4. Brain Games
Over and over, I have to push the seizure-alert button during my EEG
PREVIOUSLY: 3. FROM BELLA TO BEAST
In case you’ve never read the preceding EEG chapters, or even if you have—our tangent was a long, complex flashback series, so you’d understand the things that brought me to that hospital room to begin with.
Feel free to skip ahead if you remember where we left off with my brain hooked up to ‘trodes and a video camera Big-Brothering me 24-7 with its one looming black eye:
EEG MORNING 1:
Neuro Floor is so friggin’ amazing with me! From admissions to the ‘trode techs to all my nurses and their assistants, it is a revolutionary experience to be treated with such care in the healthCARE system. They don’t let me haul all my stuff around while attached to a gazillion cords and an electro-leash that confines me to the computer-and-video-camera stand. They even help me to the friggin’ bathroom.
Alas. The lunch lady is not Neuro Crew. I ask her to reiterate the directions on how to order lunch. 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.
After all the admissions rigamarole and months of seizure sleep-dep, this is the final straw that crashes my brain. Which is actually a good thing. It’s exactly what we’re trying to capture on EEG.
But now the lunch lady is looking at me like I’m either a troublemaker or there is something very, very wrong with me.
Yes, good lunch lady, something is definitely wrong with me—this is the Threshold of Hell—I mean Neuro Floor—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.
Neurons: failing.
Mouth: offline.
Eyes: glazing.
Hearing: vaporized.BRAINS HAZ BROKEN.
CUE KLAXONS.
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?
MAY 6, 2024
DAY 1 OF MY 5-DAY IN-HOSPITAL CONTINUOUS EEG WITH VIDEO MONITORING
11:01 a.m.
I attempt to sleep a little before I make another stab at figuring out how to order lunch. Those jaw slams and body jolts keep waking me up. I’m just finally getting The Beast’s heart rate down enough to snooze when—
11:38
My nifty, snappy little nursing assistant pops in to check my vitals. Again.
(Sidenote: Vitals check is about to become the bane of my ability to sleep. On Neuro Floor, they have to do this every four hours. It is Neuro Floor Law.)
After that, she patiently walks me through the lunch-ordering thing like the Neuro-Glitcher I am. Bless her!
I try to sleep. Again. Most of the twitches have been small today. But then I had a big one so I pushed the EEG button just in case.
“Don’t be afraid to push it too much,” EEG Crew told me when they glued the electrodes on. “It’ll put a marker in the feed. Then the neurologist who reads it will know to take a look at that moment and see if anything epileptic is going on. If you feel anything, no matter how small, push the button.”
Well, all righty then.
So I do.
Before I can fully crash out, my nurses come back in to give me a shot of blood-thinners in the belly, since I’ll be in this bed for possibly five days straight.
Wait, what?! You wanna shoot WHAT into my WHERE for how many chocolate-covered peanuts? No way! I will not need that, because I plan to be up and moving and stretching, once my brains are back online and they’ve given me clearance to resume my PT.
While the nurses are here, I take the opportunity to pee, because I’m not yet allowed to get up off this bed without assistance.
(Another Law of Neuro Floor. The bed will light up and yell all the way out to the nurse’s station if I so much as twinkle my toes down on that floor.)
They help me carry the bag of ‘trodes and wrangle all the cords while I deal with the heart monitor. Once I have the bag safely jerry-rigged, dangling from the towel rack with enough slack that I can sit down on the toilet, they leave me to it.
Woot. My triumph of the hour: I peed all by my big-girl self!
Okay, kinda by myself. They’re still lurking out there, waiting for me to finish. Highlight of their day, no doubt.
11:47
Try to sleep again.
11:52
No sleep. My lunch arrives. They bring what I ordered, as well as the auto-order that I was too late to prevent. Curses. The lunch lady gives me the evil eye over it.
I smile sweetly, like I’m a vacuous little neuro-patient, blissfully chewing my clueless cud.
Behind my toothless, lip-zipped grin: Bite me. This is Neuro Floor, yo!
I had warned her that I didn’t understand all her instructions but she just growled at me and treated me like I was a pain in the butt, so they can deal with it. Now she’s looking at my computer and stuff all over the table like, “You need to move all this crap so I can set down your lunch.”
Dude. I am the one who is not allowed to get out of this bed without assistance so WTF do you want me to do? Have you never actually served lunch on Neuro Floor?
