3. From Bella to Beast

Inside my brain when it crashes.

My first Day Nurse has brought a trainee with her. The trainee has brought a big ole IV with her.

You can see where this is going, can’t you?

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CONTINUED FROM:
—MY 5 DAY IN-HOSPITAL CONTINOUS EEG WITH VIDEO MONITORING - Because we need to make sure my seizures aren’t epileptic
—‘TRODES - They glue electrodes to my skull and strobe me

Metamorphosis: Imminent

May 6, 2024 - Day 1, Part 3 - 10:28 a.m.

Since I’m housed on Neuro Floor, it is standard procedure to fit me with an IV in case anything goes wrong during my hospital stay. That way, there’s no risk of them having to try to stab me while I’m flopping around doing a sizzling bacon impression (something I don’t do, and hope I never will), or while I’m being cold-cocked by the ghost inside my skull (something we’re really hoping to catch on this EEG and video), or any other unforeseen circumstance that would require them to poke an IV into me.

As my nurse subjects me to the standard gazillion-question admittance interrogation, her assistant is tasked with learning to jab me.

Thankfully, I have all sorts of juicy veins on my hands and the outside of my wrists—I am super lucky that way. But she goes for a deep one on the inside of my left forearm. After all, I’m going to have to sleep and operate for potentially 5 days up to 6 days while punctured by this thing so—

NOPE.

Alas. My nurse is across the room in the big reclining chair with her computer stand, letting her trainee attempt this on her own, and it gets botched.

After much wincing and flinching on my part, we have to take it out and start over. They decide it would be best to use my right arm this time, and to go for the juicy worm that is throbbing and calling that needle’s name on top of my wrist.

My nurse asks, “Do you want to try again?”

The trainee rapidly shakes her head. “No.” Her eyes scan the floor as though she’s seeking out potential dust bunnies or other derelict monsters that may creep out from under my bed to get me in the night. Her voice goes even softer as she tells my nurse, “You do it,” while tossing heaps of apology toward me.

I pipe up with a boisterous, “Nahhh!” Flashing my broadest, most innocuous grin, I waggle the worm. “Seriously. Give it another try. I’m totally safe to learn on right now. If you mess it up again, eh. It’s only pain. It’s only blood. We’re at the beginning of this whole adventure, so I have the Spoons to take it right now. Go ahead and take advantage of me while I’m safe.”

Totally safe.

Her eyes are huge, but a tiny smile starts to form on her mouth. My nurse’s encouraging beam is much bigger as she leans out from behind her computer to give a nod.

I chuckle. “I might not be so safe later on. Before we know it, I might sprout fangs and be cross-eyed, complaining about the fact that I have a head and that light exists. But right now? Psssssh.” I move my arm even closer to the trainee. “Seriously. Go for it. Only way to learn.”

With my nurse’s agreement, the trainee says, “Okay.” She hits me with a nervous-but-grateful grin, takes a deep breath, and nails it.

“Nice one,” I say, then wink. “Easy-peasy.”

You see, we have to do this while we still can: establish that I really am a caring, personable Beastie, because I have no idea how monstrous I will become during this ordeal. If that happens, I will really, really need these people.

I hate devolving into my most beastly form in front of anybody, but especially with people who are trying to help me. Unfortunately, I will not be able to do my normal human-avoidance maneuvers, stabbing one claw into the carcasses of my kills to drag them into the back of the cave where I can hiss, growl, eat my meat raw, and lick my wounds alone until I’m fit for human consumption again.

This room I’m leashed to is my cave, and my nursing staff will be in here every four hours at a bare minimum.

So while I still have semi-operational brains, I let them get to know affable, playful Bella, because it’s a very different thing to be given care by people who are charged with doing so because they’ll lose their income if they don’t, versus people who genuinely care while doing their medical jobs.

Remember that. It’ll be really important during my first experience with Night Shift.

After the trainee wraps up my IV for a potential week-long habitation, and my nurse finishes her interrogation, they draw two vials of blood to run all the standard tests on me, and update my med and allergy list, which is a little behind my current regimen.

