Céline Dion said this week she is hoping to “find a miracle” in regard to her battle with Stiff Person Syndrome, which she first announced in 2022.
“I haven’t beat the disease, as it’s still within me and always will be,” Dion told Vogue France. “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.”
Stiff Person Syndrome is an “autoimmune disorder of the nervous system,” per the Mayo Clinic, “often resulting in progressive, severe muscle stiffness and spasms of the lower extremities and back.” There is no cure for the condition.
Dion said she undergoes “athletic, physical and vocal therapy” five days a week to counteract the effects of her disease. “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?”
Now, the singer said, her outlook is more positive. “Life doesn’t give you any answers. You just have to live it! 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!”
Nevertheless, her therapies don’t mean that anything is guaranteed, and Dion said she “can’t answer” whether she will tour ever again.
“For four years I’ve been saying to myself that I’m not going back, that I’m ready, that I’m not ready,” she said. “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.”
Dion added that at the end of the day “the love of my family and my children, the love of the fans too, and the support of my team” is what helps her keep going.
“People who suffer from SPS may not be lucky enough or have the means to have good doctors and good treatments,” she said. “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.”