Celine Dion talks about her private struggle with stiff person syndrome (SPS), a rare autoimmune neurological disorder, in her new documentary I am: Celine Dion. The singer has said that the Irene Taylor-directed film is a love letter to her fans, so for the first time she’s giving people an intimate look at the health issues she’s faced in recent years.
Excerpts from the deeply personal film have appeared online since its premiere on June 17, including a heartbreaking scene in which 56-year-old Dion experiences an intense, numbing 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 doubted for a moment that I wanted to share the film with her because it was so intimate,” says Taylor. “She had tears in her eyes the whole time.”
A particularly poignant moment comes near the end of the film. After an exhausting but exciting day in the studio, Dion suffers a medical episode. Her body locks up and she can’t move or talk. She can only communicate by squeezing the finger of a member of her care team. A sports therapist administers diazepam nasal spray while Dion lies on a table. They keep an eye on her pulse and don’t call 911. Ultimately, Dion comes out of the episode. Taylor says that after seeing the scene for the first time, Dion “didn’t want me to change anything.”
Taylor remembers seeing the traumatic moment happen firsthand.
“Her therapist saw the [medical] episode arrived and within 30 seconds there was no turning back. We simply responded as quickly as possible. We really couldn’t get out of 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 disturbing. Very disturbing. I know it’s hard for some viewers, but it was hard for me too. But I will tell you that Celine felt validated to see herself this way and she thought it would help her if other people could understand what [SPS] is like.”
Taylor said that prior to filming, she and Dion “never had a conversation” about what she should do if she developed a health problem while the cameras were rolling.
“I honestly thought it was so unlikely that it wasn’t even a conversation we needed to have,” Taylor admits, noting that Dion’s episodes don’t happen often. Taylor, who filmed Dion for almost a year, said “months could go by” without the Grammy winner having an incident.
‘If it does happen, [Celine] told me over and over, “Don’t ask me permission to film, just keep going and we can talk about it later.” Just because you film something doesn’t mean the world has 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,” says the director.
The singer shares three sons with late husband René Angélil: René-Charles, 23, and 13-year-old twins Nelson and Eddy.
“[Celine] actually used the film as a teaching tool for them so that she could show them how she feels about her situation and how much can happen to her body if she goes into an episode of Stiffy-Person Syndrome,” Taylor adds . .
Although Taylor was surprised to witness a numbing episode, she says she noticed Dion’s health improving over the year they spent together.
“Because of her illness, we started a little later than we would have liked because she was just having a pretty hard time. She actually got better during filming,” Taylor recalls. “In the beginning I think she was at a low point because she didn’t have a diagnosis yet, there was no 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.”
From watching the documentary it is clear how much confidence Dion had in Taylor.
“We kind of made a deal with each other,” Taylor recalls. “She basically said, if you 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 about my music or my life or my medicine or my illness, if you Just let me do this, I’ll give you myself.”
Taylor adds, “I told her it wasn’t just what I was looking forward to, it was the reason I wanted to make the movie.”
I am: Celine Dion begins streaming June 25 on Prime Video.
