The Grammy winner admitted she is hoping for a “miracle” cure for the condition that has affected her singing and everyday life, but said she is working to come to terms with the condition.
Stiff person syndrome (SPS) is a rare neurological condition characterized by muscle stiffness and spasms, increased sensitivity to stimuli such as sound and lights, and emotional distress that can trigger muscle spasms, according to the National Institute of Neurological Disorders and Stroke.
THE Dion announced in December 2022 that she would be taking time off from her professional duties to focus on her health after revealing her diagnosis. He has since stopped touring and performing live.
In the interview, she revealed that she devotes five days a week to “sports, physical and vocal therapy.”
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“I’m working on my toes, my knees, my calves, my fingers, my singing, my voice… I have to learn to live with it now and stop questioning myself. At first I asked myself: “Why me? How did this happen; What have I done; It’s my fault;”.
But over time, her attitude changed.
“Life doesn’t give you answers. “You just have to live it,” he said.
“I have this disease for some unknown reason. As I see it, I have two options. Either I train like an athlete and work really hard, or I switch off and it’s over, I stay at home, listen to my songs, stand in front of my mirror and sing to myself. I chose to work with my whole body and soul, from head to toe, with a medical team. I want to be the best I can be. My goal is to see the Eiffel Tower again.”
It’s the love of those closest to her and her fans, as well as top-notch medical care, that have helped her the most, she said.
“People who suffer from SPS may not be lucky enough or have the means to have good doctors and good treatments. I have these means, and this is a gift. Moreover, I have this power within me. I know nothing is going to stop me.”
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THE Celine Dion can’t promise fans he’ll return to live shows – however he hasn’t ruled out the prospect.
He told Vogue France: “As things stand, I can’t stand here and say, ‘Yes, in four months.’ I don’t know… My body will tell me.
“On the other hand, I don’t want to just wait. It is morally difficult to live from day to day. It’s hard, I’m working really hard and tomorrow will be even harder. Tomorrow is another day. But there is one thing that will never stop, and that is will. It is the passion. It’s the dream. It’s determination.”
An upcoming documentary titled ‘I Am: Celine Dion’ is set to air on Prime Video later this year. According to an official synopsis, the film “captures over a year of filming as the legendary singer journeys to live an open and authentic life in the midst of illness.”
‘Nothing is going to stop me’: Celine Dion opens up about life with stiff person syndrome
