2. 'Trodes

For my 5-Day in-hospital continuous EEG with video monitoring

’Trodes.

May 6, 2024 - Day 1 - 10:06 a.m.

The glue to affix EEG electrodes onto one’s scalp REEKS. I mean, like…it’s nasty. In preparation for this procedure…

Ordeal?

Tribulation.

I definitely don’t call this a “test.” Although a 5-day continuous EEG with 24-7 video monitoring is testing to a patient’s patience, that one little syllable seems too paltry for the experience. Because unlike its 2-hour cousin, this procedure is an exercise in endurance.

I gotta keep singing Patience, man. It’s become my temporary middle name, so all through admission into the hospital and the installation of my ‘trodes, I muster up as much of my tap-dancing, joke-cracking Performing Monkey Girl personality as possible.

In fact, I’m fascinated by this whole thing.

Once I’ve been checked into my room, had my introductory meet-n-greet with my nurses, and sent Dad zooming back to the comforts of home, Curious Monkey Nerd-Brain begins peeking her head out from under the locked wheels of my utilitarian bed.

I’d really like to zonk out, considering the fact that I only got three hours of sleep the night before, and was prevented from rebooting my brains yesterday in the standard afternoon nap. Both of these sleep attempts were foiled by jaw-slamming, spine-rocking jolts and the blinding head-rushes that keep waking me up. Over and over and over and…

At least I haven’t bitten my tongue or the side of my cheek this week. Since this has been happening so often in the past year, my body has learned where to store my tongue during sleep, and it knows how to prevent my head from lolling off to the side—gravity is a real thing, after all, and cheek flesh will dip between my teeth if my head is turned while all facial muscles relax.

So now my body keeps my head pretty aligned (I sleep motionlessly on my back like a corpse with only a neck pillow), and it tucks my tongue into a low position nowhere near my teeth so I don’t chomp down on it when my jaws slam closed or my spine jerks.

This is what I’m in here to assess: whether or not these phenomena and a couple other of my alarming symptoms are epileptic.

Provided we can catch them
on camera and on ‘trodes.

I’ll be honest. I’m really hoping we can finally rule it out because…well…

Epilepsy.

Once my room’s thick, heavy door is shut, the noise from the outside hall, adjoining rooms, and other floors is surprisingly low. That was another concern I’d had—that I wouldn’t be able to sleep because of the noise, along with being in a room that doesn’t go completely black at night.

As such, I’d made sure some Delta Waves¹ were downloaded onto my phone so I can try to knock myself out with them even if I don’t have wifi access. Those kind of sound vibrations were a huge part of my survival tools against jet-lag when I used to be Performing Stage Monkey Girl, so I hope they’ll help me here, too.

I also asked if I could wear a sleep mask over my eyes for this procedure, or if that would interfere with things they needed to catch on video. Nope. I’m allowed to wear it. Woot! So I put it on and try to chill, enjoying my last minutes of lying down on my actual skull instead of a fancy headdress of ‘trodes.

The nurses have informed me that some of these EEG machines don’t have cords long enough to reach the bathroom. You know what that means, don’tcha?

Squatting over a silver commode. That’ll be fun.

Eh, I’ve pooped in worse places. And hey, it would be just like when my cousin and I used to have to use the pretty porcelain chamber pot with the blue flowers on the lid because her bedroom was at the top of a long, steep, multi-cornered staircase, and we were…what? Five and three? Six and four? Well, we were not allowed to come down those stairs at night, so we had to poop in the pot.

Joy-joy.

I’m just starting to get sleepy when the pair of EEG guys arrive with the electrode supplies and a towering, rolling monstrosity of keyboard, computer screen, and metallic frame topped with a bulbous, black device. This device reminds me of the huge, swiveling, bally-hoo lights at Crystal Bridges’ North Forest Lights extravaganza.² But this is not a light.

It’s Big Brother.

Seriously. This video camera will be watching me day and night. The tower also has a mobile arm with something I definitely recognize. cue spooky music…

The strobe light.

