Flushed, tearful, wailing in pain and unable to control her own body, Céline Dion endures an agonising ten-minute seizure in new scenes from her new documentary
that lays bare her battle with Stiff Person Syndrome (SPS).
The Canadian singer is seen gasping for breath as medical professionals desperately attempt to alleviate her painful muscle spasms while a camera crew quietly films the ordeal.
In clear distress, a frantic Dion is given a medicinal nasal spray, commonly used to treat the effects of cluster seizures in sufferers of SPS.
Dion, 56, was diagnosed with the condition, a rare autoimmune neurological disorder that causes muscle stiffness and uncontrollable spasms, in 2022.
Her subsequent struggles are set to be documented in new Amazon Prime release I Am:
Céline Dion – a heartbreaking look at the superstar’s daily life as she comes to terms with SPS and its debilitating effects.
And a new clip, shared ahead of its release on June 25, captures Dion as her stricken body goes into ‘crisis’ during a filmed consultation with medical professionals.
The singer looks on helplessly as doctors gently lay her in a comfortable position and check her vitals.
All the while, her bare-feet remain rigid as she battles the debilitating effects of the rare condition.
After receiving assistance the singer is finally able to sit upright and covers herself in a blanket before admitting her embarrassment at losing control of her body in front of the cameras.
She tells the camera: ‘Everytime something like this happens it makes you feel so embarrassed and so, like, I don’t how to express it, it’s just… you know, like to not have control of yourself..’
An emotional Dion breaks down while admitting she hasn’t given up on resuming her stage career at some point in the future.
She said: ‘I still see myself dance and sing. I always find plan b and plan c, you know. That’s me. If I can’t run, I’ll walk. If I can’t walk, I’ll crawl. But I won’t stop. I won’t stop.’
Director Irene Taylor told the PA news agency she was thinking “should I film it” when Dion went “very quickly” into the attack, but decided to continue as the singer, known for her powerful voice, had told her not “to ask permission to film something”.
She added: ‘So in that first 30 seconds, I was not focused on filming, I was the sound person and my cinematographer was there.
‘But there were several people in the room and everyone was doing what they were trained to do to help her, they’d all been given medical training on what to do if this happens.
‘So she was in the best hands she could be in. If they needed an extra pair of hands, I would have dropped my microphone and gotten in (to) help them without a doubt. But I did decide to keep filming, knowing that we didn’t have to use it.’
The documentary film’s director Irene Taylor says Dion was adamant that the near 10-minute scene in which she experiences a lengthy spasm be retained.
Dion revealed her diagnosis in 2022 and has previously said it that can cause spasms so strong that can break ribs and feel like strangulation of the throat.
Taylor added that Dion said “we can always talk about it later if I’m uncomfortable with it” and “just basically stayed out of the way”.
She also said: ‘After the episode occurred, and she sang that beautiful song, she left in very high spirits. Believe it or not, she left that location in very high spirits. And she was actually taking care of me.
‘She squeezed my hand and she was just about to drive away in the car, she reached her hand out the window. And she said, “Don’t worry about what happened”.
‘And I think that was her way of saying, if you filmed that you can you know, it’s OK. It’s OK. I don’t know what it looked like. And I thought, yeah, but she doesn’t know what it looks like. Like… she was only semi-conscious. So ultimately, I did edit it into the film.
‘And what you see in this final film is exactly what I showed her the first time. She didn’t want me to change it at all.’
When asked why she thinks Dion grabbed her hand, she replied saying she thought she was “hiding” her emotions.
‘In that moment when she reached out and grabbed my hand,” she said. “Maybe I was showing how upset I was, but I was so relieved that she was OK.
“But I was also inspired because she sang and she performed and I had never seen her in concert. And I was like this is what it must be like to see Céline in concert.
‘Because I was like so overcome with, you know, this like ‘Hell yeah’, like (I felt) emotion (on) me. You know, when she did all of her Céline Dion things, her mannerisms, and so, I really appreciated that.’