“Are you having any pain?” my nurse asks.

“Actually, yeah,” I say. “I’ve had a stake stabbing through the back of my skull for a couple hours now. After those strobe lights, Magneto’s Helmet of Pain is starting to cinch down around my skull. I know it’s only gonna get worse from here, so if I’m allowed to have some headache meds, we should probably put that order in now.”

She orders tome Tylenol for me, and then they help me unpack. To be more precise, they unpack for me.

For Miss Independent, this is a generous (and more than slightly uncomfy) gift. Just like I had to do some convincing with the trainee about stabbing my worm, they have to do some convincing with me that—no, seriously—they are there to help me. They say I should sit in the bed, leashed up to my ‘trodes, and tell them where I want my stuff.

😳🥺😿🥰

Gulp.

So I do.

FEED THE BEAST

As this ensues, my breakfast arrives. Hoooo boy. The dreaded hospital food is—

*screechy record player sound*

Okay, I dunno what people are expecting for mass-produced cafeteria food designed for an enormous hospital complex. I dunno what people are expecting of the kind of food that big entities like insurance companies and Medicaid are willing to foot the bill on. But my breakfast is perfectly great.

My scrambled eggs are not nasty. The bacon smells a little weird, but tastes fine. The oatmeal comes with little travel-size brown sugar, milk, butter, and even a tiny plastic tub of cinnamon!

Yes. They have given me a spice that was once considered a luxury item so pricey that traders concocted all sorts of outlandish tales about where it came from to keep it secret.

And it is goooood.

To my dismay, I have to forgo the coffee because caffeine will be a no-no for the duration of this test. I’ve been trying to wean myself off it for the past two weeks, but DHS paperwork had to ensue just before I came up here, so that wasn’t gonna happen. Even so, I managed to reduce my intake to a single cup a day, rather than my usual two.

In place of the coffee, I ask for hot water so I can make some of the lavender tea I brought. For dessert, I mournfully pick the pineapple out of my fruit cup because, as much as I love it, I’m allergic to it. I finish by wolfing down the vanilla yogurt.

Nommmmm. GONE.

By now, I’m starting to get tired, which is a really good sign. This is one of the main things I’m here for—to track my sleep patterns, because ever since I started realigning my jaw with a TMJ splint, I’ve had a significant uptick in these…things I’ve had since very early on after my big car wreck in 2001.

Considering how hard I sometimes puncture my tongue or the insides of my cheeks when my jaws slam closed amidst these things, my TBI buddies, educators, medical practitioners, and pretty much any neuro-experienced person I’ve ever talked to has said that this is a very common symptom of seizures.

One of the most common times for these to occur is when one is just starting to fall asleep.

This is almost universal for me. There are a couple other types of seizure-suspicious things that I experience, but lately, this is one of the most alarming. Since the splint, I’ve started having these jaw-slams and spine-jerks just as I’m starting to wake up as well, and even in the middle of the night. They’ve also become incredibly frequent. So frequent, in fact, that they have been disrupting my sleep on a regular basis since last summer.

Sometimes I’ll have 7 to 12 in a half-hour, and finally have to give up trying to take the afternoon nap that has been my standard daily brain-reboot since my first TBI in 2000. I have to just get up and do something else until I get tired enough to try again.

When it’s really bad, I take a shot of NyQuil before bedtime to knock myself out, because if these things start hammering me hard enough, it becomes a catch-22 where my brains are scrambled, so I glitch, which wakes me up in a jolt, which scrambles my brains even more, which makes me glitch and—

I’ve learned the hard way to halt that hamster wheel in its tracks.

“Ohhhh, why don’t you just use ZzzQuil? That’s what it’s designed for.”

Because ZzzQuil hits me in a way my body gets very nervous about. I can actually feel its approach, and my animal-body kind of panics for a second before the drug takes me down. It hits harder, and keeps me out deeper and longer, which is why that’s what I used to use when I traveled overseas.

