1. My 5-Day In-Hospital Continuous EEG with Video Monitoring
Because we need to make sure that my seizures aren't epileptic
MAY 6 - DAY 1 OF THE EEG
The Drive
We get up at 4:00 in the morning and drive in the dark. Dad has developed difficulty with night driving in the past years. I’ve had trouble with it since my first TBI in 2000. It used to be really bad, especially while passing oncoming traffic or going from bright-to-dark rapidly. When my brain is in really rough shape, it still is.
My first neuropsychologist had me close one eye whenever I had to endure the temporary brightness, so I’d have one eye that wouldn’t have to make such a rapid transition in and out of night-sight. It helped me tons, so I tell Dad about that trick. I’m not sure how much it helps him, but he appreciates the thought.
He’s been appreciating a whole lot of things about me in the past five years or so.
It’s been fascinating (and a bummer) to watch my parents catch up to me with a bunch of this stuff as they age. Things people normally start experiencing in their 70s have been part of my life since a drunk driver rammed me when I was 28. The Parentals have been particularly appreciative of my gobs of TBI old-hat tricks, tips, and tools since my mom’s second stroke. (We didn’t realize what had happened to her with the first one.)
When I was originally diagnosed with a Traumatic Brain Injury significant enough to be quantified as “permanent,” one of the most disheartening things I learned was that I would be at huge risk to have accelerated brain aging.
Me being me, and since I hang out with who I’ve hung out with for the past two decades, I called, “BULLSHIT!”
Nawwww, neuroplasticity, man!
Screw that! Mind over matter!
East-west medical theories, dude!
The body is a miraculous machine that can repair itself in astounding ways if we only help it out!
It is.
So I do.
Continually.
AND.
The body also exists on the physical plane, so when it has been subjected to certain types of damage, certain things happen to it. Just like the injuries to my neck, spine, and hips put me at greater risk to have accelerated degeneration and additional injuries, the same has been true with my brain.
That still doesn’t make me a Doom & Gloom Twue Believer that I am destined for crippling arthritis in a wheelchair or at least with a cane in my elder years. Neither do I subscribe to the ASSumption that Alzheimer’s or Parkinson’s or death-by-stroke is the trajectory I’m inevitably sliding toward.
Do all the women in my maternal line croak by stroke?
All the ones I’ve known so far, and my mom has had two already.
Apparently, sometime in my 40s I developed a clump of restricted blood vessels in my right parietal lobe. I say 40s, because it had already caused damage to my white matter by age 50.
This was what we learned in my latest MRI back in December.
My neurologist shrugged it off. “Oh, it’s just a sign of aging.”
Uhhhh, yep.
Accelerated aging, actually.
Apparently most people don’t start being affected by this until their 70s. Apparently “everybody” in their 90s has some of this. Seeing as how I don’t have a single one of the issues that customarily contribute to this condition—diabetes, obstructive sleep apnea, high blood pressure, high cholesterol, kidney disease, smoking—I’d say that 40s is a bit young for it to be “normal” aging.1
This mirrors what my neuro-chiropractor discovered the first time he looked at my neck x-rays back in 2019. He totally thought he had the wrong patient. I was only about 45 then, but he would have sworn that he was looking at the cervical vertebrae of “someone 30 years older.”2
Well, crappioka pudding. I guess that whole “at risk for accelerated aging” thing wasn’t bull-dookie after all. Dang it.
So, after 23 years of this crap, my parents and I actually have a lot more in common now. I keep telling them that I don’t want them in this club. I welcome them with open arms and some warm, fresh Dark Side Dookies—I mean, Cookies, but I keep trying to kick them out of the clubhouse.
We don’t want any new members, yo.
But here they are, so my dad is…ahem…just a little stressed during the first leg of our trip up to the hospital in Missouri. It’s still completely dark out. He also doesn’t do so great when we turn east into the rising sun, so I do a lot of joke-telling and commiseration-petting, and I let him gnash his teeth and swear.
As we approach our destination, a strange, glorious fog arises before us. It threads misty, sun-kissed tendrils through river valleys. It lingers over lakes. Then it transforms into a massive, dark cloud-wall that looms over our route like impenetrable ramparts.
It freaks Dad out.
Not me. I’m all, “OMGs gotta whip it out!”
That’s my mom’s and my code whenever we’re inspired to grab our cameras to snap a shot of something that inspires the Spockly eyebrow or the glowy-eyes. As I position the phone, I stare in awe at what the sun does to that rising wall. I wonder if we’ll be enveloped in it as we hit town.
