I’m a long-time epilepsy veteran but one of the things I’ll never get used to, those ‘bonus features’ I’ll never be okay with, are the injuries that often come as a free side with my seizures. I get they’re unavoidable. Logic tells me (in a voice that sounds encouragingly like my Mum’s) they’re not my fault. Yet in comparison to the bruises and the pummelling, this reasoning puts up little to no fight against the gravity vs Goldilocks happenings.
I’m currently having focal impaired awareness seizures and don’t get an aura, in fact much of the time I’m not even aware anything has happened. At the very start of a seizure, I lose consciousness and control of my muscles; if I’m holding something, I’ll drop it, there’s a high probability I’ll pee and if I’m standing, I’ll fall. As the seizure continues, I regain control in this sense but I’m not yet back to Goldilocks-operational-maximums.
At this point, it’s like half my brain cells are in there shouting: ‘Team Alpha is down! Team Alpha is down! Come on lads, it’s up to us, pull together, do something! Go for a walk around the flat, play with the phone, Alpha does that; smile, giggle and point at things, try and keep doing what Alpha does and maybe no one will notice Alpha’s impaired. Maybe no one will see she’s pee’d her pants, covered in blood and squirming around on the floor…’.
I’ve had to accept, and it’s taken practice, that my mysterious sojourns from consciousness into the dark might just involve ‘souvenirs’. This is not to suggest I’m okay with it, far from it. Falling down hurts and getting up gets tougher and tougher. As my dives downward become fewer and further between when I do drop it hits me harder emotionally. I’m happier, flying relatively higher, so when I tumble the impact is greater.
Boy it stings, waaaaaay more than a bee!
I had a seizure in my bathroom which resulted in the lesser-spotted-double-panda; two black eyes. The injuring I can almost take. It’s not that I’m well ’ard, it’s that I’m typically unconscious when my injuries occur. I kinda bypass the whole physical pain thing during the incident. I tend to move straight into the raw and emotional after-effects. This injury totally knocked me for six, I didn’t know my up from my down or my left from my right. To say I freaked out and needed some time to get my sh*t together is an understatement.
Every time I looked in the mirror, two-black-eyes confronted me, which was sorta hindering my recovery. Now, I have no trouble admitting much of my inner sense of wellbeing comes from how I look on the outside. So, it wasn’t exactly awe-inspiring to have a face like a bamboo-munching, endangered bear. No one tells you when (or even immediately after) you’re diagnosed with this vile condition about the falls. No. They keep that little nugget hidden. Like a special surprise; a gift no one wants.
My bruises cleared up and I decided I needed to move on. I did a lot of crying; crying is okay, it’s even an awesome release of frustration and sadness. I wanted to get things back to (and I use this word incredibly loosely) ‘normal’. What I was doing wasn’t working and I had an assignment due. My latest bathroom-type-acrobatic-display had set me back two weeks at Uni, which was stressing me out. I contacted my tutor, who was incredible, and got a week’s reprieve. It was a struggle; my concentration and my focus were out of whack, I had too much going on.
And that’s how it feels after every collision, bump, bruise, scrape, knock and seizure. It feels like Epilepsy Goldilocks rears up to say: ‘huh, you thought you were in charge. No chance. Every time you start to forget, this is gonna happen, got it Goldilocks?’
Why the bathroom, why not somewhere squishier?
It was January, I’d not really done much, maybe been out for a coffee in town? I was in my PJs by 8.30pm and was heading for an early night. I’m still unclear what time I found myself in front of the bathroom mirror, drenched in blood. I had no idea what had happened. That’s what’s spooky about this condition, finding myself in this type of situation and not entirely knowing why.
I pulled myself back together, turned to face the bathroom and saw what looked like a crime scene. As I reached up to touch my head I felt nothing but blood (well, perhaps brain, jury’s out on that one). I knew I needed help. Yet I didn’t call for an ambulance. I rang G.
G’s a solid member of my troop and knew, just from the sound of my voice, that we had trouble. Still not quite ‘with it’, and no idea what the time was, no clue what’d happened, all I said was, ‘G, I’ve fallen.’ Now, I’ve done this before and needed nothing more than a plaster, a cup of tea (and a hug). This wasn’t our first blood-drenched-bathroom rodeo.
G arrived 5, 6 minutes later with his mini-first aid kit. I was on the couch, ashen and trying not to vomit or pass out. He took one look at my head, then the bathroom, knew his doll-sized bandages weren’t gonna cut it and dialled 999.
