“I could not do this anymore.”
Céline Dion is opening up about her grueling battle with a rare disease in a new interview scheduled to air Tuesday on NBC.
Dion told TODAY‘s Hoda Kotb about how difficult it was to live with Stiff Person Syndrome (SPS), a neurological disorder that’s kept her from performing, before sharing her diagnosis publicly.
“You said not telling the truth was too much to carry,” Kotb told Dion in a preview of the conversation.
“I could not do this anymore,” the music icon replied. “We did not know what was going on.”
The Grammy winner went public with her diagnosis in 2022 on Instagram, explaining that SPS causes spasms and muscle rigidity and affects “every aspect of my daily life, sometimes causing difficulties when I walk and not allowing me to use my vocal cords to sing the way I am used to.”
She told Kotb that trying to sing “felt like someone trying to strangle you” and that it felt like someone was applying pressure on her larynx and pharynx. Dion also said that her spasms were so severe that, at one point, they even caused her to break a rib.
The vocalist has previously said that she’s undergoing intense therapy in order to live with SPS.
“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,” Dion said. “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.”
The 56-year-old had a European tour scheduled for 2023, which she initially postponed and eventually canceled.
“I’m so sorry to disappoint all of you once again. I’m working really hard to build back my strength, but touring can be very difficult even when you’re 100 percent,” Dion said in a statement. “It’s not fair to you to keep postponing the shows, and even though it breaks my heart, it’s best that we cancel everything now until I’m really ready to be back on stage again. I want you all to know, I’m not giving up…and I can’t wait to see you again!”
As fans worried about the singer’s well-being, Dion made a surprise appearance at the 2024 Grammy Awards, presenting the prize for Album of the Year to Taylor Swift — and earning a standing ovation for herself.
“Thank you all. I love you right back,” Dion said during the Grammys. “When I say that I’m happy to be here, I really mean it from my heart.”
What is Stiff Person Syndrome?
The disease is very rare, impacting only one or two people in a million, according to the Stiff Person Syndrome Center at Johns Hopkins Medicine. Its main symptoms are violent muscle spasms and stiffness, which can be triggered by a wide variety of things, like cold weather, sudden movement, loud noises, or stress. That may make activities like walking difficult and can lead to greater impairment down the road.
How did Céline Dion get Stiff Person Syndrome?
Researchers haven’t pinned down what causes the disorder, but think it may be an autoimmune reaction where the body attacks nerve cells responsible for muscle control. According to Yale Medicine, most people begin experiencing symptoms between the ages of 30 and 60.
The interview seems to contain details about how Dion developed the chronic and progressive disease. “There’s actually something in her bloodstream,” Kotb said when previewing the conversation on the TODAY Show. “She’s in the fight of her life right now, and it was on full display.”
There is currently no cure for the ailment. Most treatment focuses on helping patients relieve their spasms with sedatives and muscle relaxants. As Dion mentions, physical therapy is also key to managing the condition.
When will Céline Dion return to the stage?
“I’m going to go back onstage, even if I have to crawl,” Dion told Kotb. “Even if I have to talk with my hands, I will. I will.”
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.”
