Three revelations from the documentary that shows Céline Dion’s struggle with ‘rigid person syndrome’

Spoiler alert: This article contains spoilers for the documentary ‘I Am: Céline Dion’.

Famous Canadian singer Céline Dion’s life has changed dramatically in recent years.

The “My Heart Will Go On” singer went from being acclaimed on stages around the world to retreating to her Las Vegas home after being diagnosed with a rare autoimmune disease called “stiff person syndrome.”

The treatment is long and she was forced to cancel all shows scheduled for 2023 and 2024. Since then, she has rarely been seen in public.

The syndrome that afflicts the singer – affecting one person in a million – is incurable and causes muscle stiffness in the torso and limbs, affecting her mobility.

Additionally, it increases sensitivity to stimuli such as noise, touch and emotional distress, which can cause muscle spasms.

Céline Dion, 56, decided to share her story and her difficult path to recovery through an intimate documentary that recently premiered on the Amazon Video platform.

Here are the three most surprising revelations from the film directed by Irene Taylor.

1. MANY REMEDIES

The singer, who has sold more than 250 million records throughout her successful career, reveals that 17 years ago she began to feel the first symptoms of the disease.

“I started having some spasms in my voice. That’s how it all started. I woke up one day and went to have breakfast. After breakfast, my voice got weird. It scared me a little bit,” he said in the documentary.

“I couldn’t do the sound check or prepare enough. And if you don’t prepare enough, you can get hurt. So I was scared, I didn’t know what to do. Now I have a diagnosis: stiff person syndrome,” she adds, her voice breaking.

The artist, who went years without a diagnosis, says that her muscles, tendons and nerves were affected. In 2023, she reached the point where she could no longer walk. “I lost my balance, had difficulty walking, and felt a lot of pain,” she says.

Céline Dion explains that she can breathe normally, her lungs work. The problem, she adds, is “in the front of my lungs, which gets stiff.” That’s why singing is so difficult for her. “It’s very hard for me to hear it[my voice]. And to show it to you… I don’t want people to hear that.”

Due to the increasing difficulties caused by the disease, the singer began to increase the amount of medication. “I needed my instrument. And my instrument wasn’t working. So I started to increase the medication,” she says.

“It was between 80 and 90 milligrams of Diazepam a day. That was just a medication. I don’t want to dramatize, but I could have died. I was taking these medications because I needed to walk. I needed to be able to swallow. I needed the medications to function. One more pill, two more pills, five more pills. It was a lot… But the show had to go on,” he adds.

2. “I CAN’T KEEP LYING…”

Céline Dion admits that one of the hardest things since being diagnosed with the disease is canceling shows. “Doing a show is not hard. The hard part is canceling it,” she says in the documentary.

She confesses that she often had to lie to the public, giving false excuses to explain why she could not perform.

“When I canceled the shows, we had to explain it to the public and to people, by lying,” he says. “I can’t keep lying anymore… From a sinus infection to an ear infection, anything.”

The singer also reveals that on some occasions her voice failed during the show. To hide this, she applied techniques.

“Sometimes, I would point the microphone at the audience and make them sing. I even cheated. I would pretend the microphone wasn’t working,” he says.

In an interview with the BBC last June, the musical star explained that she would occasionally ask the director or backing musicians to tone down certain songs for certain performances.

“I needed to find a way to be on stage,” she said. The audience had no idea of ​​the struggle she was facing behind the scenes.

In the documentary, Dion adds that there were times when she had to stop shows because she couldn’t continue.

They would make a “quick exchange”, but she never came back. “The lie weighs heavily now”, says the artist, visibly emotional.

3. CRISIS EPISODES

One of the most intense moments in the documentary is when it shows the singer suffering a crisis episode.

You can see her receiving treatment as her feet and hands become stiff. It was all recorded.

For people who suffer from “stiff person syndrome,” during a particularly severe episode, the spasms can be so intense that they can barely move.

The therapist asks if she has had any more spasms, and a few seconds later, she realizes that she is about to have a seizure. Dion can barely respond. Her body is completely rigid, lying on a stretcher, and tears are streaming down her face.

The people around her ask her to calm down, to breathe, and tell her that they are all with her. They explain that her brain is overstimulated and that if the spasms continue, they will need to call an ambulance.

But finally, after several minutes of tension, the singer begins to show signs of recovery. “When something like this happens to me, I feel very ashamed. I don’t know how to say it, I don’t like losing control of my body,” says Céline Dion later.

The crisis, she explains, occurred after participating in a recording, something that left her “stimulated”. This frustrates her. “What’s going to happen? I need to feel stimulated to do what I love… I have to get back on stage”, she complains.

In an interview with the BBC in June, she explained that the therapy she is undergoing is to reduce muscle spasms, which could help her return to the stage. “My voice will be rebuilt,” says Céline Dion.

“I’ll be on stage. I don’t know exactly when, but believe me, I’ll shout it from the rooftops.”

In the final moments of the film, the artist – who will live with the disease for the rest of her life – says emotionally that she still sees herself “dancing and singing”. “If I can’t run, I walk. If I can’t walk, I crawl. But I don’t stop,” she says.

The documentary ‘I Am: Céline Dion’ is available in Brazil on Prime Video.

This text was originally published here.