I flash the ever-so-helpful-smile, then move the computer between my legs and put my mouse and stuff on top of it so she can roll the table over my lap and leave me with my lunch tray. Excuse me. Trays.
Alas. I chucked my baggie of assorted teas on the couch and now I’m all pinned in here, so I can’t get it. I am NOT calling for somebody yet again.
Whatever. I’ll have liquid later.
Right now, I am more than hungry. I’m flippin’ hangry. And I’ve had the classic stake jammed through my skull since before 10:00 a.m. They still haven’t brought me the promised Tylenol, so now my head is being compressed by the full-on metal vice.
Magneto’s Helmet of Pain has descended.
Halfway through eating, I have to call the nurse’s station to get somebody to shut my door again because the lunch lady left it wide open and it is so loud out there with everybody coming and going, all the beeping and carts and gurneys rolling.
In the silence and semi-dark with my blessed food and my pounding head, I realize that I forgot to ask for help getting my flippin’ tea while they were here. I can’t have coffee at all—nothing with caffeine for the duration of the test. At least I could have steeped some woobie lavender tea, but no! It’s too far away and there’s not enough hot water anyway—the cup is only half-full. Pretty much how I feel about everything right now so I have a nice little cry instead of my damn tea.
Excellent.
Pressure Relief: achieved.
Better out than in. Woosahhhhhh…
12:21 p.m.
After I feed the Beast, I push the table away from my lap, corral the computer and its accoutrements down at the bottom of the bed and try to crash out with my nice full belly and my post-cry relief.
12:26 - Jaw slam.
I decide to start documenting every one of these incidents that are significant enough to warrant me pushing the button. The act of having to also fumble around for my phone, swipe it open, and type before trying to sleep again is undoubtedly helping to prevent my body from sleeping, but that’s exactly what we’re here for, right? This is not a vacation. This is to scan what is happening inside my skull when I am forced into adverse environments that I can’t escape and my brain starts freaking out.
Besides, the faster it gets taxed, the faster and harder the symptoms will hit, which means the faster Neuro Floor will get to see what I’ve been describing for 24 years, and the faster we’ll get an answer. (The faster I might be able to get out of here, too!)
So every time I hit that EEG button, I jot a note of what specifically woke me up. Plus, some of this stuff is really small in the body, no matter how loud it is inside my head, so it might not be obvious what woke me on the video.
Now we’ll know:
12:32 - Neck/spine jolt
12:38 - L leg jolt
12:43 - Jaw slam
12:50 - Big jaw slam
1:02
Lunch lady busts in to take my tray away. Annnnnnd now I’m fully awake. I call for the nurses to help me set up in the lounger chair with the rolling table and my computer. They readjust the video camera so it can capture me over in the corner.
Still forgot the flippin’ tea.
3:31 - Pushed my table away and kicked the lounger up. Trying to nap in the chair. Big R hand thrash and head rush.
3:37 - Just starting to conk out: vitals check. Blah.
3:46 - R hand and neck jolt.
3:52 - Can’t sleep. Screw this. Getting back up to play with some Wrecker.1 Not really able to write, not alert enough to genuinely edit, but at least messing with my fictional 80s world and characters helps pass the time and lets me pretend I’m somewhere else for a bit.
I want coffee so baaaad!!!!
5:07 - Falling asleep in the chair again - neck and R hand
5:12 - Jaw slam with spear through L eyeball
5:22 - R jaw
5:26 - R jaw
5:32 - L hand. Screw it. Back to the 80s on my computer, maaaan.
6:46 p.m.
The staff are switching out Day Crew to Night Crew. As my new nurse looks me over, she blinks hard. Screws up her face with that same kind of bafflement that hit Day Crew upon our introduction. But then she looks down her nose at me.
My heart skips a beat.
I know that look.
I’ve lived with that look for the past 24 years since I was in the ER after being rammed by a drunk driver, when I hobbled out to the nurse’s station to tell them that it felt like somebody had just jammed a knife between the vertebrae of my low back. They rolled their eyes. “Oh, it’s just a muscle spasm, you’re fine,” they said as they shooed me back to my room where I stared cross-eyed at the police report worksheet. Couldn’t understand why I was suddenly incapable of reading it because they kept telling me I was “just fine.”
In fact, I was not.
