Celine Dion talks accepting stiff person syndrome diagnosis, first meeting husband at 12

Celine Dion is opening up about how music has motivated her through strenuous physical therapy for stiff person syndrome.

"It's a lot of work," the "My Heart Will Gone On" singer told Vogue France in a cover story published Monday. "I didn't fight the disease, it is still in me and forever."

She continued, "We will find, I hope, a miracle, a way to cure it with scientific research, but I must learn to live with it. So that's me, now with stiff person syndrome. Five days a week I do athletic, physical and vocal therapy. I work on my toes as well as my knees, calves, fingers, singing, voice…"

Dion said at the beginning on her diagnosis, she blamed herself and was searching for answers on the "why" of it all. "Life doesn't give you answers. You simply have to live it! I have this disease for some unknown reason," she said.

The Grammy-winning vocalist was at a crossroad.

"I have two choices. Either I train like an athlete and I work super hard or I disconnect and it's over, I stay at home, I listen to my songs, I stand in front of my mirror and I sing to myself. I chose to work with all my body and all my soul, from head to toe with a medical team," she said. "I want to be my best self. My goal is to see the Eiffel Tower again!"

Dion said her family, children and "above all" her fans have motivated her to find treatments that worked. "People who suffer from (stiff person syndrome) may not have the chance or the means to have good doctors or good treatments," she acknowledged. "I have these means, I have this gift. Plus, I have this strength in me. I know nothing is going to stop me."

On International Stiff Person Syndrome Awareness Day in March, Dion shared a heartfelt Instagram post with a rare photo surrounded by her three sons: René-Charles, 23, and her 13-year-old twins, Nelson and Eddy.

"As many of you know, in the fall of 2022, I was diagnosed with Stiff Person Syndrome (SPS). Trying to overcome this autoimmune disorder has been one of the hardest experiences of my life, but I remain determined to one day get back onto the stage and to live as normal of a life as possible," Dion said in the caption, referencing her diagnosis announcement video on the platform in December 2022.

Dion told Vogue France that although she still has the desire to get back on stage, she doesn't have a timeline. "My body will tell me," she said. "On the other hand, I don't want to just wait. … But there is one thing that will never stop, and that is wanting. It's the passion. This is the dream. It's determination."

The musician, who made a surprise public appearance at the 2024 Grammys, was styled for Vogue by Law Roach, who's been making waves with Zendaya on her "Challengers" movie press tour. For the cover, Dion wore a brown trench coat and a tan Saint Laurent wrap dress with a maroon statement belt and matching gloves as she sat on stool.

Dion took on more active poses in other photos, including a dance pose in an open button down shirt and jersey mini skirt by Balenciaga, and movement in a Schiaparelli blouse with exaggerated ruffles over tights.

Celine Dion opens up about meeting late husband René Angélil when she was 12, early days of fame

Dion revealed she's been excited by music since she was 5 years old, which is presumably why she is eager to return to performing for her fans.

The singer's late husband René Angélil, who died in 2016 from throat cancer at age 73, received a demo of an aspirational Dion when she was 12 that she produced with her brother Jacques.

"My mother dressed me in her bits of lace, she dyed my shoes and, for the first time in our lives, well mine for sure, we took the bus and the subway. It was like I was going to New York, like I was going to the end of the world. I was a little scared, I was anxious and I clung to my mother," Dion recalled. "We went into a building, into an elevator, into an office where there were gold records, a secretary … And there, he opened the door."

Angélil was 26 years older than the "Power of Love" singer.

"This man, very handsome, very well dressed, very classy, ​​asked me: 'Can you sing a little part of the song for me?' Singing in front of one person is worse than singing in front of 20,000. He gave me a pencil and said, 'Imagine it’s a microphone. Yes, it’s going to be okay!' He wanted to make sure it was really me singing on the model," Dion remembered. "When I sang, he started crying. That's how I met René."

Angélil went on to be her manager and husband from 1994 to his death.

Dion said she didn't feel like she missed out on a "normal" childhood as she gained attention because performing was "another school."

"Did I have boyfriends and girlfriends? Did I miss something? I never had time to have all that. So I can't compare. Do I have any regrets? I don't know, I don't know anything about it and I don't care because the stage, my family, my children, my songs have taught me everything," she said. "I had no friends. I had the stage and my family, I had the best. I didn't want anything else."

Stiff person syndrome:Celine Dion is battling a rare neurological disorder. What is it?

Upcoming Prime Video documentary will detail Celine Dion's stiff person syndrome diagnosis

In January, Amazon MGM Studios announced "I Am: Celine Dion," a feature-length documentary that will stream worldwide on Amazon Prime Video in June after acquiring worldwide rights to the film.

Irene Taylor, an Academy Award-nominated filmmaker, followed Dion for more than a year for the documentary, which promises to capture "a global megastar's never-before-seen private life," according to a press release.

"This intimate exploration takes viewers on a journey inside Celine's past and present as she reveals her battle with Stiff Person Syndrome (SPS) and the lengths she has gone to continue performing for her beloved and loyal fans," the press release stated.

Celine Dionopens up about stiff person syndrome diagnosis following Grammys appearance

What is stiff person syndrome?

Stiff person syndrome, or SPS, is a rare "neurological disorder with features of an autoimmune disease," the National Institute of Neurological Disorders and Stroke notes.

"It's a disease that's characterized by progressive muscle stiffness, muscle spasms, rigidity – typically in the muscles of the back, specifically the lower back, as well as the upper legs," Dr. Kunal Desai, a Yale Medicine neurologist and assistant professor of neurology who specializes in neuromuscular disease, previously told USA TODAY.

The disease causes "progressive muscle stiffness and painful spasms" that can be triggered by environmental factors such as "sudden movement, cold temperature or unexpected loud noises," Johns Hopkins Medicine said. 

With extreme muscle spasms, "the muscles can feel tight as a rock. So, it can be very, very uncomfortable and painful," Desai said at the time, adding that other stimuli that can provoke these spasms sometimes include touching the muscles, "certain subtle movements" and stress.

Contributing: Jay Stahl, KiMI Robinson, Wyatte Grantham-Philips

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