Celine Dion says she hopes one day to be well enough to perform for audiences again.
The 56-year-old Grammy winner, who appears on the May 2024 cover of Vogue France, told the publication she was training “like an athlete” to manage her health after being diagnosed with stiff person syndrome.
“Five days a week I undergo athletic, physical and vocal therapy. I work on my toes, my knees, my calves, my fingers, my singing, my voice,” explained the mom of three.
“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?” she added.
When the publication suggested Dion would be onstage and touring again one day, she responded, “I can’t answer that… Because for four years I’ve been saying to myself that I’m not going back, that I’m ready, that I’m not ready… 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,” she added, “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.”
The “My Heart Will Go On” singer first revealed she had been diagnosed with stiff person syndrome in an emotional video in December 2022.
SPS is a rare, progressive neurological disorder that can cause stiff muscles in the torso, arms and legs, as well as muscle spasms in response to greater sensitivity to noise, touch and emotional distress, according to the National Institute of Neurological Disorders and Stroke.
Prior to sharing news of her diagnosis, Dion had canceled tour dates multiple times over the course of 2022. She later canceled all remaining dates on her world tour, explaining in a statement that the challenges of SPS were preventing her from being able to perform.
Céline Dion shared a rare photo with her three sons in honor of Stiff Person Syndrome Awareness Day. Over the weekend, the Grammy winner posted a picture of herself with her sons 23-year-old René-Charles and 13-year-old twins Nelson and Eddy on her Instagram.
While speaking to Vogue France, the “It’s All Coming Back to Me Now” singer said she hopes a “miracle” cure can be found for SPS. But for now she is trying to “learn to live with it.”
“I have this illness for some unknown reason,” she said. “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!”
Whether or not she performs onstage again, Dion said she will always feel a passion for singing.
“I started performing when I was 5. Did I want to be a singer? I never had time to ask myself that question. Did people come to see me to hear me tell jokes or to hear me sing? I am a singer.
“I sing in English, in French, I’ve sung in Mandarin, I’ve sung in Japanese, in Spanish and in Italian and people have come, they’ve always come,” she added. “That, for me, was the proof that I was, and that I am, truly a singer. One thing’s for sure, I’ll love that feeling until the day I die.”
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