Epilepsy and Firsts…

So, it was Mr Marshall’s English Literature class and I was 15 yrs old. It was the first day that I did my paper-round. It was first day I had a seizure. The first day of the longest battle of my life. The first day of the rest of my life.

My only memory of that inaugural day of my life, is being in the ambulance chair, being wheeled backwards into the ambulance and seeing a sea of faces at the window of the assembly hall. All clamouring to see who is being taken away in an ambulance. That’s all I can actually remember of that day. Apparently, I stood up in the middle of the class, made strange moaning sounds and fell to the floor to begin the battle that rages in my brain every single day. Other teachers were called, the ambulance was called, my mother was called and my 17yr old brother was presented with my shoes, schoolbag and the news I’d been rushed to hospital. At that stage in our status of being siblings, we weren’t close. We were both teens and I didn’t realise how much I adored my big brother until he left for university a year or two later. That’s by-the-by, knowing him as I do, I can only imagine how scared and upset he must have been that day. People, other than me, being in possession of my shoes and bag has become a recurring theme in my life.

I’ve never, ever asked anyone how they felt that day. Not my family, not my friends, not the dog. No-one. And I’ve only ever told the dog how I actually felt. Animals can sense epilepsy. Another dog proved that to me in my early twenties, I guess I’ll get to that. I got a fantastic Get Well Soon card signed by classmates and teachers. I still have it 27 years later. I sometimes look at it, but I don’t really know why I kept it. I’ve been very open about my epilepsy for much of my battle, but it’s only very recently that I’ve started being truly honest about it. With others and with myself.

My openness about having epilepsy began because it was a way that I could help reduce how much others worried about me. It was a way I could talk about having epilepsy but keep it practical. What to do, what not to do etc etc. It evolved into poking fun at myself and the condition. It was a way of body-swerving my feelings, my emotions and it helps soothe others. It also helps ensure that those around me are less likely to panic if I start to seize, because they know it’s not outwith the realms of normality for me. I’ve lived with the threat of having a seizure for 42 years, blissfully unaware of that fact for 15 of them. I’ve lived with the consequences of having epilepsy for 27 years. I have the physical scars, but as with most scars, the deepest ones are emotional. I hate having epilepsy.

I’d hand my brain back and ask for a refund if I could. I can’t. Firstly, because I wouldn’t know where to return it and secondly because it may be damaged, but it’s bloody good at other stuff. The fact remains, parts of my brain malfunction. I know the terror that comes with that. I feel the terror. I know the terror that comes with the knowledge that having epilepsy could one day kill me. I spend chunks of my life terrified of my brain. There are times I cry myself to sleep through the sheer frustration of having epilepsy and being under the influence of it. I can control many things in my life, but not my own brain. My brain controls my brain; how mind-blowing is that! My brain does this to me, it causes me so much physical pain and then compounds it by giving me the ability to feel emotional pain about it too! How is that fair?? Well, it’s not fair. Plain and simple.

So, it isn’t fair. But I still have choices. I can give over my life to fear, depression, anger, bitterness, terror, hatred, self-pity, self-hatred, helplessness, loneliness, frustration or I can acknowledge that having epilepsy causes me to experience all of those emotions, but that life is worth getting up each day and carrying on for. Giving up is the easier choice. I feel like doing just that on a regular basis. After my latest episode, I wanted to give up. I was so tired, not just physically, but mentally exhausted by the battle. I was ready to let epilepsy win the war. Other parts of my life were causing me stress. People were judging me on things they knew nothing about. That stress is one of the factors that put me in hospital that day, because my epileptic brain gets stressed out by stress! An apparently misplaced sense of loyalty prevents me from dealing with the cause of that stress, but I sense for the sake of my health that is going to have to change. Anyway, I digress. Sort of. Epilepsy was taking the upper-hand. The depression was deep, inky black and consuming me. Still I smiled and joked because that made others feel better and less afraid. I could feel my being, my inner-me, my soul if you like, dying. The will to keep going was seeping out of every pore in my skin. Then the doctors deemed me fit to go home (love the irony of the use of that 3-letter word in the medical world).

Physically I was improving. Emotionally I was dying. I went home. Closed the front door after my parents left. I’m alone. No-one to make me a cup of tea. Did that mean I wasn’t going to have a cup of tea? No, it meant I was going to get off the sofa, go into the kitchen and make one. I chose to make tea. I chose to have a shower and get into my pjs. I chose to watch crappy tv. I chose to eat chocolate. I chose to keep going. Yes, I felt scared, depressed, deflated, exhausted and downright pissed off that this was happening to me again. And maybe it was just sheer habit that caused me to keep going, I’m not 100% sure about that. I know I didn’t have some kind of glorious epiphany. But be it consciously or sub-consciously I lifted my chin and pointed it forward. I find myself here, now, writing this to help me and to help, hopefully, others see that there is a choice. There is always a choice.

Today is the first day of the rest of my life.

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