Article content

She is Céline Dion, and she’s coming back.

The big takeaway from the Québécois pop superstar’s deeply moving NBC-TV special that aired Tuesday evening is that Dion is not going to let anything stop her from singing, not even a terribly debilitating neurological disorder.

“I’m going to go back onstage, even if I have to crawl,” Dion said in an exclusive interview with Hoda Kotb from the Today show. “Even if I have to talk with my hands. I will. I will. I am Céline Dion, because today my voice will be heard for the first time, not just because I have to, or because I need to, it’s because I want to. And I miss it.”

Article content

In December 2022, Dion announced that she was suffering from stiff person syndrome, a rare auto-immune disorder that causes muscle stiffness and spasms. Dion revealed in the interview that some of those spasms were so intense that they resulted in broken ribs.

I Am: Céline Dion, a new documentary about her struggle with stiff person syndrome, will première on Amazon Prime on June 25.

One of the revelations on the NBC special was that Dion first began feeling the effects of stiff person syndrome in 2008 during her Taking Chances world tour. At first she thought it was just a vocal chord problem but eventually realized it was much more serious. At the same time, she was having to deal with husband René Angélil’s health problems, which made it harder for her to focus on her own illness. Angélil died of throat cancer in 2016.

“My husband was fighting for his own life,” Dion said. “I had to raise my kids. I had to hide. I had to try to be a hero, feeling my body leaving me, holding on to my own dreams. And lying … the burden for me was too much. Lying to the people who got me to where I am today. I could not do it any more.”

Article content

Watching this emotional interview, you are reminded of something many of us have known for years — Dion is the real deal, that most unusual of global stars, someone who’s incapable of faking it. She calls it like it is, and that’s so refreshing in a world over-populated with celebrities who say whatever it takes to keep the brand alive. Imagine. She couldn’t lie to her fans.

She also revealed that she was taking dangerous amounts of valium to try to keep performing while suffering from the illness.

“I did not know honestly that it could kill me,” Dion said. “I would take, for example, before a performance 20 milligrams of valium and just walking from my dressing room to backstage it was gone already.”

To which Kotb added: “Oh wow, so your body just got that used to it.”

“Correct,” Dion replied.

Dion said she was taking as much as 90 milligrams of valium a day. The Mayo Clinic recommends that an adult take a maximum of 40 milligrams a day to deal with muscle spasms.

“Ninety milligrams of valium can kill you, you can stop breathing,” Dion said. “And at one point my body got used to it at 20 and 30 and 40 until it went up, and I needed that… But then you get used to it. It doesn’t work any more.”

Article content

She managed to wean herself off of the drugs, though even that was dangerous, and she needed the help of her doctors.

“Because when you taper (off from) these drugs, you can die as well,” Dion said.

But the impact of still person syndrome just got worse.

“I was wobbling. I had to hold on to your chairs, tables,” she said.

The problem was that she didn’t still didn’t know what was wrong with her. When in 2022 she finally discovered what the illness was that had been causing so much pain for so many years, it was actually a relief. And she wasn’t about to give up just because she faced such a huge health challenge.

Kotb asked her if she ever wondered, “Why me?”

“I could have gone that route and said, ‘I’ve been working so hard all my life and I’ve done everything the doctors said. And I’ve been a good girl.’ Is it going to take away SPS (stiff person syndrome)? Is it going to make me feel better? Is it going to fix anything? What is it going to do to question life and say ‘why me’? Instead of living my life. Well I decided to live my life.”

The title track of her 2019 album Courage included the verse: “Courage don’t you dare fail me now / I’m staring in the face of something new / ’cause it’s not easy when you’re not with me.”

At the time, it seemed to be about the death of her husband. Today, knowing she was already grappling with this draining illness, the words take on a whole new meaning.

[email protected]

twitter.com/brendanshowbiz

Article content

Article content