Celine Dion details health battle, home life in new doc: Most emotional moments

The doc takes fans into the singer's battle with stiff-person syndrome.

June 25, 2024, 2:51 PM

Celine Dion's new documentary, "I Am: Celine Dion," is now streaming, and it is taking fans inside the life of the Canadian superstar like never before.

Directed by Academy Award-nominated filmmaker Irene Taylor, the doc features the "My Heart Will Go On" singer opening up about her diagnosis of stiff-person syndrome, a rare autoimmune neurological disorder, as well as how it has impacted her life in the last few years.

In the doc, Dion says, "Before I got really hit with SPS, my voice was the conductor of my life. I was following it."

"And I was OK with that because I was having a great time," she continued. "When your voice brings you joy, you're the best of yourself."

Read on to learn more about everything the five-time Grammy winner shares about her life in "I Am: Celine Dion."

Inside her battle with stiff-person syndrome

In 2021, Dion canceled her much-anticipated concert residency in Las Vegas. In December of the next year, she announced via a video she posted to social media that she had been diagnosed with stiff-person syndrome.

At the time, she said the condition had been causing her to have spasms which "affect every aspect of my daily life, sometimes causing difficulties when I walk and not allowing me to use my vocal chords to sing the way I am used to."

Dion said in the doc she first began to experience "vocal spasming" 17 years ago, saying "that's the way it started" and that "it freaked me out a little bit" and she was "scared" when her voice wasn't acting the way it should.

In the doc, she details the extent of the pain she was experiencing, saying, "I got to a point that I couldn't walk anymore."

PHOTO: Scene from I Am: Celine Dion.
Scene from I Am: Celine Dion.
Prime Video

"I was losing my balance a lot. It was hard to walk. A lot of pain. And I can't use my voice yet," she continued. "Music, I miss it a lot. But also…the people. I miss them, you know?"

Dion also details how she says her vocals are impacted by her condition, explaining, "When I try to breathe, my lungs are fine. It's what's in front of my lungs that's so rigid, because of stiff-person syndrome…" she says, attempting to sing and getting tearful.

She added, “It's very difficult for me to hear that and to show this to you. I don't want people to hear that."

Dion also detailed the medicine she said she was taking due to her health problems, saying, "I need my instrument. And my instrument was not working. So we started to elevate the medicine."

"I was to 80 milligrams to 90 milligrams of Valium a day. That's just one medicine," she said. "I don't want to sound dramatic, but I could've died."

The singer further detailed, "I was taking those medicines because I needed to walk. I needed to be able to swallow. I needed medicine to function. One more pill. Two more pills. Five more pills. Too many pills. Show must go on."

Dion said the pain she was experiencing led her to have to pause and cancel shows.

"When I had to cancel shows, you know, we have to tell the crowd why, the people why. Lying. I can't lie anymore," she said. "Sometimes, I would point my microphone towards the audience, and I would make them sing it. There's moments where I cheated and I tapped on the microphone like it was the microphone's fault."

"The lie is too heavy now," she added.

Dion details her connection with her fans

The singer also detailed the emotional toll disappointing her fans took on her.

"It's not hard to do a show, you know? It's hard to cancel a show," she said. "If somebody sees me have a good time for a moment with my family and I was supposed to be onstage and they had a ticket that night, they have the right to come to me and say, 'Hey.' I can't just do whatever I want. I can't go out. I'm stuck."

PHOTO: I Am: Celine Dion Poster.
I Am: Celine Dion Poster.
Prime Video

Dion explained her relationship with her fans by likening herself to an apple tree in a moving analogy.

"They paid a lot of money around the world to come and see our shows," she said. "I'm an apple tree, and people are in line and I give them apples, the best, and I shine them. And they all leave with a basket of apples. And my branches are starting to fall sometimes, get crooked. And those branches are starting to produce a little less apples, but there's still as many people in line. I don't want them to wait in line if I don't have apples for them."

Inside Dion's home life

The doc lifts the veil on Dion's life as a mother to her twin sons, Nelson and Eddy, at home, showcasing scenes of them playing video games together and Dion sending them off to school.

There's also plenty of home video footage of Dion throughout the years, including the birth of her eldest son, René-Charles, and the twins, as well as sweet moments of her sons with their late father, Dion's longtime husband René Angélil, who died in 2016.

We also go back to Dion's childhood, seeing her at home with her parents and her 13 brothers and sisters.

In the doc, Dion spoke about her relationship with her late mother, Thérèse Dion, who died in 2020, whom she called a "very strong person."

PHOTO: Celine Dion attends the "I Am: Celine Dion" New York special screening at Alice Tully Hall on June 17, 2024 in New York City.
Celine Dion attends the "I Am: Celine Dion" New York special screening at Alice Tully Hall on June 17, 2024 in New York City.
Cindy Ord/Getty Images

"Mom is the superhero," she said. "We only felt love, affection, attention, music. I have that in me. This is my greatest foundation."

"The person that I am today, I didn't invent myself," she added. "I didn't create myself. I am."

Dion also took fans inside a warehouse featuring fashion pieces, mementos and artifacts from throughout her iconic career.

"I feel like Liberace," she said. "When I go there, I see my life -- and I love every piece of it."

Dion's seizure shown in documentary

In one of the most harrowing moments near the end of the doc, Dion is shown laying on a massage table while being examined by her sports medicine therapist, Terrill Lobo, when she begins to experience spasms in her hands and feet, which leads to a seizure.

As Lobo attempts to work out Dion's spasms, she tenses up and goes into a seizure as he declares "she's in a crisis" and lifts her and turns her on her side. He also administers medication while she groans in pain. A blood pressure cuff is put on Dion as others in the room work to reassure and comfort the singer in the moment.

In the doc, Dion reflects on the seizure, saying, "Every time something like this happens, it makes you feel so embarrassed.

"I don't know how to express it … you know, like, to not have control of yourself, you know?"

PHOTO: I Am: Celine Dion - Celine reminiscing on her childhood
I Am: Celine Dion - Celine reminiscing on her childhood.
Prime Video

Dion's sports medicine therapist tells her that the moment was brought on by her brain being "overstimulated."

"If I can't get stimulated by what I love, and then I'm going to go onstage and, like, uh, you're going to put the pulse oximeter on me and turn me on my back?" she questions.

Lobo then tells Dion it's not the end of her journey.

"I still see myself dance and sing. And I always find plan B and C, you know?" she says at the end of the doc. "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."

"I Am: Celine Dion" is now streaming on Amazon's Prime Video.

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