Dion, 56, was diagnosed with SPS in 2022. The autoimmune neurological disorder is extremely rare, estimated to affect only one in a million people. It causes muscles to progressively stiffen and spasm, creates severe chronic pain and reduces mobility.
In one particular scene, Dion lies on a massage table crying and spasming uncontrollably as healthcare workers franticly try to calm a prolonged seizure that occurs during a physical therapy session.
The documentary’s camera crew filmed the 10-minute seizure after Dion requested they stay. As the singer winced and groaned in pain, medics cared for her, stroking her back and administering a nasal spray used to treat cluster seizures and offset symptoms.
The healthcare professionals ensured Dion lay comfortably on her side, monitoring her vitals as she suffered through the seizure and painful convulsions.
Once the seizure had subsided, the Think Twice singer sat up and addressed the unexpected medical episode on camera.
A medical professional squeezes Celine Dion's hand during the unexpected seizure. Photo / Amazon Prime
“Every time something like this happens it makes you feel so embarrassed and so, like, I don’t know how to express it, it’s just ... you know, like to not have control of yourself,” she admitted to the crew.
“I still see myself dance and sing. I always find plan B and plan C, you know. That’s me. If I can’t run, I’ll walk. If I can’t walk, I’ll crawl. But I won’t stop. I won’t stop.”
The documentary’s director Irene Taylor - whose work includes Beware the Slenderman and the Oscar-nominated short doco The Final Inch - said although she questioned whether she should film Dion in so much pain, the singer wanted her to capture the heartbreaking footage.
She told Yahoo that Dion didn’t want anything changed or removed from the cut they took after they viewed it.
“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 said to Yahoo.
“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 Céline felt validated to see herself like that, and she thought it would help her if other people could understand what [SPS] is like,” she added.
Celine Dion is cared for by medical professionals after suffering from a 10-minute seizure. Photo / Amazon Prime
Taylor said the pair never discussed what they would do in the event of a medical episode while filming and the director admitted she thought it was “so unlikely” given they happened sporadically.
“If it does happen, [Céline] told me over and over again, ‘Don’t ask me permission to film, just keep rolling and we can talk about it later’.”
Speaking separately to PA Media, Taylor commended Dion’s strength during the health scare.
“After the episode occurred, and she sang that beautiful song, she left in very high spirits. Believe it or not, she left that location in very high spirits. And she was actually taking care of me,” Taylor explained.
“She squeezed my hand and she was just about to drive away in the car, she reached her hand out the window. And she said, ‘Don’t worry about what happened’.
“And I think that was her way of saying, if you filmed that you can you know, it’s okay. It’s okay.”
People swarmed social media to share their thoughts on the Canadian singer’s recently released tell-all documentary, which was made to shine a light on the extent of Dion’s private struggles with SPS.
Fans described the “emotional” documentary as “raw” and “honest” and praised Dion for showing both her courage and vulnerability on camera.
I Am: Celine Dion shows a vulnerable side of the superstar, as Celine Dion opens up for the first time about her diagnosis. Photo / Cindy Ord via Getty Images
“I just finished watching #iamcelinedion. It was such a raw and emotional watch. The last part broke me. Her resilience is unmatched. Celine, I love you with all my heart. Forever and always,” one person posted on X.
“Just watched I Am Celine Dion and that was so raw, honest and emotional,” another person wrote. “So sad and so hard but if anyone can find their voice again and get back on their feet, it’s @celinedion!! She’s one determined lady!! We can’t wait for her to return!”
A third person wrote: The way y’all feel about Beyonce and Taylor is the way I feel about Celine Dion ... And this documentary has me in SHAMBLES. I love her so much. They just don’t make them this talented or gracious or wise anymore. #IAmCelineDion.”
