The 56-year-old singer announced his diagnosis in December 2022 and said the rare disease would prevent him from performing.
Ahead of the release of the documentary 'I Am: Celine Dion', Celine Dion has spoken about the neurological disease that changed her life.
The film, which premieres on Prime Video on June 25, details her struggle with stiff-person syndrome, a progressive disease that causes muscle stiffness and painful spasms.
The 56-year-old singer announced her diagnosis in December 2022 and said the rare disease would prevent her from performing, with all of her tour dates canceled in the following months.
She's been back in the spotlight in recent weeks, speaking out about her efforts to return to the stage.
She said she “panicked for years” trying to control her voice after her symptoms first began.
Dion told TVA's Jean-Philippe Dion that suffering a spasm in her throat during the Taking Chances tour in 2008 marked the beginning of “17 years of panic” as she struggled to understand what was happening to her body and the voice that had made her famous.
As the spasms continued and she could no longer produce a reliable sound, Dion said she “tried everything,” from steam therapy to asthma medication to strong medication. She also learned to adapt and adapt her singing style as the stress of wanting to perform made her nervous and her symptoms worse. After years of “living a lie,” she said, she decided to face her illness for the first time.
“There was no diagnosis, I couldn't sing, I couldn't walk,” she said in the French-language interview aired Sunday. “I was hanging on to chairs and counters all over the house. I was neither alive, nor dead, but worse than both. I was waiting, but what was I waiting for?”
She was troubled by false reports about her death.
Dion said she was inspired to make a documentary about her health issues after false reports about her death were spread on social media several years ago.
“It's been really hard for me as a mom. My kids are old enough to have iPads and iPhones, and they see them and they say, 'Mom, they say your mom is dead,'” she said in an interview with CBC's Adrienne Arsenault, published online Thursday.
Dion said she told her children not to believe everything they saw and heard, but it was difficult to tell them the seriousness of her condition “knowing they had already lost a parent.”
“My children see me in danger and don't know if I'm going to die,” she said.
Dion said she invited Eileen Taylor, director of “I Am,” into her home because she saw “silver lining” 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 have a right to know what's going on. This is not a joke and I'm not dead.”
She has a panic button in her house.
Dion said he and his twin sons, Nelson and Eddie, conduct “crisis” drills at home and have installed “panic buttons” in the house in case of an emergency.
She said in a People magazine cover story published Wednesday that when she has an attack, she feels intense physical pain, her body stiffens and she sometimes needs her sons' help.
To make sure her sons are prepared, Dion and their physical therapist practice “crisis” scenarios every two to three months.
“I have a panic button at home and they know how to help me,” she said.
She took a near-lethal dose of Valium.
Dion said she had been suffering from the illness for 17 years, and at one point had to take a near-lethal dose of Valium to get through a performance.
In an interview with NBC's Hoda Kotb on Tuesday night, the singer said that before she was diagnosed with stiff person syndrome in 2022, her doctor had prescribed diazepam, sold under the brand name Valium, to control her seizures.
Dion gradually increased her intake to perform and built up a tolerance, at one point taking 90 milligrams a day.
“Ninety milligrams of Valium can be deadly. At some point you stop breathing. The problem was, my body got used to 20 milligrams, 30 milligrams, 40 milligrams, and it kept increasing – and I needed it,” she said.
“I honestly didn't know it was going to kill me.”
Dion said he eventually stopped taking the medication with his doctor's help because it was no longer working.
She vows to return to the stage
Dion said she is working “hard” to perform again, but isn't sure when that will be.
She told Vogue France in its May issue that she was undergoing an intensive five-day program of movement, physical and vocal therapy.
“The way I see it, you have two choices: You can train and work hard like an athlete, or you can switch off and stand in front of the mirror at home listening to songs and talking to yourself,” she told the magazine.
“I've chosen to work with my medical team, from head to toe, to be the best version of myself I can be.”
This report by The Canadian Press was first published June 16, 2024.
Alex Nino Getchiu, The Canadian Press
