TECHNO-LINGO MEDICAL MUMBO-JUMBO: How It Actually Impacts My Life
My neuropsychologist: You have to treat your brain as though it is a four-year-old.
Me: Hah. A four-year-old who’s been kept up until 11:00 at night in a crowded restaurant and just really, really wants to go to bed but every time you try to wrap it in a blankie in the corner, it throws a tantrum, along with every toy you try to give it.
My NP: Actually, that is a very accurate description. The trick is to not keep it up that late.
Me: Good luck with that. Every place outside my house is that crowded restaurant and it’s always 11:00 at night.
Me: …and I know it. I can feel it. Every glitch. Every time I run face-first into a wall. Every single little nuance of everything I can’t do anymore. I can FEEL it and it’s driving me crazy!
My NP: Yes. Because of the degree of sensitivity you were born with, and because of the level of intellect and all the abilities you started out with — and that in some ways you still have — you will, unfortunately, be excruciatingly aware of everything you’ve lost and every tiny thing that gives you trouble. Somebody who started out with lesser sensitivity, lesser intellect…they may not even be aware of what they’ve lost. In many ways, that’s a blessing.
Me: No shit. People just don’t understand. They think I can speak just fine. They don’t even notice that I’m stuttering until I point it out. They have no clue that, after just trying to get my thoughts out of my mouth for five minutes, I’m gonna have to put the fucking four-year-old down for a nap!
My NP: Indeed. Many people are actually quite clueless about anything going on outside their own selves.
Me: Hah. And within themselves, for that matter.
My NP: True. As I said, you are hyper-sensitive. Hyper-aware.
Because of that, your TBI overstimulation symptoms will be exacerbated. It’s more traumatic to you because of the way you FEEL it, and because you KNOW it.
Me: Lucky-ducky me! And nobody else outside the glass has a clue. They think that I must be perfectly recovered because my face isn’t sliding down my skull or I’m not in a wheelchair. They think everything’s fine but I can feel — over and over, all day long — that it’s not. And it’s literally painful. Not just in my body. In my skull. Every little misfire, every little zzzt, every time I try to do something that’s broken, it HURTS. Just as badly as trying to power-lift on a torn muscle. But nobody talks about that kind of pain. And nobody wants to.
My NP: You’re right. Brain damage is scary, and it’s difficult to empathize with, because if you don’t know, you don’t know. Plus, you don’t exhibit many physical symptoms. Except for the couple places on the neuropsychological exam where you now register as below-average —
My NP: *conceding tilt of the head* Except for those couple places where you exhibit mental retardation (remember this is 2001 here and these were the terms — and for us, not a slam but medical prognosis facts)…you present as a perfectly average adult female. But to you, average feels like being downgraded from the median level of intellect to —
Me: Somebody with Down Syndrome.
My NP: *after a long, audible sigh* Yes. That’s how it will feel to you, and it will be very difficult for most people to understand that level of loss because that level of intelligence and hyper-sensitivity are not the societal norm, and because you —
Both of us, with well-rehearsed eye-rolls: “Look just fine.”
This is going to be even longer than the last one.
Probably more tedious than you’d really like, and I swear, once the train ride finally crash lands in the Underworld, we’ll finally be able to start making our way back up. The silver linings, the coping strategies, the episodes of miraculous healing. *angelic choir chord*
But we’re making our Initial Descent here, and if you truly want to come with me on this adventure, if you want to know what a “mild” knock on the head and one little car wreck with zero lacerations or so much as a fractured bone is capable of wreaking upon a life…
Then I’ll beg of you the indulgence of actually reading this post. Not skimming.
Let it sink in as you imagine the person you think you know. Or the person you’ve seen dancing. Maybe you’ve heard my tale through the telephone game (some versions are more accurate than others). Or maybe we met that one time.
As you read this, if you get tired, if you start phasing out, if you want to quick skim to the end, I don’t blame you. Put it down for awhile. Come back. Or not. Sometimes I wish I could skim to the end, but I never get to put this book down except when I go to sleep. Sometimes not even then. If I can live it for the past 19 years, hopefully somebody might be willing to read it once.
If you read it, maybe you can start to comprehend, and then maybe…please maybe, I might be able to find a place of belonging in the world besides my living room where I invite the few people who get me and love me anyway.
If you’re just tuning in, this is the full post about my prognoses.
