I Am: Celine Dion director describes singer’s illness: ‘I watched her body go stiff in front of our camera – I feared she wasn’t breathing’

But things have been more difficult in recent years, since a diagnosis of stiff person syndrome (SPS), a rare neurological disorder that causes progressive muscular stiffness and spasms so strong that they can cause broken ribs, has profoundly affected her ability to sing and perform.

Since disclosing her SPS diagnosis in December 2022 as she cancelled her Courage World Tour, the My Heart Will Go On singer, 56, has spoken increasingly openly about the impact the illness has had on her life and career.

Now, in a powerful documentary directed by Oscar-nominated filmmaker Irene Taylor, Dion is showing fans the reality of living with SPS and the battles she fights every day to not only continue singing, but to get through daily life.

In the year that Taylor and her crew spent making I Am: Celine Dion, the singer only left her house three times – once to go to the recording studio for her first attempt in three years to record a song.

It was a tough day for the singer, one which ended with Taylor witnessing first hand the terrifying effects of SPS.

“Whereas she had once been able to record a handful of songs in a single day, we filmed her persevere through just one, her voice failing her, then surprising her,” says Taylor, 53, whose 2009 documentary The Final Inch, about the global effort to eradicate polio, was nominated for an Academy Award.

“By the end of the second day, her joy was palpable. However, just minutes after leaving the studio, she felt a muscle spasm in her foot. The exhilaration and stimulation of making all that music triggered a terrifying neurological response.

“Within moments, I watched her body go stiff in front of our camera, her gaze froze and she was suddenly unable to speak. Holding the boom microphone and camera, Nick (Midwig, director of photography) and I were just inches from her face. I feared she wasn’t breathing.”

“Thankfully, this was not the end of Celine’s journey, and Celine knew it,” she continues.

“Forty minutes after her attack began, she sat up, confessing embarrassment, consenting to our camera remaining in the room. Her therapist put on one of her favourite songs, Who I Am by Wyn Starks.

“As the music began, I watched Celine’s body roar back to life, her eyes filling with ecstasy as she sang along, arms outstretched, giving to herself, and the handful of us in the room with her that day, the kind of once-in-a-lifetime performance that makes her, truly, Celine Dion.”

At the New York premiere of I Am: Celine Dion, the Canadian superstar received a standing ovation, taking the stage to deliver a speech that left her in tears.

“This movie is my love letter to each of you,” she said.

“I hope to see you all again very, very soon.”

It is clear, not only from the impassioned speeches she has given but from the depth of emotion displayed in the documentary, that Dion is heartbroken by the toll her illness has taken on her ability to perform.

“It’s not hard to do a show, you know. It’s hard to cancel a show,” she says in the film.

“I’m working hard every day but I have to admit, it’s been a struggle.”

In the years leading up to her diagnosis, Dion tried everything to continue performing, to deliver for her fans and for herself – even, she recently disclosed, taking life-threatening amounts of medication to help ease her muscle spasms.

In an interview on NBC in the US, Dion told presenter Hoda