Céline Dion to talk about what it is like to live with her neurological disease in an upcoming documentary: ‘I will not let it to define me’

A year ago, the singer revealed that she had been diagnosed with the so-called stiff person syndrome, a rare autoimmune ailment that causes spasms that make it difficult for her to walk and sing

Celine Dion
Céline Dion in New York City on March 8, 2020.Gotham (GC Images)
María Porcel

It’s been almost five years since the public has seen Céline Dion, but that will change soon. The 55-year-old Canadian singer, who was diagnosed with a rare neurological disease a couple of years ago, is making her return. But not on stage. As she herself has said, during this time of forced rest she filmed a documentary called I Am: Céline Dion, which will be available soon (there’s no date yet) on Prime Video. In it, she will discuss her life with stiff person syndrome, an incurable disease that only affects one person out of every 1 million.

“This last couple of years has been such a challenge for me, the journey from discovering my [medical] condition to learning how to live with and manage it, but not to let it define me,” the artist wrote in a statement about the project, one of the few times she has spoken about her illness. “As the road to resuming my performing career continues, I have realized how much I have missed it, of being able to see my fans. During this absence, I decided I wanted to document this part of my life, to try to raise awareness of this little-known condition, to help others who share this diagnosis.”

The documentary will be directed by Irene Taylor, who was nominated for an Oscar in 2009 for a short documentary called The Final Inch in which she addressed the polio vaccination, especially as it relates to children in India. In addition, last December, Taylor premiered her documentary Trees and Other Entanglements, a portrait of the strong connection of people with trees around the world, on HBO. For a whole year she has been immersed filming I Am: Céline Dion, which will not so much discuss the artist’s life as it will focus on the last few years, including settling in Las Vegas, her tours, her time in the recording studio and her love for haute couture (the Canadian is a fashionista and has become a powerful trendsetter in recent years).

The last time Céline Dion took the stage was in July 2019 in Hyde Park in London. Then came the Covid-19 pandemic, when she’d had plans for a European tour called Courage Tour, and everything came to a standstill. Once that was over, she scheduled a residency at Resorts World in Las Vegas, Nevada, which was to take place between November 2021 and February 2022. But shortly before, in October 2021, she had to cancel it: “I’m so sorry to disappoint all of you once again. I’m working really hard to build back my strength, but touring can be very difficult even when you’re 100%. It’s not fair to you to keep postponing the shows, and even though it breaks my heart, it’s best that we cancel everything now until I’m really ready to be back on stage again. I want you all to know, I’m not giving up,” she explained in a statement. She was confident then that she would be able to return that March. In fact, she planned a tour through the United States and her native Canada in the spring of 2022. But in January of that year, she canceled that tour “for medical reasons,” as she said at the time.

Then, in April 2022, she revealed in separate videos in English and French on her social media pages that “health problems” forced her to change her plans and postpone her European tour: “I am somewhat better but still experiencing some spasms. I need to be in the best shape when I’m on stage. Actually, I’m looking forward to it, but I’m not at that point yet...” And in December 2022, she explained what her disease was, a neurological disorder called stiff person syndrome, an autoimmune disorder that affects the central nervous system and causes muscle spasms, which, among other things, affect walking and her ability to sing: “It doesn’t allow me to use my vocal cords to sing the way I’m used to,” she tearfully explained in two videos, again in English and French, which had five million viewers. Although she tried, she also had to cancel the 2024 European tour last May.

One of her sisters, Linda, has moved in with Dion, and a few months ago her relatives told her that there was no medication that worked for the singer. “I honestly think that she mostly needs to rest. She always goes above and beyond, she always tries to be the best and top of her game. At one point, your heart and your body are trying to tell you something. It’s important to listen to it,” another sister, Claudette, said in an interview with the Canadian newspaper Le journal de Montreal. “She’s listening to the top researchers in the field of this rare disease as much as possible,” but “we can’t find any medicine that works.”

“All I know is singing, it’s what I’ve done all my life and it’s what I love to do the most,” the artist explained, sadly, in the videos where she talked about her illness. “I have a great team of doctors working alongside me to help me get better and my precious children who are supporting me and giving me hope.” Dion has three children, the products of her relationship with musician René Angélil, who died in January 2016 at the age of 73 after a three-year battle with cancer. The couple had known each other since 1980, when she was 12 years old and he began managing her career. They got engaged in 1991, and they married three years later, in December 1994. It was her first marriage, then 26, and the third for Angélil, 52, who had one child from his first marriage and two others from his second. Their first son, René-Charles Angelil, was born in January 2001, and in October 2010, Dion gave birth to the couple’s twins, Nelson and Eddy, in Palm Beach, Florida. The singer has always been up front about her difficulties in getting pregnant. She got pregnant both times through in vitro fertilization; in fact, her pregnancy with the twins was a sixth attempt after suffering a miscarriage a year earlier.

In spite of everything, Dion has wanted to continue working during her illness. The woman who sang the theme songs for films like Titanic and Beauty and the Beast participated in the soundtrack for the romantic comedy Love Again, in which she also has a small cameo. Of course, her public appearances are very scarce. Her most recent photographs are four images she posted on her Instagram page in November 2023; in them, she appears with her three sons (now 23 and 13 years old) after a hockey game in Las Vegas (where they live), in which the Montreal Canadiens played against the Vegas Golden Knights.

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