My favorite.

😫🫣🥴

But hey, that’s what I’m here for.

The stand with Big Brother, the monitor screen, the evil strobe light, the 'trode pack and leash.

The guys from EEG Lab are a bit younger than I am, friendly and talkative as they roll over my big C-shaped bedside table to do this to me:

Yup, my guys are equally experienced in putting their patients at ease. One of the first things the lead tech says to me is, “Huh, so after I talked to you on the phone last Monday, sounds like they still didn’t get this test set up right for you?”

I roll my eyes and go through the fast-n-furious version of how I finally got myself scheduled with this room and this bed. He confirms that if I hadn’t stayed on top of that all week the way I did, my dad and I would have driven up here for nothing, and I would have had to go allllll the way back to the beginning of my months-long scheduling nightmare.

Mmmm-hm. Precisely why Squeaks McSqueaktoy never ceases squeaking until satisfactory results ensue. (I never squawk, ohhh-no, but I do occasionally growl. And I employ a whole lot of humor, patience, and kindness, especially to people whose fault it is not.)

(People like my EEG techs.)

In order to affix all these electrodes onto my scalp, they use little pieces of gauzy mesh soaked in a pungent, bees-up-the-nose chemical solution, which they then blow dry.

“Wow,” I remark, eyes alight with curiosity over the procedure, equally repulsed by the stench, “that stuff really reeks.”

They share a cringey look, and the lead guy tries to smile. “Yeah, it’ll…uh, it’ll tone down after a bit.”

I chirp off a noise of non-concern and wave away my discomfort. I mean, they’re setting me up for an intensive hospital procedure, not a fun zipline escapade off Pike’s Peak.

Seriously? They could be sticking things up my butt. They could be cramming things down my throat. They could be watching—no, they could be having to help me poop. They could be jabbing me, stabbing me, slicing me, dicing me. There are so many more awful things they could be doing to me in this heinous building nobody likes having to visit, so the surprising degree of reekitude from that glue is like brushing off a mosquito of concern.

Annoying, to be certain. Uncomfortable? I guess. But temporary and so flippin’ minuscule. Heck, I endure worse discomfort inside my own skull and spine on a daily basis so…whatever.

Sidenote: if you’re hypersensitive to strong smells, especially chemical reeky stuff like my mom is, just know. It’s really strong. And it lingers. The nurses were still commenting about it a day later. But they were right. It does dissipate. Eventually.

So the lead guy calibrates the machine while his assistant covers me in stinky glue, gauze, and wires. Curious Monkey chatters on, pelting them both with a gazillion questions about everything they’re doing and why they’re doing it and where and when and what it does and how it works and…

They laugh and answer this interrogation to my full geeky delight.

Next, they affix a number of patches onto me—one on the left shoulder that runs to the electrode pack, and a bunch more on my chest and ribs that run to the heart monitor.

Rrrrawrrrrrrr! How ya like me now?

At last, they give me the instructions for my foreseeable future.

Remember these. They’ll be important later.

Joyous of joys, I am not leashed to the bed! But I will be required to call for a nurse’s assistance to help me carry the pack wherever I need to go.

For some strange reason, today’s rainbow-hued clump of wires looks sparser than the one I had back in January, and especially that first one I had just before leaving Colorado in 2013. I dunno why. But nope. It’s the usual 23 ‘trodes.

This pack, however, is affixed to a large blue slingy-type bag that is usually used for some other kind of monitor. (I’m pretty sure he said heart, but I didn’t write it down so…thfew-thfew-thfew… That’s the sound of information fluttering off into the aether, never to be heard from again.)

He warns me not to use it the way it is customarily used—not to hang it around my neck. He says that it could mess up the wires and weaken their connection. I am instructed to hand it to a nurse unless they deem me stable enough to carry the thing myself whenever I need to get up.

And yes. It is long enough to reach the bathroom. Whoo-whoo!

