Céline Dion insisted footage of spasm be stored in new documentary

On Jun 25, 2024

Published: 13:06, 25 June 2024 | Updated: 15:00, 25 June 2024

Céline Dion shares horrific footage of herself suffering a painful seizure as fans across the world prepare for the release of a new documentary that lays bare her battle with Stiff Person Syndrome (SPS).

The Canadian singer 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.

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.

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

The Canadian singer was diagnosed with the condition, a rare autoimmune neurological disorder that causes muscle stiffness and uncontrollable spasms, in 2022

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.

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.

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.’

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”.

A distressing clip from the film finds Dion needing assistance as her body starts to spasm

A medical professional is seen assisting the singer as her stricken body goes into ‘crisis’

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.

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.

The singer is in obvious distress as a medical professional lays her on a bed

Dion is placed in a position that protects her head and neck after going into a lengthy seizure

The singer’s bare feet appear to be rigid during the ordeal, which lasts for almost 10-minutes

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 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.’

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

The Canadian star has cancelled all live performances while she battles the rare condition

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.’

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

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.’

Directed by Academy Award nominee Taylor, I Am: Céline Dion has been available worldwide on Prime Video from June 25.

Celine Dion