I Am: Celine Dion - here’s the story behind shocking seizure scene

Dion has stiff person syndrome, a rare autoimmune neurological disorder that leads to severe muscle spasms.

Celine Dion opened her doors to the cameras for the new documentary “I Am: Celine Dion”, without imposing any filming restrictions.

The documentary offers a deeply intimate view of a pop star's battle with her own body. In 2022, Dion revealed she has stiff person syndrome, a rare autoimmune neurological disorder that leads to progressive stiffness and severe muscle spasms.

While filming a session with her physical therapist for the documentary, Dion experienced a seizure. The cameras kept recording throughout the medical emergency.

In a video call interview with The New York Times on Monday, director Irene Taylor talked about filming the documentary and explained why Dion's medical emergency was included in the final version.

When questioned about how she discovered Celine Dion's illness during preproduction, Taylor disclosed that she was initially unaware of Dion's condition.

She explained, "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."

Regarding whether the filming would stop after Dion's diagnosis, she affirmed, "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."

Taylor acknowledged the documentary's raw and personal nature, noting, "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."

The director elaborated, "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."

Taylor concluded, "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."