Celine Dion ‘gently cried’ watching own documentary about her Stiff Person Syndrome suffering

LOS ANGELES – Celine Dion “gently cried” when she first watched I Am: Celine Dion, a documentary about the devastating toll of the illness, Stiff Person Syndrome, that has forced the singer to cancel all performances and rarely leave home.

But the Canadian diva and Grammy winner told director Irene Taylor not to cut any footage from the 102-minute film – including the many intimate, unfiltered moments when the 56-year-old pop star is seen in great physical distress.

In a Zoom interview with The Straits Times to promote I Am: Celine Dion, which premieres on Prime Video on June 25, Taylor says the performer also told her nothing was off-limits during filming.

In late 2022, Dion – famous for chart-topping power ballads such as My Heart Will Go On (1997), Because You Loved Me (1996) and The Power Of Love (1993) – announced that she had been diagnosed with Stiff Person Syndrome.

A rare autoimmune and neurological condition that progressively worsens, it causes stiffness and spasms all over the body, which has made it difficult for Dion to walk and to do what she loves the most: sing.

Asked why she thinks Dion was so open about the heartbreaking impact of the disease, Taylor, 54, says: “I think Celine, for some years, had this gnawing sensation that she was ‘lying’ to the world – and she uses that word.

“Many people would hide a disabling condition if they can. And when it started to get bad enough that she could no longer perform in the same way, I think she decided she wanted to be open about what was going on.”

Dion – who has three sons, twins aged 13 and a 23-year-old – then gave Taylor unrestricted access to her life and carte blanche to document it as she saw fit.

Taylor says: “She said to me, ‘I’m letting you in my house. You can film anything, but please do not ask permission to film somewhere or something, because it will really ruin the moment for me. I’ve let you in here – if there’s an issue, I’ll tell you.’”

The American film-maker adds: “She was very generous with that, and I think she really wanted to see what I saw, with nothing held back.”

I Am: Celine Dion shows Dion often looking frail and haggard, and includes harrowing scenes where her body is racked by painful spasms and she is barely able to move.

When Taylor first showed Dion the director’s cut, “she gently cried through most of it”.

“But she had little moments of laughter too. She doesn’t really think she’s funny even though she is.”

Dion really believed in the film, Taylor adds. “I know this because she said, ‘I don’t want you to change anything.’”

But the singer – whose husband and former manager, Rene Angelil, died of throat cancer in 2016 – had already impressed the director with her attitude during filming.

Taylor notes: “I was prepared for her to be kind and funny, but not as kind and funny as she is. And her level of openness is rare.

“I have made more than 10 documentaries – all character-driven portraits of people – and she was remarkably open, which was continually surprising to me.” Taylor’s credits include the Oscar-nominated The Final Inch (2009), a documentary short about efforts to eradicate polio.

Taylor also praises Dion’s bravery once she was shown the completed film.

“She saw that, ‘Wow, I really don’t wear make-up for most of it, and I really am having a hard time during that medical episode, and I am very upset in that moment.’

“And for her to just say, ‘Let’s do this. This is my experience and this is what I want to let people see’ – that is very remarkable and very rare.”

In a recent interview with American television network NBC, Dion vowed to return to performing no matter what it takes.

“This passion will never go away,” she declares. “I’m going to go back on stage even if I have to crawl, even if I have to talk with my hands. I will.”

I Am: Celine Dion premieres on Prime Video on June 25.