The Spark Notes: 1) Severe Whiplash 2) Various & Sundry: annoying, painful, cumbersome, weird symptoms you might not expect 3) Post-Traumatic Visual Syndrome: my eyeballs were stretched out of my skull 4) Post-Traumatic Stress Disorder 5) Mild Traumatic Brain Injury
What we’re mostly discussing today is the toxic cocktail of dain bramage with PTSD and PTVS.
Or if you want to start at the beginning, here it is.
Now onto the tasks detrimentally impacted by TBI that were once as easy as breathing for me:
Problems with Executive Function & Adulting:
— Problem solving
— Decision making
— Deciphering the passage of time
— Memory (see its own category below)
— Slowed or delayed processing speed
— ADOS: Attention Deficit — Ooooh, Shiny! (or Squirrel) Syndrome
— Dragging myself out of hyper-focus once I get started concentrating
That’s one of my main goals in life: try to GET motivated, STAY concentrating, WORK in an efficient, productive manner, and then remember to STOP so I can eat, pee, sleep, remember that that today’s a teaching day…ahem.
Yes, absolutely! These are normal silly-human issues. Every single symptom I exhibit is a problem that countless other people aren’t good at. My problems with them are simply on steroids, and I didn’t have them before the car wreck. They were thrust upon me by people committing felony assaults, which adds an additional emotional component to dealing with their punch.
More importantly, the price I pay when I don’t listen, when I push for “just five more minutes…”
Sensory Stimulation and Multi-Tasking Overload
— For the first few months, I was reduced to one voluntary task at a time. (Ex: if the TV or radio was on, or if other people were talking around me, I was incapable of speaking)
— I still have a lot of difficulty multi-tasking
— Multiple layers of conversation melt my brains
— Tinnitus (ringing in the ears)
— Hyper-sensitivity to sound
— For many years, I couldn’t sing on key (but I knew it — aaaah!!!!!)
— I also couldn’t snap (much less dance) on the beat anymore
— Same with keeping up with conversations or onscreen dialogue
— Hyper-sensitivity to touch
— Difficulty navigating too many colors, brands, flavors, prices, etc.
— Hyper-sensitivity to light
— Inability to deal with strobing, flashing, or whirling lights
— Difficulty panning & scanning — I have to sit in the back row of the movie theater
— I sometimes have to watch movies wearing sunglasses and earplugs
— Some movies I simply can’t watch, or I have to cover my eyes to the point of blackout during flashy/strobey scenes
— I also have to cover my eyes when passing police lights
— Or when the Marvel comic logo-opener is on
— Some fluorescent lights flicker at a rate that puts me under the table
— Sunlight flickering through spring or autumn foliage is like strobe lights
— Doing spins on stage when there is nothing but one follow-spot in the black also registers as a strobing effect
— Stage lights are the devil (I may have mentioned I’m professional dancer)
— So is flash photography
— So are parties, holidays, gatherings, clubs or other multi-person events, especially if there is background music, especially-especially if there are also TVs and/or laser lights, disco balls, or other special effects
— Migraine-caliber headaches
— Dizzy spells
— Seizures (not grand mal, thankfully!)
Stamina and Functionality
— For the first few months, I had a max time limit of being awake for 2 hours
— That gradually increased to 4 hours, and held for many years
— Eventually I could do stints of pushing that to 6–8 hours, but I paid for it for weeks after
— I originally needed 12–14 hours of uninterrupted sleep a night (which I didn’t get regularly for months because of pain and night terrors)
— Eventually that lessened to 8–10
— If I don’t get that regular sleep every night, BAD things begin to happen
— I also still have to take a 15–60 minute nap EVERY day in the afternoon, or again, BAD things happen
— On bad brain days or when I’m pushing too hard, I need to snooze and reboot my brain up to 3–4 times a day (even if it’s only for 10 minutes — it’s like the hard shut-down of a frozen computer)
— My limit on driving long distances was 2.5 hours until 2017
— Now I can go longer with proper preparation and breaks, but I have to have recovery time in serious silence and solitude after
— My stamina goes in waves and surges, so working a normal job on someone else’s hours is not an option
— Neither is driving to a job every day, week after month after year
— I avoid rush hour like the plague because on a bad day, it can render me as dangerous on the road as the drunk who hit me
— When symptoms start accelerating, tunnel vision descends and I lose the ability to self-monitor
— Which means I lose the ability to know when I should stop, rest, go somewhere quiet, go home, go to bed.
