Front Burner - Céline Dion’s struggle with stiff-person syndrome

Episode Date: June 13, 2024

Everyone knows who Céline Dion is. You can’t forget her incredible power ballads, her iconic outfits at the Met Gala or her quirky conversations with journalists and fellow singers alike.But what fans didn’t know for years was Céline was suffering from stiff-person syndrome. It was causing her body to tense up and spasm, making it hard to use her famous vocal chords. She went public with the diagnosis a year and a half ago, and then stepped away from showbiz and the public eye.Now, she’s opening up about her story and how stiff-person syndrome has affected her life in a new documentary. Ahead of its release, we hear from CBC’s Adrienne Arsenault, who got an exclusive interview with Céline and tells us what she learned about Celine’s life and her plans to sing in the future.Help us make Front Burner even better by filling out this audience survey.

In the Dragon's Den, a simple pitch can lead to a life-changing connection. Watch new episodes of Dragon's Den free on CBC Gem. Brought to you in part by National Angel Capital Organization, empowering Canada's entrepreneurs through angel investment and industry connections. This is a CBC Podcast. Hi, I'm Jamie Poisson. Around a decade ago, maybe a little less, there was this phenomenon that happened. Maybe you've heard it called the Selenissance, where people who might have turned their noses up at Celine Dion, at her power ballads, at her melodrama, at her sincerity,

began to realize that actually, unironically, Celine is cool. I don't know if you know this, but we're in the middle of a Celine-a-sance. You should have let me know. I would have dressed appropriately. Suddenly, she was the queen of Paris Fashion Week. She was shimmering on the Met Gala red carpet, draped in silver tassels, crowned in peacock feathers. People were posting supercuts of her most delightfully quirky moments to YouTube and Twitter. How do you do? Who lets a leader?

Who lets a leader? Who let the beast... Drake told her that he wanted to tattoo her face on his chest. You're very iconic. It's very nice to meet you. We love you. I'm like a year away from a Celine Tate, so... What these fans, new and old, didn't know, even as the world heaped love on her, even as she gave it all back,

was that Celine was suffering from something she couldn't explain, that no doctor could either. Something that was causing her body to tense up and spasm and making it hard for her to use the thing that made her famous, her vocal cords. A year and a half ago, she went public with a diagnosis, stiff person syndrome.

I miss you so much. I miss seeing all of you being on the stage, performing for you. performing for you. I always give 100% when I do my shows. But my condition is not allowing me to give you that right now. She stepped away from showbiz and the public eye. Now she's telling her story in a new very raw documentary called I Am Celine Dion. It's not hard to do a show, you know.

It's hard to cancel a show. If somebody sees me have a good time for a moment with my family, and I was supposed to be on stage, and they had a ticket that night, they have the right to come to me and say, hey. Ahead of its release, the CBC's Adrienne Arsenault got an exclusive interview with Celine Dion. And she is here to tell us all about it. Hi, Adrienne. Hey, how are you?

I am great, and I am so glad that you're coming on today and that you have this incredible interview with Celine. I am a huge, huge Celine Dion fan, so this is great. In the intro, I spoke about the Celine-a-sans and it feels like such a stark contrast with how much uh she was secretly suffering behind the scenes for years right years and and so I wonder if you could take me through that and and you know goes it goes all the way back to 2008 yeah it does. And it's interesting because as she was sort of soaring professionally, I mean, she's been soaring since she was 12 years old. But around the early 2000s, she really was doing phenomenally well.

And she said that it was during the Taking Chances World Tour. She was in Germany, I think, when something pretty basic started happening. She woke up one morning. She'd had a rough night, and her voice was hoarse. I mean, all of our voices get hoarse sometimes. Mine is hoarse right now. But the problem she had after she was having breakfast is that she couldn't, her voice was too high. She couldn't bring it down. And I started to feel a spasm, kind of somebody pressing back. So what it does in the vocal cords is that you feel,

well, not well, not normal, the stress, the panic. I started to compensate because I had to take the plane. I had a show that night. And like everybody, you find a million reasons to explain it away. I'm tired. I've done a lot of touring. Maybe I didn't sleep well. Maybe, maybe, maybe. But it stuck with her enough that she now counts that as the start of something that for the next 15, 16 years has knocked on the door more persistently, more aggressively, more frighteningly. And, you know, a problem that refuses to be unacknowledged, if you will. It is barged its way into her life. It's really compelling hearing her trying to describe these, like, mysterious sensations, how she's trying to, like, put into words these frightening, inexplicable

