Celine Dion admits singing has not been easy for her, since getting diagnosed with Stiff Person Syndrome (SPS).
During a recent sit-down with “The Today Show” host Hoda Kotb, Dion discussed what her life has been like living with the rare neurological disorder and the different ways the disease has affected her body, including her voice.
“It’s like somebody is strangling you. It’s like somebody is pushing your larynx/pharynx this way,” the performer told Kotb, while pushing her throat back with her hand to demonstrate.
Dion went on to demonstrate what her voice sounds like when she tries to sing, speaking in a higher-pitched voice. “It was like talking like that, and you cannot go high or lower,” she said. “It gets into a spasm.”
CELINE DION HOPES FOR ‘A MIRACLE’ TO CURE STIFF PERSON SYNDROME
The “It’s All Coming Back to Me Now” singer first announced her diagnosis in December 2022, leading her to cancel her “Courage World Tour” and her Las Vegas residency in 2021.
SPS is defined by the Cleveland Clinic as “a rare autoimmune movement disorder that affects the central nervous system (the brain and spinal cord). People with this condition first experience a stiffening of the muscles of their trunk followed, over time, by the development of stiffness and rigidity in the legs and other muscles in the body.”
An upcoming Amazon Prime documentary called “I Am: Celine Dion” will give fans an inside look at her life. In it, Dion will discuss the songs that defined her career, as well as her recent struggles, including her decision to cancel her tour.
“It’s not hard to do a show, you know. It’s hard to cancel a show. I’m working hard every day, but I have to admit, it’s been a struggle. I miss it so much,” she can be heard saying in the trailer as old footage of Dion on stage and new footage of her working out to improve her condition are shown.
In April, the singer spoke to Vogue France about the possibility of returning to the stage, telling the outlet she “can’t answer” yes or no.
Dion admitted to having conflicting thoughts over the past four years about whether she will ever perform again, indicating her health had already been declining prior to her announcement to the public. “I’ve been saying to myself that I’m not going back, that I’m ready, that I’m not ready,” she said.
“My body will tell me. On the other hand, I don’t just want to wait. It’s morally hard to live from day to day,” she said. “It’s hard, I’m working very hard and tomorrow will be even harder. Tomorrow is another day. But there’s one thing that will never stop, and that’s the will. It’s the passion. It’s the dream. It’s determination.”
The “My Heart Will Go On” singer also gave Kotb insight into the particulars of SPS, saying she had even “broken ribs at one point” due to the severity of the muscle spasms.
“It can also be in the abdominal, can be in the spine, can be in the ribs,” Dion said. “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. My feet — it’s cramping, but it’s like in a position of you cannot unlock them.”
