Why Celine Dion didn’t want to cut stiffening episode from her documentary: She 'felt validated seeing herself like that,' director says

Celine Dion opens up about her private battle with stiff-person syndrome (SPS), a rare autoimmune neurological disorder, in her new documentary I Am: Celine Dion. The singer has said the Irene Taylor-directed film is a love letter to her fans, so for the first time, she's giving people an intimate glimpse into the health issues she's faced in recent years.

Clips from the deeply personal film have made their way online since the June 17 premiere, including a heartbreaking scene in which Dion, 56, suffers an intense stiffening episode. In an interview with Yahoo Entertainment, Taylor said she showed the singer the 100-minute Prime Video documentary ahead of the screenings.

"The film has a lot of sensitive moments. I never for a moment doubted I wanted to share it with her because it was so intimate," Taylor says. "She was teary-eyed through the whole thing."

A particularly poignant moment comes at the end of the film. After an exhausting but exhilarating day in the studio, Dion suffers a medical episode. Her body locks up and she's unable to move or speak. She can only communicate by squeezing a member of her care team's finger. A sports therapist administers diazepam nasal spray as Dion lays on a table. They monitor her pulse and refrain from calling 911. Eventually, Dion comes out of the episode. Taylor says that after watching the scene for the first time, Dion "didn't want me to change anything."

Taylor recalls watching the traumatic moment play out in person.

"Her therapist saw the [medical] episode coming on, and within 30 seconds there was no going back. We just responded as quickly as we could. We really could not move from that corner of the room. I was holding a microphone [and used it] to gauge if she was breathing or not," Taylor explained. "It was very upsetting. Very upsetting. I know it's hard on some viewers, it was hard on me too. But I will tell you that Celine felt validated to see herself like that and she thought it would help her if other people could understand what [SPS] is like."

Taylor said she and Dion "never had a conversation" prior to filming about what to do if she experienced a health issue while the cameras were rolling.

"I truly thought it was so unlikely, it was not even a conversation we needed to have," Taylor admits, noting that Dion's episodes happen infrequently. Taylor, who filmed Dion for nearly a year, said "months might go by" without the Grammy winner having an incident.

"If it does happen, [Celine] told me over and over again, 'Don't ask me permission to film, just keep rolling and we can talk about it later.' Just because you film something doesn't mean the world needs to see it. It's very private," Taylor says.

Dion saw the documentary twice before the premiere. "The second time she watched it with her twin sons, she was much more light-hearted," the director says.

The singer shares three sons with late husband René Angélil: René-Charles, 23, and 13-year-old twins Nelson and Eddy.

"[Celine] used the film actually as a teaching tool with them so that she could show them the extent of how she feels about her situation and the extent of what can happen to her body if she goes into an episode of stiff-person syndrome," Taylor adds.

Although Taylor was surprised to have witnessed a stiffening episode, she says she noticed Dion's health improve over the year they spent together.

"Because of her illness, we got started a little later than we had wanted to because she just was really having a pretty hard time. She actually got better as we were filming," Taylor recalls. "In the beginning, I think she was kind of at a low point because she didn't have a diagnosis yet, there wasn't a consensus. She was quite relieved when the diagnosis was agreed upon [by medical professionals]. Then it was like they could move forward with a more codified plan of action for her treatment."

It's evident from watching the documentary the high level of trust Dion had in Taylor.

"We kind of made a deal with each other," Taylor remembers. "She basically said, if you'll let me tell my own story and not have someone sit in a chair and talk about their memory of me, or talk about what they think of my music or my life or my medicine or my illness, if you'll just let me do this, I will give you myself."

Taylor adds: "I told her I was not only up for it, it's what made me want to make the film."

I Am: Celine Dion starts streaming June 25 on Prime Video.