ways that, you know, her body seems to be turning on her, right? Like turning against her. What did she think was happening? Well, I think, you know, firstly, she acknowledged she saw every ENT in the world. You know, wherever she toured, Celine Dion was constantly going to see doctors. As many shows as I've done, I've seen as many ENT. And, you know, incredibly, she's been very open for a very long time. So she, at one point, I think in 2010, did a documentary as well. And you could see the cameras going with her as she goes to an ENT and they stick a probe down her throat and she talks and she sings and they're looking at her vocal cords,

and they're trying to figure out what happened. My main problem is not that I can't do the highs. No, it's letting go. It's like, I'm spasmed. My eyebrows are spasmed. My ear is spasmed. I'm going to flip soon, I tell you. They couldn't see anything.

She had surgery at one point. She had problems with her eustachian tubes. She had surgery at one point. She had problems with her eustachian tubes. She had surgery on those. But it just, nothing was showing up. And it just completely was driving her crazy. Because she's very clear. Her voice has been her boss, her conductor, for her whole life. She's basically gone wherever that instrument wanted to take her.

And then suddenly it went a bit rogue, and she didn't know where it was going or how to rein it in. She describes to you these efforts to modulate her voice, to get around the challenges that she's having. And tell me about that. Well, it was interesting. You know, I asked, I said to her, mechanically, I really don't understand what was happening. And so as we were talking, she kind of put her hands on her throat as if to demonstrate it. She said she was trying to find a new pathway. So she would turn her head to one side and almost open up a different pathway.

I needed to, instead of having, Oh, my love, my darling, how's it going? I went, Oh, my love, my darling. Okay, it was worse than that because nothing was coming out. So I tensed it up. I made myself a little tunnel. And I went nasal. Oh, my love, my darling.

What she was doing is she was finding ways to cover it up. So maybe she'd strike songs from her playlist as time went on. Or she would do this thing. And now that she told me this and now that I know what's happened, I can recall seeing it in images of concerts past where she would tap the microphone and sort of roll her eyes as if to say, this thing isn't working. Or she would hold the microphone out to the audience and have them sing. She always did that because she liked having the audience sing. That's part of her engagement. But we now realize, and she admits that that was part of the

cover-up. And cover-up's a bad word in the sense that it sounds like she knew exactly what was happening and she was, you know, this was some sort of betrayal of the truth. But the truth is, she didn't understand what was happening. It's just that her instrument wasn't performing. And so because the show must go on, she had to find other ways to keep people entertained. And sometimes that meant going to these measures to just get through it. Hi, it's Ramit Sethi here. Brought to you in part by National Angel Capital Organization, empowering Canada's entrepreneurs through angel investment and industry connections. Hi, it's Ramit Sethi here. You may have seen my money show on Netflix. I've been talking about money for 20 years. I've talked to millions of people and I have some startling numbers to share with you.

Did you know that of the people I speak to, 50% of them do not know their own household income. That's not a typo. 50%. That's because money is confusing. In my new book and podcast, Money for Couples, I help you and your partner create a financial vision together. To listen to this podcast, just search for Money for Couples. You know, as she was going through all of this in secret, publicly, she was also going through a lot of personal tragedies, right? Like she was taking care of her husband who was sick with cancer. I remember that. He's got a feeding tube. I have to feed him three times a day. And you did all, you did so much of this yourself. I do this myself. Then his death, the death of her brother, just two days later.

My brother, who passed away of pretty much the same cancer as him, died on Renee's birthday. And I said to myself, for his birthday, my husband came and got my brother. The death of her mother, who was beloved, right, by her. And, you know, meanwhile, she had kids to take care of. And what did all of that mean for her ability to really address what was going on inside her own body, right? When you're always kind of thinking outwards, taking care of other people. taking care of other people. Totally. So when her husband died, you know, she had three little kids. So she had her oldest son, Rene Charles,

and they're twins. Nelson and Eddie were just five. That is a full-time job. She had to handle their grief, her grief, do it publicly in a way. He wanted to die in my arms. Did he? I cannot live with a regret.

