THE COMA & THE SWIRLING SEA - When Memories Are Inaccessible
Let's explore another TBI metaphor:
I stand. I sit.
I travel. (Okay, I used to travel.)
I lie in a shadowy room, immobilized under covers that keep my body temperature and the surrounding air the same number of degrees so I’m never warm and I’m never cold.
My eyes are sometimes open when I’m not really there. They are often shut amidst my interactions with other people. Just nobody knows it.
But I know it.
It’s like being in a walking coma. It's like I sporadically catch intelligible snippets of what’s going on in the world from the conversations out at the nurse's station or from the nearby TV. When someone comes to visit me, they tell me things about their life. If we're alone and they catch me on a good day, I can hear them clearly.
Mostly it's all just overlapping noise. Too many voices. Too many details. Too much clang and clatter and rumble and roar that all gets turned into one big Mwoh-mwoh-mwoh-mwoh-mwohhh-mwoh-mwoh-mohh. Charlie Brown teacher-voice. That's the sound of being in public. It's also what the once-clear memories of all my single-person conversations get mushed into after I've blinked enough times.
If you're a human, you're probably familiar with these sensations. Now put them on steroids and give yourself seizures if you try to decipher the Mwoh-Mwoh-Code.
The solution my stirred-and-shaken brains have come up with is to insulate me in the hospital room and sedate me into a walking coma.
This past February, I rode through a snowstorm from the Denver Airport down to Colorado Springs for the writers’ conference I had won a scholarship to. My driver had done many fascinating jobs in his sixty-some years. One was operating submarine maintenance drones. Geek and curiosity-addict that I am, I asked him a gazillion questions. Over those several hours we had the coolest, most fascinating conversation.
A conversation that reminded me over and over--and yes, dishearteningly over--just how deep into the coma I’ve been, and for how long. For example, he mentioned the oil spill in the Gulf of Mexico.
I know vaguely what he was talking about, and that it was a big deal.
But I couldn't tell you in which decade it happened, much less any details about it. I mean, I can’t even tell you if this is something that happened before or after being hit by a drunk driver, which tells me it probably happened after.
Let's just see...aha! Thank you, Google. Yup. 2010. That tells me exactly why I can't remember it. Because in 2010, I wasn't only in the coma. I was scrambling at the mountainside as it all started slipping into the avalanche that would eventually dump me under a rubble heap.
From 2012 to 2017, gleaning information via eavesdropping on the nurses' station became a fond memory. I’d been punched in the face by an angry man, then was rear-ended again at a stop sign. I have about as much recollection of world events from that time period as I do about 9/11, which occurred only nine months after my big car wreck.
Most of what I remember from before December 21, 2000 is stored in a different sort of media from the things that came after. I don’t know how else to describe it. It’s like the difference between looking at photos and videos from the 2000s vs. the 1970s, only the newer, post-TBI memories are recorded with the crappier tech. The ones from 2000-2003 and from 2012-2017 are glitchy black-and-white silent films and old tyme sepia photos.
According to my last neuropsychological exam that I took this past August (hallelujah, as I’d only been asking for one since 2013), the information is all making it in there. With the exception of those missing longterm memories from college and shortly after, new data gets stored in the cloud drive.
I just can’t bring it up onto the desktop to access it and use it.
One of the (most excruciatingly infuriating) tests in the neuropsych exam is the overly detailed verbal recall test. It goes like this: The administrator reads a story stuffed with dates and shirt colors and proper names and exact prices.
My job is to hold onto as much detail as possible and regurgitate it back.
Whether I’m reading or listening, my brain reflexively flinches from those types of details. "Lalalalalala, I can't hear youuuu!" It blocks out the majority, either like a big black marker across the page or like a “bleeeeeep…bleep-ba-bleeeeeep” to my hearing. It hunter-seeks only the primary action committed by the primary subject.
If we start with: "According to a study by Dr. John D. Hopscotch-Supercalifragilous of Expialidocious University in Tweeliebob, MD..."
My brain translates it into this: "According to some University PhD..."