Jet-lag was absolute hell on my system. It’s hell on anybody’s system, but it always compounds my neuro-symptoms, and we need to stave those off for as long as possible while trying to perform the herculean feats of being a stage performer and workshop instructor on overseas steroids.

In the future, I’ll get way more into all the acrobatic apparatuses that I used to prop myself up with in order to do that job. Today, we’re going to stick with the troubles I’ve been having during daily operation in the quiet of my own home.

Because since last summer, this sleep-jerking, tongue-biting thing has become more and more frequently onerous. Then in the fall, the even scarier symptoms started. Dizzy spells that almost made me fall over, weird tingling in my spine that started collapsing my knees, followed by a numb left leg. The day it was accompanied by both a numb left leg and left arm, I pinged my primary doctor.

There wasn’t much concern about my symptoms. They scheduled me to come in and see her in a few weeks.

Ummm…

Blink? A few weeks? When Dr. Google is telling me that I might be having a stroke? Unfortunately, we had trouble with my Medicaid and had to delay even further.

Before I could get in to see my doctor, I wound up in the emergency room needing a CT scan because one of my pupils was dilated. It was actually my optometrist who noticed that and sent me to the ER.

So here we are. Testing my brain in a hospital up in Missouri, because nobody else in my region treats seizures and TBI, AND takes Medicaid.

LET’S GO PEE! WHEEE!

After breakfast, I have the nurses take me to the bathroom. They’re happy to see how capable I am of walking there. After watching my mom in the wake of her second stroke, and after two decades of hanging out with other members of Team Dain Bramage, I am super grateful that walking issues are not one of my common symptoms.

So I walk myself to ye olde bathroom with my nurse’s assistant holding the big blue bag of wires that dangle from the electrodes glued to my skull. Once I’m inside, she hands me the bag and rolls the door mostly shut, leaving the fat, cream-hued main cord trailing back into the room where it hooks up to the computer stand.

And lo, my first Performing Monkey potty dance ensues.

The first thing I have to figure out is what to do with that bag. I can’t set it on the floor because the ‘trode wires aren’t long enough. I would have to stay bent over at knee height to set it down, so I try hanging the fat cord on the towel rack. It is rubber-coated and it sticks. Woot!

Here is when I figured out the nifty trick of tucking my heart-monitor into the knee-high pocket of my pants, because those wires weren’t long enough to set the thing on the floor either.

At last, I have two hands with which to pull down my friggin’ pants. Double-woot! I’m tellin’ ya, it’s the little pleasures and triumphs in life.

Peeing: successful.
Wiping: accomplished.
‘Trodes: still attached.
Heart monitor—

When I go to pull up my pants, it pops out and clatters on the floor. Thankfully it doesn’t have far to fall.

Sidenote: This will not be the case every time, but…well…we do what we can to problem solve while we can. Because sometimes we can’t.

Heart monitor: re-corralled.
Pants: back where they belong.
‘Trode bag: retrieved from its jerry-rigged hook.
Bella: triumphant.

When I roll open the door, the nurses are waiting to help me back into bed. After teaching me how to operate the mechanized thing, as well as my room lights and the call station, they help me set up my computer on the rolling table. It’s shaped like a large, blocky C so the rollers can slide under my bed, while the table slides over my lap.

Then it’s time to leave me to myself and let me do my thang in the hopes that my brain will do it’s thang.

Bella & the Brain

Once they shut the door, an eerie quiet descends. It’s a sterilized kind of quiet. My tinnitus is super loud in here. I’m not sure why. It’s almost echoey, and highly irritating. But I’m as comfy as I can get.

So that my long hair doesn’t tangle and get caught in my gazillion cords, I herd it into two braids, and settle in for some leisurely writing. Comfort writing. I pull up my 80s kids doing 80s antics because I need some woobie right now.

Honestly, what I really need is to crash out and drool for many hours. After admissions and the strobe lights, my brain is sluggish and throbbing, but I’m not going to try to sleep right now, because the lunch lady will be returning at any moment to take my breakfast tray away.

When she finally does, she gives me a bunch of cheerful instructions on how to order lunch, then informs me that I’ll need to do this ASAP.