But this is something that I do have a tendency to think that I have a regret and I should not. He did not die in my arms. And when we talked about that, she's very passionate and very agitated about this moment in time, because everything was barreling down on her. I was opening my arms for everybody who was crying the death of my husband. So how did you make space for yourself to be sad about what was happening? Good question.

Good question. I couldn't. I couldn't. And I think that is absolutely the truth, that her job was to give her children comfort in that moment. She still says that the reason why she's talking now, her boys are 13, her youngest are 13. He said she wants them to understand exactly what is happening to her, that she's doing the best she can, that she's helping people to understand what

this is about, and that she's going to throw everything she's got at being there for them. This is her priority, very clearly. And so she really, she pushed all that away. But at some point, this disease makes it clear that you cannot, it will not be ignored. Because with stiff person syndrome, incredibly, the very things that fuel Celine Dion, you think about lights, sound, crowds, emotion, good or bad, all of those things we now understand and she now understands are the very things that can trigger the spasms and the sort of spasms that can put you in hospital. So imagine everything that makes you happy will hurt you. Tell me more about this condition, stiff person syndrome. She wasn't actually diagnosed until 2022.

I remember she posted a video about it on social media that really shocked a lot of her fans. But what is this condition? Tell me more about it. Well, it's interesting. I mean, you will sometimes hear a reference to stiff person syndrome being one in a million. I mean, you will sometimes hear a reference to stiff person syndrome being one in a million. Her doctor, Dr. Amanda Paquette, she's quite convinced it's more like two in a hundred thousand. It's a big difference.

It's an autoimmune neurological disorder. We don't understand the underlying pathophysiology. However, what we do understand is there's a dysfunction in the GABA receptor. The GABA receptor is the brakes of your nervous system. So if you can imagine, if you're always on the gas and not pushing on the brakes, you can have your central nervous system firing and causing muscle contractions

that are basically fighting against you. And what happens in it, as best as I can understand from the doctor, is that your muscles tense. If you can imagine, Jamie, that you're curling up your bicep, and it's a big bicep. I know it's a big bicep. It's not. The top muscle, the bicep itself, is contracting.

But the triceps underneath it are relaxing. That's what allows you to do that function of bending your arm. Well, in stiff person syndrome, when there's a spasm, all the muscles contract at once, all of them, the bicep and the tricep. So everything is like stiff as a board and you cannot undo it. And what happens is that the twisting and the spasming of those muscles can be so severe that you can snap your spine. You can break your ribs. This has happened to her. She's broken her ribs. Wow. And she has needed immediate medical intervention, paramedics, because this can threaten your life. And while a spasm is happening to you, is it painful?

I think it's incredibly painful. So when I said to her, you know, when it gets bad, how bad is bad? She said, you know, it's not like when you get a charley horse in the middle of the night and you grab your leg and you think, ah, this is the worst ever. She said, no, no, this is excruciatingly painful. A couple of things she said happens. They can last for a few seconds, a few minutes. They can last for hours, these spasms.

And the twisting, again, it's so severe, it can break your bones. And she's had broken ribs. You know, she's needed medical intervention and paramedics and 911 calls. And these losses to her dignity. And things happen when she's having these spasms that are a lot like seizures. Sometimes there's a little memory loss in the middle of these spasms. And you don't remember everything which is between you and me. You don't remember everything which is between you and me.

For me, it's okay that I don't remember everything. But she knows this is a progressive disorder. So I think there is the pain of understanding that. And then other things start to happen. Her doctor said that many people with stiff person syndrome become a bit agoraphobic. They're afraid to go outside for a whole bunch of reasons. In her case, she said, no, I was afraid to go outside, particularly when she didn't know what was going on and have people say, oh, look at you enjoying your son's soccer game. Shouldn't you be working? Shouldn't you be doing a concert? And

she said, I didn't know what to tell them. But there's also that fear of what happens if I get a spasm and I'm walking down the street and my kids are with me and do they know what to do? And am I going to hit my head and knock myself out and not be able to do anything about it? This is, this fear really takes over. And she said something that I think, it touched me because I'm just trying to imagine a mom trying to deal with this. She drills with her boys. They know what to do. We have panic buttons. They know who to call. One calls. The other one gets the, we all have like through the whole house, a system of if I need to be assisted with medicine, because I have to be medicated with the right medicine for the right diagnose.

