Celine Dion’s Olympic Journey: Battling Stiff Person Syndrome

During one of the most harrowing scenes from her much-watched Amazon Prime documentary, Celine Dion is seen in the throes of a terrifying seizure. 

Her body is rigid, wracked by painful spasms caused by Stiff Person Syndrome, a rare and chronic neurological disorder. 

That beautiful voice, familiar to millions throughout the world, is heard wailing in despair.

What more perfect way to celebrate the opening of the Paris Olympics, then, than with a gold-medal winning performance by the 56-year-old singer who, two years on, has fought her way back from ill health with as much determination and grit as any world-class athlete. 

Her triumphant return to the stage at Friday night’s opening ceremony in the French capital brings to an end wide-spread fears that her incurable autoimmune disease might spell the career end of one of the most famous singers on the planet.

How Celine Dion fought every day to be fit to close the Olympics 2024 Opening Ceremony

During one of the most harrowing scenes from her much-watched Amazon Prime documentary, Celine is seen in the throes of a terrifying seizure

Celine’s triumphant return to the stage at Friday night’s opening ceremony in the French capital brought to an end fears her incurable autoimmune disease would end her career

But as anyone who watched the documentary ‘I Am: Celine Dion’ will know, even when her health was at its lowest, leaving her struggling to move and even to sing, the star refused to give up.

‘If I can’t run, I’ll walk. If I can’t walk, I’ll crawl. But I won’t stop,’ she said during one of her darkest moments.

Over the past few months, hellbent on making her come-back, Dion has been undergoing daily physical and vocal therapy, battling against an incredibly rare condition which was first diagnosed in 1956 and affects only one in a million people.

As recently as April, she told French Vogue that she didn’t know when she would return to the stage, but added: ‘There’s one thing that will never stop, and that’s the will. It’s the passion. It’s the dream. It’s the determination.’

Such words which will no doubt chime with the hundreds of elite athletes from around the globe who are poised to chase down medals in the fortnight ahead.

The Olympic motto – Citius, Altius, Fortius – Faster, Higher, Stronger – might even have been written for the Canadian star who has battled miscarriage, infertility, IVF and bereavement as well as ill health.

No wonder the French were so desperate to have her in Paris on Friday night, dressed in Dior, belting out the iconic Gallic song ‘La Vie En Rose’ in a voice millions of fans feared they would never hear again. Who better to embody the Olympic spirit and light up the greatest sporting event in the world?

Dion’s starring role at the opening ceremony was kept under wraps until the last minute. Even after she was spotted in Paris earlier this week, President Macron refused to reveal if she would be performing during an interview with the TV channel France 2.

What more perfect way to celebrate the opening of the Paris Olympics than with a gold-medal winning performance by the singer? (Pictured in June)

But, as anyone who watched the documentary ‘I Am: Celine Dion’ will know, even when Celine’s health left her struggling to move and even to sing, the star refused to give up 

‘If I can’t run, I’ll walk. If I can’t walk, I’ll crawl. But I won’t stop,’ she said during one of her darkest moments 

Stiff Person Syndrome (SPS), her autoimmune disease of one-in-a-million rarity, has paralyzed her voice and stolen her ability to sing

In April, Celine said she did not know when she would return, but said: ‘There’s one thing that will never stop, and that’s the will. It’s the passion. It’s the dream. It’s the determination’ 

‘Apparently she has arrived in Paris. It’s great!’ he teased. ‘I would be immensely happy if she could be at the this opening ceremony, like all our compatriots.’

In April, while discussing her health, Dion herself appeared to hint that a possible comeback lay ahead after four years out of the limelight, telling Vogue France: ‘The way I see it, I have two choices. 

‘Either I train like an athlete and work super hard, or I switch off and it’s over. I stay at home, listen to my songs, stand in front of the mirror and sing to myself.

‘I’ve chosen to work with all my body and soul, from head to toe, with a medical team. I want to be the best I can be. My goal is to see the Eiffel Tower again!’

In many ways the story of Dion’s life has always been one of dedication, hard work and, over the past couple of decades – when life threw one problem at her after another – of triumph over adversity.

Born in March 1968, the youngest of 14 children born into a French-speaking family in Quebec in Canada, the Dions were not well-off but her musical mother, Therese, recognised and supported her daughter’s musical talent. 

She was just 12 when she wrote her first song, which her mother sent to impresario René Angélil. After hearing her sing, he signed her on the spot and then remortgaged his house to finance her first album.

That fairytale beginning was followed with gruelling years of hard work. Her first Canadian TV performance in 1981 was followed by first prize at the 1982 Yamaha World Popular Song Festival in Tokyo. 

