Celine Dion ‘almost died’ amid struggle with stiff-person syndrome

Article content

Celine Dion tells Today co-host Hoda Kotb that she “almost died” during her battle with Stiff Person Syndrome (SPS) in an upcoming interview.

Article content

“Celine Dion at some point, she is now much better, but at some point she almost died, which is something that she says. It was a scary time and she’s dealing with this,” Kotb told Jenna Bush Hager during a segment of Hoda and Jenna, teasing her upcoming chat with the Canadian-born music superstar. 

Article content

Article content

“I travelled to Las Vegas, and I got to have a rare conversation with Celine Dion. She has not performed live in years and years and a lot of people have wondered what happened and what was wrong,” she said earlier in the morning on the Today show. “She was diagnosed with a terrible disease and at one point she wondered if she was going to make it, whether she was going to live through it.”

Article content

Article content

Dion will talk about what her battle against SPS has done to her voice and the “possibility of a comeback.”

Kotb said her conversation with Dion, 56, was “emotional” and that she sang for her when they met and sounded “incredible.”

In addition to her one-hour primetime interview with Kotb that will air on June 11, Dion is set to open up about her battle with SPS and her struggle to return to the stage in the trailer for her upcoming Prime Video documentary, I Am: Celine Dion.

“My voice is the conductor of my life … I see my life and I love every piece of it,” she says in a trailer that was released last week. She goes on to say she wasn’t prepared to talk about her diagnosis back in 2022, but she’s “ready now.”

Dion’s incurable condition is rare and causes severe and persistent muscle spasms that can strike without notice.

Article content

Symptoms of the affliction mimic the characteristics of other ailments such as Parkinson’s Disease or multiple sclerosis. The muscle spasms associated with SPS sometimes appear out of the blue and can be triggered by loud noise or emotional distress, according to the Cleveland Clinic.

The muscle spasms can be severe enough to affect mobility and cause a patient to fall. As it progresses, the disease makes if more difficult to walk and falls can become more frequent.

“It’s not hard to do a show, you know. It’s hard to cancel a show,” Dion says tearfully in the documentary. “I’m working hard everyday. But I have to admit, it’s been a struggle. I miss it so much. The people, I miss them. If I can’t run, I’ll walk. If I can’t walk, I’ll crawl. I won’t stop.”

Article content

Last month, Dion shared a first-look photo from the film to her Instagram account, promising that the documentary will offer “a raw and honest behind-the-scenes look at the iconic superstar’s struggle with a life-altering illness.”

“Serving as a love letter to her fans, this inspirational documentary highlights the music that has guided her life while also showcasing the resilience of the human spirit,” the My Heart Will Go On singer’s team wrote alongside the image which shows Dion holding up an empowered fist.

Article content

Directed by Oscar-nominated filmmaker Irene Taylor, the career-spanning doc will capture the music icon’s “never-before-seen private life” as it “takes viewers on a journey inside Celine’s past and present as she reveals her battle with SPS and the lengths she has gone to continue performing for her beloved and loyal fans.”

“This last couple of years has been such a challenge for me, the journey from discovering my condition to learning how to live with and manage it, but not to let it define me,” Dion said in a statement. “As the road to resuming my performing career continues, I have realized how much I have missed it, of being able to see my fans. During this absence, I decided I wanted to document this part of my life, to try to raise awareness of this little-known condition, to help others who share this diagnosis.”

Article content

In a separate interview with Vogue released earlier this month, Dion said her rehabilitation has involved all facets of her life.

“It’s not just about vocal exercising and doing Pilates. It’s rehabilitation physically and vocally, emotionally and spiritually — the whole shebang. And I want this story to be told in a classy way. I respect my fans and myself enough for them to know the full truth,” she said.

The six-time Grammy winner said that when she was diagnosed with SPS there was a sense of relief in finally knowing what was bothering her after suffering mysterious health issues that she had been suffering from for over a decade.

“It probably sounds very strange to say this to you, but when I was diagnosed, I was happy. I was finally able to move with the wave, not against it,” Dion said.

Article content

Dion added that she hopes the documentary will encourage her fans to pay attention to their own health.

“I hope that the documentary doesn’t frighten people, but awakens people to SPS. … It took 17 years for me — please don’t wait that long,” she said.

Last year, The Power of Love singer’s sister, Claudette, said that Dion lost control of her muscles.

“She’s working hard, but she doesn’t have control over her muscles. What breaks my heart is that she’s always been disciplined,” Claudette told the French-language site 7 Jours. “She’s always worked hard. Our mother always told her, ‘You’re going to do it well, you’re going to do it properly.’”

But this past February, Dion made a comeback when she appeared at the Grammy Awards.

Article content

“When I say that I’m happy to be here I really mean it from my heart,” Dion said after making her way to the podium. “Those who have been blessed enough to be here must never take for granted the tremendous love and joy that music brings to our lives and to people all around the world.”

Dion also made a surprise appearance at a hockey game between the Boston Bruins and the New York Rangers in March where she was spotted in the stands with her twin sons Nelson and Eddy lip-syncing to Bon Jovi’s ’80s hit Livin’ on a Prayer.

In videos shared to social media, Dion was seen energetically stomping along to the 1986 hit. At one point, she broke out her very best air guitar routine.

Article content

Later in the game, which the Bruins ended up losing by a score of 5-2, Dion blew kisses to the crowd and smiled happily when she was shown on the Jumbotron during a break in the action.

[email protected]

Article content