Epilepsy and Process…

There’s a process to be gone through. A series of setbacks followed by a few victories and then a levelling off. Repeat.
I’m listening to Max and Benny causing chaos. There’s just been an enormous crash, followed by complete silence. Now there are small tentative noises. I know what caused the crash so I’m not concerned. The noiseless aftermath confirmed the boys are fine. They’re fighting again now. I can hear them charging through the house. Squealing as they go. How can such small little things make so much noise?! Another crash. Now, they’re slinking into the room I’m in – mischief managed as Harry Potter would say! Oh, the joy of kittens. They’ve been through a process – chaos, the victory over the catnip-filled mouse, followed by a nap. 
Epilepsy is similar. Seizure, recovery, life. Seizure, recovery, life. It’s a process. The main components of the process don’t change, the route through them does. At least that’s the way it is for me. The seizure occurs. The depression and the fatigue and the physical pain comes next. Small pockets of hope, chinks of light appear and grows slowly in to day-to-day life. That’s the cycle. That’s my reality. I know the score; I know how it’s going to be, yet that doesn’t make it any easier.
My very first fit. Mr Marshall’s English class, first floor of the upper school, 29 years ago. A battery of tests, weeks in bed, a darkness I now know to be depression, back to school. Second fit. The lounge room of my parents home, 27 years ago. A new round of tests, a diagnosis of epilepsy, a bout of blackness, A-levels. Latest episode. My own home, 4 months ago. Another round of tests. An incredible depression and back to work. Not much has changed in nearly 30 years. The only real difference is that I now know what depression is!
It’s a process, yes; is it predictable then? No. I live every day of my life wondering when the cycle is going to start again. That’s not to say that I think about epilepsy 24/7, I don’t. But it’s a consideration in everything I do and it’s there in my head, literally and figuratively, every single day. I don’t believe a diagnosis of epilepsy means the end of life as you know it. I truly don’t. Life doesn’t come with a guidebook, but it does come with a set of obstacles. You have to navigate life the best way you can. Admittedly, I don’t always get it right! Show me someone who does?! My life is predictable in its unpredictability. My emotions sometimes (often!) get the better of me. But my emotions prove to me I’m alive; I think they probably prove something entirely different to those around me……..
It took a great deal of time, decades in fact, for me to allow myself to not feel ok. It’s not weak to show emotion. It’s perfectly ok to not feel ok. I wasn’t raised to show emotion. It’s not that I was not allowed to, or that I was afraid to, but more that I didn’t know “how” to. My family wasn’t demonstrative. I didn’t see those around me show feelings, so I guess I didn’t really know what feelings were. Everything was internalised. The first time I tried to express how I felt about my epilepsy, I was berated for being pathetic. The second time, my trust betrayed. It was decades until I tried again.
I didn’t understand the blackness and I didn’t know how to get the feelings inside me, out. I struggled my way through the period between the fits and the return to stability, blindly. I didn’t know how to explain the feelings, so I didn’t. I shredded myself inside. I smiled as I died. Lord forbid that anyone knew how utterly despondent I felt. I made it through the darkness each time not because I was able to articulate how I felt and talk it out, but because I was able to swallow it down and, to all intents and purposes, just pretend it wasn’t happening. To this day, I struggle to verbalise my feelings. Journaling was my only outlet as I turned from teen to adult. Writing it down is part of my process. It wasn’t until last year that I started to share those words.
I’ve said before that the physical side of epilepsy doesn’t scare me so much as the emotional. It’s no wonder really. The last episode, as I wrote before, has been a complete mind game due to the circumstances bearing a striking resemblance to those in which a relative passed away. The “jokes” I’ve endured about the coming to in a pool of my own vomit, and “haven’t we all been there”, have been hard to stomach sometimes. It’s not meant to be disrespectful, rather it’s an attempt to show empathy. I’d probably say something similar if the situation was reversed. Bruises disappear, cuts heal, emotions though, they need processed.
So, today, I’m heading upwards, back to the level part of the playing field. The shadows of my mind, receding a little. The cycle is almost complete, ready for the next rotation.

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