"Krone" interview

“Celine Dion called her illness ‘my lie'”

Celine Dion at the premiere of the documentary "I am: Celine Dion", which will be available on Amazon Prime Video from June 25.(Bild: AFP/ANGELA WEISS)

The images Irene Taylor shows in her documentary about the famous singer are shocking. This is the first time the public has seen how seriously ill Celine Dion, who suffers from stiff person syndrome, is. The "Krone" spoke to the director of "I am: Celine Dion" (from June 25 on Amazon Prime). 

Celine Dion lies on a stretcher, whimpering and screaming in pain, her whole body stiff, her face frozen, her eyes fixed - anyone who has ever seen the disturbing images from the new documentary "I am: Celine Dion" (from June 25 on Amazon Prime Video), it will be hard to reconcile them with the anthem-singing powerhouse that the singer was before her serious illness.

She suffers from the very rare stiff person syndrome, a severe neurological disease that stiffens the muscles: "It actually started 17 years ago, when I had the first cramps in my vocal cords," the visibly weakened Dion tells director Irene Taylor in the film. She started filming the documentary without knowing what was really going on inside the superstar: "She called her illness 'my lie' because she kept it a secret from the public for a long time. Over the course of the year I spent with her, she then found the will to put it all out there, to share as much of herself as she had never done before."

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And so Taylor was also allowed to show the world the worst scenes of Dion's seizures: "Of course, nobody was prepared for situations like this. It just happened while we were filming. Celine never asked to see the footage either. But of course I showed her the whole movie. And she said: 'It's okay. Don't cut anything out, you can have it all'."

Stiff person syndrome

Stiff person syndrome is a neurological autoimmune disorder that affects just one or two people in a million. The muscles stiffen and cramps often occur, but the symptoms vary. The disease cannot be cured.

She was generally surprised at what a kind-hearted person Dion was: "She was so good to all of us, and we ended up staying at her house and filming all day. Sometimes she couldn't do anything, mostly she was listening to music, spending time with her kids and the dog. She was extremely open."

Celine Dion was very open-hearted when it came to filming, she just let things happen while the camera was rolling.

Regisseurin Irene Taylor

The documentary shows how much Dion struggles with her health - she receives infusions from plasma donors and has to take countless medications: "At times I took so much Valium that I could have died just so I could walk and swallow."

Her voice also suffered badly, and in the film you can see how the "My Heart Will Go On" singer tries with all her might to record new songs. But her voice keeps breaking and Dion has tears in her eyes when she says: "I miss the music and the people, my audience. I'm not sure if I'll be able to sing like this again, with joy and without thinking." She quietly adds: "I think I was very good once."