Let's explore another TBI metaphor.
I stand.
I sit.
I speak.
I smile.
I dance.
I drive.
I train.
I travel.
I write.
I love.
I lie in a shadowy room, immobilized, sedated and floating in a tank of water that keeps my body temperature and the surrounding air the same number of degrees so I’m never warm and I’m never cold.
Amidst interactions with other people, sometimes my eyes are open but I’m not really there. Bella has left the building. Often they are shut, just nobody knows it.
I know it.
It’s like I’ve been living in a walking coma for the past twenty-four years. 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.
I am aware that the world is happening. But the things that have happened to my body and especially my nervous system necessitate my isolation in this room where the most important things—sometimes the only things that exist for me are my recovery and my survival.
The more that’s going on around me, the more voices I have to decipher, the more ambient noise I have to filter out to hear your voice amongst all the others in the room, the more insulating the tank has to be.
Trust me. You want me in this tank. It’s for everybody’s good.
One day you come to visit me, and I’m super excited about that. A nurse brings you into my room and sits you beside my isolation tank. Beneath my soundproof dome, the light is low. Your voice is piped in through a speaker; I can see you on the video monitor, full body, but distanced. Somedays the full-size screen is clear and vivid; somedays it’s grainy and monochrome, small and clunky. Occasionally the video screen is turned off, which really sucks because that means I can’t read your lips when you speak to me.
I don’t get to decide which video screen is used. My internal nursing staff decide that. I also do not have access to the volume control on the speakers.
Sometimes the audio and video are synced; sometimes they buffer and glitch. I can see that your mouth is moving but I can’t hear you. If it’s a good day, your words will all come through, mostly in time with your moving lips.
On a decent day, there will only be a few seconds of delay, with only a couple topics that come in two minutes later, all crammed up together like you’re on Fast-Forward, jabbering at Alvin Chipmunk speed.
Sometimes they’ll randomly filter across my awareness two hours later, clear as a bell. Our conversation will be long-done by then and you’ll have gone home. I’ll be back in my solitary room doing solitary things when I’ll hear your voice out of nowhere. Only then can I finally register what you were saying. Sometimes it happens as I’m falling asleep or just waking up.
It’s particularly annoying when this happens two days later.
Especially when the conversation was really important. I will have to call you or message you and tell you how sorry I am but I am only just now capable of responding to you, because I only just now heard the words you said.
I know. You thought that shit was fucking resolved and now I’m dredging it all up again?
Would you rather I sit alone and in silence, and never tell you?
Oh, you would?
Then you probably shouldn’t be friends with me. Definitely shouldn’t be more than friends with me. And if you simply don’t believe me when I describe the coma and I describe the tank and I describe the fact that I don’t ever get to voluntarily handle the volume and screen controls…
Move along, citizen.
In February 2020, I got to ride 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. Naturally, the uber-geek Curiosity Monkey bombarded him with a gazillion questions. Over those several hours he and I 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 knew vaguely what he was talking about, and that it was a big deal. I also knew that it happened when I was a fully-fledged adult who would have paid attention.
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 my big car wreck, which tells me it probably happened after.
Let's just see...aha! Thank you, Duck-Duck.
Yup. 2010.
That tells me exactly why I can't remember it. Because in 2010, I wasn't sedately in the coma. I was scrambling at the cliff side as my whole mountain started giving off warning tremors. Within two years, it would all slip into the avalanche that would eventually dump me under a rubble heap at the bottom of the ocean.
Again.
From 2012 to 2017, gleaning information via eavesdropping on the nurses' station became a fond memory. 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 car wreck.
I only have a few snapshots of memory from that whole event, most of them from the shocking moments when I first learned what had happened.
When I am up for it, my internal nursing team is very good about ensuring that I receive plenty of sunlight, energizing activities, and social interaction.
For me, life #OutThere is a series of overlapping signals too often crashing into one another. Always has been, but the hypersensitivity of my original operating system is now exacerbated by TBI and PTSD. 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-mwohhh-mw-mw-mwoh-mohh... Charlie Brown teacher-voice. For me, that's the sound of being out in public.
It's also what the once-clear memories of a lot of my single-person conversations get mushed into after I've blinked enough times.
I live with ear plugs in my purse. I wear my sunglasses at night so I can…so I can…
Function.
