Celine Dion has revealed that her husband’s death pushed her to want to fight harder amid her battle with stiff person syndrome, explaining that she became determined to ‘learn to live with it’ so that her kids wouldn’t lose another parent.
The singer, 56, announced that she had been diagnosed with the rare autoimmune neurological disorder in 2022 after secretly grappling with the condition for nearly two decades in private.
Now, she has spoken out about how losing her husband, René Angélil, to throat cancer in 2016 made her want to work even harder to try to get better.
She said her health had gotten so bad that she could ‘barely walk,’ but that after his passing she realized she had to ‘learn to live with’ the condition so that she could be there for her kids, son René-Charles, 23, and twins Nelson and Eddy, 13.
‘I barely could walk at one point, and I was very much missing living. My kids started to notice,’ she told People.
Celine Dion has revealed that husband Rene Angelil’s 2016 death pushed her to want to fight harder amid her battle with stiff person syndrome. She and Rene are seen in 2013
The singer, 56, explained to People recently that she became determined to ‘learn to live with it’ so that her kids wouldn’t lose another parent. She’s seen with Rene and their kids in 2011
‘I was like, “OK, they already lost a parent. I don’t want them to be scared.” But I let them know, “You lost your dad, [but] mom has a condition and it’s different. I’m not going to die. It’s something that I’m going to learn to live with.”‘
Stiff person syndrome is a degenerative condition that causes muscles to tense and spasm uncontrollably.
Ultimately, it leaves sufferers resembling ‘human statues as it progressively locks the body, leaving people unable to walk or talk.’
There is no cure for SPS, but there are steps that can be taken to slow down symptoms – something Celine previously revealed she was exploring, as she told Vogue France in April that she was undergoing ‘athletic, physical and vocal therapy’ five days a week.
Celine also spoke out about how the ‘scary’ and ‘very painful’ condition affected her body during an upcoming sit-down with Today show host Hoda Kotb.
In a preview for the interview, which will air in full on Tuesday at 10pm ET on NBC, Celine recalled ‘feeling her body getting more rigid’ during her Taking Chances World Tour, which kicked off in February 2008 and concluded a year later.
She said things got so severe before one of her shows in Germany that she considered canceling the performance.
‘[At first] I [thought] a little cold was starting or that I was pushing too much. [They would say], “It’s the third show in a row, you’re working too hard,”‘ she said.
Celine (seen in 2015) announced that she had been diagnosed with the rare neurological disorder in 2022 after secretly grappling with the condition for nearly two decades in private
‘I barely could walk at one point. My kids started to notice,’ Celine (seen with her kids in 2022) said. ‘I was like, “OK, they already lost a parent. I don’t want them to be scared”‘
‘But it was different, I could feel that the body was like getting more rigid. I was in Germany and I said to my assistants, “I don’t know if I can do the show.”‘
Celine explained that she ‘didn’t know what was happening’ and started to ‘panic,’ which only made the ‘spams’ worse.
‘I was very, very, very scared. And the more you panic, the more you spasm. But I went on stage,’ she continued.
She said she noticed that her voice began to sound ‘more nasal-y’ but that she ‘compensated’ by ‘lowering the keys’ of the songs when she would perform.
‘We did not know what was going on [with me],’ she added. ‘I did not take the time… I should have stopped, took the time to figure it out.’
Celine ultimately canceled six shows during the tour due to ‘sickness,’ but continued to perform for more than a decade while keeping her health battle a secret from her adoring fans.
She described hiding it from ‘the people who got her to where she was’ as a huge ‘burden,’ explaining that it felt like she had to act like a ‘hero’ while secretly feeling like her ‘body was leaving her.’
Eventually, she said that ‘lying’ to her fans became ‘too much’ for her to bare – so she shared the news in 2022.
‘I had to raise my kids, I had to hide, I had to try to be a hero – while feeling my body leaving me,’ she said. ‘[I was] holding on to my own dreams.
Celine also spoke out about how the ‘scary’ and ‘very painful’ condition affected her body during an upcoming sit-down with Today show host Hoda Kotb
In a preview for the interview, Celine recalled ‘feeling her body getting more rigid’ during her Taking Chances World Tour, which kicked off in February 2008. She’s seen during the tour
‘Lying for me was… The burden was too much. Lying to the people who got me to where I am today, I could not do it anymore.’
‘Not telling the truth was too much to carry,’ host Hoda said, to which Celine replied, ‘I could not do it anymore.’
In another part of her NBC interview, the musician described what it’s like to sing with the condition, and she said it feels like ‘somebody is strangling her.’
‘It’s like somebody is strangling you,’ she told Hoda. ‘It’s like somebody is pushing your larynx/pharynx.’
She added that it’s hard for her to control her pitch due to the ‘spasms.’
And it doesn’t only affect her voice, as she continued, ‘[The spams] can also be in the abdominal, can be in the spine, can be in the ribs.
‘If I point my feet, they will stay [stuck in that position], or if I cook – because I love to cook – my fingers, my hands, will get in a position.
‘My feet – it’s [like] cramping, but it’s like [they get] in a position and you cannot unlock them.’
Celine even revealed that the condition has resulted in her ‘breaking ribs.’
‘I have broken ribs at one point because sometimes, when it’s very severe, it can break some ribs as well,’ she shared.
Celine continued to perform for over a decade while keeping her health battle a secret from her adoring fans. She’s seen in 2022
She described hiding it from ‘the people who got her to where she was’ as a huge ‘burden,’ explaining that it felt like she had to act like a ‘hero’ while feeling like her ‘body was leaving her’
Even so, Celine, who hasn’t performed since sharing her diagnosis with the world in 2022, said she was determined to get back on stage one day.
The My Heart Will Go On songstress is gearing up to release a tell-all documentary that will offer a heartbreaking glimpse inside her health battle, entitled I Am: Celine Dion
‘I’m going to go back on stage even if I have to crawl, even if I have to talk with my hands, I will,’ she vowed.
The artist is currently gearing up to release a tell-all documentary that will offer a heartbreaking glimpse inside her health battle, entitled I Am: Celine Dion.
In a trailer for the Amazon Prime special, which will debut on June 25, Celine broke down in tears as she discussed the disease and the affects it has had on her.
She was seen desperately trying to save her voice, as she explained that she will do anything to sing again.
‘My voice is the conductor of my life,’ she said. ‘When your voice brings you joy, you’re the best of yourself.’
She continued, ‘It’s hard to cancel a show. I’m working hard every day, but I have to admit it’s been a struggle. I miss it so much. The people. I miss them.’
