An inspiring journey into epilepsy awareness and taking control of your own health issues

I was recently part of a story telling night where the topic was ‘Fear and Loathing’. I thought hmmm should I talk about an ex-boyfriend who was a bit dark and sinister who would definitely fall into this category? Should I talk about a past employer that I loathed and feared a little that would have been the butter on the toast of this topic or, and this is going to sound mental but the topic that came up to talk about when I thought about Fear and Loathing was actually, myself – well not me as a whole person but the part of me that has epilepsy.

That in itself might sound weird as all parts of me make the whole but on a day to day basis, I try not to identify with being an epileptic. It’s only when I get lazy and don’t take into account the triggers that make me seize, like late nights, taking MDMA caps all night, hooking up with men with no integrity and too much booze that I, all of a sudden, become this writhing, convulsive human being whom I fear and loathe. Why me fucker? Why can’t I just cut loose without consequences?

I’ll break it down into bite size chunks of which parts I FEAR and which parts I LOATHE:

I fear having the drop to the floor tonic clonic seizures because I am a control freak on some levels and when my brain goes into this state where it’s overly excited and misfiring – I start to lose control of what’s about to happen to me. So the choice is I fight it and cause damage to myself, or I surrender and go for the ride. Surrender and vulnerability have not been my strongest points to date. So the fight against it looks like this. I get anxious and start pacing like a caged tiger fully aware I’m about to be on the ground convulsing, this then leads my bowels to need to release. This is a physiological response my body goes through just before a seizure. In an incredible irony, the moment I know I need to go for a poo, is the moment I know that within 10 minutes I’ll be in the throes of a tonic clonic seizure.

I fear that people will see me twitch and spark and be afraid of me and then not want to be around my unpredictability. I fear that no man would ever love me enough to devote themselves to being available unconditionally for my condition so I hide my soft, vulnerable side from men. I fear having a seizure and waking up in an ambulance. People misunderstand what’s happening for me when I have a seizure because the education around what to do isn’t readily available and I, in the past, haven’t clued them in, due to the fear of being rejected, so they reach for a telephone and call an ambulance. I guess one thing I’ve realised is for some, the fear is not about seeing someone have a seizure, it’s the fear that they might have to internally deal with it themselves and they have no idea what to do.

I fear myself but I love myself it’s an interesting dichotomy

Where then does the loathing come in then?

Well I’ve had a sordid past with the medical industry and how they chose to deal with me and therefore I developed a healthy sense of loathing of western medicine’s approach to wellness for a few decades now. I have chilled out a bit as I have gotten older because nearly 20 years ago now, I released myself from the clutches of the “try this pill approach” and went on my own journey of discovery about alternative and holistic ways of finding wellness.

3 years ago I decided I needed to enter the world of meds again as one part in the healing picture but fuck me…..I loathe taking meds. I was on them unhappily for 7 years and off them for 9 years whilst trying to navigate a balance of living my life to the fullest, avoiding seizures and trying to live a “normal” life.

The part I loathe about the meds is that they micro manage my personality and my sexuality. They don’t allow room for me to feel highs and lows AND THE BASTARDS DRY UP MY PUSSY.

I find it difficult to really “FEEL” things. I can logically understand things and feel them in logic but the ability to feel them in my body has been shut down. Partially by me and my loathing of the diagnosis and partially because of the meds.

Now I don’t know how this story came across. Some may have considered it dark,  some, confrontational perhaps even brave to a select few but at the end of the day I think we silly humans fear and loathe parts of ourselves way too much. On a bright note, we are all working hard in addressing this and learning the art of self-acceptance and self-worth so this makes me very optimistic about our species

I’m not sure if the internal fear of potentially having a seizure will ever go away, I carry it around like a handbag and it is just a part of me that causes me grief but is my greatest teacher too. I am a glass half full kinda gal so I am on a mission to learn how to feel again.

In Love, Light and Electricity

Lainie