Celine Dion: When a Diva Loses Control Over Her Voice and Body

On June 21, Amazon premiered the documentary "This Is It: Celine Dion." Initially, the film was intended to document the legendary singer's preparations for another global tour. Instead, it starkly reveals what happens when a superstar loses control over her voice and body.

1. Losing Control

Three years ago, director Irene Taylor received a call from Celine Dion's manager. At that time, Irene was filming a documentary about Celine's upcoming global tour. The manager's words were alarming: “I have to tell you something. Celine is very ill. No one knows what it is. We don’t know what’s going on.”

Irene was startled. Before taking on this project, she knew little about Celine Dion, only that she was the slim singer of "My Heart Will Go On." Later, through a Zoom call, Irene met Celine for the first time. Through the lens, Celine first saw the trees in Irene’s yard. The two began discussing the trees' shapes, species, and scents, which helped Irene relax. "She was truly cheerful, and I could lower my guard, telling myself, ‘You’re actually talking to a woman, a mother, a person who loves trees just like you.’

Months later, Irene and her crew entered Celine's home for the first time. Filming commenced, and Celine showed her most relaxed, casual side. She wore pressed slacks and a white shirt, no makeup, and her hair was tied in a simple bun. Her daily routine was minimal: making coffee, playing with her dog Bear, lounging by the pool in her favorite pajamas, listening to music, and napping.

Curled up on the couch, Celine confided in Irene about experiencing vocal cord spasms seventeen years ago. She was touring Germany, and one morning, during her usual 45-minute vocal exercises, her voice suddenly became high-pitched. It was an unfamiliar sound. She quickly ruled out fatigue, noting that a tired voice usually drops in pitch and roughens, not sharpens. Since then, these spasms occurred frequently. She tried everything from steam showers to over-the-counter medications, visiting numerous ENT specialists, but with little relief.

The documentary’s focus shifted dramatically. It no longer just chronicled a legendary singer's global tour but laid bare the struggles of a diva losing control over her voice and body.

Shortly after revealing her condition to Irene, in November 2021, Celine announced the postponement of her Las Vegas residency due to "severe and persistent muscle spasms."

Throughout 2022, Celine's condition did not improve. She was diagnosed with Stiff-Person Syndrome (SPS), an extremely rare autoimmune neurological disorder affecting only one or two people per million, with women twice as likely to be affected as men. Known causes include heightened brain sensitivity to noise, touch, or emotional distress, leading to uncontrollable muscle spasms and body rigidity.

What does it feel like? Celine described the spasms as "like being strangled," with pressure on her throat, abdominal cramps, and spinal spasms severe enough to fracture ribs.

As a documentary filmmaker, Irene knew about Celine’s pain but never expected to capture it on camera.

One day, while Celine was recording a new song for the film "Love Again," a spasm struck. She lost control of all her muscles, her mouth and eyes unable to close, her body stiff as a board, needing assistance to turn over. She cried out in pain, tears welling up. Only after two doses of emergency spray did she stabilize, curling up in a white blanket.

Irene recalled the episode lasting nearly 40 minutes, "It was the most unusual, uncomfortable moment of my life because we didn't know what was happening. We were unsure if she was conscious or would survive."

During the spasm, the therapist asked if Celine wanted the camera turned off. She refused. Everyone knew how much she strived for perfection. There’s a scene in the documentary where she learns her therapist is coming to massage her feet, and she quickly asks if she should apply foot cream and rushes to scrub her feet. Yet this time, she chose to reveal her most vulnerable, helpless, and painful side to the world.

2. The Show Must Go On

Signs of trouble had been there all along.

The 2008 documentary "Celine: Through the Eyes of the World" followed Celine Dion during her world tour, showcasing her work and personal life. In that film, she was already experiencing vocal cord and throat discomfort.

In March 2008, in Brisbane, the first stop of her Australian tour, she canceled the concert due to a throat infection. Her attending physician, Dr. Pete Garcia, explained: "She has a respiratory infection and viral infection. Without rest, her condition will worsen, and her vocal cords will deteriorate." A week later, Celine was back on stage for her 40th birthday concert, interacting with fans and playfully flexing her muscles, showing no signs of trouble.

A few months later, the night before her Madison Square Garden show, at 2 a.m., Dr. Pete received a call from Celine. She had vomited four times and was experiencing migraines, a first for her. The footage shows her looking pale and thinner, devoid of her usual smile. Yet, she continued with the performance.

