Céline Dion is not going to allow her health struggles to prevent her from performing again.
The music icon, who publicly revealed in December 2022 that she was diagnosed with stiff person syndrome, has canceled her concerts over the past two years. But that doesn’t mean she won’t return to the stage one day.
In an interview Hoda Kotb, airing in full in an NBC primetime special June 11, Dion reveals that she will do whatever it takes to reunite with her fans.
“What did this disease take away from you?” Hoda asks in a preview that aired on TODAY June 11.
The singer replies, “It didn’t take anything away from me. I’m going to go back onstage, even if I have to crawl. Even if I have to talk with my hands, I will. I will.”
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She adds, “I am Céline Dion, because today my voice will be heard for the first time, not just because I have to, or because I need to. It’s because I want to and I miss it.”
Dion, 56, will open up about the rare neurological condition and what she has overcome the past two years in her full interview with Hoda, airing June 11 at 10 p.m. ET on NBC.
The interview arrives about a week before her documentary, “I Am: Céline Dion,” is released on Amazon Prime Video on June 25.
The Grammy winner’s journey back to the stage has been difficult. Stiff person syndrome is a progressive disorder that can dramatically alter quality of life. According to the National Institute of Neurological Disorders and Stroke, stiff person syndrome can cause muscle stiffness in a person’s torso and limbs and can also lead to heightened sensitivity to noise, touch and emotional stress. The disorder can cause painful muscle spasms, as well.
In another clip from her talk with Hoda, the “My Heart Will Go On” singer described what it now feels like for her to sing.
“It’s like somebody is strangling you,” she said. “It’s like somebody is pushing your larynx/pharynx this way.”
After demonstrating, she continued, “It was like talking like that, and you cannot go high or lower. It gets into a spasm.”
The pain can travel throughout her entire body.
“It can also be in the abdominal, can be in the spine, can be in the ribs. But it feels like if I point my feet, they will stay in a (stuck position), or if I cook — because I love to cook — my fingers, my hands will get in a position,” she explained.
She said sometimes her feet will start cramping up and stay in that position because she “cannot unlock them.” These repeated spasms have caused injuries.
“I have broken ribs at one point because sometimes, when it’s very severe, it can break some ribs as well,” she shared.
She first spoke about stiff person syndrome in a video uploaded to her Instagram in December 2022. At the time, she was supposed to go on tour in February 2023. She said in her announcement that she needed to cancel the dates. In May 2023, she confirmed that the rest of her world tour was canceled due to her ongoing health problems.
In a May interview with Vogue, Dion revealed she felt early symptoms in 2008 during her “Taking Chances World Tour.”
Dion acknowledges in her new documentary that she did not want to publicly address her health issues in the past.
“I have been diagnosed with a very rare neurological disorder and I wasn’t ready to say anything before, but I’m ready now,” she says in a trailer for the film.
Dion told Hoda in a third preview from their upcoming interview that she reached a point where she couldn’t hide her pain, which had increased over the years.
“I could not do this anymore,” she said. “We did not know what was going on.”
She explained to Hoda why she initially didn’t take a break from performing before changing her mind.
“I should have stopped, take the time to figure it out,” Dion said. “My (late) husband (René Angélil), as well, was fighting for his own life. I had to raise my kids. I had to hide. I had to try to be a hero. Feeling my body leaving me, holding onto my own dreams. And the lying for me ... the burden was too much.”
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