Céline Dion insisted footage of a 10-minute spasm be kept in her heartbreaking new documentary about life with Stiff Person Syndrome

By James On Jun 25, 2024

Céline Dion insisted no changes would be made to a harrowing new documentary about her battle with Stiff Person Syndrome (SPS) after she was filmed while in a prolonged spasm.

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

Her subsequent struggles will be documented in the new Amazon Prime release I Am: Céline Dion – a heartbreaking look at the superstar’s daily life since she made the decision to withdraw from the public eye while coming to terms with SPS and its debilitating effects.

And the documentary’s director, Irene Taylor, says Dion was adamant that a nearly 10-minute scene in which she experiences a prolonged spasm would be preserved.

It shows her grunting, appearing to be in pain, as she lies convulsively on her back, unable to move. She is attended by medical workers before recovering and singing.

Céline Dion insisted no changes would be made to a harrowing new documentary about her battle with Stiff Person Syndrome (SPS) after she was filmed suffering prolonged spasms

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

Taylor told the PA news agency that she thought ‘should I film it’ when Dion went on the attack ‘very quickly’ but decided to continue because the singer, known for her powerful voice, told her ‘not to ask permission to film’. something”.

She added: “So in those first 30 seconds I wasn’t focused on filming, I was the sound person and my cameraman was there.

“But there were several people in the room and everyone did what they were trained to do to help her, they all had medical training on what to do when this happens.

“So she was in the best hands she could be in.” If they needed an extra pair of hands, I would have, without a doubt, dropped my microphone and helped them. But I decided to keep filming, knowing we wouldn’t have to use it.’

Dion announced her diagnosis in 2022 and has previously said it can cause cramps so strong they can break ribs and feel like throat strangulation.

Taylor added that Dion said “we can always talk about it later if I don’t feel comfortable with it” and “just stayed out of the way.”

She also said, “After the episode happened and she sang that beautiful song, she left in a really good mood. Believe it or not, she left that location in a very good mood. And she actually took care of me.

‘She squeezed my hand and she was about to drive away in the car, she put her hand out the window. And she said, “Don’t worry about what happened.”

WHAT IS RIGID PERSON SYNDOMA?

Stiff Person Syndrome is an extremely rare condition in which the muscles in the trunk and limbs are alternately cramped and stiff.

Estimates suggest it affects around 70 people in Britain and 330 people in the US, and remains little understood. About twice as many women as men are affected.

Due to the progressive disease, patients’ stiffness increases over time and may require them to use a wheelchair.

There are usually three types of syndrome:

Classic person-man syndrome: When there is stiffness and spasms around the back and abdomen, and sometimes also around the thighs and neck. It can cause back curvature over time.
Stiff Limb Syndrome: Spasms mainly affect the legs and feet, causing them to occasionally lock in place. Hands can also be affected.
Jerking stiff person syndrome: The rarest, most aggressive form, which includes symptoms of both others, and also affects the head and eyes.

Experts don’t know exactly what’s behind the disease.

But they believe it could be caused by an autoimmune reaction, in which the body attacks its own nerve cells that control muscle movement.

About 40 percent of patients also have type 1 diabetes, another autoimmune disease. Type 1 diabetes is mainly associated with the classic person syndrome.

Other autoimmune diseases such as vitiligo, which causes white patches on the skin, and pernicious anemia are also associated with it.

It is also more common in people with breast, lung, kidney, thyroid or colon cancer, as well as lymphoma, but researchers don’t yet know why.

In ‘stiff person syndrome’, the immune system attacks a protein that helps make gamma-aminobutyric acid (GABA), which regulates motor neurons – the nerves that control movement.

Low levels of GABA cause the neurons to fire continuously when they are not supposed to, resulting in spasms and stiffness.

What are the symptoms?

The main symptoms caused by ‘stiff person syndrome’ are spasms and stiffness of the trunk and limbs.

Spasms can be caused by loud noises, with the condition also causing increased sensitivity to sound.

Touch and emotional distress may also be felt more intensely as a result of the condition.

The spasms can be so severe that people fall over or lead to problems walking and other disabilities.

Stress and anxiety also tend to be higher in people with the condition, mainly due to the unpredictability of spasms.

The lack of GABA – which regulates anxiety – in their system also impacts mental health.

Her subsequent struggles will be documented in the new Amazon Prime release I Am: Céline Dion – a heartbreaking look at the superstar’s daily life with SPS

The Canadian star has canceled all live performances as she battles the rare condition

Documentary director Irene Taylor says Dion was adamant about keeping a nearly ten-minute scene in which she experiences a prolonged spasm.

“And I think that was her way of saying, if you filmed that, you know it’s okay. It’s OK. I don’t know what it looked like. And I thought: yes, but she doesn’t know what it looks like. Like… she was only semi-conscious. So I ended up editing 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 took her hand, she said she thought she was ‘hiding’ her emotions.

“That moment when she reached out and took my hand,” she said. “Maybe I was showing how upset I was, but I was so relieved that she was okay.”

“But I was also inspired because she was singing and performing, and I had never seen her in concert. And I thought, this is what it must be like to see Céline in concert.

“Because I was so overwhelmed by, you know, this like, ‘Hell yeah,’ like (I felt) emotion (on) me. You know, when she did all her Céline Dion stuff, her mannerisms and so on, I really appreciated it.”

It shows her grunting, appearing to be in pain, as she lies convulsively on her back, unable to move. She is attended by medical workers before recovering and singing

Dion revealed her diagnosis in 2022 and has previously said it can cause cramps so strong they can break ribs and feel like throat strangulation

Taylor, also known for Oscar-nominated documentaries The Final Inch and Beware The Slenderman, said: “I would never have shown it if she didn’t want me to do it, that’s just the honest truth. It’s too personal.’

Taylor says Dion “never asked me how I was editing anything”, but explained “it’s fair to say she set the film on course 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 has been built up about them for a long time because they sometimes don’t. “If I don’t even have control over that story, it’s like it becomes a force unto itself.”

I Am: Céline Dion, directed by Academy Award nominee Taylor, will be available worldwide on Prime Video on June 25.