Of course, I’m not the one who has to drive through it. Dad also has 70+ years of being keenly attuned to ominous clouds from how much time he spends on lakes fishing, out in the woods hunting, and from living in Minnesota near Lake Superior for the bulk of his life.
’Nuff said.
Tornadoes…blizzards…thunder-boomers as you’re racing across the water toward the landing…
You know. The little things.
As it turns out, that cloud-wall is nothing to worry about, and our visibility is just fine as we reach the city limits. No rain, no storm. In fact, it probably prevented him from being fully blinded for the last hour of our drive. Hey, we’ll take any bones the travel-gods decide to throw our way, thank you very much.
It takes us a bit to find the hospital entrance we need, but we eventually get there and re-map the route for Dad’s return trip home, as well as for when he’ll come to pick me up on some unspecified day in the future. Saturday at the latest, if they need me there for all five days.
I hope not.
I especially hope I won’t have one of those classic experiences where my neurological symptoms suddenly develop White Coat Syndrome and flee the premises just when I most need them to show up. I’m crossing fingers that the EEG people will get the data they need early, then send my butt back home to twitch and drool in peace.
Admissions: They actually have a bed for me!
Once arrived, we park in the valet drive—something I gradually, subtly, covertly steered Dad toward all last week. Because I knew the state he’d be in when we got here after that dawn drive. I also remembered all the recommended crap we’d be lugging in for my comfort in the uncomfy hospital.
I didn’t wanna lug that crap from the parking lot, then through who-knows-how-many hospital wings, and I didn’t want him to have to do it either. Lugging it from the front door to the admissions desk was enough, so I’m thrilled when he pushes the Easy Button and enthusiastically pays for valet parking.
As Dad hands over the car keys, I heave a sigh of relief along with heaving my suitcase out of the trunk.
I haven’t used this suitcase since I flew to Colorado for that big writers’ conference I won a scholarship to. You remember that con. It was the one at the end of January 2020 that hailed in Colorado’s first cases of Covid while I had a 10-hour layover in Denver.
It was also the con that made my brains dribble out my nostrils in the first two minutes of entering the main convention center room.
That was annoying to learn—that my brain deterioration had made it impossible for me to weather things like convention centers anymore. You know, like I used to do for a living, and like I’d hoped to resume doing as I shifted from dance into published authorhood, since the accelerated aging in my body would foreshorten my longevity as a dancer.
Le-heave-of-siiiiiiigh.
Life is what happens when you’ve…
Whatever.
Today I thrill to the sight of my fancy suitcase. I’ve only gotten to use it twice before. Mom got it for me as a giftie before I flew to Spain in 2019—another scholarship won with my scintillating scribbles.
During all my dancey jet-setting through the late 2000s, I’d killed off all my previous suitcases. This one is special. For the starving artist who always had to make do with thrift store finds and clearance rejects during my grand international career, it’s a luxurious treat, because it has those multi-directional wheels.
That means I don’t have to drag it by my brawn. I can guide this sucker, fully loaded, with a fingertip if need be. Ah, such bliss while lost in a hospital with a ginormous line at the info desk, no easy-peasy signs, and our one simple question: where is check-in?
We finally get there.
To my shock, admission goes like clockwork.
Excuse me. Admission goes like well-oiled, finely-tuned clockwork that hasn’t had any monkey wrenches thrown into it, like all the other medical mechanisms I’ve had to jerry-rig just to get myself to this EEG.
Monkey Girl is pleased.
Monkey Dad sighs in relief and drags his frazzled butt off to find the john.
Miraculously, I am scheduled for a room of my own. I know, I know, having a roommate would have given me faster and even more consistent overstimulation, and I might have even made a friend. I at least might have had a buddy to swap exhausted high-fives with as we drag our electrode-leashes to the bathroom.
For months, I’ve burst into snort-chortles every time someone has said, “Five days in the hospital? Oh, wow! A break from work. If you bring games and books and stuff, it’ll be like a vacation for you.”
I—
Um…
That is—
Blink. Blink.
😳
🤣🤣🤣🤣🤣🤣
They obviously have no idea what being in a hospital is really like. And they reeeeeally don’t know what is involved in a 5-day continuous Electroencephalogram with 24-hour video monitoring.
I’ve done tons of preparatory article-reading, question-asking, and video-watching, and I still don’t reeeeeally know.3
But I’m about to.
Very soon.
The Classic: “But you look so good!”