They're 13, but the team that I have around me, we practice and then, because I don't want them to be scared. I don't want them to be scared. Kids shouldn't have to do that for their parents. She understands that. You know, and here's this horrific irony of this woman who, for all intents and purposes, has everything. And yet, she's lost a lot,

continues to lose a lot. The things that make her happy also hurt her. So there are all sorts of cruel ironies here. You know, she also has this very personal documentary coming out. And so tell me a little bit more about that. Well, it's coming out at the end of June. I got a chance to go see it at a screening, a private screening in Toronto before we went and had the conversation with Celine in Las Vegas. I'm not sure what I was expecting, but I didn't expect that. I think my jaw was on the ground for a big chunk of it

and I absolutely cried. There is a scene that you'll know it when you see it that is probably one of the most haunting scenes of someone in physical distress or a disease like this that I've ever seen and I can't imagine anything

more difficult to watch if you know somebody who has this stiff person syndrome. She's gutsy in this. She's very gutsy. And the director, Irene Taylor, is a phenomenal director. I asked her what surprised her when she started doing the dog. She said, well, firstly, she didn't know how sick she was. Had no idea. And she wasn't sure what to expect from this working together with her. She basically was with her for roughly a year, watching the ins and outs of taking medicine and being with her kids

and going through physical crises. And the first day she went to see her, Celine throws open the door. She's got a beautiful crisp white shirt on and not a lick of makeup. And for Irene, Irene Taylor, it was really interesting. It was like,

oh, that's okay. I'm, I'm getting, I'm getting the no holds barred version. And that's exactly what she got. And that was, um, I asked Celine about it. And, and she said exactly what she got and that was um i asked

selena about it and and she said you know at that point in my life well what's makeup you know she's she's trying to find a way to survive and sure she likes wearing makeup but she didn't need that at that moment she needed to be real um and she absolutely absolutely was it's was. It's a pretty astonishing thing to watch. If I can't walk, I'll walk. If I can't walk, I'll crawl. I won't stop. In the documentary, she has this very poetic quote. She compares herself to an apple tree. Can you tell me about that? Sure.

Yeah, it is interesting. She says, I feel like, let's say, there's an apple tree. I'm an apple tree. And people are in line, and I give them apples, the best, and I shine them. And they all leave with a basket of apples. And my branches are starting to fall sometimes, get crooked. And those branches are starting to produce a little less apples but there's still as many people in line

i don't want them to wait in line if i don't have apples for them and i think it speaks to this notion that she seems to have been wrestling with the idea that if she can't give them the Celine Dion, you know, the woman of the power notes that they have known and loved for so long, are they going to be okay with maybe not getting any more of her, maybe getting something different from her? And it sounds like that has been an internal conversation that has been raging through her. What's the weight of their expectations though? Because I feel like people on the one hand really want the best for you physically, but then they will say, ah, you know, I hope there's one more concert. I hope she sings again. What is the weight of that? Well, I'll sing again. I'll sing again.

That's for sure. The expectation, they deserve to have an expectation. They pay. I'm 56 years old. And for many, many years, I've done a lot, a lot of shows. We've had a lot of happiness because of the fans, paying shows and buying my records. And they have all the rights to have all the expectation.

But if I may say, my own expectation is probably bigger than what they expect from me. When I present the microphone, it's because they're part of me. I was 12 years old when I met them. I probably miss them more than singing itself. And when you're talking to someone across and even though there's lots of people in the room uh people she works with and lots of crew from from Las Vegas I mean we were alone but we certainly weren't alone in the room right yeah I said to her well people will be

waiting and they will take any version of Celine Dion they can get. Any version at all. You're so kind. Thank you so much. Thank you so, so much. And I think she's still trying to come to terms with that. But no one should ever doubt or underestimate Celine Dion's capacity to work. working right now is getting that instrument to a place where she can feel those crowds again and feel that adrenaline and give back to people. She is working on that every day. I would not be surprised if you saw her in front of a microphone very soon. Okay. Adrienne, thank you so much for this. Oh, my total pleasure. All right.

So you can find Adrian's interview online now on CBC Gem or on The National's YouTube channel. It's called Celine Dion, I Will Sing Again. The documentary, I Am Celine Dion, is premiering on June 25th on Prime Video. That's all for today. I'm Jamie Poisson. Thanks so much for listening. Talk to you tomorrow. For more CBC Podcasts, go to cbc.ca slash podcasts.