Céline Dion: I Will Sing Again

You know her name. Ladies and gentlemen, Celine Dion. Celine Dion. From Caesars Palace, Celine Dion. You know her Canadian success story. My dream is to be international star. And you definitely know that voice. But away from the spotlight. It's like I have a spasm. I was kind of talking like this. The story you didn't know until now. I thought maybe five years ago, six years ago, maybe I'll never sing again. The international superstar battling a disease that is slowly eroding her voice. Celine Dion in conversation with CBC News. Like never before. The years of private anguish. I've been dealing with problems with my health for a long time. And the very public speculation. Oh my God, Celine Dion dead at 54. It did hurt me as a mom. Because my kids, they said, Mom, they say you're dead. Am I dead? And the fans in Canada and around the world who inspire her still. What's the weight of their expectations though? You know, I hope there's one more concert. I hope she sings again. What is the weight of it? Oh, I'll sing again. I'll sing again. That's for sure. Hello everyone. How you doing? Ready? Okay, let's run it. Is the sound man okay? This is the Celine Dion we know and love. The consummate performer. When I meet up with her near her home in Las Vegas, the drive is still there. But this isn't a performance. Thank you very much for saying yes to talk. I really appreciate it. It's such a pleasure to be able to say I want to talk. You're going to hear my voice. Well, your voice has been your conductor, your boss, your whole life. I let my vocal cords lead the way. Because they could. Where are they taking you now? I am taking them now. I am in charge. I'm not 27 years old anymore. I'm not 41 either. I'm 56 and very proud to be. I can tell you that, of course, you don't choose what you want in life. When life strikes you, it imposes things on you, you still have a choice. What am I going to say? I look at myself in the mirror and talk to myself and say, what have I done? Why me? If I ask myself this question today, why is it happening to me? What have I done? I've been a good girl, disciplined. I think I've been a good sister, mother, wife, friend. Is it going to help what's happening to me that I cannot go on stage and do to my own expectation? Of course, when this whole thing started, if you put yourself in my shoes, I didn't have a diagnosis. I was trying to, what, survive through this. I was trying to be brave because all my life I wanted to be the best of me. My dream is to be an international star and to be able to sing all my life. She dreamt of it as a child and then Celine Dion made it all happen. The heavy success of Stardom, world tours sold out crowds. All that changes in 2008 in the middle of her Taking Chances world tour. Likely no one in the audience realizes what's going on. But something is happening to her prized instrument. She has no idea why. At the beginning it was totally something light that would be, I would say spasmodically in the throat. It started in my voice, traveling, on tour. I was in Germany and after breakfast, just like that, I did not see this coming. 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 a show that night. We get an early glimpse she was going through something in this 2010 documentary called Celine Through the Eyes of the World. I don't have a voice. It's weird. It's closing, so I'm really having a hard time right now. Moments after that exchange, she takes the stage. It was kind of like, spasmodically, it's like I have a spasm. And I was kind of talking like this, like it was high. I could go down, but if I were yodeling. Like ice skating, but on the voice. I went to see every ENT around the world. As many shows as I've done, I've seen as many ENT. In this area here, starting here and here, it's starting to hurt a little bit. At one point, I started to sing and feel that my, instead of having my ears muffled, so hearing less, I was hearing more. It would be like, you would give me 10 dBs more in like a, and it would go poof, like full pin, like a lot. And the Eustachian tubes would like, at the end, like open. And it was not functioning properly. It has to do with nerves, it's muscular, it's movement, repetitive. So when I move my eyebrows constantly, it can give you like a, kind of a sinus pressure headache. My main problem is not that I can't do the highs. It's like I'm talking like this, I'm spasming. My eyebrows are spasming, my ears are spasming. I'm telling you, I'm going to flip soon, I tell you. Things started to get more often every day, worse. The body started to get rigid, not flexible, more spasm, more cramping. I was trying to exercise my body as well a little bit. I cannot flex my toe. If I wanted to eat, my hands would spasm. It was something that was very scary for me because I did not know what was going on. Over the course of a decade, Celine keeps