In early November 2008, Celine visited the hospital again, reporting sudden vocal cord spasms severe enough to hinder speech. After a nasal and throat examination, the doctor found inflammation and bacterial infection. On the doctor’s advice, she canceled five shows over the next two weeks.

Despite these setbacks, her "Taking Chances World Tour" in 2008 included 132 shows, breaking attendance records at multiple venues.

How did she maintain her stage presence despite her physical issues? Celine admitted to using medication to ensure she could sing, swallow, and live normally. She increased her dose of tranquilizers from 1 mg to 10 mg, then 20 mg daily. Despite this, the medication’s effectiveness was limited.

Describing her situation, she said, "When you hear the audience chanting ‘Celine,’ and backstage you’re changing, they’re still cheering. My adrenaline spikes, my heart races, and I feel pressured. I think, 'Tonight, my dreams will come true again. I love this feeling.' But then, my vocal cords spasm, my voice sharpens, and the meds wear off."

She kept increasing the dosage, taking up to 90 mg of tranquilizers a day.

But the medication didn’t alleviate her discomfort. In a recent People magazine interview, Celine recalled an incident after 2011: Before a show, she felt the walls closing in, sat down with a juice, thinking it was low blood sugar. When she regained consciousness, she believed only 10 minutes had passed. A staff member told her it had been two hours, and the show had ended.

Reflecting on that night, Celine felt despair and unease, "I was falling, falling, falling."

Even then, she never considered taking a break or leaving the stage.

For Celine, vocal spasms and physical exhaustion were heavy secrets. The show never stopped.

She remained one of the hardest-working female stars on the planet. From March 2011 to June 2019, she performed 427 shows at Caesars Palace in Las Vegas, also participating in the Billboard Music Awards and hosting the "Today Show."

During this period, spasms, vomiting, and stiffness persisted, but no one could explain why. Each doctor's visit ended with a diagnosis of excessive stress and lack of relaxation.

Only those close to her knew the secret. Celine compared hiding her condition to children skating with injuries they don't reveal to avoid being told to stop. "I didn’t want to stop. I wanted to stay on stage."

She stayed on stage, directing the microphone to the audience to let them sing when her voice needed rest, pretending the mic was faulty, or claiming to need a costume change. In the documentary "This Is It," Celine reflects on this secret, repeatedly saying: "The show must go on."

3. Climbing the Ladder's Peak

Celine Dion first felt the magic of the stage at age five.

Growing up in a large family in Quebec, Canada, her father was an accordion player. She was the youngest of 14 siblings, all of whom loved music and often sang folk songs together.

At her brother Michel's wedding that summer, each sibling had prepared a song. Celine wore a blue dress with white flowers and white gloves. Nervous to the point of silence, her mother gently pushed her, "Go on, my little girl, go on." She stepped forward and sang a folk song called "Mamy Blue."

The performance brought her immense joy. She still remembers the light on the ceiling, feeling she could touch the stars while singing, "For the first time in my life, I understood the unforgettable feeling a singer desires, captivating the audience, earning applause, and having her voice heard."

At twelve, with her brother Jacques accompanying and her mother Thérèse writing lyrics, Celine recorded a French song called "Ce n'était qu'un rêve" (It Was Only a Dream). Her brother sent the demo to famed music manager René Angélil, stating, "If you listen, you'll call back immediately."

Indeed, after hearing the demo, René asked to meet Celine. She remembers wearing a lace-trimmed dress for their first meeting, feeling as if she were going to New York. René asked her to sing a bit, giving her a pencil to imagine as a microphone. After she finished, he was in tears. He promised her mother that within five years, he would make Celine a star in French-speaking Canada.

René, having recently parted with a business partner, had limited funds. They rented cheaper nighttime studios, practicing and recording from 10 p.m. to 6 a.m. René even mortgaged his house to fund Celine's debut album, La voix du bon Dieu. The title track became a local hit.

Celine dropped out of school to focus on singing under René's guidance. In 1982, she won "Best Performer" and "Best Song" at the Yamaha World Popular Song Festival in Tokyo, rapidly rising to fame in French-speaking Canada at just 14.

In Paris and Montreal, people recognized her on the streets, seeking autographs. By 18, she had released nine French albums, winning every Canadian music award and gaining international recognition. In a TV interview, she expressed her dream of becoming an international star and singing for a lifetime.

To break into the English market, Celine spent two months intensively learning English. In 1990, she successfully entered the English mainstream market with her album Unison. Critics praised her elegant, unpretentious voice, elevating simple melodies to higher levels.

