The brain is my wife’s favorite organ, one she studied for years even prior to medical school, and she speaks of it with the kind of passion and reverence I normally reserve for Judith Light. When we met, she could tell I was neurologically “different,” which means less than you might think. “Different” brains, like bad childhoods and pretty much everything else that’s currently having a prolonged (and occasionally irksome) cultural moment, are a dime a dozen. Possessing one makes you no more virtuous or villainous than anyone else, no matter what the Internet tells us. Heck, most of you reading this right now probably have unusual brains—who else enjoys Afterschool Specials that much?!
Nevertheless, in the early days of befriending and then dating a physician, I often felt strangely vulnerable. It reminded me of how tennis players describe the brutal solitude of the court in exposing their deficiencies. (Pete Sampras, a master chronicler of this, said “It’s one-on-one out there, man. There ain’t no hiding. I can’t pass the ball.”) Before our first date, I laid my cards on the table: the lifelong history of IBD, the surgeries, the related conditions. And, less importantly, a former partner’s insistence, equal parts bitter and rueful, that I was autistic and therefore at least partially defective.
None of it troubled my wife, who had a hair-raising medical history of her own and a clinician’s confidence that the puzzle pieces of my health could be neatly assembled by the right team of doctors. She was similarly sanguine about the possibility of autism, counting among her mentors a leading autism researcher. Her knowledge and experience meant that little about me was exotic or foreboding (she laughed in genuine delight upon learning my family once called me a “little professor”), though she later acknowledged her gastroenterology courses hadn’t accurately captured the realities of life with a diseased j-pouch.
After nearly 10 years of her taking my health challenges in stride—even when I made it pretty difficult to do so—we’ve finally, in my recent diagnosis of dystonia, cervical and otherwise, encountered an issue that exposed a glaring blind spot. How was my brain enthusiast spouse unaware that I’d developed a textbook presentation of a neurological disorder? “You’ve always been shaky,” was her initial response, and I can’t really argue with that, except to point out that previously, before my Crohn’s was under control, dehydration contributed to that shakiness. I’m not dehydrated now and haven’t been during the 18 months it took to figure this out.
As a long-time patient, I rarely bother accessing the notes my doctors write about our appointments; I trust them to do their job. But I printed a PDF of the movement disorder specialist’s notes for my wife to skim because this was a new beast entirely, one with potentially serious repercussions. Dystonia can be a standalone diagnosis, but some of my neurologist’s clinical findings, like bradykinesia, muscle rigidity and several types of tremor, could also indicate that mine is part of a larger problem, like early Parkinson’s. In reading the notes, she saw that I’d taken some of the doctor’s questions too literally (“Do you experience writer’s cramp?”) and provided inadequate answers.
She also realized that she herself might have overlooked something important, something that sounds trivial but that the doctor needs to know: I can’t distinguish between her (many) scented candles, though I can tell a candle is burning. When asked if my sense of smell was fine, I said yes without much thought. I can smell my food, I can smell my dog, and I detected a whole helluva lot of weed while standing downwind from a dispensary last week. But my powers of perception are apparently diminished, at least when it comes to those candles, which I’m assured have disparate scents: balsam, cinnamon, peony, etc. And I’ve not had COVID during that time, either.
Between my ongoing physical discomfort and all these new questions rattling around my suddenly suspect brain, it’s been harder to concentrate on frivolous things, like my collection of half-finished movie posts. Mostly I wonder why this seems to have come out of nowhere. It was right in front of my wife’s face, after all, and it is technically on my face, which has its own assortment of mild tremors. It’s disturbing to conclude that some of this has been going on for so long that we were inured to it or made silly rationalizations. I’ve fallen more than usual since the summer of 2021 and usually blamed the dog, for example, even though she was absent from my solo staircase tumbles, which account for nearly half of those falls.
It doesn’t ultimately matter, and there’s no point in getting ahead of ourselves with worry. This could be a minor obstacle or turn into something more complex. We have no control over that side of things, only in how we react to it, and I’m confident in my ability to play the hand I’m dealt. If one side of my body ends up being less useful (or more obstreperous) than the other, as has already been the case in recent months, that’s fine. Life goes on. Sensing my spouse felt more circumspect, I played her the Michael J. Fox episode of Curb Your Enthusiasm, which in one scene mentions dystonia. She laughed, aghast, at Larry David’s insistence that Fox’s Parkinson’s was an elaborate ruse. And, as the end credits rolled, she requested another episode.
Cranky Lesbian is a disgruntled homosexual with too much time on her hands. Click for film reviews or to follow on Instagram.
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