Suffering from stiff person syndrome (SPR), an autoimmune disease with no known cure that causes acute pain, difficulty moving and spasms, the 56-year-old Canadian chose to “stop lying”.
She felt the first sign of this silent illness 17 years ago when the first spasms appeared, affecting her voice. In simple words, she explains how this episodic illness disrupted her career, forcing her to take medication. “My instrument was no longer working so we increased the doses […] I took medication to be able to walk, to be able to swallow. But the show must go on! When I had to cancel a concert, I had to tell people why; I had to lie… I can’t lie anymore.”
In her company, we go back in time, we see her again in her early days, discovering her name for the first time in red letters on the front of L’Olympia, under that of Philippe Lavil! We follow her every day, in the company of her twins, Eddy and Nelson; or during a muscle rehabilitation session.
I am: Celine Dion is meant to be moving and unvarnished, but the funny moments are never far away, like when she talks about her passion for shoes and what she is willing to do to wear the pair of her dreams, all filmed in the middle of a gigantic warehouse that houses hundreds of stage outfits and shoes. Adorable, Céline Dion is also adorable, never failing to say hello to everyone or to apologize for being late. It touches us when we see her rushing to the bathroom to quickly sand her feet because she has just learned that her therapist is going to focus on the mobility of her feet!
“I’m not dead”
If this Monday evening, during the preview of the documentary, she confided to AFP: “I’m not dead!”, Celine Dion admits in this same film that with doses of Valium between 80 and 90 grams per day, she could have died. But, as she explains to AFP: “When life imposes a challenge on you, you have two choices: take it head on, or not.” She who assures that her decision to discuss her situation in the documentary is both “a great gift and a great responsibility”.
She, who has been rare in public since the announcement of her illness, also hopes that the film will encourage people suffering from the same syndrome.
”It’s difficult to be here but at the same time I’m very movedshe declared on the red carpet in New York, during the premiere of I am: Celine Dion. I feel like I still have a lot of support and a lot of love and I hope this documentary will help, because it helped me a lot, even if it’s a fight forever, one day at a time .”
In December 2022, the singer with more than 250 million albums sold announced for the first time the illness which forced her to put her career on hold.
Scenes that are difficult to watch
Transparent, Céline Dion wanted to tell her own story in her own words rather than having people talk about her.
“For someone like me whose job is to tell stories, it was holy breadconfided Irene Taylor, the director of the documentary. She showed herself unvarnished, in a very authentic way. In its joys, as in its sorrows.”
The joys, the slowed down daily life but also the pain and the attacks of spasms: the documentary hides nothing, daring to images that few stars of the caliber of Celine Dion would agree to reveal.
And then, there is a note of hope that shows the tip of its nose. The artist who tries to rediscover her feelings in the studio and her disappointment when she hears the recordings. We hear him say “I don’t like that”, pouting, then regain the upper hand and push the studio door again.
As she says in the film, Celine Dion has always believed that she had to produce beautiful, shiny apples for her fans, who pay considerable sums and queue for hours to hear her sing. “Maybe I could offer them another style of repertoire but it will be up to them to decide if they like itshe concludes. I always find a plan B or a plan C but I will never stop!”