He says that, whenever I change location in the room, I will also need to have the nurses help me move the camera so that it catches my every flippin’ movement.

Except the bowel-type. I can do that in private. I can also take wipe-baths in private. Since water near the ‘trodes is a no-no, I am not allowed to shower and I am certainly not allowed to wash my hair until Dobby is set free, possibly in five days.

I’m hoping they’ll catch what they need to early on, and this adventure will be way shorter than that.

---

A NOTE ON CLOTHING

In my original prep literature, they had warned me not to wear any sort of shirt that had to be taken off over the head because that would start ripping off ‘trodes. All shirt items would need to be front-closure, or they would be on me for the duration.

A couple days in the same shirt? Eh. No biggie. Five? No.

So I had brought layers for my freeze-baby protection, or on the off chance that it was actually warm in my room. Well, it was. So I was glad that I’d worn The Hoodie of Many Colors, my light long-sleeved fishing button-up, and a tank top that I could peel off the bottom-route.

Ohhhhh, how slick I thought I was! I mean, they said I couldn’t take it off over my head, so—

NO.

Nice try, Hyper-Literal One.

With how they had to weave those wire-laden monitor patches under the straps and up under the bottom of the shirt to get at my shoulder, chest, and lower ribcage?

Le-heave-of-disgruntled siiiiiiiigh.

There would be no removal of that tank top or the bra I had on underneath it. Because nobody had said anything about the heart-monitor. At least it didn’t have sleeves to sweat on and get all stanky. Even getting the hoodie on and off was a pain in the butt to keep from yanking the wires.

Just so ya know.

And let’s face it, that heart-monitor was the bigger problem, shirt-wise. Alas. Unlike the ‘trodes, it did not come with its own carry-pouch that I could hang from an elbow or from the towel rack in the bathroom. Neither were its cords long enough to reach the floor while I was standing. Peeing? Yes. Standing? No.

When I had two nurses, or even one, to hold my machine-leashes, this was not an issue. Then it was just the dance of cords, people, furniture and doors from one end of the room to the other. But once I was eventually granted leave to get up and pee by myself, it became an acrobatic solo-dance of maneuvering all that crap while trying to get my pants down, yet not rip out wires or drop expensive medical devices that had no carry pouches.

Blahhhhhh…

In a miraculous act of unconscious foresight, I had at least worn the gray fuzzy-pants. These pants have large, loose-flapped pockets off the sides of the thighs. Just the purrrrrfect length to keep the cords of that heart monitor loose, but also out of my flippin’ way.

Me and my leashes: getting creative.

Seriously. If you can, wear only front-closure shirts, as well as comfy pants that can be yanked down and up easily with one hand, and that have a big ole pocket where you can stuff the heart monitor.

This has been a PSA from your Friendly Neighborhood Take-One-For-the-Team Monkey

💖🐵💖

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BACK TO OUR PROGRAM: STROBES

After the guys get me all hooked up and instructed, it’s time for my favorite portion of any EEG: strobe lights and hyperventilation.

Yeah, baybeee! Yeah!

The guys press the handy-dandy button to raise the bed so I can sit partially up with a pillow behind me. Then they move everybody’s favorite rectangular, metallic arm in front of my face.

They kill the lights and hit the strobe.

These light patterns start out kind of slow and heavy. You withstand this test with your eyes closed, thankfully. Doesn’t matter. All that flashing, flickering light still gets through your eyelids like juice through a sieve. Later, the patterns become downright jittery. Those are some of the worst for me, just like being under a subtly shaky fluorescent light can sometimes be worse than the heavy strobe of police lights or the Marvel movie cartoon reel.

There are times when I can’t watch more than a few seconds of this intro without seizing.

Other times, I’m done in by trying to pee in a public building with a fluorescent light that needs some maintenance, or simply vibrates at a certain frequency. On those days, I have to bury my jittery, eyelid-twitching, pounding head between my knees, pee fast, and navigate the bathroom with my eyes mostly shut.

