Flushed, tearful, exhausted and unable to control her own body, Céline Dion endures an agonising ten-minute seizure in new scenes from a forthcoming 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.
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 since making the decision to withdraw from the public eye while coming 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.
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Céline Dion insisted that no changes be made to a harrowing new documentary about her battle with Stiff Person Syndrome (SPS) after she was filmed experiencing a lengthy spasm
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The Canadian singer was diagnosed with the condition, a rare autoimmune neurological disorder that causes muscle stiffness and uncontrollable spasms, in 2022
In clear distress, Dion 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.’
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.
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A distressing clip from the film finds Dion needing assistance as her body starts to spasm
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A medical professional is seen assisting the singer as her stricken body goes into ‘crisis’
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It shows her grunting, appearing to be in pain, while lying on her back in spasm, unable to move
WHAT IS STIFF PERSON SYNDOME?
Stiff person syndrome is an extremely rare disorder that makes the muscles in the torso and limbs alternate between spasming and being rigid.
Estimates suggest it affects around 70 people in the UK and 330 in the US and remains little understood. Around twice as many women as men are hit with it.
The progressive disease sees patients’ stiffness increase over time and can lead to them needing to use a wheelchair.
There tend to be three types of the syndrome:
Classical person man syndrome: When rigidity and spasms are around the back and stomach, and occasionally thighs and neck. It can cause back curvature over time.
Stiff limb syndrome: Spasms especially affect the legs and feet, occasionally causing them to become fixed in place. Hands can also be affected.
Jerking stiff person syndrome: The rarest, most aggressive form, which includes symptoms from both the others, and also affects the head and eyes.
Experts do not know exactly what is behind the disease.
But they believe it may be caused by an autoimmune reaction, when the body attacks its own nerve cells that control muscle movement.
Around 40 per cent of sufferers also have type 1 diabetes, another autoimmune disease. Type 1 diabetes is particularly associated with classical person syndrome.
Other autoimmune conditions like vitiligo, which causes white patches of skin, and pernicious anemia are likewise associated with it.
It is also more common in people with breast, lung, kidney, thyroid or colon cancer, as well as lymphomas, but researchers do not yet know why.
In stiff person syndrome, the immune system attacks a protein that helps make gamma-aminobutyric acid (GABA), which regulate motor neurons — the nerves that control movement.
Low levels of GABA cause the neurons to continuously fire when they are not supposed to, resulting in the spasms and rigidity.
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What are its symptoms?
The main symptoms caused by stiff person syndrome are spasms and rigidity of the torso and limbs.
Spasms can be triggered by loud noises, with the condition also causing heightened sensitivity to sound.
Touch and emotional distress can also be felt more intensely as a result of the condition.
The spasms can be so severe they cause people to fall over or lead to difficulty walking and other disability.
Stress and anxiety are also usually higher in those with the condition, particularly because of the unpredictability of spasms.
The lack of GABA — which regulates anxiety — in their system also affects mental health.
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The singer is in obvious distress as a medical professional lays her on a bed
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Dion is placed in a position that protects her head and neck after going into a lengthy seizure
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The singer’s bare feet appear to be rigid during the ordeal, which lasts for almost 10-minutes
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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
‘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.’
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Her struggles are set to be documented in new Amazon Prime release I Am: Céline Dion – a heartbreaking look at the superstar’s daily life with SPS
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The Canadian star has cancelled all live performances while she battles the rare condition
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The documentary director Irene Taylor says Dion was adamant that the near 10-minute scene in which she experiences a lengthy spasm be retained
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.’
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It shows her grunting, appearing to be in pain, while lying on her back in spasm, unable to move. She is attended by medical workers, before recovering and singing
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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, 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.
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The singer revealed her Stiff Person Syndrome diagnosis in an emotional video, shared with Instagram followers in December 2022
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Dion cancelled her world tour the following year as she continues to battle with the neurological disorder
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.’
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Dion’s sister Claudette later shared an update on the Power Of Love singer’s health in 2023
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‘At one point, your heart and your body are trying to tell you something. It’s important to listen to it,’ Claudette said of her sister; the pair seen here in 1995
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Hopeful: ‘We can’t find any medicine that works, but having hope is important,’ Claudette revealed (Dion is pictured in 2019)
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.’
