‘Nothing is going to stop me’: Celine Dion opens up about life with stiff person syndrome

By Lianne Kolirin, CNN

(CNN) — Celine Dion has opened up about living with the rare neurological condition stiff person syndrome, saying, “nothing is going to stop me.”

Speaking to Vogue France in an interview published Monday, the Canadian-born singer said she was, “well, but it’s a lot of work,” adding: “I’m taking it one day at a time.”

The Grammy winner admitted she is hoping for a “miracle” cure for the condition which has affected her singing and day-to-day life, but said that she is working on accepting the situation.

Stiff person syndrome (SPS) is a rare neurological condition that is characterized by muscle rigidity and spasms, heightened sensitivity to stimuli such as sound and lights, and emotional distress that can cause muscle spasms, according to the National Institute of Neurological Disorders and Stroke.

Dion announced in December 2022 that she was taking time off from professional commitments to focus on her health after revealing her diagnosis. She has since stopped touring and performing live.

In the interview, she revealed that she spends five days a week on “athletic, physical and vocal therapy.”

“I work 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 the beginning I would ask myself: ‘Why me? How did this happen? What have I done? Is this my fault?’”

But with time, her attitude has changed.

“Life doesn’t give you any answers. You just have to live it,” she said.

“I have this illness for some unknown reason. The way I see it, I have two choices. Either I train like an athlete and work super 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’ve chosen to work with all my 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 is the love of those closest to her and her fans, as well as top medical care, that has 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 those means, and this is a gift. What’s more, I have this strength within me. I know that nothing is going to stop me.”

Dion cannot promise fans that she will return to live performances – yet she did not rule the prospect out.

She told Vogue France: “As things stand, I can’t stand here and say to you: ‘Yes, in four months.’ I don’t know… 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. 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 the determination.”

An upcoming documentary titled “I Am: Celine Dion” is set to stream on Prime Video later this year. According to an official synopsis, the film “captures more than a year of filming as the legendary singer navigates her journey toward living an open and authentic life amidst illness.”

The-CNN-Wire
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