In 1994, at 26, Celine married René, 26 years her senior. Before their wedding, she told her mother, who opposed René, "I'm not a minor. This is a free country. No one can stop me from loving whoever I want."

In the fall of 1997, before James Cameron's Titanic premiered, composer James Horner approached Celine and René, presenting the song "My Heart Will Go On." Despite her initial reluctance, René convinced her to record it. The song propelled her career to new heights, making her a household name worldwide.

"My Heart Will Go On" helped the Titanic soundtrack sell over 15 million copies globally, winning an Oscar and a Grammy.

Celine wearing the "Heart of the Ocean" necklace at the Oscars. Photo: Internet Rolling Stone magazine named Celine, Mariah Carey, and Whitney Houston as the three most important female singers of the 1990s. Critics called Celine "the Olympic athlete of singing," always reaching for higher peaks. Celine described herself as "standing at the top of the ladder, head in the clouds, looking at sunsets, stars, and rainbows."

She also performed globally, breaking attendance records at major venues. The magic of the stage captivated her deeply.

"On stage, there are no mistakes, only human connections, interactions, and emotions. You may forget lyrics, panic for a moment, but then the audience starts singing." These moments enchanted her.

"I am addicted to the stage. Without it, I cannot survive."

4. "How Can You Be Stressed?"

In 2008, during Celine Dion's world tour, a small incident occurred.

Due to vocal cord discomfort, she visited a female doctor, describing neck tension and vocal cord pain affecting her vocal exercises. The doctor diagnosed stress and inadequate rest.

A nearby nurse jokingly asked, "How can you be stressed?"

This question opened an emotional floodgate for Celine, who raised her voice, "Those five years in Vegas! No rest, rehearsals, new shows, running on treadmills, intense workouts, new costumes, new shoes…"

Her pressures extended beyond this.

In March 1999, during a performance, she felt a lump in René’s neck, later diagnosed as throat cancer. René tearfully held her hand, saying, "I need you." Celine felt the once-strong René had disappeared.

She decided to temporarily retire, accompanying René through treatment, and gave birth to their first son in January 2001, not returning until 2003.

To provide stability for her family, she signed a residency contract with Caesars Palace in Las Vegas, performing nearly 700 shows over five years, starting March 25, 2003. They moved to a nearby $1.2 million house, only 27 km from work.

Each Vegas show required her to sing 23 songs in 100 minutes. Her doctor regularly checked her vocal cords to ensure they were in top condition.

No singer had ever committed to so many annual shows. Initially seen as a risky move, her performances redefined industry standards. After four years and eight months, Celine completed 717 shows, generating $400 million in ticket sales and $100 million in sponsorships and merchandise. She extended her contract for two more years.

People only saw her relentless high-quality performances, impressive ticket sales, and unwavering popularity. But in reality, this was the harsh truth of balancing work and life perfectly.

Celine admitted to feeling constantly tense. Returning home at night, she sometimes opened her mouth in the shower, finding only high-pitched sounds. This worried and unsettled her.

Besides performing, she raised her children, fulfilling her motherly duties. In October 2010, after five miscarriages, she gave birth to twins. During pregnancy and childbirth, she stopped singing, fearing the vibrations might affect her uterus. Four months after giving birth, she resumed her Vegas residency.

This new show was different, featuring a 30-piece orchestra and only 55 seconds for costume changes between songs. Two months before the premiere, she began rehearsals.

Rehearsals started at 9 a.m., and everyone doubted she'd be there that early, but she was. Having barely slept, waking every two hours to breastfeed for 25 minutes, she'd get an hour's rest before feeding again.

Before rehearsals, she'd send her eldest son to school, check his homework and materials, then rush to rehearsals. Despite the exhaustion, René marveled at her voice, "I can't believe she sounds so amazing... I can't believe a woman can perform like this after giving birth to twins and barely sleeping. Her discipline is incredible."

But this came at a cost. Her nerves never relaxed. When her eldest son lost his comfort rabbit on tour, he cried all night. Celine called everyone she knew to help find it. The next morning, when it was found, she wept with relief. Traveling with three children meant packing half a truckload of luggage.

Amidst this, she ignored her own discomfort. Reflecting on this, she told the Today Show host that she should have addressed her health issues earlier but felt she had to hide them to remain a hero to her children.

5. "I Have No Choice"

On January 14, 2016, René succumbed to throat cancer. Celine, in mourning attire, led her three young sons at his funeral at Montreal's Notre-Dame Basilica. Two days later, her brother Daniel Dion also died of cancer.

