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Celine Dion wails through brutal seizure in ‘almost unbearable’ documentary footage-Rishma Dosani-Entertainment – Metro
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Celine Dion’s devastating battle with stiff-person syndrome has been laid bare in her new documentary, I Am: Celine Dion, with director Irene Taylor admitting that some moments were ‘unbearable’ to film.
The My Heart Will Go On singer went public with her health issues at the end of 2022, after being forced to cancel and reschedule a string of performances.
The 56-year-old had invited cameras into her home the year before, and they were on hand to capture some of her lowest times as she came to terms with her condition – the film, released on Amazon Prime Video on June 25, also charts her rise to fame and her astonishing, decades-long career.
The most harrowing scene came towards the very end of the special, where Celine’s foot began to spasm, leading to her entire body seizing up while experts rushed to her aid.
The footage became hard to watch as the mom-of-three was heard wailing in pain in front of her medical team, who gave her medication and attempted to slow her symptoms.
Speaking to Metro.co.uk about the seizure, Irene described it as the ‘most unpleasant’ thing that she has ever captured.
Celine Dion was seen struggling in harrowing scenes from her I Am: Celine Dion documentary (Picture: Prime Video)
‘The hardest moment to film, the hardest moment to just be in the room with, was when she had her medical episode,’ she told us.
‘That went on for quite a long time, between 40 minutes and an hour, depending on where you call it beginning and ending. It’s about five minutes in the film.
‘That was almost unbearable. But I let my intellect kick in, and my director of photography and I, we ploughed through it, I would say.
‘That was very difficult, certainly the most extraordinarily unpleasant and extraordinary thing I had ever witnessed in real time while my cameras were rolling.’
She broke down as she opened up about her symptoms (Picture: Prime Video)
When asked if there was ever a time she contemplated pausing filming – or if she actually stopped altogether – Irene continued: ‘I never turned the cameras off, but sure.
‘There were moments where she was moving into a room or going somewhere, and we did not follow her. But my director of photography, he would go into her dressing room with her.
‘I would like to say we operated with a respectable degree of dignity and respect. When she was going into her dressing room to take her medication, that was a sensitive thing, I tiptoed around that a little bit.
‘We had exercised restraint and, as time went on, then we thought, “We don’t think she cares, so we’re just going to do it.” But she never had to say, “Oh, wait there.” She never said that.
Irene Taylor joined Celine at the New York premiere of I Am: Celine Dion last week (Picture: WireImage)
Celine has vowed to get back on stage amid her health battles (Picture: Shutterstock)
‘We probably opted out of filming things that she probably would have let us film, but we just thought that’s not the right choice. That’s really where every filmmaker is going to have a different boundary.’
At the very end of the medical episode, after her symptoms had subsided, Celine took a moment to belt out a cover of Who I Am, by Wyn Starks, confirming that she is a true performer at heart.
Refusing to let her career end, she declared: ‘I still see myself dance and sing. 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.’
What is stiff-person syndrome?
Stiff-person syndrome (SPS) is a rare autoimmune movement disorder that affects the central nervous system (the brain and spinal cord).
SPS is characterised by fluctuating muscle rigidity in the trunk and limbs and a heightened sensitivity to stimuli such as noise, touch, and emotional distress, which can set off muscle spasms. Stiff-person syndrome is extremely rare.
Only about one out of every one million people have been diagnosed with this syndrome. Twice as many women have stiff person syndrome as men. Symptoms can occur at any age but usually develop between ages 30 and 60.
The All By Myself musician was diagnosed with stiff-person syndrome, an incredibly rare autoimmune movement disorder, in 2022 – it affects the nervous system and is said to turn people into ‘human statues’.
There is currently no known cure and it causes stiffness and spasms in muscles, while symptoms also make it difficult to walk.
Celine initially began suffering from debilitating spasms and stiffness that kept her from the stage, and would come up with excuses – including technical difficulties and various infections – to push back performances.
However, after feeling as though she was ‘lying’ to her fans, she decided to share the truth about her private battles, and posted a video on Instagram to discuss SPS for the first time.
The Amazon special charted Celine’s incredible career (Picture: Prime Video)
We were also given access to some of her lower moments (Picture: Prime Video)
Some scenes may be tough for fans to get through, but Celine dealt with everything with her trademark humor, insisting that she will one day return to the stage she clearly adores.
Reflecting on filming, Irene explained that the musician was actually ‘very hands off’ in terms of the final product – her only request was that she wanted to be the only one talking about herself, instead of countless ‘talking heads’ from others, something that the director was thrilled about.
‘That really engaged her, because I didn’t realize it but she had a lot to say,’ the filmmaker added. ‘I didn’t know that she was sick, I didn’t know that she felt that she had been lying for so long.
Celine was ‘open’ to all aspects of filming (Picture: Getty)
‘That’s a very strong word, but that’s what she called it. It was a lie. I didn’t realize that, but she did.
‘She showed up on day one, when we were filming, just as simple as could be – no artifice, no makeup. [She said] “Come in my home, go anywhere you want. Don’t ask me if you can film something. If you’re in my house, you can film it.” She really was the open person I needed to make a good film.
‘She made it easier than you might think, for someone who is such a megastar.’
I Am: Celine Dion premieres on Prime Video on June 25.
Got a story?
If you’ve got a celebrity story, video or pictures get in touch with the Metro.co.uk entertainment team by emailing us celebtips@metro.co.uk, calling 020 3615 2145 or by visiting our Submit Stuff page – we’d love to hear from you.
