Epilepsy: The Good, The Bad and The OMG

I was talking to my mate, G. and he said, do you wanna hear something strange, Goldilocks? Well, I thought. What girl doesn’t want to do something, see something or hear something strange? And, he said: ‘we met about 5 years ago, yet I’ve known you for longer than you’ve known me’. I thought about this declaration for a while (you know, considered it) and then, I did the only thing a girl in my position could do:

I laughed because it’s funny, and it’s funny because, despite being an ostensibly outlandish statement, it’s true!

In the 5 years G and I have known one another it can’t be said I’ve been a permanent fixture. I’ve been somewhat transient. So, everyone I know, has known me for ever so slightly longer than I’ve known them. In fact, it’s been this way (with my little vanishings) for nearly 30 years.

And this got me thinking about seizures I’d had which had made me laugh. I seem to find it much easier to dwell on those events which resulted in bruises, or stitches, and that’s just bonkers! Yes, they’re important but are they more important than the time I made a noise akin only to Tibetan folk singing? I ‘came to’ and they practically gave me a standing ovation.

Whether you have epilepsy, or you’re affected by the condition, you’ll know there are good days, bad days, up days and down days. With all the sh*t epilepsy throws (and it’s got an exceptionally good arm) the hardest thing is to take these days one at a time. One of the toughest things to do is wake up the morning after a seizure (or seizures) and get out of bed. To try and face the next day, not like the day before didn’t happen, although a certain amount of management needs to occur, but with a new mindset.

Let me explain.

The caterpillar is (sometimes) more astonishing than the butterfly!

R. and I were having dinner at my flat, one Friday night. Though we’d been mates for about 6 months, he still hadn’t seen a seizure, this is because I manage the condition fairly well. If I’ve got a big day planned or perhaps a night out, I will rest up. I do all I can to reduce the chances of one happening. Bringing new people into my troop is a big call; it asks a lot of them and of me. I wouldn’t ask anyone to do anything that I’m not prepared or able to do for them. Also, my seizures aren’t the shake and jerk (generalised) seizures people expect when I let them know I have epilepsy. However, I am, quite obviously, happy to explain.

So, it’s Friday night, we’ve ordered food, he steps outside to vape and hears a crash from inside. Whadyuknowitt?! I’ve not only gone and had my first seizure in front of R., I’ve fallen, smashing my chin, and now I’m writhing around on the floor. To top things off, I’m doing a somewhat brilliant imitation of a caterpillar. R. sits down (I imagine he’s a bit perplexed). He’s seen film-footage but not been witness to any seizure, never mind ones which involve larvae impressions.

So, just to really mess with him, Epilepsy Goldilocks tries to pick up the incredibly, heavy leather couch that he’s sitting on with her little fingers.

You know, Superhero style!?

Apparently, she stared at him with what he described as a petrified look on her face. Then for what I guess felt like hours but was probably more like a few minutes he played the who-have-we-got-here game: Epilepsy Goldilocks or Goldilocks?

What we both learned is communication is vital. I need to tell him (and everyone really) exactly what’s going on with me. Any questions bouncing around post-seizure need to be asked and answered.

When in Doubt: Deny, Deny, Deny!

That’s not the weirdest seizure, or post-ictal experience I, or Epilepsy Goldilocks have ever had, because it’s not me. And that’s what I try to remember in these situations; it’s not me. It’s the alert side of my brain coming together in a show of unity for the other side, the side that’s impaired, sparko, away with the fairies. The side that’s frantically trying to hold the pieces together, pretending everything is okay.

Epilepsy Goldilocks attempts to talk, yet she can’t find the words. So, she moves to automatisms, those oh-so familiar actions, like unlocking or playing with the phone, raising her eyebrows or smacking her lips. Things that she can (quite literally) do without thinking but usually she just misses the mark.

One of the strangest things about Epilepsy Goldilocks is that she doesn’t believe she has epilepsy?! She’s been caught on-camera mid-seizure saying:

“Not me mate, I don’t have epilepsy, I’ve never had a seizure. Ever!”

That’s gotta be one of the hardest things about (my) focal impaired awareness seizures. It’s incredibly difficult to tell where Goldilocks ends, and Epilepsy Goldilocks begins. And vice versa. If the wrong thing is said in the wrong tone to either of us, we’re likely to bite your head off. Although, Goldilocks can be reasoned with (most days). It’s best to stay calm and ultimately the seizure will end.

Once I found myself sitting with my back to the TV on G’s front room carpet. He was sitting in front of me, holding a magnet. Yes (you read that right), a magnet. Epilepsy Goldilocks believed she’d lost a heart-shaped pendant from a silver chain around her neck and had become incredibly upset post-seizure.

She couldn’t feel it. G had reassured her/me that it hadn’t been lost, over and over and over. Apparently, we’d searched for over 10 minutes. Then I ‘came to’.

I didn’t then, don’t now and never have owned a heart-shaped pendant. Though, now I have a decent story about one, courtesy of Epilepsy Goldilocks.