If you do not know what Christine Miserandino’s Spoon Theory is but you have humans in your life with chronic conditions or recent injury, YOU NEED TO:
Communication Issues — Input
— Interpreting auditory communication (even though my ears are fine)
— Determining the spacial orientation of auditory input — I think sounds are coming from about 160 degrees off
— I read lips and use closed captioning
— If someone is wearing a scarf, turned away, or covering their mouth while speaking, this is a problem
— Talking on the phone is a problem
— I have to look up song lyrics to comprehend them
— I used to have to chronically ask people to repeat themselves because I couldn’t keep up with their words, or entire chunks didn’t make sense
— Sometimes my mind —
— Sometimes my my mind gets clogged with audio input and puts me on Buffering Mode until I can catch up, which means I hear nothing someone has said in that time period.
— Usually I realize it
— Sometimes I don’t until I realize that I missed the entire context of the current conversation
— Remembering what has been spoken to me
— Sometimes 10 minutes ago
— But not always. There’s just no rhyme or reason to this stuff.
— I am She Who Laughs Last at jokes because my slowed processing speed is considerably more delayed for audio input
— For the first 6 months, I lost the ability to decipher humor — a catastrophe for the eternal smartass
— I still have trouble deciphering dry humor because I am constantly picking up the correct reaction from facial expression, tone, and posture cues well in advance of the Charlie Brown “Woh-woh-woh-woh-woh” of moving lips making it through the maze of my squashed neurons to register as words I can comprehend, so I’ll react to the body language and only later realize — oh. That was a joke.
— It sometimes takes 2–20 minutes, 2 hours, or even 2 days for words to make it through the scrambled mouse-maze into the comprehension banks where it suddenly appears like annoying magic. The more emotional the conversation, the longer it takes to process. This is a problem when trying to hammer out relationship conflicts, and I often get accused of harboring grudges, or not communicating things at the appropriate time because of *insert neuro-typical reason here*. (Fear of speaking up for myself, not truly knowing how I feel or what I want, having a vagina and therefore changing my mind, being an antisocial, withholding bitch…)
But trying to explain that sounds like excuses to people who don’t get it. Especially when they don’t WANT to get it because that will force them to alter the perception of the conversation and their position they defended like dinner at the Octomom’s.
Communication Issues — Output
— Speaking my thoughts clearly, concisely, and in an ordered format anyone else can follow (in contrast to babbling, rambling, going off on tangents, forgetting what I was saying, repeating myself, stuttering, losing words and getting mad about that and therefore forgetting what my point was…again.)
— Answering questions verbally, in contrast to in writing
— Talking-talking-talking where nobody can get a word in edgewise to save their lives because I just can’t quit talking to save my own life and one of these days it’ll kill me cuz I’m gonna forget to breathe!
— Having no sense of how LOUD I’M TALKING!
— Pockmarking every conversation with involuntary profanity. (That’s stored in the emotional center, not my damaged vocabulary center and will often replace the perfectly respectable words I wish I could speak)
— Think It Say It Syndrome: Having no filter of what comes out my mouth: BLURP!
— Getting anything out my mouth at all
— Stuttering & stammering
— Problems with retrieving the correct vocabulary (“You know, that sitty-downy thing in there with the shhhht and the whhhhooo…” — a horizontal hand swipe and a vertical gesture. “Er, chair. Yeah. That’s it.”)
— Often I can see the words I wish to speak as if they were written on a blackboard in front of me, but I cannot make them form into words
— Lyzdexizing words when I speak (“…left me there in the fiddle of the moor.”)
— Losing track of what I was saying and especially why
— Getting sidetracked by data or details that back up what I’m saying — they pop out my mouth and suddenly I’m on a whole new tangent
— Problems with summarizing or explaining entire concepts without getting bogged down in the teensiest minutia of details in every step (even though if you ask me to put things in clear, concise, sequential order, I’ll laugh at you and tell you how cute you are)
Listening to me tell a tale is like listening to Scheherazade. Eventually we’ll get there, but if you want to know the original point and ending of the tale, ya gotta stick with me through about 5 others. Good thing I’m a writer and there’s such a thing as a Delete Button.
