'I Am: Celine Dion' director Irene Taylor reflects on the making of the ...

But this, IA: CD’s director Irene Taylor says, is how Dion insisted on being seen.

“I was horrified. I was very uncomfortable. I wasn’t sure if she was breathing for the first few minutes,” Taylor says of the experience filming Dion’s sudden medical emergency, which happened during a recording session.

At this point, Taylor had been filming and following Dion for months, had documented the regular physical therapy sessions and had many conversations with her about the illness which had drastically impacted her life. But this was her frightening firsthand experience seeing what Stiff Person Syndrome (SPS) actually looked like. And what it looked like was a living hell.

“I had headphones on and I was recording sound. I was right next to her and I couldn’t get out of where I was standing because she had people around her,” Taylor says. “I tilted the microphone a little more so that I could try to hear if she was breathing and I couldn’t hear her breathing. I was quite panicked. It was … it was … very difficult.”

Read More: Stiff Person Syndrome: ‘It’s such a cruel condition’

Just as Dion was blessed with that soaring voice, so she was cursed with SPS, an extremely rare autoimmune neurological disorder that affects “one in a million,” as Dion herself says in the documentary.

She kept her diagnosis 17 years ago a tightly-held secret up until two years ago, when she went public in a heart-wrenching video to her fans after her condition worsened, forcing a string of tour and show cancellations. When she went public, Taylor was there behind the scenes filming.

But why was she chosen to be there? While Taylor is an Oscar-nominated, Emmy and Sundance Film Festival Award-winning filmmaker, celebrity documentaries aren’t her usual fare. Before IA: CD she made Moonlight Sonata: Deafness in Three Movements (2019) which followed a deaf boy growing up and the approaching mortality of his deaf grandfather, while 2007′s Hear and Now followed a deaf couple having cochlear implant surgeries at age 65.

“Part of me thought, ‘Why do they want me?’,” she admits. “I haven’t made films about people in the public eye, so I was a little perplexed why they asked me.”

Knowing what we know now about Dion’s condition, Taylor’s filmography made her the perfect choice to helm the project.

“I was certainly honoured and willing to give it a go. I wasn’t sure it would be the right fit for me or my sensibilities. But, once I met Celine and talked with her quite a bit, I realised this could be an opportunity to do a very artful portrait of her. When she decided she felt the same way, I took the chance to do it.”

IA: CD is not your standard authorised celebrity documentary. These are usually heavily curated and crafted to project their subject in the most flattering way possible. In contrast, when Dion walks into the shot for the first time and the camera zooms in we see her sans makeup, granny glasses perched on her nose and a tight bun on her head. A look the 56-year-old megastar keeps for the majority of the documentary.

“Your assessment is fair about authorised biographies. I was also a little concerned about that,” Taylor says. “But I had this gut feeling that it was not going to be your standard music doc profile. I wouldn’t have done it if I thought there wasn’t room for it to be different. Then I found out she was sick.”

It changed everything.

“When I went there, on the very first day that we filmed, Celine was astonishingly open with me, and essentially set up the whole premise of what I realised this film was going to be about, which is that she had been lying for 17 years to pretty much everyone in the world who knows her - and that’s a lot of people. I didn’t call it a lie, she called it a lie. For her to use that kind of language about herself was when I realised making this film was very out of the ordinary. I came home that first day like, ‘Wow, what have I gotten myself into? This is really an extraordinary thing. I had better not mess this up’.”

The result is a documentary without artifice. Dion gave Taylor free rein to film anything, go anywhere and ask any question she liked - bar asking for permission to do any of those things.

“She said, ‘In fact, if you do ask permission, I don’t think I’ll respond well,’” Taylor smiles.

Dion’s illness has dramatically altered her life – taking not just her health and movement but also tragically her voice.

Read More: I Am: Celine Dion: Singer ‘almost died’ during battle with Stiff Person Syndrome

Where she once soared commandingly above swelling orchestras now hitting a simple note is a struggle that takes two days of determined recording sessions. Indeed, it’s the unbridled joy that flows through her after finally nailing it, and by extension briefly conquering her illness, that kickstarts her seizure. As her doctor explains, becoming “overstimulated” is an SPS trigger. A cruel irony for a born performer.

I Am: Celine Dion truly shows you who Celine Dion is. She’s a charismatic storyteller and someone whose art means everything to her. She’s also a determined fighter, doing everything within her power to beat her condition. She’s also funnier and more eccentric than you might expect. Taylor describes her as, “a little kooky,” which is spot on.

“I mean, she loves pets,” Taylor laughs. “She loves guinea pigs.”

Who: Director Irene Taylor

What: The incredibly candid and harrowing documentary I Am: Celine Dion

When: Streaming now on Prime Video