I—

Uh—

I can’t track half her words.

I blink.

Blink again.

She stares at me.

I glance at the menu she’s left on my table. Words won’t align, so the order of verbal instructions she just gave me certainly won’t. Those instructions are not reiterated anywhere on the menu. It’s all just food and drink items, as well as the number I’m supposed to call.

But that sequence of instructions she just gave me is way more than, “Dial number. Place order.”

There were specific time deadlines mentioned. Multiple deadlines. Because…multiple meals. Sequences. Numbers on clocks. Things I need to make sure what? Things. Things that I can’t remember.

She’s still staring at me.

I stare back helplessly. Toss off the tiny-cat “I’m drowning, please help me” smile.

She doesn’t smile back.

I—

I ask her to reiterate the directions. She does. Judging by her glance at the door and her frustrated sigh, she’s obviously impatient to get back to her rounds. This spurs her into speaking even more quickly, with even more shorthand.

My eyes scrunch tightly as I try to take it in, plus fill in the blanks of what she left out this time. I should write this down. I have nothing to write with.

Sidenote: Without warning, I have lost my ability to problem solve. It doesn't occur to me to grab my phone or type it into the computer.

I only know I have no long, skinny thing that puts stuff onto flat sheets of sometimes white stuff. But I have no flat white stuff either.

Paper.

Yeah.

Shit. It’s happening. It’s here, and the lunch lady is absolutely no help because she doesn’t get it at all. She’s looking at me like I’m either a troublemaker or there is something very, very wrong with me.¹

Uhhhhhhh…ya think?!

Hell

Okay, fine, it’s really only Neuro Floor.

Me: Twenty-Three ‘Trode Tilly.
Bed: hospital.
Location: Just north of Hell.

Ohhhhh, yeah, this is great. I’m starting to make punch-drunk humor IN mah head. At least it’s not falling out my gob. No hysterical laughter either.

Yet.

Yes, good lunch lady, something is definitely wrong with me and I can see, after my almost quarter-century of residence on Planet Dain Bramage that, although she is perfectly nice, she is one of the people who doesn’t get it. Won’t get it even if I tried to explain it, and I would only make things worse if I tried to educate her about the nuances of my brain glitching WHILE I’m having a brain glitch.²

Doesn’t matter. I have no idea how I would explain that anyway because explanations require words and mine are—³

Neurons: failing.
Mouth: offline.
Eyes: glazing.
Hearing: vaporized.

BRAINS HAZ BROKEN.

CUE KLAXONS.

RE-ROUTE EMERGENCY POWER:
PUMP ADRENAL GLANDS.
NOW.

Vision: stabilizing.
Pulse: elevating.
Breathing: elevating.
Temper: elevating.

The echo chamber of my mind suddenly reverberates with the strains of “what the hell and why are you working in a hospital and stay the fuck off neuro floor if you don’t understand how neuro floor is and why can’t i hear you anymore even though your lips are flapping as you try to get it through my thick skull and you fucking drunk driver who did this to me and you fucking testosteroney abuser who heaped it on twice-over and these ‘trodes already itch and now the back of my brain is itching and that’s a really bad sign and shut up ear-ringing and why won’t you work right and damn you STUPID TBI AAAAAAGH!”⁴

Blessedly, I retain enough executive function to keep all that from projectile-vomiting out my gob. I cling to my mantra.

Just keep silent.
Just keep swimming.
Just keep silent.

I force the corners of my mouth into an upward position with my teeth clamped shut around every word that could fly out. I lock-n-load the smile. I can feel that it doesn’t make it to my eyes. I don’t give a flying flip. Because my throat is closing now. My eyes are stinging with pre-tears. Too much pressure inside the heart and head. I need to blow. Everything is starting to short circuit. It’s too loud. I can’t hear. It’s too big. I need to scream into my pillow. I need to bawl and drip snot off my chin—

Nope. Not gonna do it.
Wouldn’t be prudent.
Not at this…
Juncture.

Shoving it all into the deepest crevices of me, I make my head move up and down as though I can hear the lunch lady’s words.