To view this video please enable JavaScript, and consider upgrading to a web
browser that
supports HTML5
video
Celine Dion’s devastating battle with stiff-person syndrome has been laid bare in her new documentary, I Am: Celine Dion, with director Irene Taylor admitting that some moments were ‘unbearable’ to film.
The My Heart Will Go On singer went public with her health issues at the end of 2022, after being forced to cancel and reschedule a string of performances.
The 56-year-old had invited cameras into her home the year before, and they were on hand to capture some of her lowest times as she came to terms with her condition – the film, released on Amazon Prime Video on June 25, also charts her rise to fame and her astonishing, decades-long career.
The most harrowing scene came towards the very end of the special, where Celine’s foot began to spasm, leading to her entire body seizing up while experts rushed to her aid.
The footage became hard to watch as the mom-of-three was heard wailing in pain in front of her medical team, who gave her medication and attempted to slow her symptoms.
Speaking to Metro.co.uk about the seizure, Irene described it as the ‘most unpleasant’ thing that she has ever captured.
Celine Dion was seen struggling in harrowing scenes from her I Am: Celine Dion documentary (Picture: Prime Video)
‘The hardest moment to film, the hardest moment to just be in the room with, was when she had her medical episode,’ she told us.
‘That went on for quite a long time, between 40 minutes and an hour, depending on where you call it beginning and ending. It’s about five minutes in the film.
‘That was almost unbearable. But I let my intellect kick in, and my director of photography and I, we ploughed through it, I would say.
‘That was very difficult, certainly the most extraordinarily unpleasant and extraordinary thing I had ever witnessed in real time while my cameras were rolling.’
She broke down as she opened up about her symptoms (Picture: Prime Video)
When asked if there was ever a time she contemplated pausing filming – or if she actually stopped altogether – Irene continued: ‘I never turned the cameras off, but sure.
‘There were moments where she was moving into a room or going somewhere, and we did not follow her. But my director of photography, he would go into her dressing room with her.
‘I would like to say we operated with a respectable degree of dignity and respect. When she was going into her dressing room to take her medication, that was a sensitive thing, I tiptoed around that a little bit.
‘We had exercised restraint and, as time went on, then we thought, “We don’t think she cares, so we’re just going to do it.” But she never had to say, “Oh, wait there.” She never said that.
Irene Taylor joined Celine at the New York premiere of I Am: Celine Dion last week (Picture: WireImage)
Celine has vowed to get back on stage amid her health battles (Picture: Shutterstock)
‘We probably opted out of filming things that she probably would have let us film, but we just thought that’s not the right choice. That’s really where every filmmaker is going to have a different boundary.’
At the very end of the medical episode, after her symptoms had subsided, Celine took a moment to belt out a cover of Who I Am, by Wyn Starks, confirming that she is a true performer at heart.
Refusing to let her career end, she declared: ‘I still see myself dance and sing. 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.’
What is stiff-person syndrome?
Stiff-person syndrome (SPS) is a rare autoimmune movement disorder that affects the central nervous system (the brain and spinal cord).
SPS is characterised by fluctuating muscle rigidity in the trunk and limbs and a heightened sensitivity to stimuli such as noise, touch, and emotional distress, which can set off muscle spasms. Stiff-person syndrome is extremely rare.
Only about one out of every one million people have been diagnosed with this syndrome. Twice as many women have stiff person syndrome as men. Symptoms can occur at any age but usually develop between ages 30 and 60.
The All By Myself musician was diagnosed with stiff-person syndrome, an incredibly rare autoimmune movement disorder, in 2022 – it affects the nervous system and is said to turn people into ‘human statues’.
There is currently no known cure and it causes stiffness and spasms in muscles, while symptoms also make it difficult to walk.
Celine initially began suffering from debilitating spasms and stiffness that kept her from the stage, and would come up with excuses – including technical difficulties and various infections – to push back performances.
However, after feeling as though she was ‘lying’ to her fans, she decided to share the truth about her private battles, and posted a video on Instagram to discuss SPS for the first time.
The Amazon special charted Celine’s incredible career (Picture: Prime Video)
We were also given access to some of her lower moments (Picture: Prime Video)
Some scenes may be tough for fans to get through, but Celine dealt with everything with her trademark humor, insisting that she will one day return to the stage she clearly adores.
Reflecting on filming, Irene explained that the musician was actually ‘very hands off’ in terms of the final product – her only request was that she wanted to be the only one talking about herself, instead of countless ‘talking heads’ from others, something that the director was thrilled about.
‘That really engaged her, because I didn’t realize it but she had a lot to say,’ the filmmaker added. ‘I didn’t know that she was sick, I didn’t know that she felt that she had been lying for so long.
Celine was ‘open’ to all aspects of filming (Picture: Getty)
‘That’s a very strong word, but that’s what she called it. It was a lie. I didn’t realize that, but she did.
‘She showed up on day one, when we were filming, just as simple as could be – no artifice, no makeup. [She said] “Come in my home, go anywhere you want. Don’t ask me if you can film something. If you’re in my house, you can film it.” She really was the open person I needed to make a good film.
‘She made it easier than you might think, for someone who is such a megastar.’
I Am: Celine Dion premieres on Prime Video on June 25.
Got a story?
If you’ve got a celebrity story, video or pictures get in touch with the Metro.co.uk entertainment team by emailing us celebtips@metro.co.uk, calling 020 3615 2145 or by visiting our Submit Stuff page – we’d love to hear from you.
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