going. Performing hundreds of times at her residency here inside the Caesars Palace Coliseum in Las Vegas. A show so successful, many credit it with turning the whole city's economy and reputation around. Behind the scenes though, turbulence. Caring for her husband, Rene, as he coped with cancer then grieving him when he died in 2016. Leaving her with three young children. On stage, Celine is quietly becoming more and more frightened and frustrated. All while the Vegas lights and aspirations keep getting bigger and brighter. My voice was skidding all over the place. So I started to do what I could. I started to find other paths in my throat. Was that the right thing to do? I don't know. It took a while. It took a long time. Because I needed to find ways beyond steam. And beyond gargle. And beyond to Advil. What do you want me to do? The show must go on. And what did you do in those shows? I compensated it. Like I said, a tunnel. I squeezed my vocal cords more. In here you're supposed to relax. It's supposed to be loose. And I started to tense them. I needed to, instead of having... I went... It wasn't that because nothing was coming out. So I tensed it up. I made myself a little tunnel. And I went nasal. And we lowered the keys of songs. We skipped some songs. I'm not doing this one. We'll do this one. Half a key lower. So there was no bulk. There was no muscle. Instead of being really fat. And lying for so many years. I have tonsillitis. A sinus infection. Lying. I've had these things. We get sick too. We're normal people. We get sick too. But that was far from that. I couldn't live with the lie. Because it was lying to myself. Losing everyone around me. You talk about finding a way and a journey. But without being diagnosed. Through this. Because this is 17 years ago. And 10 years later, I'm still not knowing what's going on. And I still go on stage. And I still record my albums. And I'm still fine. And I'm still brave. And I'm still a mother. And I lose my brother and my mom. I had cancer at the same time as my husband. Because I needed to support him. I took a year off to be with him. I wasn't assisting him. I was his nurse for a moment. And 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. It's not the time that I did not allow myself to have that gave me that. The DNA decided that at one point, it's going to happen. But I had to be very brave. Instead of smart. That wasn't my thing. Because one time, I thought. Maybe 5 years ago. 6 years ago. Maybe I'll never sing again. What am I going to do? Because I've been asked that question before. What are you going to do if you lose your voice, if you can't sing? And I was like. It's never something that crosses your heart or mind. Because I've been pristine for 17 years. Struggling and finding myself in a black hole. Black hole. I don't want to look in the black and have false hope. Tell me the truth. Tell me it's over. I'll be fine. Because living in the dark, it's worse than dying. Soon after, Celine gets an answer. A harsh truth. I wasn't ready to say anything before. But I'm ready now. And stuns the world by walking away from the stage. I had to tell my kids. Knowing that they lost already a parent. And they don't know that I'm going to die. Hello everyone. I'm sorry it's taken me so long to reach out to you. And I wasn't ready to say anything before. But I'm ready now. December 2022. Celine posts a video on social media that shocks fans. After 17 years of being in the dark about what was happening to her. Finally an answer. But a brutal one. Recently, I've been diagnosed with a very rare neurological disorder called the stiff person syndrome. Which affects something like one in a million people. All the muscle spasms, stiffness, pain now explained. Celine pulls back from the spotlight to focus on her health and her sons. And finding out how to live with this debilitating disease. She also makes a bold decision. She would let a film crew capture it all. It's not hard to do a show, you know. It's hard to cancel a show. I miss it so much. The people. I miss them. If I can't run, I'll walk. If I can't walk, I'll crawl. The result is a new documentary, I Am Celine Dion. Directed by acclaimed filmmaker Irene Taylor. It is raw, it is personal and it's gutsy. I saw the dog and I want to thank you for the guts it takes to be so open and so transparent in moments that are vulnerable. It's really touching. Sometimes it's a little hard to look at. And I wonder, why did you decide that you were ready to be like that? Well, sometimes it's a process because it was scary for me as well. My goal was obviously to be able to say and hear my voice say that I have SPS. I can look at myself in the mirror and say I have SPS. It won't change anything. I won't help the world. I won't make a difference. And I won't help my kids. And what do I do? Where do I start? And I just don't want to collapse and be in a chair