The Fantastic Curse of Epilepsy

I recently had the pleasure of reading a friend’s poetry memoir regarding his experiences with epilepsy. He supplements his poetic verse with evocative photographs, and it’s creative, honest, authentic and thought-provoking.

Since he’s the second person I’ve recently read about who has broken their jaw (or general “face area”) in a seizure, it made me realize how lucky I’ve been to never break my face during one of my own epileptic storms.

Like him, I never thought of my epilepsy as being something that defined me. Rather, it compelled me to work around it.

I also realize not everyone can do that.

Yet, as I live my seizure-free life (two years without a seizure), I’m aware that my hardcore medication is taking its own toll. I now have some bald spots on my head.

My husband suggested shaving my head but, while I’ve done that twice in my life, I rather like having hair at this age and have less attitude than I used to have

so I feel less willing and able to pull a shaved head off.

In any case, I take care of myself and my thinning hair.

I drink SO MUCH water

and take glucosamine and a multi-vitamin for older people because I figure why not get the extra along with my medication and feel grateful for the time I’ve been given.

Because, as my friend said in his book, if epilepsy doesn’t birth empathy, a fantastic sense of humor and a genuine appreciation for the time we’re not trashing around on the floor aka “life”, I’m not sure what will.

It may only be a matter of time before my current medication stops working and, since it’s the millionth medication I’ve tried since I was a kid, I may be out of options.

So it’s important to soak up the time I’ve got while it’s here.

Just like everyone else.

There are days when we may feel pointless and undervalued by ourselves or the world

but the sooner we stop making our happiness contingent on other people’s approval the happier our short little blip of a life can be.

🖤

9 thoughts on “The Fantastic Curse of Epilepsy

  1. Love it Hillarie!!! Argh I really feel for you having to manage this. You have such an amazing attitude though and you totally rock and you’d look so beautiful with hair or no hair!!xxx

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  2. You can pull off any look, but I get where you’re coming from. Ride that hair train until the wheels come off and then we’ll sort it out from there.

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  3. You are so uplifting in your acceptance of the way things are. My mum had the Winston Churchill attitude of “If you’re going through hell, keep going”. Like you, she never dwelled on her lot in life, she just accepted things for what they were and powered through. It is the most admirable character trait imho.

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  4. Hillarie! Thank you so much for your kind encouraging words, giving me all the more determination to get the book out there. I love your hair by the way, and well done on two years!!! Take care xx

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