At 3.30am, I received 18 stitches to repair a 10-centimetre gash down the middle of my skull. It was in a place that, to this day, I’m still unsure as to how I did it. It knocked me sideways. I’d been doing so well and with one fall I had quite literally had the stuffing knocked out of me.
I don’t understand, what now … ?!
Even more recently, like the other night, I was chatting away on vid-call, reached up to scratch my head and found an incredibly tender, most definitely fresh lump. This is neither a unique nor an enjoyable experience. I couldn’t link it immediately (read: at all) to a that’s-when-this-happened moment. It’s not only frustrating, it’s plain infuriating and a little scary. Most people look at their bodies and can justify their bumps, explain their injuries, describe their disasters.
On those days when I am wounded, or getting out of bed is difficult, the first decision I make is always: is it worth it? I try to have a ‘no wallow’ policy. Sensible-grown-up-together-Goldilocks knows that once I have got in the shower and brushed my teeth, I’ll feel better. However, overtired-post-seizure-cream-crackered-Goldilocks knows that staying in bed, or moving to the couch, and staying under the duvet feels good. It’s similar to a fight that a younger, healthier Goldilocks used to have about going to the gym after work vs going to the pub.
I would say 95% of the time sensible-grown-up-together-Goldilocks wins. I can personally attest to the fact that depression can be exacerbated by long periods of isolation. When I first stopped working in 2017, it was the lack of things to occupy me that led to my dissociative seizures, a brief period of post-ictal psychosis and anxiety. Now I create things to do. I break down my day into manageable chunks; it’s divided, like if I had a ‘regular’ 9-5 job but without the same constraints, no salary and I’m my own boss. All the fun of the fair without the fare.
Everything’s coming up Goldilocks?
Take today. For three nights running I’ve had seizures just before bedtime. This has meant that I’ve woken up very tired. Each day, I’ve fought off the compulsion to stay inside-on-the-couch-and-under-the covers. Instead I’ve cranked up the music, brushed my teeth, got in the shower and got on with it. Just seeing someone, just talking to another human who’s smiled at me (even from a healthy 2 metres away) has improved my mood. And that’s what I need.
I’ve learned since becoming unemployed due to disability (I hate that term) I have several markers which when they slip quickly tells me something is amiss, awry and erroneous. These are:
- My flat becomes a pigsty (and I don’t care)
- I let my hair grow out (and I have a shaved head. This is not a good look; a shaved head takes maintenance).
- I start to bite my nails
- I eat and I eat, and I eat, and I eat (needless to say I’m not munching carrots)
Yes, I understand this all may appear extremely narcissistic; my appearance is entwined with almost all these markers. However, how I look on the outside is inextricably linked with how I’m feeling on the inside. That’s not vanity, it’s about being able to put on a stronger (if slightly more pampered) brave face.
Covid-19 has meant we’ve all had to make changes to our lifestyles that we’re not necessarily happy about. Here in the UK businesses are slowly starting to open and where pre-lockdown I’d be able to cheer myself up by heading to the beauty salon and treating myself to a manicure, that’s not yet available. I have been able to shave my head, a feat that’s way harder to complete alone than I’d ever imagined.
Again (and I do hate to be repetitive) take today. I worked up the energy to enter the bathroom with my clippers and spent 15 frustrating minutes over my basin, wishing Sam (my awesome and charismatic barber) was a member of my household, or at least part of my bubble. Instantly I felt better yet nothing physically, medically or from an epilepsy point of view had changed.
Every black cloud has a silver lining (it’s the rules!)
And let’s not forget that’s what works for me; what works for you may well be different. My whole stance is just do something you know will make you feel better. It really doesn’t matter what it is: painting, skydiving (painting while skydiving), just do it.
I guess the long and the short of it is epilepsy sucks. I try to work on changing the things that I can, I deal with managing my life and my wellbeing, so interruptions (like the falls) become fewer and further between. And when dark clouds appear, I deal with these intrusions, and that’s all they are, the best way I know how. Whether it’s a manicure or a slice of exceedingly chocolatey cake from my favourite café. It’s about what makes me happy.
Do what makes you happy.
Because having epilepsy is like being Goldilocks: you can’t have too much, you can’t have too little; everything has to be just right.
Copyright © Jo Mackenzie 2020
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