Learning & Memory Issues
— Glitchy short-term memory
— For the first few years, I often would forget what had occurred a few hours ago, sometimes even a few minutes ago
— Missing chunks of long-term memory, mostly from late college and shortly thereafter
— Converting short-term memory into long-term overnight
— For the first 3 years after the initial car wreck in 2000, as well as the first years after being punched in the face (2012) and undergoing chronic seizures, I didn’t make many long-term memories
— When reading or listening, I blank out intricate details like full names, locations, titles, dates, etc. because it makes my brain glitch — I literally flinch in pain if I try to absorb them without going back at least once with specific, purposeful focus
— Those types of data rarely make it into memory
— Learning new phone numbers or addresses
— Remembering people’s names (I do much better if I can read them on a name tag)
— Remembering significant dates that are non-traumatic
— Learning new languages (which I used to be a wiz-kid at)
— Reading comprehension
— I often have to re-read long paragraphs more than once
— Remembering what I’ve read, especially once I’ve slept
— Doing even the most simple math when I used to do Algebra, Trig and Calculus in my sleep
— Transposing numbers (very bad in the days of checkbooks and when I was still trying to manage an internet company’s finances. I overdrew my own accounts horribly. I also overdrew my boss’s accounts by more than $1000 before they medically removed me from that job.)
— I have to see a movie or read a book about 3 times for it to stick
— BONUS, I get to laugh and gasp and groan all over again. That’s one of the only silver linings I enjoy from being Dain Bramaged.
— Massive dumping of important information that my brain has determined is unnecessary for survival because we just don’t have the storage space — usually to do with events that aren’t attached to warnings of potential trauma (so…happy memories, history, the goings-on of the world, details about my friends’ lives, things I’ve studied…you know, unnecessary and frivolous things like that)
— If something isn’t in front of my face where I have to directly deal with it, it may or may not exist for me until some external stimulus reminds me
—That’s really bad when it’s my friends and family. If they don’t communicate with me regularly, I can forget to do so for weeks, months, even years
I have basically lived in a walking-coma for the past 2 decades. It’s like the nurse’s station has the news on out there. I can catch snippets to glean the gist of the most major goings-on of the world. But usually forget them pretty quickly. Sometimes my friends come visit me and they tell me about their lives. Sometimes it sticks; sometimes not. I live. I laugh. I do a lot of cool stuff. But my memory after December 21, 2000 is one big haze of Impressionistic paintings. There are some Polaroids, and a few clear VHS clips (mostly around additional traumatic incidents — because that’s how the brain works on PTSD). Sometimes even reading my own journals or watching myself on video doesn’t jar the memory.
It’s a disconcerting thing when other people have to tell you about your life and the things you’ve done. I’m not as bad as 50 First Dates Girl. I didn’t lose the memories of the TBI incidents themselves, and I have my fuzzy paintings, but I’m close enough that this movie is a very good representation of what it’s like to try to have a relationship with me.
Spacial and Physical Issues
— Distinguishing left from right, up from down, forward from back — especially while I’m speaking those directions. My students all laugh now. “Your other left.”
— Hand-eye coordination (exacerbated by nerve damage to my right arm/hand)
— Depth perception
— Right side motor functions
— Spatial orientation, especially when my eyes are shut
— From the Post Traumatic Visual Syndrome, I still have horrible depth perception and peripheral vision
— I suck at estimating distances, especially in my periphery
— I often bump into things. My hips are magnets for corners, my aim for sports and martial arts is laughable, and — another dangerous one — I am prone to smashing my temples into corners of open cabinets or not ducking far enough under low-hanging beams. I’ve laid myself out — WHAM! flat on my back — more times than I can count.
Problems Being in Public Spaces
— I usually have the spoons to either attend an outing/social event OR do the drive. Not both.
— I have to be driven by someone else to overstimulating places like the grocery store and the mall, or on errand trips to multiple locations
— During failed solitary grocery trips, I have practically murdered the cart on my way out or almost killed the groceries as I literally threw them into the refrigerator — still bagged — and immediately face-planted for several hours
— I often avoid holidays, parties, large groups and special occasions
— I also leave them early
— Or sit in the corner where stimulus only comes from one direction and is more muted
— Sometimes I do this with earplugs in
— You know it’s really bad when I wear my sunglasses inside at night so I can, so I can…
— The best place in a restaurant for me is in the corner booth
— (Or hidden in the hush of the bathroom)
— Long dining tables in a restaurant or at a party are evil
— So are places like Walmart, Lowes, the grocery store, farmers market, etc.
— Convention centers are worse with their huge, echoey rooms
— Parties where conversations are overlapping in close quarters with ambient music and TVs around are the worst of all. (Did I mention that? I think I did up there with audio input. I may have also mentioned that I repeat myself.)