The same year, she appeared on the popular French TV show Champs-Élysées where the host, after hearing her sing, announced: ‘Remember her name: Celine Dion.’

By 1988, when she won the Eurovision song contest in Dublin, representing Switzerland with the French song Ne Partez Pas Sans Moi, she was well on her way to becoming a global star, known for her soaring power ballads.

Dion’s starring role at the opening ceremony was kept under wraps until the last minute. Even after she was spotted in Paris earlier this week, French President Macron (pictured) kept mum

She hinted at her return in April, saying: ‘The way I see it, I have two choices. ‘Either I train like an athlete and work super hard, or I switch off and it’s over’

She was just 12 when she wrote her first song, which her mother sent to impresario René Angélil. After hearing her sing, he signed her on the spot and then remortgaged his house to finance her first album

Her successes in the decades that followed are too numerous to recount in their entirety but some of the highlights deserve mention. 

The 1992 theme tune to the Disney film ‘Beauty and the Beast’ on which Dion duetted, went to number one around the world and won a Grammy and an Oscar. 

Falling Into You was the biggest-selling album worldwide of 1996. The Titanic film hit My Heart Will Go On, won Best Original Song Oscar in 1998 and featured on the best-selling film sound track ever.

By then, Dion was married to her manager, René, who was 26 years her senior, but while her career went from strength to strength, their six-year struggle to start a family caused them private heartache.

To complicate matters further, René was diagnosed with throat cancer in 1999. Before beginning radiation treatment, the couple turned to IVF. Dion gave birth to her eldest son, René-Charles, in January 2001 after just one round of treatment.

After completing her Las Vegas residency in 2007, she and René decided to try IVF again but Dion miscarried soon after announcing she was pregnant.

After five further attempts at IVF, she announced she was pregnant again, this time with triplets, in May 2010. 

Aged 42, she subsequently miscarried one of the babies and gave birth to twins, Nelson and Eddy, in October that year. 

By 1988, when she won the Eurovision song contest in Dublin, representing Switzerland with the French song Ne Partez Pas Sans Moi

By 1994, she and René, who was 26 years her senior, were married, but soon their six-year struggle to start a family caused them private heartache

The couple turned to IVF and Dion gave birth to her eldest son, René-Charles, in January 2001 after just one round of treatment (pictured 2015) 

In a bid to make the painful subjects of infertility and miscarriage less taboo, Dion has spoken openly about the difficulties she faced in becoming a mother.

‘It’s life, you know,’ she told Oprah Winfrey back in 2010 before her final successful pregnancy. ‘A lot of people are going through this but it’s not being told.’

But the couple’s happiness was short-lived. Just six years later, Dion lost her 73-year-old husband, the love of her life, to throat cancer. Two days after his death, one of her brothers also died.

While grappling with bereavement and comforting her children, Dion was already experiencing the early symptoms of Stiff Person Syndrome. 

She felt the first signs in 2008 when during her ‘Taking Chances World Tour’ she had difficult controlling her voice and noticed her muscles becoming stiff.

‘It’s like somebody is strangling you. It’s like somebody is pushing your larynx/pharynx this way,’ she said, demonstrating with her hands.

Earlier this year she told French Vogue that was actively working against her condition, which is incurable.

‘I work on my toes, my knees, my calves, my fingers, my singing, my voice…I have to learn to live with it now and stop questioning myself.’

Celine and all her children and a friend (centre) René-Charles, 23, is far left and twins Nelson and Eddy, 13, far right and second from right. All pictured in Las Vegas in July

Dion has said to her children: ‘You lost your dad [to throat cancer] but mom has a condition and it’s different. I’m not going to die. It’s something that I’m going to learn to live with’

Above all, she said, she was fighting for her three sons, now aged 23 and 13, because ‘they already lost a parent’.

‘I let them know, “You lost your dad but mom has a condition and it’s different. I’m not going to die. It’s something that I’m going to learn to live with.’

Ongoing speculation about Dion’s return to the stage reached fever pitch earlier this week after she was spotted in Paris, staying at the same hotel as Lady Gaga, the Royal Monceau near the Champs-Elysées. 

The pair, it was said, would be duetting together at Friday night’s glittering Olympic floating opening ceremony on the Seine, singing a song by Edith Piaf which has come to epitomise French culture with its lyrics about the beauty of life.

As the big day drew closer, Dion appeared to confirm the news, posting footage of herself on Instagram which showed her walking into the Louvre gallery. 

Her glamorous, healthy appearance was a world away from the frail woman she fearlessly allowed the world to see in her documentary which was released in the UK last month.

Expressing her love for the French capital while she took in the artworks on display, she appeared emotional about her long-awaited come back.

‘Every time I return to Paris, I remember there’s so much beauty and joy still to experience in the world,’ she said.