"I could've died": Six of the most heartwrenching moments from "I Am: Celine Dion"

In Prime Video's documentary, the powerhouse musician opens up about her journey with stiff person syndrome

By Nardos Haile

Staff Writer

Published June 27, 2024 12:37PM (EDT)

Singer Celine Dion performs onstage during the 2016 Billboard Music Awards at T-Mobile Arena on May 22, 2016 in Las Vegas, Nevada. (Kevin Winter/Getty Images)
Singer Celine Dion performs onstage during the 2016 Billboard Music Awards at T-Mobile Arena on May 22, 2016 in Las Vegas, Nevada. (Kevin Winter/Getty Images)

Celine Dion is one of the most prolific pop vocalists of our time. So what happens when she can no longer command the voice that made her into an international best-selling artist?

This is the struggle Dion has been privately living with for more than a decade and publicly since she revealed her diagnosis of the rare neurological disorder called stiff-person syndrome in 2022. The illness has resulted in the singer postponing her Las Vegas residency in 2021 and eventually canceling her tour in 2022. Prime Video's documentary "I Am: Celine Dion" directed by Irene Taylor Brodsky pulls back the curtain from Dion's celebrity image, giving audiences a glimpse of what it is like to live with stiff-person syndrome while being a mother and one of the most famous singers in the world.

In this intimate behind-the-scenes look at the singer's life, audiences experience the challenges Dion faces as she undergoes rehabilitation treatments to combat the muscle spasms associated with SPS. The singer has mostly stayed outside of the public eye as she spends most of her week on “athletic, physical and vocal therapy.” The documentary illuminates Dion's private and public fight to gain control over her body and most importantly the voice that has gotten her this far.

Here are some of the most heart-wrenching revelations about Dion's life and experiences with stiff-person syndrome.

SPS has affected her singing for over a decade
At the beginning of the documentary, Dion reveals, "Seventeen years ago I started to experience some voice spasming. This is the way it started. I woke up one morning and I had my breakfast. After having my breakfast my voice started to go up. It freaked me out a little bit."
Dion explains that as a singer normally if your voice is tired it goes half a key or one note down. She experienced the opposite. It prohibited her from doing sound checks before a performance for too long. "But if you don't warm up long enough, you can hurt yourself. So I was scared. I didn't know what to do.
"It's in the muscle. It's in the tendons. It's in the nerves. You can't see anything because it's not seeable," she says about stiff-person syndrome. "Last year I got to a point where I couldn't walk anymore. I was losing my balance a lot. It was hard to walk. A lot of pain and I can't use my voice yet. Music — I miss it a lot but also the people — I miss them."
Further into the documentary, Dion describes many incidents where her voice would go out and she would "cheat," describing that she would either tap her microphone like there was an issue, run off stage for a quick change or stop a show altogether. "The lie is too heavy now," Dion says.
Dion comes from a large musical family
The documentary travels back to Dion's roots, which began in Charlemagne, Québec. The singer grew up with 13 siblings and loving parents who encouraged their children to pursue music as their own musical interests took a backseat. Archival footage shows the family singing, dancing and partying together. Dion's mother played violin and met her father through music.
"My dad worked but my mom made it happen. But sometimes there was nothing left in the fridge. She never told us, 'We have nothing to eat tonight.' We only felt love affection, attention, music. I have that in me. This is my foundation," Dion recalls.
Dion's late husband is honored
It's been eight years since Dion's husband René Angélil passed away at 73 from cancer. The documentary highlights that Dion remembering her late husband through their. Archival footage of one of her performances of "All By Myself" is intercut with videos and photos of the couple that were together for 28 years.
Later, she displays a necklace she's wearing that has various charms attached to it.
"My husband offered this to me. It was owned by Maria Callas. She's definitely one of the most amazing opera singers in the world. I hope she gives me some strength. I think she will," she says.
Dion has to recalibrate her relationship with her voice
"Before SPS, my voice was the conductor of my life. I was following it," she says. "'You lead the way. I follow you.' I was OK with that because I was having a great time. When your voice brings you joy, you're the best of yourself. 'You can be the leader. My ego is not that big. If you want to take that role — take it I don't care. I'm having a good time here.'"
Then Dion demonstrates how her voice cracks, further showing the difficulties singing with SPS. "That's what happens and it's very difficult for me to hear that and to show this to you. I don't want people to hear that," she says through tears.
She continueds "I think I was very good. I think I had some stuff that was amazing. But there's been moments where I had to go to the studio and I knew they wanted Celine Dion. Who is Celine Dion? Celine Dion is the one who sang 'All by myself anymore' the highest note ever and whatever. She's the best."
Dion reveals prescription drug use to deal with SPS while performing
At a certain point, while Dion was still performing regularly, her voice began to give out and she needed something to help alleviate the pain but also something that would allow her to perform at such an intense level. "I need my instrument and my instrument was not working," she says.
"So we started to elevate the medicine. There's a longevity in the drug, you know? And when your adrenaline kicks in, when you hear the crowd, 'Celine! Celine! Celine!' Twenty minutes later, it was gone. From my dressing room, getting backstage, saying good luck to everybody."
She continues, "But then I feel a spasm and my voice goes up. The medicine was burned out. It was gone. I was to 80 milligrams to 90 milligrams of Valium a day. That's just one medicine. I don't want to sound dramatic but I could've died.
"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," she explains.
Celine has a spasmodic attack that leads to full-body rigidity
There are two medical emergencies audiences see through the documentary. One is very brief at the start of the documentary and the other is an excruciating five minutes of Dion suffering through an SPS flare-up. After a successful recording session, Dion heads to her physical therapy but then notes that her foot is spasming. 
This immediately escalates and Dion's condition worsens, leading to her body freezing up. Her therapist places her on her side as she begins to cry. The singer appears to be in some sort of distress or pain before she is given two doses of nasal spray which helps her relax her muscles.
Her therapist says, “If she goes back into spasm, then we’ll do a 911” call. However, the medication slowly brings Dion back. Director Irene Taylor told Salon that Dion experienced the attack for 50 minutes. "I could have given you 50 minutes of it and instead, I gave you five. So she was experiencing it for 50."

The director explained, "The first time she saw it was in an edited form in the film that I showed her. And she specifically said, 'Don't take one second away.' So we kept it in."

"I Am: Celine Dion is available to stream on Prime Video 

By Nardos Haile

Nardos Haile is a staff writer at Salon covering culture. She’s previously covered all things entertainment, music, fashion and celebrity culture at The Associated Press. She resides in Brooklyn, NY.

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