for the rest of my life. And I really wanted to let my fans and my family and my kids know what's happening. Where's Celine? People need to know that I'm alive. My kids need to know what's happening. I want to go back on stage. I need to know if I can. They need to know that I love them and I miss them. Well, I feel like we can see it. Like Canadians, for example, are worried about you because... Yeah, no, you're the best of us. No, because first of all, not Canadians, but I mean the world said to the world that I'm dead. Celine Dion dead at 54. What? She died? Celine Dion died. Oh my God. Celine Dion dead at 54. No. Yeah. But it did hurt me as a mom because my kids, they're old enough to have their iPads and their iPhones and they look and they said, Mom, they say you're dead. But, well, I said, take a look at... I'm alive. Am I dead? Don't believe everything you hear or you see. But I had to tell my kids, knowing that they lost already a parent. My kids are going to see me having a crisis and they don't know that I'm going to die. It's the reason why I took Irene Taylor with her team to come and come into our home. First, because I was diagnosed. I was still struggling, but I was seeing hope. I was seeing the light. I could see myself on stage, let's say. And we explained to my kids and make a long story shorter. She came with her team and I said, I don't want you to dramatize or cover it up or I'm letting you in. I need the world to know where have I been? I said, what's happening? It's going to help me, my family, my kids, and my fans deserve to know what's happening. This is not a joke. And I'm not dead. And I trusted them enough to do so. Don't ask me. Capture it. Just capture it. And what the film crew captured is intimate and haunting. What did you learn that you didn't see coming? How sick she was. I did not fathom how sick she was. What the filmmaker witnessed behind closed doors. I have to find water somewhere. You've never seen Celine Dion like this before. A woman seemingly isolated, at home, and learning to live in a body sometimes turning on her. Documentary filmmaker Irene Taylor spent more than a year immersed in Celine's world. She says she really didn't know what to expect, but got an intimate understanding the moment she saw Celine. Celine, the first day I showed up, she had a beautiful pressed white shirt on and not a lick of makeup on her face. Her hair pulled in a bun. Very simple. And it was very evident right away. We could tell her story, warts and all, so to speak. And I think that she had been living at home for a year or so already, so she was really easing in. And it wasn't necessarily pleasant. And I think I just met her at this extraordinary time in her life where she was ready to be very vulnerable and very open. But I don't know how much more intimate you can get than what you got. The rawness of it, the vulnerability that she shows you. I mean, everything from the no makeup to the most vulnerable moments where she's very clearly in pain. If that surprised me as a viewer, did it surprise you as a filmmaker? Absolutely. I mean, there's a moment in the film and, you know, viewers will know it when they see it, but it doesn't sneak up on you. It just hits you at 60 miles an hour. And just like it hits her every time it happens. And as a storyteller, it was really hard to know if I should keep filming. But the honest answer is did not want to turn the camera off because I thought this is where it all begins. This is the essence of everything this film is about. What did you learn that you didn't see coming? How sick she was. I did not fathom how sick she was. And it was very hard to see because I could see how much she was afraid to tell people about it. But she decided, Irene, when you're in, you're in. You just follow me. And if I need to stop you, I'll stop you. So did she ever stop you? Never. They paid a lot of money around the world to come and see our shows. 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 have apples for them. Irene talked about going to meet you and walking in and you've got a crisp white shirt and not a lick of makeup. Was that a decision where you're like, I am going to just be me at that moment of my life? What was makeup? What was dressing up? And then at one point, I'm near my sink, and I look at myself in the mirror, and I see the cameraman behind me, and I'm about to take my medicine. And I used to hide the truth before that line because I didn't know what was happening to me. So when I look at myself in trying to get my pills, and I saw the camera looking at me, and I was like, you let them in. You're not trying to be brave. It's not about makeup. It's not about a performance. It's about Hoya. Ouch. Easy when you grab that healed sword. Who she is is one of the exceedingly unlucky souls to be hit with the lightning strike of stiff person syndrome. And now all the things that