That’s all my mind wants. Who did which action? Subject. Verb. For information we don't need to retain, I think this is a pretty standard operating procedure. But when you can't CHOOSE not to do this, especially when you're sitting with your best friend and they're telling you about that important thing that just broke their heart, or you have to give a report to your boss, or your kid just told you what the school has required them to do for an assignment...bleeping and blacking out 90% of information is not a good skill to have set to Auto-Bleep.
In order to digest nitty gritty details and fart them back out with proper comprehension, I have to read things with really determined concentration, often multiple times, and even that's hedgy if it’ll stick longer than a few minutes. More often it gets booted out by the next piece of information that I need to use. It's even worse in the audio/verbal channel. Especially if I can't read lips. (Like behind a mask.)
Now you might be tempted to say, "Yeah? So? I've done that all my life. What's the big deal?"
I HAVEN'T, SO IT IS A BIG DEAL.
Just like it's a big deal for any kids who start out with reading or verbal comprehension difficulties, it's an equally big deal for someone to lose them.
Have them stolen by a drunk driver and an abusive fist. Let's not forget the additional emotional and social impacts that I also deal with, in addition to the disability itself.
"Ohhhhhh...wah-wahhhhhh. Gonna blubber about it, crybaby? Life sucks so get over it, or better yet, why don't you just go kill yourself!"
Yeah, that’s always nice when people say that kind of stuff to us, the disabled, for talking openly about our experiences.
If you can't muster up any compassion for my situation, perhaps this post will help you better understand what this catastrophic loss feels like. As a brainiac wiz-kid, I certainly couldn't comprehend what it felt like for anyone who didn't have a Tony Stark supercomputer in their head. If you don't know, you can't know. So if that doesn't help, here's the explanation my first neuropsychologist gave me, as well the widespread ramifications that brain injury has on my life. If you still can't muster up any sort of empathy, perhaps you're reading the wrong friggin' blog and you need to scroll on, citizen.
Or maybe...I dunno...stick around and learn something new from a societal demographic that's notorious for being incapable of communicating what we're going through.
So back to bleeping out precise information.
I used to take in every one of those details like nothing, and I could spit them back to you like a nail gun. My reading comprehension, speed, and recall was through the roof. I also used to be able to memorize choreographies after seeing them twice, provided I wasn't learning a new move that required development of the physical dexterity first. If it was just memorizing new sequences of old moves? Pshhhh... whatevah.
I could also show you that dance a decade later, even though I hadn't touched it since performing it.
Alas, I still possess the base hardware for that kind of function, as well as 28 years of using it, so my brain still automatically attempts to operate like that. Yes. Still. So I run full-bore into the neurological roadblock. Being an HSP, I can actually FEEL my brain attempting to perform the tasks and failing because the pathways either have an impassable wall or the train track has been blown up and it just isn't there anymore.
True, I have gouged a multitude of new pathways and rerouted others, but don't think I can't feel that, too. That's why it takes me longer, why I do things in weird ways, why my processing speed is bogged down, and why it devours more Spoons for me to accomplish day-to-day tasks that many others take for granted. It's why my brain can't run multiple programs at the same time (I used to be incapable of even speaking if the TV was on), and why it can't run them for extended periods.
It is literally painful.
When my brain tries to use broken pathways I haven't yet figured out how to jerry-rig, or while I am up to my eyelashes in rebuilding/rerouting these demolished roadways, it feels like a micro version of bull-barreling face-first into prison bars, over and over, for the entire time I attempt to do these kinds of things.
Of course, that's never stopped me trying to bust out of the electro-rigged cell I have affectionately named Dain Bramage. My hobby is neuroplasticity. I am constantly tinkering with new escape plans and concocting elaborate schemes to steal keys from guards, because apparently I don't have the capacity to learn "I can't" without tacking on the addendum of "YET."
Me and My Jailors:
Okay, okay. Maybe after all this time, I have gone a little cray-cray. I think I'm entitled.
👆All that up there?👆 That's why I was medically removed from my job as a task-juggling, number-crunching office manager. It's why operating a motor vehicle is so stressful for me. It's why my former pastime of reading novels has become sweat-inducing skull therapy. It's why my brain doesn't register that I'm being punched until the fist is 2 inches from my nose. It's a major trigger of my seizures.
