While Crankenstein was at a speaking engagement this evening, educating a group of pediatricians about something-or-other, I was feigning interest in Muriel’s favorite squeak toy, a stuffed fox that I dutifully try to steal from her several times a day so she can courageously defend it. Normally I’d write or work on miniatures in Crankenstein’s absence, but there were still household chores to finish and I knew none of it would be done quickly — I’d been dragging my left leg around all day, my neck and facial muscles wouldn’t relax, and either food or pills were stuck in my upper chest again, an annoying and mildly alarming sensation.
Rather than try to focus on something I’d have to abandon every so often anyway in order to head outside and relocate the sprinkler, I looked for a movie to watch.* A documentary would be easier to stop and start than a narrative film, so I opened Amazon Prime (which generally has a better selection of non-salacious documentaries than Netflix or Hulu) and front and center on its homepage was I Am: Celine Dion. Earlier this week I’d seen a confusing headline about the movie, one that mentioned footage of her having a seizure.
Her condition, stiff-person syndrome (or SPS), is not one that causes seizures, but rather spasms, so I figured there was a 98% chance the author was mistaken and a 2% chance Dion was a kook. It struck me as unlikely that someone so polished would allow herself to be recorded malingering, like Kathleen Hanna in Punk Singer, or bravely battling, er, fibromyalgia, as in Gaga: Five Foot Two. Curious, then, what she had in store for us, I hit the play button and found something closer to Still: A Michael J. Fox Movie in its humor and lack of vanity.
The seizure confusion has a simple explanation: she indeed has a spasm episode (or crisis, as her doctor calls it), and someone present for it mistakenly calls it a seizure. While I could’ve done without a title card reading “This film contains powerful scenes of medical trauma,” I Am: Celine Dion will be quite relatable to many viewers with neurological conditions, particularly those with movement disorders, even if none of us ever limp around palatial climate-controlled warehouses to visit our old gowns and shoes.**
Dion isn’t someone whose music I follow, and if you recognized the title of this post as a lyric from “Tell Him,” her strangely hilarious duet with Barbra Streisand, you’re probably either someone who has seen me naked or an elderly gay man whose Streisand obsession puts you at high risk of collecting creepy porcelain dolls. But I suppose I’ll call myself a Dion fan now, on the strength of her personal style (I loved the blink-and-you’ll-miss-it perfume moment and the way she still summons the strength now and then to dress dramatically while housebound) and willingness to sacrifice her privacy to raise awareness of her rare condition.
* Occasionally I turn off the lights and watch a horror movie when Crankenstein’s gone, since she doesn’t enjoy such things. This backfired one night when she returned home earlier than expected, near Hereditary’s climax, and was spooked anyway. Oddly, though, it was Rear Window, a mere suspenser, that scared her the most of anything we’ve watched together. There came a moment when she yelped for me to turn on the lights, but I couldn’t rise from the couch because she was clutching me like a life preserver.
** Dion’s face seems masked at times, though overall more capable of expression than someone with hypomimia. I appreciated that she was at her most animated when discussing her love of shoes.