Celine Dion fell to the ground amid battle with stiff person syndrome (Exclusive)

Celine Dion felt the walls closing in.

As she headed to a pre-show fan meeting, “all of a sudden I started to feel the hallway getting narrower and narrower,” she exclusively recalled to PEOPLE in her latest cover story about the terrifying experience that occurred during his second concert residency at Caesars Palace. , which attracted more than two million fans during its eight-year run, from 2011 to 2019. “I’m hanging on the wall and I’m like, ‘What’s going on?'”

The superstar sat for a while, assumed she had low blood sugar and drank some orange juice. Then, as she had done all her life, she insisted that the show go on.

“I said, ‘People have been waiting!'” recalls Dion, revealing the last years of her life – during which she rarely left her home due to her ongoing battle with person syndrome. stiff – in a new eye-opening revelation. documentary, I am: Celine Dion (broadcast worldwide June 25 on Prime Video).

But what seemed like ten minutes to the singer was actually two hours: “They said: ‘Céline, the show has been canceled. People have left.'”

The “hole” in her memory, as Dion, 56, described it to PEOPLE during a Zoom call in early June from her Las Vegas home, was just one of many mysterious and growing symptoms. more concerning issues that she began to struggle with privately in the mid-2000s.

While recording multiple albums and completing back-to-back sold-out tours and residencies, the five-time Grammy winner did everything she could to overcome muscle spasms in her throat and feet, difficulty breathing and walking, vision problems and, most of the time. severely, “crisis” episodes during which her body became stiff as a board as she endured excruciating pain.

“I was going down, down, down. It took my whole life. But it’s like my kids were rollerblading, for example, and one of their ankles hurt. They don’t want to tell me because I’m going “Well, take a break from roller skating,” she explains why she was hesitant to delve deeper into her health issues “I didn’t want to stop. I wanted to stay on stage. I wanted to be brave rather than smart. It was bad.”

After delaying a new residency in late 2021 and postponing, then canceling, a series of European concert dates, Dion revealed in a tearful December 2022 Instagram video that she had been diagnosed with SPS, an autoimmune disease and rare and progressive neurological disorder that can cause muscle damage. rigidity, mobility problems, painful spasms and shortness of breath.

“While people were holding onto their tickets, I was holding onto my dear life,” she says.

To read more about Celine Dion’s fight to return to the stage after her stiff person syndrome diagnosis, how she stays strong for her sons, and raising awareness with a revealing new documentary, pick up the latest issue from PEOPLE, on newsstands Friday, June 14. .

When Academy Award-nominated director Irene Taylor first signed on to direct I am: Celine Dion, she had expected to follow the star as she prepared for a world tour. Taylor learned of Dion’s diagnosis in August 2022 during pre-production, and Dion still allowed her to let the cameras roll.

“Even though it involved her suffering, like physical pain or emotional anguish, she didn’t ask me to stop filming. She let me know that she trusted me. And I trusted her because I could tell she wasn’t trying to hide anything from me,” says Taylor, who made two documentaries about her family’s journey through deafness in 2007. Listen and now and 2019 Moonlight Sonata: Deafness in three movements.

“I know the sacredness of family intimacy. I know the sacredness of bodily intimacy. And yet, I truly believe in my artistic heart that the more someone lets me in, the more I want to share that.” , Taylor continues. “What happens in this film is truly extraordinary and could give people a new perspective on a very little-known disease.”

Dion adds, “I hope this gives people strength. A lot of people go through things alone for many, many years.”

After 17 years of putting aside – and overcoming – her physical difficulties, Dion has been fueled by the love she has for her and her late husband René Angélil’s three sons, René-Charles, 23, and twins Nelson and Eddy, 13, to finally prioritize his health.

“My vocal cords used to guide me, and now I can’t even just talk to them. I could barely walk and I was missing a lot of things. life“, she said. “My children started to notice it. I was like, OK, they already lost a parent. I don’t want them to be afraid.”

Although there is currently no cure, Dion says her diagnosis has brought relief to her family. “I let them know: ‘You lost your father. Mom has an illness, and it’s different. I’m not going to die,'” she recalls, speaking to her children about this illness, which is not not fatal and can be managed with treatment. “Knowing what I’m facing, it takes a lot of weight and burden off me, and it’s done the same for my children.”

The impact of the disease on her ability to sing was particularly cruel for Dion, who knew from a young age that her calling was to perform on stage and who has been loved for decades for her soaring ballads and inimitable stage presence. .

For the past two years, Dion has followed a treatment plan combining medications, immunotherapy, voice therapy and intense physical rehabilitation five days a week.

“The good thing for me is that I love doing all these things,” she says, smiling. Dion is unwaveringly resilient, but Dr. Amanda Piquet, director of the autoimmune neurology program at the University of Colorado and the doctor who diagnosed Dion, emphasizes how painful her treatments are. “It’s a full-time job,” Piquet says. “She’s incredibly determined.”

Dion knows her fans can’t wait to see her back on stage and their support motivates her. Returning to the recording studio for the first time in years was “very, very, very difficult,” she says.

“I don’t want to sound pretentious, but (singing) was never difficult. I was afraid it would be harder. I told myself it wasn’t supposed to be difficult,” she continues.

Yet she refuses to let fear dictate her future. “I have a wonderful coach vocally and physically (my treatment plan) makes such a difference,” she says.

Although there is no timetable for her professional return, Dion says, “We’re talking about putting on a show and I have so many ideas. I can’t wait.”

She also found a new purpose: to both raise awareness about SPS in hopes of finding a cure, and to encourage those who struggle in silence to seek help.

“If I had stayed secret, my house would have become a prison and I would have become a prisoner of my own life,” she says. “Today I live day by day. The fact that I found the strength to communicate my condition to the world makes me very proud. Perhaps my purpose in this life is to help others, and that is is the greatest gift.”