I Am Celine Dion (And I'm Not Scared)
Superstar tells the truth of her horrifying illness in a stark and sometimes frightening new documentary directed by Irene Taylor
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With I Am Celine Dion on Prime Video, the eponymous singer and her director Irene Taylor have changed the superstar documentary genre. This is not hyperbole, exaggeration or an attempt to get a sponsorship deal out of Jeff Bezos. Because while we have seen superstars open up about the emotional turmoil they have faced what we have never seen before is the physical effect on a superstar of a frightening medical condition filmed so graphically.
We all know Celine Dion as the Queen of Power Ballads®, the Vegas resident and the woman whose image is so completely and perfectly attended to. When you watch this film look closely at the clips of her Vegas residency when she is wearing gold brocade jacket and pants. Look at how voluminous her hair is, study the unbelievably perfect make up and the way that she can lick her lips without affecting the sheen of her lipgloss. She is an incredible artist presented as a work of art.
The woman we don’t know and have never seen is the Celine Dion who appears in this film sans maquillage. The woman with the pores and broken veins in her face, the lines etched into skin around her neck and the greying hair. In other words we see the superstar as a regular person - one of us.
In films famous women are usually made up to look like they’re not made up and if, in a movie, we should ever see a woman looking less than perfect it is for effect. She looks real because there is something wrong with her; she is either the drug addict, the poor housewife or desperate victim.
By placing her 56 year old, imperfect features in this film Celine Dion sends a huge and courageous message which she magnifies by explaining exactly how her above mentioned gold costume was put together: Celine Dion as the global superstar is Celine Dion the woman PLUS the work of many people.
The film’s main focus is Dion’s horrible health issues. She has been diagnosed with Stiff Person Syndrome,(SPS) a progressive neurological condition that affects one in a million people and in which the brain causes joints and muscles to spasm and lock in position but does not send the message for them to unlock. In the opening scene we see Dion locked in a foetal position on the floor of a Vegas hotel being lifted up onto a stretcher by emergency personnel. It looks like living rigor mortis and is extremely frightening to witness.
For many years there have been stories about Dion cancelling concerts or postponing appearances because of vague health issues. It turns out that for at least 17 years she had been unknowingly suffering from the early signs of SPS. She would wake up with her vocal cords seemingly tuned differently and she could not always get them back to where she needed them.
Sometimes her voice would crack during a show and she learnt to tap her microphone as if it were faulty or point it at the crowd so they could singalong. There was no way that she could tell the truth about what was happening to her because she had no answer or idea what was causing spasms in her throat and then other parts of her body. In an interview with NBC, Dion said that her spasms have been powerful enough to break her ribs. The thought of our own body using its strength to break its own bones is like something from a demented horror story that plays into a deep seated human fear about satanic possession and loss of control.
I can remember reading stories that mocked Celine Dion for not speaking except for when she was onstage or for suffering with unspecified medical conditions that were always put in inverted commas as if the symptoms were not real.
I thought she might have been angry at having been misunderstood and about having been branded a ‘diva’ in the press. However, there was no anger, there was not even any mention of the press. Instead there was sadness and a sense of having let down her audiences as well as a feeling that she, personally, had failed because she had to keep inventing stories to explain her inability to sing. But it takes a lot of work to be Celine Dion and you can’t do that work if you feel like you are being strangled.
There are two connected elements that give this film such power. The first is the choice of award winning documentary film maker Irene Taylor as director. Taylor is renowned as someone who makes serious films about subjects as varied as eradicating polio, teenage murderers and sexual abuse scandals. She is not known for supervising preening superstar hagiographies. The second element is Celine Dion’s own desire to tell the truth in her own words and, in fact, insisting that her’s be the only voice heard on the film which Taylor, the Director, described as a gift. There are no talking head random celebs reading autocue speeches about how much they love Celine Dion, there are no former managers, producers or boyfriends recounting anodyne tales of earlier days. There is Celine Dion telling us an uncomfortable truth which is why it is so necessary to have a director, like Taylor who is dedicated to finding and telling the truth. It is also remarkable that Celine Dion’s record label, Sony Music, co-produced this film in all its brutal glory.
We learn as children that we should not be afraid of telling the truth. As we grow up we recognise that there are ways of being truthful that help us to get through our days in the least painful way possible. When people become famous the truth becomes something to be sculpted, polished and refined. It becomes something is created rather than communicated. A strategy is built around what ‘facts’ make it into stories and a narrative is developed which is told to the audience in place of reality.
Celine Dion has told stories and has created truths to explain why she has cancelled shows and tours. With I Am Celine Dion, the singer and the director have worked together to remove the varnish, to banish the artifice and to slam our faces into the ice cold water of truth.
In the last 15 minutes of the film we learn that the emotional stimulation of singing can trigger physical spasms. We see Dion in a recording studio gently attempting to sing. She is frustrated because her voice is not where she remembers it being so she keeps pushing and trying other coping mechanisms in order to deliver. Years ago she was taking up to 90mg of valium a day in order to be able to sing but now she has physical therapy, IV immunoglobulins and her own extraordinary mental power.
The effort required to sing this song takes her to her limit. She experiences a spasm in her foot and her physical therapist is on hand to massage her and help relieve the pain. However, the spasm spreads and within minutes she is in a complete seizure with two therapists holding onto her, calming her and giving her nasal spray to keep her airways clear. She moans and whines like a dreaming dog, she dribbles and weeps and the camera remains on her, filming the global icon at her lowest physical and emotional point. The thing that she loves has brought her to this state, she is minutes away from being attended to by emergency doctors when the condition slowly releases her.
Director Taylor says that the whole episode lasted 40 minutes but was cut down to five in the final movie. I can’t and don’t want to imagine the fear, pain and dread that a 40 minute seizure would bring. But Dion wanted this in the movie.
Irene Taylor described it as “a horrifying personal experience” and says “I have never been in a situation where I felt like someone might die in front of me. My director of photography did not flinch. He saw I was trying to be a first responder, having my human response, but if anything was going to help her, I was not the person to do it. Her doctor was on the phone, her security guard was making sure she didn’t fall off the table and her therapist was there.
“It was profound, just how everyone did their job – and I realised, ‘I am also doing mine.’ At this point, I’d been filming for months. And she had said, ‘Don’t ever ask if you can film something, because if you do that, it ruins it for me.’ She was only semi-conscious. I knew this would be very safeguarded, so I wanted to have the choice to put it in the film.” When Taylor showed her the final cut of the film, Dion said: “Do not cut that scene down – if anything, you can add to it.”
You might have thought that Celine Dion was a manufactured, airbrushed and insincere superstar experience - that she was ‘Celine Dion’. What I Am Celine Dion demonstrates is that she is a woman who has worked extremely hard to achieve success, a professional who attends to every detail because her audience deserve it and, above all, a courageous woman prepared to show the world what she looks like at her worst. This is not the normal behaviour of superstars but Celine Dion is not a normal superstar as Taylor says “She was so disarmed and so open, willing to look like an everyday person living her life. She was not going to censor herself.” And we, as an audience, have benefitted hugely from Celine Dion’s openness.
I Am Celine Dion is streaming on Prime Video
Thank you for reading The JasonWard Creative Substack . I really appreciate your time spent here and invite you to support my work by taking out a subscription. A paid subscription gives you access to exclusive content plus the entire archive of over 100 articles, reviews, interviews, podcasts and playlists all full of creative insight designed to help you develop your creative projects and practise.