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‘I miss music’: Celine Dion weeps as she demonstrates impact of Stiff Person Syndrome on her voice

Famed Canadian singer is the subject of a new documentary that details her struggles with a rare and incurable neurological condition

Roisin O'Connor
Wednesday 26 June 2024 10:08 BST
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I Am: Celine Dion

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Celine Dion’s new documentary offers fans a glimpse into her life behind the scenes following her devastating diagnosis with Stiff Person Syndrome, as she reveals how it affects her famous voice.

The “All By Myself” star, 56, disclosed that she had the rare neurological condition, which causes muscle stiffness and painful spasms, in December 2022.

InI Am: Celine Dion, which is out now on Prime Video, the Canadian singer reveals she first noticed symptoms of the condition 17 years ago, while having breakfast.

“Seventeen years ago I started to experience some voice spasming, this is the way it started,” she said in the film, directed by Oscar nominee Irene Taylor.

“I woke up one morning and I had my breakfast, and after having my breakfast, my voice started to go up.

“It freaked me out a little bit, because normally when you’re tired as a singer because you did a show the night before, your voice would go roughly half a key down or one note down.”

Celine Dion grew emotional as she spoke about the impact of Stiff Person Syndrome on her voice
Celine Dion grew emotional as she spoke about the impact of Stiff Person Syndrome on her voice (Getty)

She continued: “I was scared, I didn’t know what to do. And today, [I’ve received] the diagnosis. SPS, which is Stiff Person Syndrome.

“It’s in the muscle, it’s in the tendons, it’s in the nerves. You can’t see anything, because it’s not seeable.”

Dion said it reached a point where she “couldn’t walk”, as she was losing her balance and in “a lot of pain”.

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“I can’t use my voice yet,” she said, starting to weep. “Music… I miss it a lot. But also, the people. I miss them.”

Celine Dion offers a look at her life behind-the-scenes while she struggles with the rare condition
Celine Dion offers a look at her life behind-the-scenes while she struggles with the rare condition (AP)

Later, she demonstrated how SPS prevents her from singing: “When I try to breathe, my lungs are fine; it’s what is in front of my lungs that’s so rigid, because of Stiff Person Syndrome.”

As she tried to sing, her voice – the famous five-octave-spanning mezzo-soprano behind “My Heart Will Got On” – noticeably cracked and she stopped, growing emotional again.

“That’s what happens and it’s very difficult for me to show this to you,” she said, crying.

“I think I was very good… I think I had some stuff that was amazing.”

Celine Dion in the trailer for ‘I Am: Celine Dion'
Celine Dion in the trailer for ‘I Am: Celine Dion' (Prime Video)

I Am: Celine Dion is described as a “love letter” to Dion’s fans, as it highlights her extraordinary career to date while offering a behind-the-scenes look at her struggles with a life-altering illness.

Much of the documentary is filmed around Dion’s home, where she spends time with her 13-year-old twin sons, Nelson and Eddy, receives treatment, and reflects on her humble beginnings as the youngest child of 14 in a poor family.

Dion has three children, including her eldest son René-Charles, 23, whom she shared with her late husband and manager, René Angélil. Angélil died in January 2016 from throat cancer, aged 73.

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