When it’s really bad but I have medical appointments or responsibilities that necessitate me leaving my isolation room, I sometimes wear a black winter hat I can pull down over my eyes while somebody else drives me. If it’s hot out, sometimes I pull down my wide, black sweatband to block out the sunlight.
When it’s really-really bad, I curl over my knees with the base of my palms dug into my eye sockets because light flickering through trees, flashing off other vehicles, or shining in my eyes will give me seizures.
So will forcing my brain to math on a day it can’t math, or calendar on an hour when it can’t calendar.
Or to remember the choreographic sequence I was knocking out of the park yesterday because I used up too many Spoons and now I have to recover.
Or trying to pick out your voice from all the overlapping conversations and the overhead music and the movement of the wait staff and that kid in the next booth incessantly flapping their cute hands in excitement. That’s why I always request to sit in the farthest corner of the room, so the sensory stimulation all comes from one direction. It’s also why I don’t do this very often, why I cancel at the last minute, bail early, or am unfunctional for anything afterwards.
As such, Covid Isolation was a simple thing for me to weather. Because for the past 24 years, I’ve had to keep myself in that kind of isolation for my own health care needs.
When I can’t be physically separated from the world enough for my brains to stabilize, the solution my jailers—I mean my internal nervous system nurses have come up with is to isolate me inside my skull, insulate me with speaker volume and distanced screens that it controls, and sedate me into the walking coma.
The Censorship Committee around here is ruthless. I don’t get to decide which information I’m allowed to hear on any given day. I don’t get to decide which conversations and experiences I’m conscious for or sedated. I certainly don’t get to decide what I’m allowed to remember without reading my journals or being reminded by you.
Some mornings I wake up and grin in delight when I spy all the telltale footprints on my sand from the dancing we did together the night before.
Other mornings, I awake to find that the sea has come in overnight to wash my beach clean when I go to sleep.
Rest assured. Most of what happened is still all with me. But a lot of it has been swept away by the waves to sink deep, deep down into the murk of my coma. When I’m down there, sometimes I’ll happen across one of these memories. Or if something on the surface shines a light on it, I can dredge it back up and look at it in the sunlight.
Sometimes I’ll even get to take it home with me as a keepsake.
Often I don’t.
Often, it’s too heavy so I have to let it go, let it sink like the anchor.
This is why we write everything down. Journals. Scene snippets of my memories. Important health conditions and interactions I might need to remember later—or the ones I might simply want to.
If I don’t write down my life as it happens, and if I don’t ever go back to read what I wrote, if I don’t paint it stories that I tell myself, then reread those stories multiple times as I edit them to share with you…then I have no clue who I’ve been for the past quarter-century. Sometimes even working with a tale enough to feel comfortable posting it here will not be enough to transform it into a memory I can voluntarily access.
Living with partial amnesia feels like floating suspended underwater, with only the muffling sea around me. I remember what it was like #UpThere. I just can’t live there anymore.
Could I ever?
Really?
Healthily?
That’s why it means so much when you take the time to read these things, to swim in these waters with me, and to be interested in these conversations. I especially love those of you who can climb into the tank and quietly float with me.
When we’re together in this place, we don’t have to say a word.
Your hand in mine…or my ear on your soothing heartbeat…your head upon my heart as I hold you close so you can hear its rhythm pulse out everything I don’t have the words to speak…
These things are precious to me, because overload and burnout necessitate that I spend so many of my hours in solitude and silence just to recover from maintaining base functionality, much less pulling off any feats of badassery. There are so many hours of the week when I just can’t tolerate anybody in the tank with me, or even in the room.
This state dominates my existence. So I’m always thrilled when we get to swim together.
UP NEXT: The supercomputer of a brain I was born with versus the dusty filing cabinets that a drunk driver left me with.
© 2020 Hartebeast
The overwhelming sense of isolation that runs through this piece is heartbreaking. And the fact that, at times, you need that isolation just to function normal must make it so much harder. Like you have to push people away sometimes, even when you don’t want to, just so you can take care of yourself first.
Like the under the ocean metaphor from last time, the isolation tank metaphor is really effective at conveying the disconnect of your experience.
It’s also lovely to hear that writing helps in some ways with your experience — thank heavens for writing.
A wonderful and extremely moving piece Alexx.