In fact, I’ve lived with that look all my life, every time I’ve tried to say something is too loud, too bright, too hot, too cold, too scary, too anything.2
“Ohhhh, that can’t be hurting you. It’s not that hot. See? It’s fine.”
“Ohhh, you just need a thicker skin. You’ll warm up if you just keep moving. Get in there. You’ll be fine.”
“Ohhh, there’s nothing to be afraid of. They’re not going to hurt you. You’re fine.”
No. I was not fine. They did hurt me. It did burn me. And my teeth never stopped chattering no matter how hard I swam until I climbed out with blue lips and got a towel around me.
That “pooh-pooh” attitude is exactly how my new head nurse is looking at me now.
All over again it’s, “What the heck is some young spring chicken as fit, muscular, un-marred, vibrant, and outrageously dressed as you doing in the hospital? Don’t you know that there are people who have reeeeal health problems who need that bed? Where’s that silver-haired 76-year-old guy you came in here with?”
Sorry to have to break it to ya, babe. My dad is long gone. Only us Cracked Quackers in here.
The Night Nurse exchanges looks with her assistants. As they flip through my chart, her eyes go huge. Then she gawks at me again. “Wow. Looking at you, I would have thought you’d be, like…32…35?”
Yes. This is usually the assumption. I nod.
“But then we looked at your chart.”
Yes. I was there. I just watched it happen. As sleep deprived as I am, and now considering that there are neurological stakes jammed through both of my occipital bones and out through both of my eyeballs, I don’t really know what to say to that. Not sure I’d be able to form the proper words to communicate my thoughts and feelings. Probably best for everybody involved, so I shrug, then try to blink-brighten my eyes. On with the sweet smile—toothless and vacuous, of course.
Considering how much of my brain has dribbled out my nose in the past seven hours, I can do vacuous pretty well right now.
(Can do Toothless pretty well, too. You know that’s one of my nicknames, right? As in…the teensy, dark, dorky dragon who shoots light-beams, has retractible fangs, and needs a makeshift tail-fin to fly...) 3
The Night Nurse just frowns.
Since my Day Nurses are still here participating in this turnover, I take my last opportunity to get some willing and pleasant help back to the bed. Alas. They bid me goodnight and leave me with my new caregiver.
Can you hear my eyebrow from there?
As the Night Nurse turns her back on me and leads the others out, I finally hear her say it out loud. That thing she’s been shouting with her scrunched up nose, her side-eyes, and her overloud thought-bubbles.
Until she’s no longer in the presence of another Head Nurse.
“What is she even doing on this floor?” she sneers. Her assistants shrug and give me their own side-eyes in lemming mode.
My narrowed gaze tracks this woman across the shadows of the room.
Ya know, a professional, respectful and caring healthcare practitioner would just ask what brought me here in a professional, respectful, and curious manner. Like Day Crew did.
I wish I was capable of speaking those words.
She’s gone anyhow.
At least she closes my door. I hunker down under the covers and start in on some breathing exercises. Put the Delta Waves back on to at least try to calm my neurology down, even if I can’t truly sleep. Because I can see it coming down the pipe already. I’m gonna need as many Spoons as I can possibly rustle up to deal with her tonight.
Do you have any idea how sick I am of having to defend myself from the very people who are supposed to be helping me?
On with the brain games and—
🤨
Have I mentioned how exhausted I am with telling you this stupid flippin’ story? I keep trying to figure out how to end this stupid flippin’ chapter. For weeks!
Seriously. This crap happens so often—and has happened so often for half a century—that I’m out of innovative ways to tell you SSDD in any way that is inspirational. Uplifting. Motivating. Hope-inducing. If you’ve been around here for awhile, you have to be sick of hearing it. I mean, if I’m sick of it, you have to be wanting to chuck my writing aside with an eye-rolling, “Ugh!” as you wait for something new to happen.
And it does. New stuff happens all the time.
And yet, no it doesn’t. As such, I have no idea how to wrap this crap today because I am burnt the bleep out.
You know the drill. Shall wrap up with the humor route? How about the self-righteous social activist mic-drop? We could go with the plucky raised fist of RAWR! What has it been? 3.9 days since we hauled that one outta the barrel?
OK, folks.
Time to buckle down and knuckle up.
(Or is that knuckle down and buckle up?)
Let’s all chuckle and truckle on.
Don’t forget to duckle what got chuckled
At mah head hardee-har.
Let’s bucky the system!
Get plucky and RAWR!