During an EEG test, there is an entire section that mimics those fluttery patterns. In a few of the sequences toward the end, the lights are multilayered. They remind me of the kind of whirly-flashing stage lights that make fancy patterns on the floor that certain producers have subjected me to.

Ahem.

Certain producers who ignored the explicit instructions in my contracts that describe the kinds of lighting effects my brain can’t deal with.

And people wonder why sometimes I knock a show or workshop out of the park, whereas other times I am this massive disappointment who can barely stay upright or form thoughts into words while teaching?

You have no idea how many of my contracted health and disability limitations have been overridden and ignored. Often I would already be onstage where the only thing I could do about it was keep dancing or halt the show and walk off. But it also happened in the environments to which I was subjected before/after a show, or backstage.

Breach of disability limitations is a way-too-common thing in the entertainment industry. For a stage performer, lighting is one of the most frequent culprits. It’s also one of the biggest reasons why I can’t do that job anymore, even when my producers adhere stringently and protectively to every one of my health stipulations.

Hence why I need this continuous EEG.

Because if this is epilepsy?!?!
I really need to be on
anti-epileptic medication, yo!

But nobody, in the past 24 years, has ever done what is necessary to discover whether this is the case with my brain or not.

Until now.

JANUARY’S EEG COMPARED TO THIS ONE

Thankfully (unfortunately?), my brain is in waaaaaay better shape than it was when I did the two-hour EEG back in January. I’d only been testing negative for Covid for a few days at that point, and was still super wrecked from fatigue, sleep deprivation, and the Plague’s brain-fog.

More importantly, I was only about a month out from the incident that had had required an emergency CT scan in November, which kicked off this whole slew of tests. Any time I rode in a car all last winter, I had to take off my glasses, hunch over, and bury my eye sockets behind my hands to prevent the leaves flickering through the trees from strobing me. Flashes off somebody’s vehicle about melted my brains out my nostrils. Sometimes I just wore a blackout hat and drooled against the window.

Heck, I couldn’t really tolerate being out in full sunlight half the time, so during January’s EEG I couldn’t even keep that strobe light in front of my face after the first couple patterns. My body instinctively animal-reacted, swiping the arm away and burying my eyes behind my elbow before I could register what I’d done.

Not this time.

Today, I endure all the strobe sequences, and do not seize.

No surprise to me. I’ve finally had a few months free from the things that neurologically mess me up the worst.

Once I got through last winter’s CT scan, MRI, bloodwork, 2-hour EEG, and the nightmare of the (mostly failed) rescheduling of this 5-day EEG, I had March and April to do nothing but recover. During that time, I blessedly had no home invasions by microscopic badasses, government agencies trying to kick everybody off their programs, new injuries, new brain traumas, or…really much of anything. I only had the standard biannual reapplication for food stamps, so my neurology has started to recalibrate.

Like it always does.

These days, I no longer have to wear a blackout hat or hide my eyes behind my hands in the car, so I endure every one of those ever-worsening light-patterns without having any seizures.

Next, we move on to hyperventilation. Now that I’m in Arkansas, not Colorado where I’m allergic to half the vegetation and the very ground itself, I can do that without breaking a sweat. During this test, you just lay there, breathing through your mouth hard, fast, and steady for three minutes straight.

For the professional athlete, no problemo.

After that, they ask if I have any more questions. I don’t. They were super thorough.

Okay, that’s not true. I really only have one question at this point, but I know they can’t give me the answer I long to hear: “Can I takez nap now? Please?”

The answer is, of course, no.

The doctor who is overseeing my hospital stay, and who will be coordinating with my neurologist, comes in to give me more instructions. He reiterates many of the same instructions that I received from the EEG guys, and informs me how everything will work in the grander scheme of this test.

He, too, is super personable, and I am thrilled that my time leashed to this room will be overseen by someone I am immediately comfortable with.

For ease in reading comprehension, we’ll differentiate My Neurologist from this other doc by calling him Dr. A.

