For Céline Dion, the walls seemed to be closing in.
“Suddenly I started to feel the corridor getting narrower and narrower,” she recalls in an exclusive interview with People magazine’s most recent cover story about the terrifying experience that occurred during her second Caesars Palace concert residency, which drew more than two million fans over the course of its eight-year run from 2011 to 2019. The residency held at Caesars Palace was held from 2011 to 2019. “I’m holding onto the wall, and I’m like, ‘What is happening?'”
Assuming that she had experienced a decrease in blood sugar, the celebrity sat for a little period of time and then had an orange juice. She then maintained that the performance must continue, as she has done throughout her whole life.
“I said, ‘The people have been waiting!'” Dion recalls, as she lifts the curtain on the last few years of her life, during which she seldom left her home due to her long battle with stiff-person syndrome. This is revealed in a new documentary titled I Am: Celine Dion, which will be available to watch internationally on Prime Video on June 25.
The singer, however, was surprised to learn that what seemed like ten minutes had really been two hours: “They told me, ‘Céline, the show has been canned.'” There are no people left”.
The “hole” in her memory, which Dion, who is 56 years old, detailed to PEOPLE over a Zoom call at the beginning of June from her home in Las Vegas, was just one of several puzzling and increasingly frightening symptoms that she started quietly struggling with in the middle of the 2000s.
The five-time Grammy winner did everything in her power to power through muscle spasms in her throat and feet, difficulty breathing and walking, vision issues, and, most severely, “crisis” episodes during which her body became stiff as a board as she endured excruciating pain. She did this while she was recording multiple albums and performing back-to-back tours and residencies that were completely sold out.
“My descent was going down, down, and down. It consumed every single moment of my existence. On the other hand, let’s say that one of my children is experiencing discomfort in their ankles when they are rollerblading. They don’t want to tell me because I’m going to say, ‘Well, take a vacation from rollerblading,'” she continues, explaining why she delayed delving more into her health difficulties. “They don’t want to tell me because I’m going to say that.” “I had no intention of stopping. It was my desire to remain onstage. Rather than being intelligent, I want to be fearless. I was wrong to do that.
Dion revealed in a tearful Instagram video that she had been diagnosed with SPS, a rare and progressive autoimmune and neurological disorder that can cause muscle rigidity, mobility issues, painful spasms, and shortness of breath. This came after she had postponed and then cancelled a series of concert dates in Europe. Dion had also delayed a new residency that was scheduled to begin in late 2021.
“While people were holding on to their tickets, I was holding on to my dear life,” she explains to me.
The filmmaker Irene Taylor, who was nominated for an Academy Award, had anticipated that she would be able to accompany the singer as she prepared for a global tour when she first signed on to shoot I Am: Celine Dion. Although Taylor was aware of Dion’s illness in August 2022, Dion continued to let her to continue filming despite the fact that she was aware of the situation.
“Even if it involved her suffering, whether it was physical suffering or emotional anguish, she did not ask me to stop filming,” she said. She made it clear to me that she had faith in me. “And I trusted her because I really could see that she was not trying to hide anything from me,” says Taylor, who has filmed two films chronicling her family’s journey through deafness: Hear and Now, which was released in 2007, and Moonlight Sonata: Deafness in Three Movements, which was released in 2019.
“I am aware of the sensitivity of the privacy of the family. I am aware of the sensitivity of the privacy of the body. When it comes to being an artist, I have a deep-seated conviction that the more someone is willing to allow me in, the more I want to share it with them,” concludes Taylor. “What happens in this film is truly extraordinary, and it might give people a new perspective on a very unknown disease.”
Furthermore, Dion says, “I hope that it gives people strength.” Many individuals have been suffering through difficult times by themselves for a significant number of years.
Dion was finally able to prioritize her health after 17 years of ignoring and enduring her medical challenges. She was motivated to do so by the love she had for her and her late husband René Angélil’s three kids, René-Charles, who is 23 years old, and Nelson and Eddy, who are twins and are 13 years old.
It used to be that my voice chords were the ones that guided me, but now I can’t even merely converse with them. “I was so weak that I could hardly walk, and I was missing out on a lot of living,” she adds. Even my children began to take notice. Okay, I thought to myself, they have already lost a parent. I don’t want them to be afraid of anything.
Despite the fact that there is no treatment at the moment, Dion claims that her diagnosis offered her family some much-needed respite. “I informed them that you may have lost your father. Mom suffers from a disease that is distinct from mine. When she was informing her children about the sickness, which is not deadly and can be treated with treatment, she remembers telling them, “I’m not going to pass away.” the illness is not fatal. “By knowing what I’m dealing with, it takes away a lot of weight and burden, and it did the same for my kids.”
Dion, who realized from a young age that her purpose was to perform and has been cherished for decades for her soaring songs and distinctive stage presence, has been particularly cruelly affected by the condition, which has had an influence on her ability to sing.
Over the course of the last two years, Dion has been adhering to a combined treatment regimen that includes medicine, immunological therapy, voice therapy, and severe physical rehabilitation five days a week.
She smiles and explains, “The good thing that’s on my side is that I love doing all of these things,” demonstrating her enthusiasm. Despite the fact that Dion is unflinchingly strong, Dr. Amanda Piquet, who is the physician who diagnosed Dion and also works as the head of the autoimmune neurology department at the University of Colorado, underlines how difficult her treatments are. “This is a full-time job,” Piquet explains emphatically. “She is incredibly determined.”
The fact that Dion is aware that her admirers are anxious to see her perform again serves as a source of inspiration for her. The experience of going back to the recording studio for the first time in years was “very, very, very challenging,” according to her evaluation.
To avoid coming off as arrogant, I would want to say that singing has never been a challenge for me. I was terrified that it would be more difficult. As she adds, “I was thinking to myself, that is not supposed to be difficult.”
Despite this, she is not going to let fear to determine her destiny. “I have a wonderful coach vocally, and physically [my treatment plan] is making such a difference,” she explains further.
Dion has said that she is considering putting together a performance, and she has a lot of ideas for it. However, there is no specific timetable for her comeback to the professional world. What a relief it is!
On top of that, she has discovered a new purpose, which is to bring attention to SPS in the hopes of discovering a solution for it, as well as to inspire those who are battling in silence to get assistance.
“If I would have just stayed secretly behind, my home would have become a prison, and I would have become a prisoner of my own life,” she explains further. “I am living my life now, one day at a time. The fact that I was able to have the courage to share my situation with the rest of the world is something that fills me with immense pride. Perhaps my mission in this life is to be of assistance to other people, and that would be the most wonderful gift.
