Pop legend Céline Dion is opening up about her life with Stiff Person Syndrome, saying that she still hopes “we’ll find a miracle,” but is learning “to live with it.”
In a new interview with Vogue France, the Canadian singer discussed the neurological disorder, which causes progressive muscular stiffness.
Following her diagnosis in December 2022, Dion has halted her touring schedule and stayed largely out of the spotlight, though she made a surprise appearance at the Grammys in February and earned a huge standing ovation.
“I haven’t beat the disease, as it’s still within me and always will be. I hope that we’ll find a miracle, a way to cure it with scientific research, but for now I have to learn to live with it. So that’s me, now with Stiff Person Syndrome,” Dion told Vogue France.
“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… 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?”
Dion said that she felt she had 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.”
She continued, “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!”
However, Dion confirmed that any plans to perform are still undetermined as she works to get stronger.
‘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,’” she said.
“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.”
Read Dion’s full interview on Vogue France’s website.