And it's why that verbal memory recall test transformed me into a frozen vegetable with ginormous eyes.
When my test administrator told the first tale, she spoke for a lonnnnng time. By the time she was done, I had managed to hold onto the subject's first name and one other detail. Go me! Unfortunately, I could not even guess about the general gist of the story.
The second time, I was able to keep the person’s first name, the city where he was from, and the barest bones of the story.
But that was it.
Triumph: I improved because I still learn, extrapolate, and adjust quickly. Totally different brain skill. Totally different test that I rocked while deciphering patterns in little blue, red, green, and yellow shapes. Plus, my neurological defense mechanisms are trigger-happy.
KLAXONS: Warning! Incoming! Warning! Incoming!
Informational firehose on approach from 12:00.
Engage Bleep-Out Hunter-Seeker Missiles!
Leave all chaff behind.
Interestingly enough, I also rocked the second half of this test. After palate cleansing (and distracting me) with some exams of vastly different nature, we returned to our lovely old stories. Instead of asking me to recall them, she asked me questions. “Did the woman go to the grocery store? Was it 4:53 p.m.? Did she have two children? Was she nurse?”
I couldn’t have answered those questions by memory to save my life. But my guesses were almost all correct. Even the ones where I was all, "Uhhhhhh... sheesh, I dunno. Y-yes?"
SIDE NOTE: Even more intriguing is the fact that those example questions up there are not randomly generated fiction I created for this post. Those are actually the types of questions she asked me. I couldn't have regurgitated those details right after I heard the story, but because we entered through a different pathway to access my memory for the second time, I do remember her asking stuff like that, and I can see her face as she did it. I can also see the mental image of the clock numbers that I conjured in my head when she asked about the time.
I really do love neuroscience. The brain is such a miraculous machine, as is the body's ability to heal itself and adapt.
I had the same experience with the flash cards of simple drawings. We would flip through card after card after card after card. Then we would go through a second set of equal length that contained some of the drawings I’d seen and some I hadn’t. Or another time we did a round where the cards contained two drawings side-by-side, and I had to say which one I’d seen during the first round.
I aced that. Not because I remembered seeing all the cards. But because I really, really didn’t remember seeing the others. I was guessing most of the time. The two kinds of drawings just…felt different.
So like I said, it’s all in there. I just can’t access it at will.
It infuriates me. It's excruciating, not only physically but also emotionally. Because I remember what it was like to do these things easily and well, and I have faces I can blame for my loss. I can feel all my ghosts milling about in there. They eternally haunt me. Taunt me. All these details about the world and the people I know, especially about the people I love--I should know these things.
And I just fucking don’t.
So what DO I do?
I try to notice each moment. I look for reasons to enjoy everything that’s happening right now--yes, especially amidst things like pandemics. Am I experiencing Covid stress? Of course. Am I worn thin with isolation and loneliness and a year without touch and having zero idea how I will ever again feed and shelter myself?
I've also obliterated toxic connection after connection that stresses me out, so I'm even more isolated than ever before.
That means I have to make a hobby of hunter-seeking reasons to enjoy my life even more than usual. The glow of my faerie lights. The sweet overflow of the juice down my chin when I bite into an orange. The satisfaction I feel every time I accomplish another step in one of my monster projects. The searing bliss of stepping into a bath. The sunlight on my face.
When I’m with the people I love, I drink in everything about them, knowing that the memory will get filed…somewhere in there. It’s all buried inside me, so I try to weave it in amongst the songs I love to dance to most. I don’t have to think about those. The music comes on and it moves me like a marionette.
I reach for the beauty and joy I have known in my life using the same mechanism. Not with the front of my brain that was slammed into my skull at 80 mph. Not with the analytical recall mechanisms that glitch and come up short. No, I mean…over there in the swirling sea of brilliant colors. That’s where those Impressionist paintings are made. I let my eyes go hazy as I bathe in the fuzzy images.
Instead of trying to remember…
I FEEL you all instead.
Best I got today. And in this moment, that's enough.
Forever reaching for my Inner Oogway:
'TIS THE SEASON
CHOOSE YOUR OWN ADVENTURE:
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