Celine Dion Doc Director on Depicting Singer’s Raw Health Struggle

There’s a moment in the middle of I Am: Celine Dion that will give even the most hardened documentary fan pause.

Dion is on a massage table when she suffers a medical episode.

For seemingly minutes on end, we watch her undergo a seizure that makes the simple act of moving nearly impossible. Dion’s staff tries desperately to get her comfortable while we watch her face in extreme close-up. In real life, the episode would last 40 minutes, one of Dion’s longest spasms stemming from Stiff Person Syndrome, the rare neurological condition she announced she was afflicted with in 2022.

“Everyone in the room was collectively sitting there, kind of waiting to see what happens to Celine Dion as she has no control over her own body,” recalls cinematographer Nick Midwig.

Dion has had outsize power for decades, with towering pop songs that don’t just backdrop our biggest cultural moments — they become part of them. (That influence continues today with the TikTok dance interpretations of Dion’s power ballad “It’s All Coming Back to Me Now.”)

But the megastar also has had an unusually intimate relationship with the public. Fans wept with her at the death of husband René Angélil from cancer in 2016 and cried tears of joy when she stopped her car to listen to a fan serenade her with her song “I Surrender” in a viral video in 2020.

That makes the scenes in June’s I Am: Celine Dion — in which an artist who sometimes recorded three songs in one night is seen rendered immobile — especially crushing. It is as if both a close friend and our cultural memory have been simultaneously stricken by a horrible fate.

“The film is about Celine Dion coming clean about what’s really been happening in her life, not just for the past few years, but for 17 years,” says the movie’s director, Irene Taylor, an Oscar nominee and Peabody winner who has made a specialty of the emotional side of physical challenges. Though the diagnosis came more recently, Dion in fact had SPS — which also affects her voice — for 17 years before she learned of her condition.

“Basically, it was a year of getting off her chest what had been happening and how she had developed all of these coping mechanisms, including just outright lying to people to save shows and to save what she loved, to save what she loved to do,” Taylor tells THR of their time filming.

Throughout her career, Dion’s cultural power has been matched by the physical kind.

For many years between 2011 and 2019, she would play about 70 performances annually at her Last Vegas residency for a few hundred thousand people. (She paused only in the face of Angélil’s illness and eventual death.) Album sales have been similarly eye-popping: She is estimated to have sold more than 200 million records over the course of more than three decades of releasing music. Among her many, many hits are “Beauty and the Beast,” “All by Myself,” “That’s the Way It Is” and, of course, “My Heart Will Go On.”

Taylor wasn’t coming to the documentary as a fan of Dion’s music, but soon after being brought on to the project by the L.A.-based producer Liesl Copland, Taylor found herself entranced. Here was someone who had built her life on public performance, now so willing to be seen not performing. Taylor set about gathering intimate moments and raw behind-the-scenes material.

In fact, Dion told Taylor not to ask for permission to shoot anything. And “she never asked to see [the film],” says Taylor. “Eventually, she did see the film. … If she had asked, I would’ve given her the raw footage to look at if she wanted to see herself in a way she had never seen herself before. But she never asked.”

Midwig, for his part, lensed the documentary in a way that aimed to show Dion less as a pop star and more as an ordinary human being, capturing her in unglamorous poses of vacuuming her floor and making breakfast for her kids.

The vulnerability comes early in the film, when Dion is with her sons (she has a 23-year-old and 14-year-old twins). She tells them that she’s traveled the world but she’s never seen any of it; she has, after all, been too busy performing. Then she breaks down while talking about Angélil, who was her manager before he became her husband.

There’s also a scene in which Dion records “Love Again,” the title song of the 2023 rom-com in which she starred, where she struggles to get through a few lines.

And then comes the massage table scene. It’s a difficult sequence to watch, seeing someone known to be a beacon of power, normally belting out some of the most formidable songs in the history of music, face-down on a table, struggling even to close her eyes as tears stream out of them.

“The first thing you’re doing is calculating, ‘Is she OK, and is my camera inhibiting any type of medical treatment?’ ” Midwig says of shooting the incident. “I quickly realized that in that moment, there was nothing I could physically do as a non-trained medical professional and I wasn’t in the way.”

He says he was struck that the final film includes a moment of the star welcoming the camera.

“They left in the edit her physical therapist asking her, ‘Do you want the cameras to stay?’ And she agreed.” He adds that this happened “as a result of months and months of trust that was built.”

Sadness permeates Dion and those around her as it becomes clear she might never be the performer she once was. She can be seen getting frustrated that her voice can’t seem to get to the places that it used to. But there are also moments of resilience in the instances when her voice does get where she needs it to go.

And there’s the scene at the Paris Olympics opening ceremony in July, when her comeback performance under the Olympic rings on the Eiffel Tower seemed to single-handedly lift up a global audience.

The documentary, Taylor believes, acts as a form of therapy for the singer but also has been beneficial for audience members with a silent disability (a phenomenon Taylor also observed on her docs Hear and Now, a memoirish piece about her deaf parents, and Open Your Eyes, focused on an aging couple living in the Himalayas wanting to regain their sight).

“The film is helping her,” says Taylor of Dion. But it also, she notes, seems to help so many who watch it.

“At every single screening, without fail, someone comes up and tells me, ‘I have an illness, it’s invisible, and people don’t realize I am disabled,’ ” she adds. “There is so much universality in her experience, and I think when you are given an extraordinary moment in documentary filmmaking, it’s a responsibility. If your subject is giving permission for this, it really is something that can take all of us as audience members to the perimeter of what we think we can see. It’s so rare to be in the presence of someone going through that kind of suffering.”