Celine Dion has given her first TV interview since her diagnosis of Stiff Person Syndrome (SPS) in 2022, detailing the toll it’s taken on her life in NBC News’ hourlong special “Celine’s Story” with Hoda Kotb.
In the emotional interview, which aired this evening and will be available to stream on Peacock tomorrow, the singer goes into detail about the struggles she’s faced over the years, from when she first began experiencing symptoms to how a prescription for Valium to deal with them could have been fatal.
She recalls that she was prescribed Valium to cope with her muscle spasms and stiffness before receiving her SPS diagnosis in 2022. Dion, who was taking Valium so she could perform, gradually built a tolerance and at one point was taking 90 milligrams a day — far beyond the maximum recommended dosage of 40 milligrams. “I did not know honestly that it could kill me,” she says. “Ninety milligrams of Valium can kill you, you can stop breathing. And at one point, the thing is that my body got used to it at 20 and 30 and 40 until it went up. And I needed that, it was relaxing my whole body for what, for two weeks, for a month, OK the show must go on. Here we go, I’m fine. But you get used to it, it doesn’t work anymore. More, more, more.”
During the interview, Dion explains that she first started experiencing physical issues while on her 2008 Taking Chances world tour. Over time, she would lower the key of the songs during live shows and when she felt symptoms while performing, she would turn the microphone to the audience to sing for her. “I wanted to be brave, I didn’t want to let anyone down,” she says.
She goes into detail about how her spasms and stiffness would affect her ability to move and sing over the years, and that it progressed to the point that she broke ribs from severe spasms. “It started here,” she says, pointing to her throat. “OK, it’s going to be fine. Then you have a hard time to walk and then you’re blind for two hours and you’re like, what happened? Am I missing something? Did I have a drop in sugar or something? You think of the simple things, not thinking you’re going to die. But at one point, you get narrow and you get into a tunnel and you can have… It looks like seizures, they’re not seizures but you don’t remember everything.”
The singer captures her experience in the upcoming Amazon Prime Video documentary “I Am: Celine Dion,” debuting on June 25. She was already shooting a documentary about her life when she got diagnosed with SPS, which she announced to the world on social media in 2022, and continued filming her journey.
SPS, a rare autoimmune neurological disorder, appears as random episodes and affects one to two in a million people. When asked if she ever wondered why she was unlucky with her diagnosis, she responded, “I could have gone that route and say I have been working so hard on my life and I’ve done everything that the doctors said and I’ve been a good girl. Is it going to take away SPS? Is it going to make me feel better? Is it going to fix anything? What is it going to do for me to question life and say why me, instead of living my life? Well I decided to live my life.”
For fans worried that she may never again perform, Dion sang numerous times and sounded strong near the end of the special, which hinted that a performance may be on the horizon. “I want you to come and see me again,” she shared in a message to those watching. “I would like to invite you to sing with me again. You’ve been my supporters for so many years. Sometimes I’ve thought, maybe they forgot. Well, [I] worry in a way that they realize how much that they’re part of the show, the adrenaline and that’s what we need. I just can’t wait.”