I’m pretty awful at remembering important dates. My go-to excuse of a memory turned to the state of a rusted-out sieve thanks to brain surgery, brain injuries, ongoing seizures, and the cognitive side effects of the drug regime that keeps me somewhat functional, if a scatterbrain, is a convenient one to pull out of my back pocket when I fail to wish someone a happy birthday until a week after the fact. It would be disingenuous of me, however, to pin all blame on my neurological woes since this is an issue that predates the worst of those by decades. I’ve always marvelled at people who are able to call to mind the day they swiped right on their future spouse. I’m not one of them. Nope: I have to refer to the save-the-date magnet I had made for my wedding and still have on my fridge if I’m to be confident that I’m not planning a celebration of my and my husband’s anniversary for the wrong day. Even then, it’s very possible that I messed up when ordering the magnets in the first place.
In light of the above, it’s no wonder that just as I forgot that it was Purple Day (and that it was Eating Disorders Awareness Week), I also let the three-year anniversary of my discharge from the rehabilitation hospital slip by without celebrating it. Besides the medical excuse and the “I was born this way” line, there’s a third factor at play in all three of these cases: that as my world expands, the chronic illnesses I continue to live with become less central in it. I repeat a version of this way too often both because I have a bad memory (there I go again!) and because it still causes me to stop, smile, and heap praise upon my much-stronger self when the thought crosses my mind. In a sense, then, the not-remembering-to-celebrate was a celebration of its own.
In other ways, too, I celebrated throughout March without knowing I was doing it. I took a weekend trip with my husband, and we booked a big one—our biggest yet, by far—for the fall. I successfully sewed a pair of pants with a zipper fly, thus acquiring a skill I’d been nonsensically avoiding and now wish I’d tackled sooner because man is it satisfying to get right. I was kinda productive but also let myself relax, which was a victory and progress in itself. I found and started seeing a neuro physiotherapist and am super stoked about working with her. I advocated for myself and was rewarded for putting myself out there.
Given all it signifies and the dangers that forgetting represents, it’s worth bringing the party out of my unconscious and belatedly marking this milestone in a more public way. It’s pretty incredible, really, that three years, a month, and a handful of days ago was the end of what I hope was my last medical admission until I’m an old, crotchety lady with a treatable illness and the wherewithal to terrorize my nurses with unreasonable demands. In the rare moment my motivation wavers, my desire to be that elderly woman fifty years hence is enough to keep me going.
I’m a great believer in the potential harm of portraying only the positive and am therefore willing to risk being a downer by injecting a little balance into this gratitude fest. Shockingly, my life isn’t a series of effortless triumphs. Much as it hurts my perfectionist heart to do so, I’ll admit that I’ve had a few frustrating setbacks in recent days, including an accident last week that’s temporarily worsened my already-limited mobility. (I’m horribly prideful so will clarify that the incident was not my fault, thank goodness.) I’ve made great strides, sure, but it of course annoys me to no end that I’m not floating in the utopian galaxy I dreamed up three years ago, a comfy pocket of the universe dotted by my big goals and visions of everything I planned to accomplish by this stage of my recovery. To be fair to myself, it was aiming pretty high to think that in the space of thirty-six months I could carry out a total transformation from completely reliant and bedbound professional patient to entirely independent marathon winner/author of several novels published by a reputable press. My only real failure, then, is neglecting to be realistic.
On the plus side, my reluctance to settle tends to spur me to action rather than cause me to sink into a state of complacency, and I’m slowly learning to compromise. Besides, considering that I was shooting for Mars, I’m pretty OK with having landed somewhere amongst the stars. I’ll happily chill here while plotting my next move and impulse-thrifting textiles to add to my stash. Where, exactly, I’m headed and what, exactly, I’ll sew with all that beautiful, beautiful fabric is TBD, though I’ve decided to leave the Red Planet for the megalomaniacs. The moon, on the other hand …
De Morbo Sacro: Life and/with Epilepsy 