Although, that’s still not the funniest ‘seizure story’ I have.

Apparently, I’ll do anything to avoid boring conversations?

I was on the phone to R. He and I have a system where if I ‘do my thing’ on the phone he waits and listens. After a while I usually hang-up. Epilepsy Goldilocks likes to play with the phone. She’s been known to unlock it, but she doesn’t really know what she’s doing. He’ll then text to tell me I’ve had a seizure and let me call him back. At about 9pm I received a text that said:

Hey Goldilocks, you had a boredom induced seizure at 9ish, let me know you’re okay?

Except, I was utterly amazed to receive a text; I had no memory of talking on the phone. When I rang, I was tired but keen to hear what had happened. Especially in that as far as I knew this was seizure number 2 for the day. I say it like that because since my VNS surgery I’m less aware of seizures happening. I called R. He told me that we’d been talking about cars, he’d just bought a new one, he had to explain, again. Apparently, as he was enlightening me on something totally super-interesting (like tyre pressure) I started making toddler-like-race-car-noises.

Brrrrrrrm. Brrrrrrrm.

And, just for a split-second R. thought I was taking the p*ss. But when I backed up my formula one soundtrack with the Mongolian style throat singing that’s a regular feature in my seizures, he knew something was amiss neurologically speaking. And, as he told me about my vehicular vocalising, we were both laughing. It was one side of my brain trying to protect the other by conjuring the illusion that Goldilocks was still there, desperately badly.

Off I went to bed, yet at 3am I still just lay there. My brain was playing the super-tired-and-won’t-shut-down-but-will-go-round-and-round-with-useless-sh*t game. It’s not the first time this has happened post-seizure. It happens more often after a fall; I imagine because of the adrenaline that’s surging through my body.

I think it was because this was the first seizure I’d been fully aware of in about 3 weeks. I knew seizures had been happening because I’d felt the kind of fatigue that in my experience only follows a seizure. What was different was the fact this seizure had an audience. When I’m not at all aware it’s like they’re not happening; almost like I don’t have epilepsy.

Almost.

Nothing Like A Captive Audience

Where you are and who you’re with can have a huge impact on how well (or how badly) a seizure plays out. It’s not that the geography or the people you’re surrounded by can change the event (it’s still gonna happen, right?), but they can and do affect the outcome.

Take Big Sis’ 40^th Birthday Extravaganza: Lil’ Sis’, Big Sis’ and I were bedecked in our most glamorous evening wear and eating at a Michelin Star Indian restaurant in Mayfair, London. The type of restaurant where, should your napkin fall to the floor it’s caught by one of the ultra-attentive-gaggle-of-waiters seconds before reaching the ground and replaced with a fresh linen, all while you’re still sniffing the bouquet of your wine.

So, when at some point between the 6^th and 7^th courses, Epilepsy Goldilocks made an appearance, our waiters were more than a little bewildered. This was no dropped napkin. My sisters who are not only both in healthcare, but also extremely practiced in my shenanigans, batted them away. They told them, ‘ just chill dudes, she’s cool, be back in 10, no biggy’ and they carried on crunching whatever delicacy they were munching, awaiting my return. And I did return, just in time for pudding (of course).

It doesn’t have to be family though:

I talk to my mate G. on the phone typically via vid-call a lot, every night for about an hour or so. In that this is bewitching time for Epilepsy Goldilocks she and him are old pals, they’re good chums. When we met 5 years ago her instinct was to pick up and head for the door, she’d wander around nervously, obviously concerned as to who the hell he was. He’d talk to her, tell her it was okay, ask her to sit down but it would take a while before she’d settle.

She’s uber-comfortable with him now though (in fact, between you and me, I think G. relishes that there’s a whole part of my personality he’s met, and I haven’t)!

I’m at G’s flat and a seizure starts. He hears the Mongolian throat singing type noise and knows what’s coming, I imagine he settles in to wait till I’m done. Epilepsy Goldilocks decides she needs a stroll, so crosses the room, deftly traversing the coffee table only to find her path obstructed. She looks down at the small tower of cushions, and then to G. (apparently with a ‘WTF brah’ stare). He moves the cushions. Epilepsy Goldilocks takes a step forward and sits on the couch. She then proceeds to curl up like a Siamese cat and places her head on G’s lap.  

Epilepsy is no joke.

I haven’t shared these anecdotes to undermine the seriousness of our condition. Yet I have enough tales which end in hospital trips to last me a lifetime, and the never-ending knowledge I’ll get new stories. My goal is to draw attention to those times, our ‘caterpillar moments’, when epilepsy can and actually has made me laugh. As people with epilepsy we know the horrors, we’ve had the stitches, rocked the bruises and accepted the cuts; let’s allow the laughs as well.

If you have stories that you’re looking back on now and smiling about, I’d love to hear them in the comments below or @BrainAblaze.

Because with epilepsy you can’t have too much, you can’t have too little; everything has to be just right.

Copyright © Jo Mackenzie 2020