They are nice words. Helpful words. I can tell by her body language, even if I’ve lost the ability to actually hear anything other than the Peanuts teacher going, “Mwoh-mwoh-wah-wah-mwooh.”

Once the mwoh-woh ceases for long enough, I know that’s my cue to grit out, “Thanks,” over the lump clogging up my volcanic spew.

She really is a sweet lunch lady, and she casts me an encouraging smile before whisking my tray away and shutting my door again.

Silence.

No.

High-pitched ringing.

I feel like one of those smudge-faced, shredded actors in an action flick, reeling from a bomb blast with the camera gone kitty-wompus and the screen out of focus, because really, I kind of am. I am that detached from what’s happening on the screen of my life, and the bomb did go off.

It was just inside my skull.

And that’s how quickly it can happen.

I stare at the menu. Try to remember. Try to figure it out. Magneto’s Helmet of Pain compresses my brow bone down over my eye sockets. Eyes are squinty. Room is too bright. Soft yellow lighting and it’s still too bright. Feels glaring. My face is sorta sliding down my cheeks and forehead. All the skin is too heavy. Too saggy. My breathing is heavy, too. Slow. Lethargic. The energy-conservation breathing.

I need to sleep. Too keyed up on adrenaline. No way it’ll happen right now. And she said I need to order my lunch ASAP.

So I finish doing what I was trying to do before she came in: trying to hook my computer up to the wi-fi. It takes me 10 minutes to figure it out but I finally get it. I view the Hospital Stay Video in the hopes that it’ll teach me how to order lunch. It doesn’t. At the very end of the video—

NOOOOOOOO!!!!!!!!

They sign off with the Overly Cheerful & Triumphant Tune that was the dreaded soundtrack to my months and months of being put on hold, transferred, dropped, put on hold, transferred again, and told there’s nothing anybody can do to help me even thought that was a bunch of bullshit.

This is skull bullshit.

Trying to remember more than three sequential directions so I can place one stupid, asinine, tiny little godsdamnedmotherfuckingpoopsucking lunch order is BULLSHIT!

I need to sleep before I even attempt that. If I miss lunch, fuck it. That’s what the evil, cackling neuro-gods made munchies for. I brought enough of them, in case the food here was inedible, so I’ll just have to call for somebody to come in here and haul them out of my suitcase.

I text myself the latest and greatest notes of this fiasco. I’m so wiped out that my shorthand doesn’t even have any profanity in it. Zero emotion even though it’s all swirling around in the back of my mind and out there on the outskirts of my body. Thankfully, I have no energy to even access it.

I am in full-on Exhausto-Spock Mode.

Squinty-eyed, I notate the bare skeleton of events over the past hour because these memories will self-destruct in 15 minutes. If I don’t have an external reminder to help me bring them up to the desktop, I’ll never be able to access them and tell you this lovely tale.

Bed: buzzzzzzz down flat.
‘Trodes: safely tucked above head.
Heart monitor: stuffed into pocket.
Lights: stab, stab—out.
Eye mask: ahhhhhh, semi-dark.

BELLA HAS OFFICIALLY
LEFT THE BUILDING.

ENTER: THE BEAST.

Let’s see if we can lure it to sleep so it doesn’t eat anybody, shall we?

UP NEXT: OCEAN GYPSY - A deep dive into what living with my brain injury FEELS like. Because if you don’t know, you can’t know. And if you can’t understand me, how can we possibly connect on anything but a surface level?

The next posts are actually migrations from my Olde Blog. It’s the Supercomputer & Mermaid series about lost memory, functionality, and the dampened, muffled underwater realm in which I now dwell.

© 2024 Hartebeast

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You can find the previous posts in this EEG series, as well as all my Dain Bramage tales here:

1. Audio Processing Disorder after concussion

2. Cognitive impairment after TBI

3. Aphasia - disorder that can impact speech, writing and comprehension of communication

4. TBI 101: Behavioral and emotional symptoms - a.k.a. The Rage Thang. Around here, we call this The Beast.