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Céline Dion speaks about her rare neurological disease: ‘It’s morally tough to live day by day’

The singer announced two years ago that she suffers from Stiff Person Syndrome, which affects her muscles and her voice. Practically retired, she gave a long interview to ‘Vogue France’ where she talks about living with the severe illness and whether she will return to the stage

Céline Dion
Céline Dion at the Grammy Awards on February 4, 2024 in Los Angeles, California.Emma McIntyre (Getty Images)
María Porcel

In December 2022, the singer Céline Dion explained through tears and before the entire world that she was suffering from a rare disease, that she was canceling her tour and that she would no longer be performing, not knowing at that point whether temporarily or permanently. During this year and a half, her family has been releasing updates about how the Canadian singer is doing, but always in dribs and drabs, and she has barely spoken a word herself. Dion has also not made any public appearances other than a party where she accompanied her children and, last February, at the Grammy awards ceremony. But the the artist has now decided to come back into the spotlight in a big way, with a long interview and a powerful photo shoot for Vogue France, whose May cover she occupies.

The photographs were taken in Las Vegas, where the artist has lived for years, but the interview was conducted with Paris via video call. Dion no longer gives concerts (the last one was five years ago) and hardly travels due to her illness, called Stiff Person Syndrome, which affects muscle control. In the interview with Vogue, she says that one of her great goals is “to see the Eiffel Tower again.” Asked how she is feeling, the vocalist replies: “I’m doing well, but it’s a lot of work. It’s one day at a time.” Dion recognizes that she cannot fight the disease, because “it is inside me always and forever. I really hope that a miracle will be found, a way to cure it through scientific research, but I must learn to live with it. So this is me now, with Stiff Person Syndrome. Five days a week I follow athletic, physical and vocal therapy. I work everything from my toes, my knees, my calves, my fingers, my singing, my voice...”

Dion also admits that when she found out about her diagnosis, she inevitably asked herself many questions, but now that time has elapsed, the perspective is different. “I started out by asking myself: why me? What happened? What did I do? Am I responsible for this? Life does not provide you with answers. You simply have to live it! I have this disease for unknown reasons. I have two choices. Either I train like an athlete and work super hard, or I disconnect and it’s over, I stay at home, listen to my songs, stand in front of the mirror and sing only to myself. I have chosen to work with all my body and soul, from head to toe, with a medical team. I want to be the best version of myself.”

Dion knows she is a privileged person despite everything. “People who suffer from SPS may not have the luck or the means to get good doctors, good treatments. I do have those means, I have that gift. Plus, I have this strength within me. I know that nothing is going to stop me.” The artist also credits the love of her family, her three children, and also of her very loyal fans and her team for support. But she admits that she still doesn’t know if she will be able to return to the stage, which she first went on when she was just a five-year-old child, one of 14 siblings who could play almost any instrument. “I don’t know...my body will tell me,” she tells the magazine about a potential return. “On the other hand, I don’t want to just wait. It’s morally tough to live day by day. It’s difficult, I am working very hard and tomorrow will be even more difficult. Tomorrow is another day. But there is one thing that will never end, it’s the will to go on. It’s the passion. It’s the dream. It’s the determination.”

The singer has been living in Las Vegas for more than 20 years. She lives there with her three children, which she had with the late music manager René Angélil, who died in January 2016 at the age of 73, after suffering from cancer for three years.

In addition to her applauded comeback at the Grammy Awards last February, where she presented an award, and this interview with Vogue, Dion is planning to release a documentary about her career and illness next summer, I Am: Céline Dion, will be directed by Oscar nominee Irene Taylor and available on Prime Video.

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