Ambulatory EEG #1: Getting Creative with Quarantine Activities

During this coronavirus pandemic, some of us are saving lives and tending to the sick but most of us are staying home, feeling sick, and slowly realizing how fragile mental health really is.

And also how disorganized our American health system is.

However, and this isn’t an invitation to set yourself on fire only to douse yourself in water or anything, but sometimes you have to feel worse to feel better.

Case in point, my eccentric neurologist was concerned about the results from an in-clinic EEG I’d had in January so he wanted me to do a much longer EEG.

At home.

When doing an EEG they record your brain wave activity and also record your facial expressions so an EEG has a lot of moving parts.

In a hospital, the medical staff handles those moving parts.

At home, you’re handling them.

And that’s when I learned that, while I wasn’t exactly happy about my current situation pre-EEG, I was far less happy having my brain squeezed for days on end and feeling under old school video surveillance in a kind of Live Stream from Hell 1993 situation.

First, the EEG electrodes and wires were applied to my scalp in what was essentially an “extra space” in my neurologist’s office, and it was cramped with filing cabinets and other “office stuff”.

This was weird to me because, as I’ve had epilepsy since I was 12, I’ve had EEGs annually and they had always occured in clinical spaces.

But I kind of liked all this informality because it made neurology seem far less fancy and more accessible.

And also the EEG tech was super nice.

Nice people are sorely underrated.

I sat in a metal chair and the EEG tech person who did not wear a mask or gloves (apparently they were immune to COVID) sat directly behind me the way someone would if they were braiding your hair or picking bugs out of it and glued electrodes to my scalp.

And then I was shown how the 1993 video camera worked, and instructed on how and when to put NEW BATTERIES in the mini EEG box which was connected by wires to the electrodes on my head.

Now the EEG box should have rested in the cool fanny pack they provided but, rather, I had to physically clutch it in my left arm’s armpit because it didn’t reach my waist because I’m taller than most and so I was told I couldn’t let the EEG box hang because that would tug on the electrodes and wires and…

I thought the wire length could have been adjusted or something but… I am always overestimating what is possible.

I also was told I couldn’t take a shower or bath for three days and, they didn’t tell me this, but I was also to lose access to my forehead for 72 hours and I found something I didn’t think I would miss: my forehead.

My hair? Not so much. It was nice to not have to think about my hair for a few days.

So I left my neurologist’s office and walked down the odd hallway in the 1970s medical building in which it was housed and felt overwhelmed but that was because this was to be way more DIY than I had expected and I’d just sat in a waiting room with a bunch of unmasked people in the middle of a public health crisis.


I wasn’t able to wrap my head around my head wrapping until I got home and… the week was so stressful I couldn’t even take a photo until the final day of it.

Previously, I had envisioned posting photos of Professor X and Cerebro, joking around about how I was helping the mutants find people.


oh fuck.

I couldn’t even.

This is because this 72 hour ambulatory EEG made me feel like some kind of Frankenstein creature who was half-done, lumbering around, unwashed, unclean, squeezing a little square computer which smelled like old cigarette smoke in my armpit while holding up the clunky camera to capture every expression of disgust and annoyance because I was too tired to continuously, manually, adjust its lens position.

It was exhausting somehow.

Given the quarantine situation and my general feelings towards the outside world, it was no problem not leaving the house. But I once again realized that, no matter how bad it seems, it can always feel worse.

Because, there was I was, feeling worse.

This reminded me of this time a few years ago when my husband and I needed a break (my beloved dad had recently died from cancer and my amazing mom was under the care of hospice due to frontotemporal degeneration (FTD)) and so we decided to get out of town for a few days to give our brains something else to look at and contemplate.

We sought “calm”.

Thus, we searched for cabins on lakes in northern Wisconsin and found an affordable option which had looked appealing in the photos until we drove eight hours to find that this cabin sat in the middle of a trailer park which appeared to have survived the apocalypse which had not yet hit where we had been living.

Seemed fitting.

When you feel really at the end of your world, go somewhere post-apocalyptic and get some perspective.

Anyways… I felt like a cyborg monster invalid during this week of the ambulatory EEG and was looking forward to feeling slightly less circus sideshow once again.

On the final night of the testing, I felt areas of my scalp burning and wondered if the immense amount of electrical charge emanating from my brain was literally burning my skin.

Holy cats, I impress myself.

Or if I was just imagining the burning because imagining the burning seemed worse.

I was also anthromorphizing that camera hardcore because I’m an only child and thus the camera was a sentient creature and both foe and friend, depending on the hour.

Camera stared at me as I slept (only after I manually pressed its “nightshot” button… what year is it?!) and the camera and its tripod were kind of smashed-tucked into the tiny space between our bed and the wall as we have a tiny bedroom and so this camera was really in my face all night.

And during the day it was just clingy.

Throughout all of this stress, a tiny voice inside kept repeating “I wonder how my brain waves look now? I wonder how my brain waves look now” and I really wanted to punch myself.

But oh my word I was



and unplugged it because it couldn’t hold a charge and had to be plugged in all the time so… when I was moving it with me as I transitioned from room to room it was always a desperate search for the nearest outlet


I’d never before felt as close to being an actual robot as I did that Friday morning. I’d had friends joke about me being a robot before but who knew that this entire time they were right.

I also felt a bit wild-eyed and crazy when going about getting all this insanity off my head… cutting and tearing and ripping and removing and untangling… and it felt a little more cathartic and metaphorical than I would have expected when originally signing up for this Shit Show.

Oh, and that smell of burning which was originally a symptom of why I was having this DIY testing done was not an olfactory hallucination but a smell that was really there! Huzzah!

Ah, sanity, rational thinking and science!

That electrode left a mark.


I was again a REAL human girl/woman/robot/alien.

No makeup, no sleep, and motherflipping wireless!

All bad things come to an end just like the good things tend to.

Therefore, survival is all about perspective. And so, for us epileptics, one thing we can say when things feel really dark:

TODAY I do not have glue in my hair.

Today is a good day.

Unless, of course, you’re going through an ambulatory EEG.

But every ambulatory EEG comes to an end and soon you won’t have glue in your hair.

It’s not really about seeing the proverbial glass as half-full or half-empty… it’s about just seeing the glass and the water in the first place.

Epilepsy sucks.

But we could be on fire.

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