Diagnosed

I never thought I'd write about Céline Dion, but I owe her a debt of thanks.

Last June, she did a media blitz to support the release of I Am: Céline Dion, a documentary film about her diagnosis with Stiff Person Syndrome (SPS). The best of these appearances was her interview with The National’s Adrienne Arsenault, which aired after a headline story about the diagnostic challenges faced by Canadians with rare neurological disorders. The interview was rebroadcast last week and can be viewed on the CBC’s website.

Dion’s interview hit me like a ton of bricks. I knew she had recently been diagnosed with SPS, but I didn’t know it had taken her eighteen years to receive that diagnosis. As she narrated what those years were like and the impact they had on her career, I shivered with recognition. When she described her growing desperation for a diagnosis—“Doc, tell me it’s not between my two eyes”—I burst into tears. She knows, I thought. Céline knows.

The documentary isn’t especially groundbreaking as cinema (as others have observed, it often gets in its own way), but the fly-on-the-wall footage it captures is remarkable given the degree of control that is usually exercised by its subject. A lot of ink has been spilled about one harrowing scene, in which Dion experiences an SPS storm after a frustrated recording session. It’s shocking, yes, and difficult to watch, but it’s not the most important part of the film.

What virtually every reviewer missed about I Am is that the film is a study of a middle-aged woman grappling with the effects of chronic illness on her working life. Her description of the compensatory strategies she uses to produce sound in spite of neck spasms are a revelation to anyone interested in singing as a practice, and her reflections on the nature of the relationship between a diva and her audience are both, well, diva-esque and gently insightful. It’s that relationship that she is most afraid of losing, and along with it a sense of who she is after a lifetime of singular dedication to her craft.

Dion is now 56, the age at which women, even divas, are consigned to a state of quiet disappearance. To retreat from public life due to illness carries an additional risk of complete erasure, and every year that passes without the certainty of a diagnosis increases that risk. She seems to foreground this understanding in I Am by allowing herself to be filmed sans heels or makeup, even as she leads its director on a giddy tour of her enormous wardrobe and shoe collection. They teem with sparkling artifacts of her before life, whose future utility is as yet unknown.

I'm not a professional singer, much less a diva, and I live on a tiny fraction of the income Dion earns in a single day, so our struggles are not the same. But I am newly diagnosed with a rare neurological movement disorder, dystonia, that is a differential diagnosis for SPS—i.e., it can present with similar symptoms and is sometimes mistaken for the other. The reason my own diagnosis finally happened is, in part, because of the coverage Dion’s story received, which gave me both the courage and the language to insist on one more referral. I could now say, “like Céline Dion,” and this made sense to my medical providers in a way that a decade of patient histories, imaging reports and specialist consults did not. Because of her, I don’t have to keep disappearing.

Merci, Céline, and bravo.