Maybe if I’m lucky
It’ll stop with the sucky.
Sorry so mucky.
Definitely not duckie.
It’s yucky, let’s hucky this load.
✨💩✨
Yes. That’s me, punctuating with the squarshy, squelchy wet-fart noise. Definitely a shart noise. A quite typical Hart noise—
Ohhhhh, no.
Now that we’ve fed my right-brain a couple bones in its eternal craving for rhythm-n-rhyme (it took up the slack when my left-brain’s verbal center got bashed against a car door frame, so it gets a little ridiculous if I give it its head), I’m gonna have to haul back on the reins to stop it from going off again.
None of this is unexpected. Because I’m still putting my life back together after the death of my mother, I’m still recovering from knee surgery, and I did have to rustle up that mitigation by Disability Rights to reapply with heating assistance after all.4 Two days ago, I triumphantly turned in the updated mound of paperwork, as well as the even more ridiculous tree-slaughter in my bi-annual begging for Food Stamps.
So naturally, I face-planted yesterday afternoon and performed a very nice rendition of a corpse for four hours straight. Woke up with a migraine. Remained worthless for the day.
We do this at least every 3-6 months.
But hey! Now that this season’s applications are all filed and baking, awaiting scrutiny and interviews, I will finally get to resume my life once more. Woowoo!5
First step: I need to recover Spoons, so I’m gonna leave this stupid chapter where it is. I mean, someday I’d like to get to the results of that EEG instead of slogging through what it’s like to need one, and what it’s like to have one.
Best thing I can do to recover: rest, eat good food, rest, take a bath, put on my Suckalicious Playlist, and kitchen dance to it.6 On mah one pirate peg-leg, yarrrr!
Here’s one of my long-time pick-me-up songs when I’m sick of my own dang story. Are you rawring? Yarrrring? Are you dancing? I sure hope so.
UP NEXT: We finally get a seizure big enough for me to push—not only the EEG button—but the button for the nurse’s call station. Alas. THE NIGHT NURSE is still in charge.
The Night Nurse
While the Night Nurse is here, I ask her to help adjust the video camera so I can move back to the lounger chair. She says it doesn’t need to be adjusted—that it’s motion-sensored and will track me as I move around the room. I inform her that I’d been told I wasn’t allowed to move around the room without assistance, and that it has never moved on its own once since I’ve been here. As she tries to convince me that I must not have noticed, she glares at me like I’m annoying and crazy and nothing but an overly theatrical attention-seeker...
The type of seizures I’d been having all day:
All The Brain Games:
© 2025 Hartebeast
The Wreck Room - the 80’s tale fiction I was playing with while in the hospital.
FFS, NeuroLaunch! That much distracting ad flashy-flashy on an otherwise really great article about The Hypersensitive Nervous System? Sheesh! Guess I’m getting in my cognitive resilience training today.
Resume my life: I’m trying out Campfire for my gobs of fantastical tales, since Substack isn’t terribly keen on fiction. And I’m getting very close to launching a Sunroom so you can enjoy all this happy-crappiness up close, way too loud, and personal on video. When it’s live, my handle will be BellaDancer.
The Suckalicious Playlist. For when I’m snarky and hacked off over a wide variety of inspirations. Dancing to it sometimes looks like this. 2019 - that time Medicaid never sent me my crutches:
Hey Good Lookin'
Neil Oberg (UMD) here dropping you a line. You certainly put the "AD" in adversity. At the same time, you put "RES" in resilient. I have read your story in bits and pieces, and I must say that all of it runs the gamut from heartbreaking to funny back to enraging then back to inspiring. I hope there are enough people in your life that point out the fact that YOU ARE A PERSON FILLED WITH WONDERMENT AND GRACE. I can't begin to express my admiration for how open you are - not only from your desire to express yourself but also out of sheer necessity to keep things straight in your head. I don't suffer from your condition, but I can tell you that there is not much up in my brain pan except for Blade Runner quotes and Metallica lyrics. : ) No matter what you do, I hope you never stop creating.
I think what you said at the end about not being able to wrap the chapter up is actually super important. Sometimes, things don’t wrap up neatly. Our lives can be messy chaotic whirlwinds of shit, and as writers we want to put some nice bow on it. Dots the ‘i’s and cross the ‘t’s and make it look pretty even when it isn’t. And so, I think it was a radical move to acknowledge that and not put a nice bow on everything. :)