Celine Dion has finally opened up in recent weeks about the neurological disorder that is altering her life on the occasion of the release of her highly anticipated documentary, I am: Celine Dion.
The film, scheduled to premiere June 25 on Prime Video, details the Quebec megastar’s fight against stiff person syndrome, a progressive disease that causes muscle rigidity and painful spasms.
The 56-year-old singer revealed her diagnosis in December 2022, saying the rare condition was preventing her from performing on stage. All of his tour dates were canceled in the months that followed.
She has returned to the spotlight in recent weeks to talk about her efforts to return to the stage. Here’s a look at what’s been shared so far.
Years of panic
On the TVA network, in her first interview given for a Quebec media outlet, Céline Dion confided to Jean-Philippe Dion that a spasm in her throat during her tour Taking Chances in 2008 was the start of “17 years of panic” as she tried to understand what was happening to her body and the voice that had made her famous.
As the spasms persisted and she lost the ability to reach her grades reliably, Dion said she tried everything from steam to asthma treatments to powerful medications.
She also learned to adapt her songs by changing the way she sang, even though the stress of performing made her tense and exacerbated her symptoms. She explained that it was only after years of “lies” that she decided to face her illness.
“I had no diagnosis, I could no longer sing, I could no longer walk,” she said. I stood on all the chairs in the house, the counters. It wasn’t living, it wasn’t dying, it was worse than that. It is: to be waiting for what? »
Troubled by false news of her death
Celine Dion said she wanted to make a documentary about her health problems in part because false information about her death circulated on social media a few years ago.
“It hurt me as a mom because my kids are old enough to have their iPads and their iPhones, and they look at it and they say, ‘Mom, they say you’re dead,’” she said. told to CBC’s Adrienne Arsenault in an interview broadcast Thursday.
Dion told her children not to believe everything they heard or saw, but it’s difficult for her to talk to them about the seriousness of her condition “knowing they’ve already lost a parent.”
“My children will see me in the middle of a crisis and they don’t know if I’m going to die,” she said.
Dion said the reason she allowed the director to I am: Celine DionIrene Taylor, coming to her house was that she could see “hope” in her situation and wanted the world to know what was happening to her.
“This will help me, my family, my children — and my fans deserve to know what is happening. This is not a joke and I’m not dead. »
“Panic buttons” in your house
Celine Dion said her twin sons, Nelson and Eddy, practice “crisis” drills at home and that there are “panic buttons” around the house in case of an emergency.
When she has an episode, she experiences intense physical pain and her body becomes so rigid that she may need help from her sons, she told the magazine People in a cover story published Wednesday.
To make sure the boys are prepared, Dion and his physical therapist practice a “crisis” scenario every two months.
“My children, when I have episodes, know what to do,” she told TVA in an interview. Because I can’t talk.”
She Took Near-Lethal Doses of Valium
Dion says the symptoms of her illness have persisted for 17 years and at one point she was taking near-fatal doses of Valium to survive her shows.
In an interview with Hoda Kotb on NBC on Tuesday night, the singer said doctors prescribed diazepam, sold under the brand name Valium, to treat the spasms before she was diagnosed with person syndrome in 2022. steep.
Dion claims she began taking progressively higher doses in order to perform and developed a tolerance so high that she was taking 90 milligrams a day at one point.
“Ninety milligrams of Valium can kill you. You may stop breathing at some point. The problem is that my body got used to it at 20 [milligrammes], 30 and 40, until it increases. And I needed it,” she said.
“I honestly didn’t know it could kill me. »
Dion says she eventually weaned herself off the drug with the help of doctors because “it stopped working.”
She promises to return to the stage
Celine Dion says she’s working “very hard” to perform again, although it’s too early to say when that will happen.
She said in the May edition of French Vogue that she was undergoing an intense five-day program of sports, physical and vocal therapy.
“I have two choices. Either I train like an athlete and I work really hard or I disconnect and it’s over, I stay at home, I listen to my songs, I stand in front of my mirror and I sing to myself,” -she told the magazine.
“I chose to work with all my body and all my soul, from head to toe with a medical team. I want to be my best self. »