— Having to chronically tap out of my life, be antisocial, and be unreliable, flakey, etc. does nothing good for building relationships
— I spend about 75% of my life in silence and solitude
— In spite of being a social butterfly. I am an INFP. When I answer the questions as myself on a good brain day, I’m an ENFP. As a result, I am one of the loneliest people I know. This is one of the greatest instigators of my depression and suicidal tendencies: the isolation that my brain and body demand wreaks havoc on my heart.
— Trying to live with other human beings is a nightmare, because you can’t argue with brain damage. You can’t compromise with it either. My environmental needs have to override someone else’s preferences and emotional needs, and that is the most unfair bullshit to inflict upon someone else.
— So I don’t. I will live alone for as long as I can.
— People think they want to dance with me, study with me, train with me, be my friend, hang out, go do cool stuff together, gods help the ones who think they want to date me — until they realize they don’t.
— The amount of events that I cancel at the last minute is huge. But it’s better than being caught out in public where others can see the most disturbing and incomprehensible of my symptoms:
Behavioral and Emotional Expression Issues
All symptoms I previously listed in PTSD, which also can occur with certain forms of TBI:
— Drastic mood swings that come on in a snap (Jeckyl & Hyde)
— Explosions of violence
— Panic Attacks
— Feeling suicidal
— Hyper-sensitivity and overblown reaction to emotional stimuli
— Jumpy and easily startled
— Irrational phobias, paranoia, and suspicions
— Night terrors
All exacerbated by:
— Repressed memories from childhood trauma
— 24 years of pre-existing PTSD
— Damage to my frontal lobe, which made it impossible to compartmentalize emotions, flashbacks, and memories of past traumas in order to function within reasonable “normal” limits
In other words, I was a touch of River Tam for awhile there. Her brother Simon’s description from Firefly:
“You know how you get scared or worried or nervous but you don’t want to be scared or worried or nervous so you push it to the back of your mind; you try not to think about it….It’s like a filter in your brain that keeps your feelings in check. She feels everything. She can’t not.”
Yeah. That was me for several years. Sometimes it still is:
— Being unable to stop immediate emotional overwhelm (especially paranoia or flash-paper anger) in response to stimuli
— Controlling whether or not to an express an emotion
— Controlling the degree to which emotions are expressed
— Controlling how long the emotions affect me
— Broken Stop Mechanism — I have a hamster-wheel in my head and that little monster runs on the Energizer Bunny
— I have to knock myself out at night when I’m overloaded either with a sleep aid and/or with sound waves designed to induce sleep
— Think It Say It Syndrome is significantly worse if there is an emotional component
— Controlling The Animal Brain
— I’m hungry — eat it!
— I’m scared — run away!
— I’m threatened — kill it!
— Chernobyl-caliber neurological meltdowns that look like temper tantrums but are simply my neurology short-circuiting
— When that many stress chemicals are coursing through my system, my brain goes on seek-and-destroy mode, trying to figure out what the cause is. Alas, I have a full array of traumas, betrayals, losses and incidents in my past for it to latch onto and hamster-wheel, certain that this is why I feel like crap. NOPE. Just too many glitching neurons and a crappy chemical cocktail.
— Sometimes my body cries when I’m in a perfectly good mood
— Sometimes I look like Pris dying in BladeRunner. That’s really fun.
— Sometimes it’s only silent, full-body convulsions like I’m the rabbit that just escaped the clutches of the hawk
— And then, there is the Rage Thang, the beastie that I try to keep locked in a cage in the deepest dungeon, and that I pray daily nobody ever, ever, ever has to see. The amount of acrobatics I perform to keep that lock intact dictate the rhythms, schedules, and decisions of my entire life.
We’ll get to that.
So there ya go. All that from a few bumps on the head and from a neck that’s never had its natural cervical curve restored.
To look at me, I seem like a perfectly capable, healthy person. Maybe a bit eccentric and artsy, expressive and dramatic. When I open my mouth, that image begins to show the cracks beneath the spackling, especially the more sensory stimulating the environment.
No one has a clue the extent of compensation, advance calculation, avoidance, and pretending-to-be-calm that I do. Some things have healed with time; others have developed a re-routed trek through different parts of my brain; and then there are the things that are just as bad as that first week.
If you made it this far, I think you deserve unicorns. I know I do. (I also require some of these devices because…Dancer-itis on Dain Bramage.) 🤪
CHOOSE YOUR OWN ADVENTURE:
--UP NEXT: Understanding why having Complex PTSD on Frontal Lobe Damage is extra suckalicious.
--OR if you want to go back to the beginning of this tale - BLAM:The Night I Was Hit By a Drunk Driver
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