A little over a month later, a visibly paler Celine returned to the Caesars Palace stage. Midway through singing "All By Myself," she broke down. Before each show, she and René would hold hands for support. Many concert documentaries showed René at the mixing desk, watching Celine. After his death, she requested the mixing desk seat remain empty in his honor.

In 2019, she released her new album Courage, topping the US music charts. Billboard praised her, saying, "This is Dion’s power." That same year, she completed 52 shows on the Courage World Tour and starred in a romantic drama series, Love Again.

Celine Dion seemed unstoppable until her body fully gave out.

On December 9, 2022, she posted a video on her social media, revealing her Stiff-Person Syndrome diagnosis and postponing all 2023 and 2024 tour plans.

The video, filmed at home, showed her in a black dress with gold jewelry. She said, "All I do is sing; it's what I've done all my life, what I love the most. I miss being on stage, performing for you. I always give 100%, but my current condition doesn't allow it. To be ready to meet you again, I have no choice but to focus on my health."

In a French Vogue interview, she spoke of her despair upon diagnosis: "I asked myself, 'Why me? Why is this happening? What did I do? Is it my fault?'"

In the days when she had control, she could record three songs in one night. She maintained a size 2 figure, once rumored to be anorexic. Since she started singing at 12, she envied rock singers who could drink and smoke in bars while she drank water and slept 12 hours to preserve her voice.

Xiaosong Gao once recorded with Celine in LA. She told him, "If you say 'Good,' it's not enough. If you say 'Excellent,' it's not enough. When you’re speechless, that’s when I feel perfect."

Now, she undergoes physical therapy five days a week, along with medication, immunotherapy, and voice therapy. Her doctor jokingly calls it her new full-time job.

Despite this, her condition hasn't improved. Her bathroom sink is lined with colorful pill bottles. She often feels unsteady, experiences joint and nerve pain, and sometimes can't walk unaided.

She hasn't sung in nearly two years. In the documentary, she tries to show Irene how different her voice is now, singing a few lines before breaking down in tears, "It makes me very sad to hear my voice like this."

More cruelly, her condition forbids emotional highs and lows—whether sorrow or joy. The severe spasm recorded in the documentary was triggered by an emotional high.

After long rehabilitation, Celine decided to try recording again. Hearing the first demo, she disliked it, stood up angrily, and went back to the mic for another take.

She finally found a satisfactory state, waving her arms in relief after singing. She then moved to the massage room next door, but spasms struck as soon as she sat down.

After she calmed down, her therapist explained that her happiness had triggered the spasms. Celine showed a subconscious mixture of surprise and sadness, realizing the disease was not only taking control of her body and voice but also her emotions and feelings.

6. The Apple Tree

Years ago, in an interview, Celine Dion said her happiest moments as a singer were not under the spotlight or amidst the audience's applause but during sound checks before a show—moments when she could freely move around the stage, sing barefoot, mimic famous songs, improvise rap with the guitarist and bassist, and try songs she had never sung before.

For her, these moments were as carefree as shopping at Walmart. She was no longer a dazzling star, just an ordinary person who loved singing.

For Irene, the director, Celine’s willingness to show her spasm attacks publicly was a signal, "She is so relaxed and honest, willing to live like an ordinary person." Before filming began, Celine told her to never set limits or ask if something could be filmed, "If you do that, you’ll ruin me."

Because Celine Dion has never compromised.

Irene captured a scene of Celine by the pool, wearing a beautiful green nightgown, listening to Maria Callas. Maria Callas was a favorite of Celine and René. In the documentary, Celine shows a gemstone necklace gifted by René, previously owned by Callas. René hoped the idol's power would always be with his wife. Like Celine, Callas had a beautiful and distinctive voice, but it deteriorated in her later years, and she passed away soon after her singing career ended.

But Celine Dion is not Maria Callas. She never considered giving up, "I still believe I can sing and dance. I always find several ways to cope. That's who I am. If I can’t run, I'll walk. If I can't walk, I'll crawl. But I will never stop. I will never stop."

She is resolute yet subtly anxious. She compares herself to an apple tree, "People line up, and I give them the best apples. I even polish them before giving them away, and they leave with baskets full."

Gradually, "My branches started drooping, becoming crooked. The apples were fewer, but the people kept lining up... I want to sing with joy, without hesitation. I want to sing without obstacles. Maybe I can sing different kinds of songs, but then they have to choose whether they still like me."

On June 21, 2024, the documentary "This Is It: Celine Dion" premiered on Amazon. At the premiere, she received handwritten letters from fans. One fan wrote, "We are waiting for the apple tree, not just the apples."