have made Celine, Celine hurt her. Crowds, lights, noise, emotion. You're describing everything that has fueled Celine Dion's identity that makes her happy. Even an emotional trigger, even if it's positive, can sometimes cause those muscle spasms. The triggers and the treatments. We speak with Celine's doctor next. This is what it can be like to live with stiff person syndrome. People have documented their own struggles with the incurable condition in videos posted online, showing what happens when they try to do ordinary things like making dinner. And we have to warn you, some of these videos are hard to watch. This is also Celine Dion's reality. Broken ribs from muscle spasms and seizures so severe she's needed paramedics, and not just once. Dr. Amanda Picant is working with Celine to manage and treat her illness. She's one of the world's leading specialists in the autoimmune neurological disorder, and what she's learning is surprising. When you hear Celine talk about being in a crisis, what is mechanically happening in her body? Yeah, so stiff person syndrome, 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. So if you're like curling your arm like this, this muscle contracts. This contracts and your tricep will relax. But if you are in a stiff person syndrome crisis, everything's contracting. So you can't control that spasm. And what's the risk to you? I mean, it sounds very painful, clearly, but what is the risk? So it's painful when your muscles are not coordinated properly. You're not going to be able to walk depending on the muscle that's involved. If you have spasms in the chest, in the back, you might have problems breathing, swallowing. If someone is walking down the street and the muscles contract, I would imagine the risk of a fall is huge. Yes, yes, we can definitely see falls and we worry about injuries from falls. And patients with this disorder do have a very extreme fear of falling because of that pull on the muscle and the anxiety that we can see with the disease. And do you have a sense of what the triggers are for it? So with the muscle spasms, we see various things that can trigger these muscle spasms. Sometimes they can occur without triggers. The triggers that we do see are emotional stress. It could be a positive stress. It could be a negative stress. Other triggers tend to be areas that are very crowded. We can see it with lights, with noise. So things that stimulate the nervous system. Crowds, lights, noise, emotion, you're describing everything that has fueled Celine Dion's identity. Yeah. That makes her happy. Yeah. It's cruel. Yeah. Do you, in listening to Celine talk about trying medicines, what medicines can you use to give people some relief? Yeah, so there's two general approaches in stepperson syndrome. We use immune therapies. This is a autoimmune neurologic disorder. So we use immune therapies that suppress or modulate the immune system to change kind of that underlying driver of the disease. And then we also use symptomatic therapies. Those are your muscle relaxers, your antispasmodic agents to help with those symptoms. And then there's also non-pharmacologic things like physical therapy, hydrotherapy. So doing physical therapy in the pool, massage, those types of things. So it can be managed. Yes. Because people who will watch this documentary, people who will watch Celine Dion will possibly be afraid that you're looking at something that's going to kill her. Yeah. So this disease is a tough disease because we don't have a cure. But I tell my patients, think about it like diabetes. We don't have a cure for diabetes, but we can manage diabetes with medications. And that's what we're doing with this autoimmune disease. We can manage it with immune therapies, with these symptomatic therapies. Do you think it's really one in a million or do you think it's more than that because people haven't got a clue what's going on when they get some of the initial spasms? So it's always quoted as one in a million, but we're looking at two and about 100,000. That is a huge difference. Yes. Ouch. Easy when you grab that healed sword. I want to be good. You are good. Think about where you were two and a half months ago. Think about where you were in November. I don't want to think about that. Exactly. I want that motion. There you go. Better. Good. Better or good? It's better. No. What can I do to make it like... So, move this foot slightly in. Right here. Good. So turn on your hips. There is the pain of physio and then there is the catastrophic concern of full body spasms and seizures that are shocking, agonizing and have threatened her life. At times, to cope, she's taken as much as 90 milligrams of Valium to get through shows and that alone could have killed her. How much does this hurt physically? I ask that only because to watch you struggle is to sort of vicariously feel your pain because you look like you're in agony. I don't think people understand enough about this syndrome to get it. I don't think so either. I have to agree with you. That's why I want to be part of the research and to raise awareness. Because when you get in spasms so much, well, you don't remember everything. It can last a moment. It can last a few hours. You can break ribs because of the twisting in the spasm. It's not just like a spasm in the calf in the middle of the night. It's pretty painful. And you don't remember everything which is between you and me. For me, it's okay that I don't remember everything as long as my kids and I, we train with my kids. They know what to do. We have panic buttons. They know who to call. One calls. 