Monday, 23 March 2015

Lotions & Potions - Epilepsy & Beauty

Thunder and Lightning!

The word epilepsy is synonymous with "a storm in the brain".  Quite accurate really.  While a stormy brain can sound quite exciting, the reality is far from glamorous.  Most people have some experience of it, whether it's seeing a person seizing in public, or even just the rather dramatised portrayals on television.  The reality can be somewhat grimmer than these short exposures can portray, for example the girl who attends the same clinic as me who has to spend her outdoor life in a bicycle helmet for her own protection, or the realisation that most of us will never swim, drive a car or take part in many other activities a lot of people treat as normal.

What a Downer!

Yes, it can be.  There are certainly days when I detest it.  I was an avid swimmer, but haven't been able to step foot in a pool since I was 15.  When I was a teenager I had to sit down to shower so that if I fell, I wouldn't crack my head open.  4 years ago, I had a seizure in my bathroom and was unconscious against the radiator for going on half an hour.  As a consequence, I wound up with third degree burns that left me with a scar on my arm that will never fade, parts of my left hand that have no sensation and a bald patch at the front of my hairline above my left eyebrow.  Then there's the medication.  It dumbs me down and makes me feel slow.  It causes me to retain weight.  It's given me the calcium and vitamin D levels of an 80 year old.  It also plays havoc with hormones.  I could go on...  It hasn't been unknown for a person to see me for the first time and either ask personal questions about my scars or make assumptions about my appearance or weight.  I walk three miles every day, but you'd certainly never think it.  Though of course, my love of crisps doesn't help!

Being a Beautiful Epileptic

It's taken me a long time to come to terms with the flaws epilepsy has so kindly granted me.  There are a couple I'll probably never come to terms with.  As a result though, I have a very "screw it" attitude about certain things.  The main two are the way I dress and the way I experiment with cosmetics.

The Clothes: If I want to wear it, I'll wear it.  I'm not accepting that the high street genuinely thinks I should be wearing a bag.  I'm thirty, I have a personality and I will wear what reflects my personality.  If I have to go elsewhere and pay more, I will.  I'm not a big girl rights fighter or whatever, I just do what's right for me.  Unfortunately, dressing like me means I run the risk of enticing other people's negativity.  By nature, we're all very judgemental and I'm more than used to scornful comments and looks as a result of not hiding in a bag-dress.  The prospect of that always invites my paranoia to kick in, but I don't let it stop me.  What kind of example would I be setting to M if I'm not being me just because of what other people think?

The Cosmetics: I spend most of my cosmetic life performing damage control.  As long as I'm on my medication, which I will be for life, I am fighting a constant battle against the messed up hormones the drugs induce.  I will have teenage skin for life.  And that's why I am willing to try pretty much anything.  I don't feel it acceptable to be 15 years too old for teenage skin just because I don't want seizures.  Call that shallow or vain, but I'm sure I'm not alone in that one.  That's partly why I'm documenting my findings.  I find it an interesting journey and one I probably wouldn't be taking under different circumstances.  And if I come across some sort of miracle potion, I want everyone to know about it!  I think I've found something pretty close.  But that's another post.

The Silver Lining

I've written about the one of the creative upsides of Epilepsy already. But the reality is there are probably more than people realise.  The reality is, with the right outlook, there's nothing that can't be spun into a positive.  I've never had any real problems.  The people who have been negative to me in the past tend to be frightened of me.  That can be oddly empowering at times. I frequently get complimented on how I look, at least as much as anyone else, and not in a way that's "Oh, you have great hair because I have to compliment you on something that isn't your weight".  I've never had any issues finding male attention, though to be fair that has mostly been from unwanted sources!  But probably most importantly, I've never been used as the "ugly friend" or by guys being dared to "pull the ugly bird".  

This leads me to the conclusion that, while I may be self critical at times, I'm also very good at channelling my flaws in the right way.  I'm stubborn enough to refuse to just accept the downsides Epilepsy has forced on me, pull on my bag-dress and hide away from the world.  I'll find a way to get around a fat day or a bad skin day and just get on with it.  I often find wearing a bright colour or frills is enough to feel like I'm giving a big enough two fingers up to my funny brain.  I don't think I'd be doing that if I was born with a normal one.

No matter what convention or doctors tell me, I'm going to do things the way they suit me. Yes, I'm epileptic.  But I have a wardrobe of bright colours in styles I love and a 15-20 step beauty regime I genuinely enjoy performing.  I'm going to walk around with bows in my hair, a Harley Quinn & Batman printed dress and Irregular Choice shoes, not hiding any scars or flaws I may have.  The world gets me, as me, and that's that.

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