Celine Dionthe renowned Canadian singer, spoke about the challenges she faces in the midst of her diagnosis with Stiff Person Syndrome (SPS)a rare neurological disease that has caused muscle spasms, difficulty walking and singing.
In an interview with the magazine Peoplethe 56-year-old artist revealed how she has dealt with her condition to protect her children, René-Charles, 23, and twins Nelson and Eddy, 13, from the pain they already experienced with the loss of their father, René Angélil, who He died in 2016 from throat cancer.
“At one point I could barely walk and it was very difficult for me to live. My kids started to realize it and I was like, ‘Okay, they already lost their dad. I don’t want them to be scared,’” Dion confessed.
Faced with the situation, the singer made the decision to be honest with her children about her illness: “I let them know: ‘You lost your dad, [pero] Mom has a condition and it is different. I’m not going to die. It’s something I’m going to learn to live with.‘”.
Dion revealed this intimate moment regarding her upcoming documentary titled I Am: Celine Diondirected by Oscar-nominated filmmaker, Irene Taylor. The project, which will premiere on Prime Video, will show the impact of SPS on his life and his tireless fight to return to the stage.
“I miss him a lot. I miss the people,” Dion says in the trailer for the documentary. “If I can’t run, I will walk. If I can’t walk, I’ll crawl. I will not stop”, he finishes strongly.
The film was directed by Amazon MGM Studios in conjunction with Vermilion Films and Sony Music Vision. The production was carried out under the support of Stacy Lorts, Tom Mackay and Julie Begey Seureau. The total duration of the feature film is 102 minutes, and it will be available from June 25, 2024.
The artist shared her diagnosis with her fans for the first time in December 2022, after canceling 42 dates of her Courage World Tour and a residency in Las Vegas. In an Instagram video, she said between sobs: “I have been dealing with health issues for a long time and it has been very difficult for me to face these challenges and talk about everything I have been through.”
In a recent conversation with NBC News, the five-time Grammy winner described how rigid person syndrome has impacted her life, both personal and professional. “It all started with spasms in my vocal cords. At first I didn’t worry too much, but over time it spread to other parts of my body, such as my abdomen, ribs, spine, hands and feet.
Progressively, the muscle spasms affected even his most daily activities: “My fingers and hands remain in uncomfortable positions. “It’s like a cramp, but a position where I can’t unblock them.”
In the case of her voice, Dion compared the experience to a feeling of suffocation. “Trying to sing with this condition feels like someone is strangling you.” he said, pressing his fingers to his throat and speaking in a broken tone. “It’s like someone is pushing on my larynx and pharynx, making it impossible for me to modulate my tone.”
The consequences of SPS are not limited to pain and discomfort. At another point in the interview, he revealed that he suffered rib fractures “because when it is very severe it can affect the bone,” he admitted.
Despite the challenges, Dion maintains a positive attitude and unwavering determination. “I’m not going to give up. I will find a way to live and work with this condition,” he concluded.