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 diagnosis. The 13, the team that I have around me, we practice. Because I don't want them to be scared. I don't want them to be scared. Even as Celine balances motherhood and her illness, she continues to face the expectations of fans around the world and the pressure, few of us can understand, to not disappoint. But then they will say, ah, you know, I hope there's one more concert. I hope she sings again. What is the word? Well, I'll sing again. I'll sing again. That's for sure. Celine Dion has spent most of her life in the public eye but has made few appearances since her diagnosis. And when she does, it tends to be news. We leave you with some good news for fans of superstar Celine Dion. Showing up at hockey games with her sons. Squeeze in. Let's not be shy. You smell great, so. Appearing at the Grammys. Dancing and soaking in a Rolling Stones concert. With her own tours cancelled, fans look at every appearance as a sign. Hi. Honestly, I can't wait to go back and do this again. Because you have to understand that where I am today, I did not walk alone. My family. My music family in the industry. My kids. My fans. I miss that. I can sing and just keep the mic for myself. And I will be very happy. I can take a pencil and I will be happy and pretend it is a microphone. But when I see them, this energy of adrenaline, does that feed you? Because I watched you at the Grammys. And watched you rocking out to the Stones. Watched you at a Habs game. And you see people getting excited. That looks like so much fun. It looks like she is having so much fun. Because they give me the adrenaline. Adrenaline is the biggest drug that you cannot buy. It helped when I went on stage. And I realized many, many years ago that the adrenaline, that people would laugh with me, get on the edge of their seats. And they were like... And I'm like, I feel like it's more than singing with them. When they sing with me, it's my gift. It's a gift that they offer me. What's the weight of their expectations though? I feel like people, on the one hand, really want the best for you physically. But then they will say, I hope there is 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 of love 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. I have to say that I expect a lot from me because it makes me happy to be able to go everywhere and have a good time. But all through these years, when you don't know what's going on, you die a little bit. And when they give you a diagnosis, the burden and the weight on your shoulders, and also knowing that I didn't want my kids to be scared that, are we going to lose our mom too? I was holding on to chairs and tables. I was barely walking. It was pretty hard. I mean, I've been, I don't want to say a prisoner of myself, but in a way, kind of. I couldn't go outside and people say, aren't you supposed to be on stage? 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 had the right to come to me and say, hey. To have this conversation with Celine Dion is to see a woman both relieved that she finally knows what's been happening, but bursting for it not to be so. And working, always working to be stronger, to give her kids comfort. I'm so sorry you're going through this. It feels unspeakably cruel for this to be happening to you. I appreciate very much your kind words, but I just want you to know that sometimes in life there's no explanation for what happens to people. A lot of people suffer from different kinds of things. Babies with cancer, for example. The best way for me to go through this is that there's a reason why it's happening to me. Because I have all of you, I have access to speak and to show that these conditions that are rare, by doing that, if it helps me, which I know it does, if I can save one person, by being part of the raising funds and awareness, if I can help, I can go through this. And I'll see you soon, because I'm working really, really, really hard in rehabilitation. And I can't wait to go back on stage, because this is where I have to be. Well, people will be waiting, and they will take any version of Celine Dion, I think. Any version. Thank you so much. Thank you so, so much.