my films.

What was the conversation like with her once she had seen the documentary?

I did not bring it up with her until I showed her the entire film months later. I went into showing it to her with the idea that she might just say, let’s please not include that. That would not have been unreasonable.

She cried through most of the film. I was watching her out of the corner of my eye, but I was a little embarrassed to watch because that was such an intimate moment for her. The first thing she said to me was, “I think this film can help me.” Then she said, “I think this film can help others understand what it’s like to be in my body.”

Deeper into our conversation, she said, “I don’t want you to change anything in this film, and I don’t want you to shorten that scene.” She just called it “that scene,” and we both knew what she was talking about.

Did you talk about how Dion’s family, including her three sons, would respond?

Celine did not bring this up with me. I really let her lead the dance on anything sensitive.

I showed her the film a second time. She said, “I’m going to let the younger boys watch the movie with me, and I’m going to walk them through the film, and I’m going to let them understand what happens to my body.”

If I could have filmed that scene, that would have been the quintessential Celine. Celine, the mother. Celine, the woman who is suffering. Celine, the woman who is trying to learn something and teach something out of her own suffering to her children.

She was holding their hands and they did not seem visibly upset watching. I think it was because their mother was saying, “It’s OK, it’s just the disease. This is just what happens.”

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