Celine Dion Wanted to Show Footage of Her Seizure, Plus More Revelations from Her Documentary

Minor spoilers ahead.

Celine Dion is a performer of the highest degree—the kind who can outshine the Las Vegas Strip and cause chills with her singular belt and power stance. Even videos of her simply walking down the street exude a certain pizzazz. But in her new documentary I Am: Celine Dion, now streaming on Prime Video, the music legend sheds the pomp and splendor and shows herself as human.

Directed by Irene Taylor, the film gives a raw look at Dion as she battles stiff person syndrome, which Johns Hopkins Medicine describes as “a rare autoimmune neurological disorder that most commonly causes muscle stiffness and painful spasms that come and go and can worsen over time.” Dion, 56, previously detailed her diagnosis in a video message to fans, explaining why she postponed her tour dates in 2022 (which she ended up canceling altogether). But the documentary goes into specific detail, from scenes of her going over her medication with a nurse, to her struggling to sing, to videos of her hospitalization and stiffening during a physical therapy session.

In one moment, Dion remembers “losing my balance a lot, it was hard to walk, lot of pain, and I can’t use my voice yet. Music, I miss it a lot. But also, the people.”

Amid her health journey, the film also includes personal footage of her at home with her sons, René-Charles, Eddy, and Nelson, and her late husband, René Angélil, who passed in 2016. Somber moments are pierced with the singer’s laugh-out-loud humor (her bit about squeezing into any shoe is a hoot) and, of course, her undying passion for music.

Below, a few takeaways Dion shares about her health and career—which is far from over yet.

She started experiencing voice spasms 17 years ago.

Although Dion’s diagnosis only went public a few years ago, she was starting to feel the effects of her illness almost two decades earlier. In the film, she recalls having trouble during vocal warmups, where her voice would crack, and then it would get more and more difficult to sing more notes. “It freaked me out a little bit,” she says.

Later, she explains that when she breathes, her lungs work fine, but the muscles in front of them sometimes stiffen, causing difficulty singing. She sings a part of “I Want to Know What Love Is,” her voice going hoarse while trying to belt the big notes. “It’s very difficult for me to hear that, and to show this to you,” she says, crying. “I don’t want people to hear that.”

The emotional response is understandable for the five-time Grammy winner, who acknowledges in the documentary, “My voice was the conductor of my life.” She knew that’s what others expected of her, too. “There’s been moments where I would go to the studio and I knew they wanted ‘Celine Dion,’” she remembers. And she didn’t want to disappoint them.

At one point, she “needed medicine to function.”

Dion remembers taking 80 to 90 milligrams of Valium per day, so she could perform without feeling her symptoms. But sometimes, after getting into wardrobe and warming up, the medicine would wear off before she hit the stage, so she would take more. “I needed medicine to function,” the singer remembers.

If her voice started cracking during a live show, Dion knew how to hide it. She would point the microphone to the audience and have them sing the lyrics to her, and they wouldn’t notice at all. Sometimes she would even tap the mic if her voice broke while singing, to make it seem like it was the machinery’s fault.

“The lie is too heavy now,” Dion says.

She returns to the recording studio, but it’s a challenge.

One of the most compelling moments of the film shows Dion returning to the recording studio for the first time in years. Though it’s a calm, private environment, with dozens of candles lit behind her in the booth, you can feel her trying to talk herself out of her nerves.

“Emotionally, it’s very difficult. I will in the next few minutes find strength, and if it cracks and it doesn’t work, there’s nothing I can do,” she says, sounding confident at first. But she gets more and more frustrated as the session goes on. When she returns to the studio the next day, she’s unhappy hearing what she’s recorded, and she tries again. Thankfully, she’s happier with the work she put in on day two. But the high she receives from nailing that performance soon backfires.

She has a seizure on camera, which she did not want to cut from the film.

When Dion heads to physical therapy after her recording session, she was apparently so emotionally and mentally overstimulated that it caused her body to stiffen up. In the hardest moment to watch in the film, Dion’s entire body stiffens, and her trainer and an EMT rush to her aid as she lies frozen in pain. The camera stays on her the whole time as she slowly comes back to full consciousness.

Taylor explained to the LA Times what it was like recording that moment, and how Dion encouraged her to include it in the documentary.

“We could have turned the camera off, but we had been filming for eight months at that point, and Celine said, ‘Film everything.’ I thought to myself, ‘I gotta make sure this woman’s breathing,’ so I just pushed my headphones into my ear, and I listened, and I could not hear her breathing. I asked, ‘Is she breathing?’ She was able to squeeze [the therapist’s] hand. I looked at my [director of photography], and we just kept going.

“I was actually grateful that about four minutes into the episode, you hear her therapist mention that the cameras are in the room, and he checks with her if it’s OK. I wasn’t sure what she would say in that moment, but she said it was OK. I couldn’t believe what had happened, and I was so grateful she was OK, but I realized that it might be an opportunity, if Celine was up for it, to really show and really validate her suffering.”

Taylor recalls showing Dion a rough cut of the film six months after that. “She said, ‘I think this film will help me.’ Then she said, ‘Don’t cut down that scene.’”

She has an unwavering perseverance.

Throughout the film, Dion proves she will not give up her fight. “If I can’t run, I’ll walk. If I can’t walk, I’ll crawl,” she says in one powerful sit-down.

Moments after her seizure, even after her physical therapist tells her that the overstimulation of performing and making music can lead her to stiffen up again, she breaks into song—fittingly, the power ballad “Who I Am” by Wyn Starks—her voice floating to each note as she sings along with the speaker, even if she’s not singing at her full power.

Her closing line in the film says it all: “I won’t stop.”

Watch I Am: Celine Dion on Prime Video