Taylor, also known the Oscar-nominated documentary The Final Inch and Beware The Slenderman, said: ‘I would have never shown it if she didn’t want me to, that’s just the honest truth. It’s too personal.’
Taylor says that Dion “never asked me how I was editing something”, but explained “it’s fair to say that she set the film on the course it took by wanting to give a lot of herself”.
She said: ‘I couldn’t have done it without her will, you know the will is very powerful and I think any public figure can decide to let go of this narrative that’s been constructed about them for a long time, because sometimes they don’t even have control of that narrative, it’s like, it becomes a force of its own.’
The mother-of-three first hinted at health issues in January 2022 when she cancelled the North American dates of her Courage world tour.
That December, the singer revealed that she had been diagnosed with the rare neurological disorder called Stiff Person Syndrome.
The condition, which affects one in a million people and causes muscles to tense uncontrollably ultimately leaves sufferers as ‘human statues’ as it progressively locks the body into rigid positions, leaving sufferers unable to walk or talk.
While there is no cure for SPS, there are treatments that slow down the progression and Dion revealed she was doing all she could to minimise symptoms.
She addressed her fans in a tearful Instagram post on December 8 2022, adding that it was forcing her to postpone her European tour.
‘Hello everyone, I’m sorry it’s taken me so long to reach out to you. I miss you all so much and can’t wait to be on stage talking to you in person,’ she wrote.
‘As you know, I’ve always been an open book and I wasn’t ready to say anything before but I’m ready now.
‘I’ve been dealing with problems with my health for a long time, and it has been really difficult for me to face my challenges and to talk about everything that I’ve been going through.
‘Recently, I’ve been diagnosed with a very rare neurological disorder called the Stiff Person Syndrome, which affects one in a million people.
‘While we’re still learning about this rare condition, we now know this is what’s been causing all the spasms I’ve been having.’
Detailing the impact the condition has had on her, Dion continued: ‘Unfortunately, these spasms affect every aspect of my daily life, sometimes causing difficulties when I walk and not allowing me to use my vocal cords to sing the way I’m used to.
‘It hurts me to tell you today that this means I won’t be ready to restart my tour in Europe in February.’
She added: ‘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 help.
‘I’m working hard with my sports medicine therapist every day to build back my strength and my ability to perform again but I have to admit it’s been a struggle.
‘All I know is singing, it’s what I’ve done all my life and it’s what I love to do the most. I miss you so much. I miss seeing all of you being on the stage performing for you.
‘I always give 100 percent when I do my show but my condition is now allowing me to give you that right now.
‘For me to reach you again, I have no choice but to concentrate on my health at this moment, and I have hope that I’m on the road to recovery. This is my focus, and I’m doing everything I can to recuperate.
‘I want to thank you so much for your wishes and love and support on my social media. This means a lot to me. Take care of yourselves. Be well. I love you guys so much and I really hope I can see you again real soon.’
Months later Dion cancelled her Courage world tour as she continued to battle the neurological disorder.
She took to Instagram in May 2023 to announced that with ‘tremendous disappointment’ she was unable to perform on her world tour, adding she’s ‘working really hard to build back her strength’.
Posting an image of her cancelled tour dates, she wrote: ‘It is with tremendous disappointment that we have to announce today the cancellation of the Courage World Tour.
‘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… and I can’t wait to see you again!’
Dion also shared an image of the full list of tour dates that had been cancelled, including shows in France, Belgium, Denmark, Poland and the UK, and a statement announcing the news.
The statement added: ‘We do have every hope that someday soon, Celine will be able to come to all of these cities in Europe to perform for her amazing fans, but that time simply is not now.’
Dion’s sister Claudette later shared an update on the Power Of Love singer’s health.