A is for Awesome.

So no shit, here I am. Hooked up to my ‘trodes and a heart monitor, on camera for the foreseeable future. My neuro-team has informed me that my test is scheduled for 120 hours, which would put me finishing it on Saturday morning around 8:00 in the morning. But then Dr. A starts talking about a potential Sunday release.

Greeeeat. I send my parents a text about that so they can readjust our possible longest-case scenario on their calendar.

Now just how many of these scheduled five days I will actually be required to endure here will depend 100% on if my brain decides to show off any of its normal unpleasant shenanigans while I’m hooked up to these electrodes.

It’s a notorious phenomenon that you hear about over and over from people who have done these tests. For one of my friends, hers started acting up the second she stood up from the bed after they’d removed the ‘trode cap. Of course they wouldn’t hook her back up and let her walk—always one of her main triggers. Why they didn’t make that a part of her test from the outset, nobody will ever know. That’s unfortunately pretty common.

Also common: I’ve watched videos of others who have gone through the full assault-n-battery of all their scheduled monitoring days while being subjected to ever-worsening triggers, to no avail.

Because just when you need your brain to freak out and do its thang to prove that no, actually, you’re not imagining things, crazy, lying, or hallucinating, your nervous system suddenly becomes a model citizen, smiling and weathering it all like a champ.

You know…like allowing me to endure an entire round of strobe lights with a whole lot of wincing, panting, shuddering, groaning, grunting, growling and general discomfort…

But not one flippin’ seizure.

---

🎶 Sing it with me now! 🎶

Hello darkness, my old friend
I’ve come to hide in you again
Because a light bulb cruelly creeping
Flashed at me—I’d rather be sleeping
And the vision that was burned into my brain
Still remains
Within the sound…
🤫 Of silence 🤫

In blissful dreams I walked alone
Quiet streets of cobblestone…(ahhhhh…)
Without the halo around a streetlamp
✊ Belt it: 💪
I walked so boldly like I was a champ!
When my eyes were stabbed
By the flash of the strobe-light hell
That split my skull
And torched the sound…
🤫 Of silence 🤫

🤘Growly, in your best stadium metal voice:
And in the naked light I saw
Ten thousand flickers, maybe more!
People talking—will you stop speaking!
Strobe-lights near me—they’re so blistering!
People light them up…
There’s some twitching, just a few
But all they do:
Disturb the sound…
🤫 Of silence 🤫

🌤 Clawed hands upraised
🌤 Eyes to the sky with beatific outrage:
“Fools” said I, “You do not know
If my seizures will not show.
Read my words that I might teach you.
Listen closely that I might reach you.”
🤫 Mournfully now: 😢
But my words like silent raindrops fell
And echoed in the hells…
Of silence.

🔥 Really let ‘er rip: 🔥
And the people went away!
My brains had only told them, “Nay!”
‘Though the signs flashed out their warnings
Of the seizures—that they were forming
And the signs said, “They’re watching so I won’t
Glitch up when you need it most! (MUAhaha!)
I will not boast.
I’ll chuckle with the sound…
🤫 Of silence.” 🤫

UP NEXT:
BELLA & THE BEAST - I tell my trainee nurse to practice jabbing me, because I’m chipper and sweet and safe to learn on right now. They should take advantage of this, because it probably won’t last. (Spoiler: It doesn't.)

© 2024 Hartebeast

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Why did I need this EEG to begin with?

1. Delta Waves for Deep Healing Sleep on Spotify

Sleep Music Delta Waves - the one that will knock out my most frequent level of insomnia. (I didn’t know if I’d have wifi in the hospital, hence why I downloaded the Spotify one onto my phone.)

Serenity: My whole YouTube playlist of sound vibrations I use for a variety of brain, relaxation and sleep issues.

2. A totally different experience with flashing lights - one that didn’t give me a hint of seizures or neurological issues. In fact, it was quite the opposite. My faevorite art installation anywhere, anywhen: North Forest Lights.