January 28th, 2023
Fellow watchers of scintillation,
A lone streetlamp stands sentinel outside my apartment, holding a light against the long nights of winter. Snowflakes drift into its white orb from the darkness beyond. Hurried feet trace ephemeral patterns on the living canvas.
Fleeting beauty, shifting and shifting again.
I’ve been watching this scene intimately lately, as my vision slowly comes back to me; haloes and shadows become lines and house numbers, day by tremulous day.
At the beginning of December, I underwent eye surgery - a careful choice made in the next chapter of my ongoing story with neurological troubles. Five years ago, everything went white and I temporarily lost my vision. And since then, my brain has been…weird. Certain visual stimuli - repeating patterns, computer screens, artificial lighting…things that were once normal - suddenly started sending my brain into a tailspin that would leave me unable to see / think / do for days. Like I said - weird. A gauntlet of neurologists and ophthalmologists later, it continues to be a game of health whack-a-mole with surprising symptoms and the invisible machine within.
Fleeting struggles, shifting and shifting again.
In the process, I’ve been quietly probing at my new limits; trying to figure out how to thrive in life, love, and livelihood amidst the world’s baseline of ableism. It has been hard, to say the least, but slowly I’m finding a rhythm that is healthy.
The details of my embodied experiment are far too many to get into here (and, as with most mucky hardships in life, are better suited to one-on-one discourse when in the heart of it). But suffice to say, choosing eye surgery was a shot in the dark with the doctors giving me noncommittal advice: “We don’t know if it will help, but at least it shouldn’t make things worse.”
The final choice was left in my hands; and so I researched, asked questions, and weighed risk as best I could. Even still, by surgeon consult #3 a pile of liability waivers was placed in front of me emphasizing that there is always the potential for surgery to make things worse - which, evidently, the lawyers want me to be well aware of.
But despite the emotional swirl, the logical thing remained: trust in those who know better than I do.
In trust, I can find hope.
And so, with a quick signature and a credit card, I gambled.
It was a terrifying experience. 2/10. Would not recommend.
The day of:
Nurse Deb eases me onto my back in the operating room, quietly walking me through the procedure another time amidst a bustle of medical staff around us. I need to be awake throughout; a cooperative participant so that the surgeon can get the job done when my eyes are cut open. Listen carefully and do what you’re told. No moving whatsoever.
I confide to Deb that I’m scared. She offers me another Adavan - I say no. She offers me her hand - I say yes. Sedatives don’t stand a chance against the adrenaline coursing through my veins.
Ready to go, the surgeon turns his attention to me. He reiterates what’s going to happen - this time swinging my operating table underneath the alien technology, explaining each tool as he fires them up so that I don’t freak out from the whirring and clunking sounds they emit.
I give final consent to my captors, and they get to work.
[insert traumatic details here]
Determined to do my part as a good patient, I managed to not cry until standing up from the operating bed - but then I was done for.
Cut to one week later:
The timer on my watch buzzes and I beeline to the makeshift shrine laid out upon a bench in my bedroom. Kneeling in familiar prostration, I tilt my head back and apply eyedrop 1, 2, or 3 - depending where I am in my hourly routine.
This is my life now - punctuated by taped shields over my eyes at bedtime and delicate washcloth baths come morning’s rise.
The blinds are shuttered. Daylight hurts - which, for anyone who knows me, is the opposite of my normal sun-loving nature. Everything is blurry, and inflamed, and…not improving nearly as fast as I’d been advised. A quick call to my emergency contact and an extra followup is booked amidst the standard many.
Cut to one month post-surgery:
Beyond the surgery itself, I’ve had 5 followups now. Recovery is going slower than expected, but continues steadily in the right direction. My eyes physically look good (I’m told), but my brain is still having a hard time with it.
The jury is still out on whether it will pay off in the years to come. As with most things in the brain, it takes a long time for neural patterns to develop and it takes just as long to undo them. Patience and persistence, do not abandon me.
Cut to now (1.5 months post-surgery):
Donning thick wraparound sunglasses, I open the blinds. It’s a beautiful day; frosty, and white, and bright - oh, so bright. Yet out into the world I go.
The following images are the first ones I made in my steps back toward the light that I love - and with upgraded lenses at that! I hope you appreciate them as much as I do.
Beauty and struggles, shifting and shifting again. Sometimes you just have to laugh at the absurdity of it all.
Onwards and forwards,
D