This article contains spoilers.
Celine Dion welcomed the cameras. For the new documentary “I Am: Celine Dion” (streaming on Amazon Prime Video), the singer placed no restrictions on what he could film.
What follows is a painfully intimate portrait of a pop star’s body fighting against itself. Dion announced in 2022 that she had stiff person syndrome, an autoimmune neurological disorder that causes progressive stiffness and severe muscle spasms. During a session with her physiotherapist that was filmed for the documentary, Dion has a seizure. The camera kept rolling during the medical crisis.
In an interview via video call on Monday, the director, Irene Taylor, discussed the shooting of the documentary and why Dion’s emergency was included in the final cut. These are edited excerpts from the conversation.
How far into pre-production did you hear about Dion’s illness?
I talked to her for a long time and I didn’t know she was sick. We were in the middle of the pandemic and I didn’t think twice about her being home. Most of us were, and artists around the world were temporarily sidelined.
We got to a point where we decided to do the film. It was a couple of weeks after that mutual decision that her manager asked me to call. I thought it must be something serious because we called that day and he told me that Celine was sick and they didn’t know what it was. We had been filming for a couple of months before there was a definitive diagnosis.
After the diagnosis has been made, is the discussion about stopping filming on the table?
Absolutely not. When I realized that a) she had a problem without a 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 became much smaller.
There was a point where I decided I was going to do the movie and I thought, “What am I going to do? Tour with her?” When I learned about the diagnosis, it limited the scope of how I would enter her life.
Music documentaries that are approved by their subjects aren’t known for their depth or extremely personal moments. This, on the other hand, is very raw. Were there discussions early on about how much you could show?
There were no discussions about parameters, and that’s because Celine didn’t ask for those parameters. She said to me, on the very first day, “You’re in my house, the fact that you’re here means I let you in. Don’t ask me for permission to shoot anything.”
I felt like I had to use that access with tenderness, dignity, and class. There is a lot that the camera doesn’t see. If there was a little tension or discomfort, I would withdraw. That’s partly what built the trust over time, that she gave me everything, but I didn’t take it.
Tell me about your reaction at the end of the documentary, when Dion starts having convulsions during physical therapy.
I could just see this stiffness that looked nothing like the fluid, limber dancer I had been filming for several months doing her physical therapy. Within a few minutes she was groaning in pain.
I wanted to know if she was breathing, because she was groaning and then she stopped. I put the microphone, which was on the end of a pole that you can discreetly move closer to your subject, under the table. I couldn’t hear her breathing.
I was very panicky. I looked around the room and saw her therapist calling her head of security. Her bodyguard immediately entered the room. I could tell right away that these two men were there to care for her and that they were trained to do so.
Probably within about three minutes, after this human reaction of wanting to be helpful and drop everything had gone away, Nick [Midwig, the film’s director of photography] and I started filming everything as it happened. It was very uncomfortable. I’ve never been in a situation with a camera that was going so fast.
There is one shot on her face lasting almost two minutes, where we really see her wracked with pain. Why did you decide not to cut so long away?
I spent my twenties in Southeast Asia and learned a lot about observation through Buddhist teachings. There is a Tibetan Buddhist parable about this goddess called Green Tara, who is said to be in disguise and lives in the world as a suffering human being.
The parable teaches you that when you see a suffering being on the side of the road, when you see someone’s body destroyed by poverty or ravaged by violence, you should not look away, because when your love can touch someone’s experience, you cultivate compassion. .
I love my job because I try to access a human experience that I may not have direct contact with, but if I don’t look away, if I look at this and don’t shy away, it cultivates something in me that makes me try to understand that person better.
So we didn’t go away. There were moments where I thought, OK, this is really intense. I let it go for two or three seconds and then I cut. I wanted to go just far enough so that people would reflect on their own experiences and not walk away. There are uncomfortable aspects of life, and if cinematic storytelling can bring us closer to tolerating that discomfort, that’s what I want to do with my films.
What was the conversation like with her after watching the documentary?
I didn’t tell her until I showed her the whole movie months later. I went to show it to her thinking she might say, please, let’s not record that. That wouldn’t have been unreasonable.
She cried most of the film. I watched her out of the corner of my eye, but I was a little embarrassed to watch it because it 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 other people understand what it’s like to be in my body.”
Deeper into our conversation, she said, “I don’t want you to change anything about this movie, 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.
Have you talked about how Dion’s family, including her three sons, would react?
Celine did not bring this up with me. I really let her lead the dance on anything sensitive.
I showed her the movie 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 movie, and I’m going to make them understand what’s happening to my body.”
If I could have filmed that scene, it would have been the typical Celine. Celine, the mother. Celine, the woman who suffers. Celine, the woman who tries to learn and teach something from her own suffering to her children.
She held their hands and they didn’t seem visibly upset when they looked. I think it was because their mother said, ‘It’s okay, it’s just the disease. This is just what happens.’