At long last, we’re led upstairs to a place I’ve called multiple times since February: Neuro Floor. I can’t help but think of my mom as we pass the Stroke Unit. Back in February, when I was originally scheduled for this test, she’d planned to make this trip with us.
By the time it finally got here, we realized what a bad idea that would be. It would just be too taxing on her, and also on my dad who would then have to herd two Team Dain Bramage Cats, instead of just the one, along with his overloaded self.
So Mom waits for him at home, while I eyeball the Stroke Unit, thinking of her and missing her, grateful that she never had to be admitted there. We pass elderly people on walkers, leashed to IV bags with nurses helping them. Others are in their rooms, but mostly the doors are shut.
The reality of me being in this place doesn’t hit me on the way in, because I’ve been on Team Dain Bramage for a quarter of a century, and I know darn well how old I am.
But Neuro Floor has no clue.
They’re about to.
Very soon.
As Dad and I make our way to my room, nobody bats an eye. I cluelesslyASSume this is because I belong here. Nope. It’s because everybody ASSumes I am the caregiver for my elderly father.
I realize this when my first nurse comes in. I’m around the corner at the sink, brushing my teeth because I’ve just chowed down a banana. Brushing my teeth is pretty much all I seem to do anymore, with these Invisaligners to restore the proper shape of my mouth that got warped from untreated TMJ after my big car wreck.
So as I brush face, the first person my nurse sees is Dad in the recliner. He’s been impatiently drumming his fingers on the arms of the chair because he’d really like to see me installed as comfortably as I can get in this place, and then get back on the road. After giving him a cheery greeting, the nurse goes straight to him and starts peppering him with The Opening Questions.
To her shock, I am the one who answers. She glances back and forth between us. It’s clear that someone else answering for her patient is nothing out of the ordinary, but the responses themselves are.
Because I’m using the words “I” and “me” instead of “him” and “he.”
She blinks a few times and rapidly recalculates. My cute, snappy little nursing assistant makes no bones about voicing what will become one of the most common themes of this hospital stay: “Wow. You look way too young to be on this floor!”
Especially since they all take me for somebody in her early-to-mid-thirties.
I blame the skewed perspective of their customary patients, my mom’s genes, my refusal to quit dancing/hiking/training/laughing, and the long hair. Women over 40 aren’t supposed to sport long, luxurious locks, don’tcha know.
😝🤨💩
Okay, after Covid stole a third of my hair, it’s looking pretty scraggly these days.4
To me, it looks and feels awful. But in comparison to the majority of people in this unit?
I am a pink-cheeked, red-lipped cherub with bright, shiny eyes and glamorous, flowy locks.
Of course, nobody but me and my dad know the difference. Neither does anybody seem to notice my three-inch silver roots. I admit, they blend into the blonde much more seamlessly than if I was still dying it my original brunette. With this much gray against any bold color, I used to have to deal with roots every two weeks or less, which is why I’ve left it blonde for so long. (Plus, I can temp-dye it as often as I want with all sorts of outrageous colors to go with my costumes.)
As gray hair goes, mine really is a pretty shade. I might have let it go years ago, if it wasn’t for the exasperating pattern. Because it’s not on my whole head. It’s only on the places atop my brain injury.
Within a year of my first TBI, a swath of silver struck the whole crown and sides of my head. The medium-to-dark brown with a sprinkling of salt still slices across the back of my head just below the crown, where I don’t have damage to the occipital lobes.
“Ohhhh, that’s just aging. My aunt started going gray at 19.”
Actually, I’m pretty sure it’s more of that accelerated aging thing, slammed onto my body in the precise places where my brain has taken the hardest hits.
During the Year of Chronic Seizures, my hair theory was confirmed when the back-right of my skull also went a weird iron-gray. It was coarse and kinky and it didn’t even want to take bleach, much less dye. Once we started getting my neck back into alignment and my cerebrospinal fluid stopped backing up right there, the seizures almost fully ceased and my hair went back to brunette.5
Fascinating…
Well, no matter my silver crown, the nurses still have the same reaction that my neuro-chiropractor had upon first examining my x-rays. They have to look at my chart to confirm that I am not only over fifty, but that I really am the patient they have scheduled for multiple nights of hospital stay, hooked up to an EEG for more than a quick two-hour test.
This bafflement will become…a thing.
Sometimes the thing is not a good thing.
But sometimes it feels nice to still get called “pretty” by their gazes and their comments, after living this long on Team Dain Bramage. We have a lot of not-so-pretty days around here.
