Celine Dion’s tragic backstory has taken an even sadder turn

Her diagnosis would be horrific for anyone, but there’s an added element of awful luck for Dion

Victoria Richards
Monday 29 May 2023 04:36 BST
Celine Dion reveals she has been diagnosed with incurable neurological disease
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Celine Dion has always been an icon. At school in the 1990s, she solidified her place in our teenage hearts with (of course) “My Heart Will Go On”, the standout track from weepy blockbuster Titanic (which, I confess, I saw three times at the cinema. Yes, that’s nearly 10 hours of my life I’ll never get back).

I remember vividly going on a school trip and belting the lyrics – “every night in my dreams, I see you, I feel youuuuu.... that is how I know you go onnnnn” out of the window with my classmates, and I like to think it was tuneful (though I know that in my heart it definitely was not). Still, Dion moved us – all of us. Even the fellow 15-year-old boys we dragged to the cinema had to sneakily wipe away a tear when she started lamenting.

But if she was the poster girl for romance; behind the scenes, Dion was experiencing tragedy of the worst kind. She has an extremely rare and extremely debilitating neurological condition: stiff person syndrome. Now, it’s forced her to cancel the remaining dates of her world tour and tell fans she is not strong enough to perform.

Dion, 55, said in a statement: “I’m working really hard to build back my strength, but touring can be very difficult even when you’re 100 per cent.”

The disorder, which is experienced by only around one in a million people, is incurable. It causes spasms which can affect your ability to walk or to sing, and Dion said in a video last year that it affects “every aspect of my daily life”.

“As you know, I’ve always been an open book and I wasn’t ready to say anything before, but I am ready now,” she said last year, when she first told fans of her diagnosis. “I’ve been dealing with problems with my health for a long time and it’s been really difficult for me to face these challenges and to talk about everything that I’ve been going through.”

As a result, Dion said she has been forced to reschedule certain dates across her upcoming European tour, because the condition impacts on her ability to perform, as well as to carry out normal activities.

This kind of diagnosis would be horrific for anyone, but there’s an added element of awful luck for Dion: because her backstory is so achingly sad.

She’s spoken historically about her infertlity struggles – the singer, who has 13 siblings of her own, tried for years to have a baby. She experienced miscarriage and reportedly went through seven rounds of IVF and two operations before finally conceiving a son and fraternal twins.

She said in an interview in 2013: “I thought as long as my health permitted me and unless my doctor thought physically I couldn’t do it, then I would go on with the IVF until someone told me to stop.”

In 2016, the singer’s husband and manager, René Angélil, who was 20 years her senior, died from throat cancer. And then, just two days later – on what would have been Angélil’s 74th birthday – her brother, Daniel, also died from cancer, aged 59.

Last year, Dion spoke candidly – as has become her trademark – about whether she could imagine ever finding love again. “I’m not thinking about a relationship and falling in love again,” she said. “I don’t. Losing my husband, for my kids to lose their father, it was quite something.”

For someone so determined – whose career has been so consistent and so full of growth – to experience so many personal setbacks comes as a shock to all of us. Not just her fans, but for those who, like me, grew up with Celine Dion blaring in the background of their childhoods (or childhood homes – I will forever associate her voice with my mum playing her 1997 “Let’s Talk About Love” album in the kitchen on Sunday afternoons).

Since her most recent revelation of ill-health, there’s been an outpouring of shock, love and support on social media. The main sentiment? “No one should suffer this much” – and “No one deserves this pain, and especially not an icon who’s brought such joy”.

How she’s triumphed, despite going through so much pain, is testament to her strength and resolve. If there’s anyone who will battle the coming months and years with grace, it’s going to be Dion. She sang it like she meant it: she will go on.

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