Image credit: Getty Images
Image caption: The singer made a rare appearance at the Grammy Awards earlier this year
As the sun sets behind the mountains in an upscale neighborhood 30 minutes off the Las Vegas Strip, a familiar voice can be heard singing from behind closed doors.
The security guard guarding the hotel suite nodded.
I'm about to interview a musical superstar, and she seems to be in a very upbeat mood.
But that iconic voice singing so casually is one that fans feared they would never hear again.
“I was diagnosed with a very rare neurological disorder.”
Following the shocking announcement, Celine Dion canceled the remainder of her world tour and has rarely been seen in public since.
Symptoms of the problem
The medical name for her little-known condition is Stiff Person Syndrome (SPS), a neurological disorder that causes muscle spasms.
As we sat and talked, Celine shared that she went undiagnosed for many years.
The 56-year-old singer describes the distress she felt as a performer when she noticed changes in her voice while on tour.
“I just felt a bit weird, like a little cramp,” the Canadian star said.
“I was finding it hard to get my voice out and I was starting to strain it a little bit.”
She demonstrates the subtle difference by singing the first few bars of her 1993 hit “The Power of Love,” showing how she has to strain her voice to sustain notes that once came easily.
Occasionally, she would ask the conductor of her backing musicians to lower the key of certain songs for some performances.
“I had to find a way to get on stage,” she explains.
She hoped that singing a little lower might help her voice.
Image credit: Amazon MGM Studios
Image caption: Celine Dion discusses how she deals with stiff person syndrome in new documentary
Audiences would never know the struggles she faced behind the scenes.
But Celine says taking time off felt impossible at the time.
“These shows have been sold out all over the world for a year and a half.
“And I'm going to tell people, 'I'm sorry about my cramps. I'm sorry about the indescribable parts of me.'”
She was putting so much pressure on herself to continue with the show without understanding what was causing the symptoms she was experiencing.
But it all became too much.
After a final diagnosis, she realized it wasn't just tour fatigue — it was permanent.
Image credit: Getty Images
Image caption: Celine's kids join the stage at the final show of her 2019 Las Vegas show
SPS is a potentially debilitating autoimmune disease with no known cure.
It occurs when signals from the nerves to the muscles don't work properly.
During particularly severe attacks, the convulsions can be so severe that the person can barely move.
But getting a proper diagnosis has given her a better understanding of the illness and helped her cope with it.
“My goal is to get involved with the foundation and raise money to raise awareness of the disease and find a cure, which would be amazing,” she says.
During her hiatus from performing, Celine has learned to adapt with medication, physiotherapy and the help of specialists like Dr Amanda Piqué.
“The disease is now in the public's awareness and in the public's attention,” Dr. Pique said.
Dr. Pique has treated many patients who went undiagnosed for many years.
Celine hopes that the publicity she gains from speaking publicly about her battle with the disease will help others.
“We need to diagnose this disease more accurately,” Dr. Pique said, “and the more we can do that, the more clinical trials we can have and the more treatments we can approve.”
Celine says she will live with the disease for the rest of her life but the treatment she is receiving to reduce muscle spasms will hopefully enable her to sing on stage again.
“My voice will get better,” Celine said. “It's been happening for a while now. Right now, my voice is getting better.”
New Las Vegas Shows
Image credit: Getty Images
Image caption: Celine Dion's last two Las Vegas shows have grossed more than $680m (£530m)
Fans will be able to see how the singer's health issues have affected her life in a new documentary titled “I Am: Celine Dion.”
She finally sees a path to returning to performing and is preparing for a new show in Las Vegas.
“Since I'm back I've been working hard to get this show ready,” she said with a big smile.
It's clear she missed performing terribly.
“I'll be on stage. I don't know the exact time, but trust me, I'll be yelling it.”
Celine holds the record for being the most successful resident artist of all time on the Las Vegas Strip, and although she's extremely proud of her career, her time away has given her a chance to reflect.
After years of traveling the world, she realized she had only seen a small part of it.
Being in tour mode all the time while traveling comes with a “price,” she said.
“On my days off, I wanted to prepare for the next show. I'd toured the world and there wasn't much to see.
“But as a performer and as a singer, I've received a lot of love from my fans.”
Queen of power ballads
My first memory of Celine Dion is when one of my middle school teachers played us a cassette tape of her single “Pour Que Tu M'aimes Encore” to encourage us in our French studies.
She is best known to audiences as the queen of power ballads.
Her '90s hits like “The Power of Love” and “It's All Coming Back to Me Now” are instantly recognizable for her uplifting voice.
But at the time she was battling health issues, Celine admits she was a little jealous of the breathless “whisper pop” style used by contemporary female artists.
Singers like Billie Eilish and Lana Del Rey have had big hits at the opposite end of the volume spectrum.
Image credit: Getty Images
Image caption: Celine Dion rose to fame when she won the Eurovision Song Contest in 1988 representing Switzerland.
“I was sleeping late and wondering if maybe I should start smoking,” she jokes.
“I was jealous. They were going out, partying, barely dressed and I thought they were amazing.”
It's a stark contrast to the strict discipline she has imposed on herself for much of her career.
“I said, 'Don't talk, don't eat this, too much dairy will make you cough up phlegm.'”
She continues to joke that maybe she'll throw her classical training out the window and adopt a new husky-voiced persona.
“How about at a concert?” Celine says, winking at the camera.
She has maintained her sense of humor amid her ongoing battle with health issues.
But whatever style she chooses, fans will be thrilled to see her back.
'I Am: Celine Dion' will be released on Amazon Prime Video on June 25th, while the extended interview with Emma Vardy will be available to watch on BBC iPlayer.