After the nurses determine that I am capable of walking on my own, they take my blood pressure, temperature, and pulse rate. Then they send me into the shower—not to wash my hair, only my body. They arm me with antimicrobial soap “to prevent infection.”
That’s kind of alarming, so I’m grateful to have it, as well as having my own room because my immune system is chronically sluggish-to-compromised—duh, Team Dain Bramage. There are times when I get sick at the drop of a hat, and it often takes me down harder and longer than most people I know.
Therefore, I’m also grateful for their fresh gloves, the removable blood pressure cuff designated as “mine” that gets velcroed around the arm of my bed whenever they’re done with it, and the handy-dandy little sheath for the temperature gauge that pops off and flies into the trash after they pull it out of my gob. The forefinger clip that assesses my pulse and oxygen, however, is not “mine.”
Some of the nurses prefer to put it on my middle finger.
Some of these nurses are My Kind. 😈
Hindsight observations
Looking back I suspect that, as the nursing staff gets to know a patient, they do some swapping of rounds behind the scenes, because by the time I left I had the most badass, snarky, (sneakily profane), laidback, and personable crüe of the Neuro Floor staff attending me.
I loved these people.
I loved the EEG Techs.
I loved the janitorial staff and a bunch of the lunch ladies.
Neuro Floor is really a special unit.
Good thing, because I’m a Special Monkey who sometimes needs a lot of assistance, in spite of my ambulatory capabilities, my pink cheeks, my Jupiter-sized vocabulary, and the rainbow of color I was wearing on my person and my personality.
I wasn’t in the literal rainbow hoodie for this trip. I was “only” in the one with patches-of-many-colors.
Along with this hoodie, I wore fuzzy dove-gray pants and a coral tank top. Also my coral fishing buttonup, and neon coral socks.
Apparently seeing that much color on Neuro Floor is a shock.
I mean, seeing that much color anywhere tends to make people blink hard and do double-takes, so their reaction to me was particularly potent. Hey, at least my hair right now is only blonde with garish roots, instead of as rainbow-hued as my clothing.
Everybody loved that hoodie. Even the night nurse who did NOT like me.
Me?
I needed that hoodie. I needed my fuzzy pants and neon socks and my own pillow.
Turns out I did not need my electric blanket. After Dad and I froze our butts off for hours in the E.R. on the night of my CT scare, I packed that blanket without a second thought because I’m a cold-wuss. I didn’t realize that I’d have my own room temperature controls.
I slept under my own blanket anyway. I just didn’t hook it up to its own ‘trodes. Quite enough ‘trodes and cords trailing around that room, thank you very much. But once the ordeal began, I was happy to have my woobie and my own pillow, just like I was happy to be in bright, shiny colors that made people smile.
Made me smile, too.
I was gonna need it, along with a whole lot of humor.
UP NEXT: At long last, I get the ‘TRODES glued onto my skull.
© 2024 Hartebeast
RELATED POSTS
Did you miss the months-long highway through Hell just to get admitted into the hospital for this test with the most-likely certainty that it would be covered by insurance?
Why did I need this EEG to begin with?
Microvascular Ischemic Disease - what we discovered with my MRI
Neurological-Based Chiropractic - the type of chiropractic that has been actually returning my spine to its natural shape
Advance homework: EEG with video monitoring—what to expect
Sudden hair loss after Covid or other major stressors on the body - also known as Telogen Effluvium. My first bout with Covid happened in the middle of my big neuro-crash which was incited by the year-long hammering from three government agencies as they tried to weed out all the malingerers from—you guessed it—Covid. So…just a little stress there. Poof! Commence shedding.
Stress does turn your hair gray - and it’s reversible - I just find it fascinating that my accelerated graying only happened in the places of TBI damage, whereas the undamaged places acquire their salt sprinklings at the more expected pace. *Spock eyebrow*
Dude! I had the grey hair thing happen to me too! I was only 31 when it appeared (which I felt was too damn earlier to be going grey), but after my two year ordeal with chronic back pain — which was a major stressor — this one little grey patch appeared on the side of my head. Nowhere else, just one little spot amongst all my brown hair — it looks like I got shot in the side of the head with a white paint ball haha.
I felt it was caused by the stress of the chronic back pain saga, but I’d never been able to ‘confirm’ it. Your piece helped make it real for me though. (I’m actually writing a series about that back pain ordeal that I’ll be sharing soon :))
Also, there are so many examples throughout your piece of how you bring humour to this hard situation, but for whatever reason, this one got me —
“Well, crappioka pudding.”
Keep fighting the good fight, Alexx :)