Speaking to Le Journal de Montreal (via SheMazing), Claudette said she was being cared for by their sister Linda and working closely with researchers who specialise in the rare condition.
‘We can’t find any medicine that works, but having hope is important,’ she revealed.
‘I honestly think that she mostly needs to rest. She always goes above and beyond [when performing], 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.’
She added: ‘[Performing] is innate to her, she’s disciplined in every area of her life,’ Claudette added.
‘When I call [Celine] and she’s busy, I speak to my sister Linda who lives with her and tells me that she’s working hard.’
Dion subsequently made her first public appearance in three-and-a-half years at a hockey match in November 2023.
The superstar Titanic singer was spotted in public for the first time in three-and-a-half years as the Montreal Canadiens took on the Vegas Golden Knights.
In footage posted online, Dion was accompanied by her sons René-Charles and twins Nelson and Eddy, and appeared to be in great spirits as she greeted players and fans in the locker rooms after the match.
Months later, the singer made a shock appearance at the 2024 Grammy Awards.
The star was visibly emotional as she walked onstage with the support of eldest son Rene-Charles Angelil, 23, to cheers and a standing ovation and to present Album of the Year.
She said: ‘Thank you, all! I love you right back. You look beautiful. When I say I’m happy to be here, I really mean it from my heart.
‘Those who have been blessed enough to be here at the Grammy Awards must never take for granted the tremendous love and joy that music brings to our lives and to people all around the world.
‘And now it gives me great joy to present a Grammy Award that two legends Diana Ross and Sting presented to me 27 years ago. These are the outstanding nominees for album of the year.’
Dion then announced Taylor Swift’s acclaimed album Midnights had won the award – with the singer making Grammy history by winning the award for the fourth time.
The Canadian star looked incredible in a terracotta coat, chiffon dress and glittering jewelry as she was helped onto stage.
Swift became the first person to win the accolade four times and made her way to the stage at Crypto.com Arena in Los Angeles.
Dion handed her the award, but fans pointed out that Swift didn’t acknowledge her and didn’t make eye contact, quickly looking back to celebrate the moment with her collaborators instead.
However, there appeared to be no ill-feelings as the iconic pair later posed for a series of backstage photos.
Dion is fighting Stiff Person Syndrome after losing husband René Angélil to throat cancer in 2016.
She recently insisted his death has pushed her to fight harder, and insists she is determined to ‘learn to live with it’ so that her children wouldn’t lose another parent.
Speaking to People in June, 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 children 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 explained.
‘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.”‘
There is no cure for SPS, but there are steps that can be taken to slow down symptoms – something Dion 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.
Dion also spoke out about how the ‘scary’ and ‘very painful’ condition affected her body during a sit-down with Today show host Hoda Kotb.
In a preview for the interview, the singer recalled ‘feeling her body getting more rigid’ during her Taking Chances World Tour, which launched 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.
‘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.”‘
Dion explained that she ‘didn’t know what was happening’ and started to ‘panic,’ which only made the ‘spasms’ 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.’
Dion 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.
‘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.’
Dion first met her late husband in 1980 when she was an aspiring 12-year old singer and he was a business-savvy 38-year old manager.
He soon started managing her career, but their professional relationship became romantic after she won the Eurovision Song Contest in 1988, when she was 20.
The couple eventually married at Montreal’s Notre-Dame Basilica on December 17, 1994.
Speaking in 2019 – three years after his death – Dion admitted she still wasn’t ready to move on with another partner.
‘I think I will probably grieve for the rest of my life,’ she said. ‘René has prepared me for all my life since I’m 12. I have never met another man in my life, never kissed another man in my life.
‘I miss him a lot. I miss him a lot – for my partner, for the man I was embracing, kissing, making love with. My worries, my dreams …’
‘Now it is definitely too soon for me. I am definitely in love with [René], married to him. He’s the love of my life. It’s very difficult for me to see myself with another person.
‘The love that I have for him, I live it every day.’
