Hello from a strange town in Eastern New Mexico where rolling thunderstorms are a sweet reprieve in summer’s scorching heat. I am almost complete with my second day of two weeks of intensive neurorehab. The experience so far has been extraordinary and I want to tell you about it, but I’m still catching up with the context of how I got here. If you’re new here or missed some prior posts, I’ve been intermittently telling the story of my catastrophic brain injury amidst other essays. The first excerpt is here, and the second here. Today’s the third, and it’s about as far as I can get through the static of brain fog and limited wifi signal. This may not be the clearest cleanest of my posts, but the fact that this can even be transmitted is an answered prayer.
I am so grateful for your interest, curiosity, and support as I share this ongoing journey. I am exhausted and mystified with gratitude.
Til next time, with love,
Rachel
I stood alone in the windowless galley kitchen ensconced in a room of all yellows – marigold counters, honeycomb cupboards, a highlighter hazy glow radiating from insufferable fluorescent lights. A dull ache of pain pulsed along my retinas. I fixed my gaze on the small cardboard box before me, turning it over and over in my hands.
I was left here with a simple assignment, but the chatter in other rooms and inside my mind pulled me onto a dozen different conversation trails. I tracked every clanking cane and creaky wheelchair. I noticed all the hallway fumbling and bumbling. The warm greetings, the desperate pleadings.
Focus, Rach, come on. This was another test in a litany of hurdles. I had a plane to catch to Buenos Aires. I couldn't fail. I allowed the image on the front of the box to wash over me, yearning for motivation. I used to be such a sucker for these things. Born into this life with a ferocious sweet tooth, the boxed cake grocery store aisle was kryptonite for me as a kid. But as I stared at the peaks and valleys of perfectly swished frosting spread thick on the Super Moist fudge cake I was supposed to be mixing in that moment, I felt nauseous. Since the injury, one of my brain's glitches had warped my sense of taste. Chocolate and bubble gum filled my mouth with salt.
I flipped the box back around. Eggs, water, oil. Three basic steps. I summoned the part of myself that had done this a hundred times in my life, that at one point knew how to do this almost blindfolded. But she was lost to me. I couldn't translate the information, couldn't command my body to crack the eggs, measure the oil, open the mix. I stood there. Frozen. Staring.
A few nights ago while camping with friends on the most stunning banks of a gorgeous river, rustling pre-dawn sounds outside my tent riled me. I felt certain I was surrounded by predators on all sides. Mountain lions gnashed their teeth. Drool dribbled down their jaws and dripped onto dry earth as they circled and circled. My heartbeat pounded thick in my eardrums. I opened my mouth but no sound came out. I squeezed my chest. I bore down on my vocal cords. Nothing. I tried to wriggle out of my sleeping bag, reach for a flashlight, but I was pinned. Nothing. A stampede boomed inside me deceived by deafening silence. None of my sleeping friends knew to rescue me.
I woke up several hours later and realized this was a nightmare, one I've had repeatedly throughout my life -- sometimes hunted by an animal, sometimes by a man, my body frozen, defenseless. I was relieved that I didn't actually scream at 4 am over nothing, mortified by the mere thought... but this is exactly how it all felt to move through neurorehab. Trying to follow the recipe, to balance on one foot, to learn how to walk properly again, to read and remember a sentence, do basic math, follow a map, drive a car...
I was trapped in the purgatory of inhabiting an immovable body, my brain screaming, my heart pounding... and nothing happening. It felt exactly like living my worst nightmare. My body was in one realm, my brain in another, and whoever "I" was felt located in some ineffable third reality unable to bring any of it together. I was panicked and lost and miserable.
I don't remember baking a cake in that facility where I spent 3 months in daily, 9a-5p neurorehab treatment. Did I try and fail multiple times? Did I bake it on the first attempt? No clue. I only remember fractions of moments until each thread plummets off a sharp cliff into the void. I must have at some point because it was one of the many thresholds I had to cross to return to my life, to board the flight, because that was how my life was going to go, that was the plan. I was already late. My friends had already trekked across Bolivia and were making their way to Chile at that exact moment... and this stupid brain injury wasn't going to rob any more of my dreams.
I do remember the men I was with, parts of their brains and skulls removed, limbs gone. Men once in peak form, returning to the lives they'd left just shells of themselves, blasted on battlefields. Now all of us milled around this facility, shepherded from room to room, wondering how much of ourselves would come back if we even had the capacity to know how far gone we were. I remember sitting across from these men at tables, playing cognitive games together for hours. Trying, laughing, crying, losing our shit together. Sometimes these men would lash out in frustration, carried or wheeled away. I was too disassociated to react that way but I felt it burning inside me too. When I was far enough along in recovery, I began to crack open my laptop and revisit the brain injury blogs that were my only psychological salves. I read story after story after story from brain injury survivors. This was how I learned that my smashed frontal lobe made it nearly impossible to regulate my moods, to feel much beyond confusion, anger, and a spiralic suffering that tunneled me deep inside myself. These obscure blogs saved me. They gave me something I didn't even know I needed. I wondered if those men knew that strangers on the internet were speaking to our experience from the outside, years ahead into our possible futures, guiding us through shadowed valleys.
I watched those men come and go. I remember their haunting eyes, alive and knowing and trapped. They showed me how much worse it could have been. We were all lucky to have this place, this facility, even in its inadequacy. Most brain injury survivors were given pain meds, told to sleep it off, then gaslit back into their lives with no one to validate that their damaged brains deserved better.
And yet, the treatment we received wasn't nearly enough. Most of my symptoms were treated (masked) with pharmaceuticals. Underneath the drugs, my brain wasn't healing. It was rerouting, leap frogging, stunting blood and nerve function to critical areas so that essential ones could survive, catastrophically compensating to make a successful life possible, and it all looked good so I thought it should be, a microcosmic example of the cultural conditioning into which we were all indoctrinated.
Basic rehab and intense meds got me back out "there" to all the things I thought I should be doing, thought I wanted, until ten years later all the hacks and tricks started to crumble.
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