I was going to make a sign for this post. Big and bold: “Epilepsy! Unclean!” and then in small type underneath “not actually unclean, but definitely inconvenient. Which may as well be the same thing.” It’s not discrimination if it’s for the greater good, you see. It’s not discrimination if you smile when you say it. It’s not.
I have lived with an epilepsy diagnosis for 14 years, and there are some things that never get easier. I take necessary poison every morning. Purple pills that fry my liver slowly so that I don’t fry my brain. I go to the GP once a year to double-check that the damage being done doesn’t outweigh the usefulness. So far we are doing okay – but I have lost two years of memory to this beast, and that haunts me. But all these things are manageable. They are part of my everyday reality. I don’t have to think about them, or react to them, or deal with them. I just have to accept them. It took me a good few years to realise that.
Not so long ago, somebody asked me what the great solution to my epilepsy was, and I told them there wasn’t one. There’s medicine. There’s lifestyle choices (I don’t go to movies or the theatre, I make sure I don’t ever get too tired or too stressed). There’s knowledge and understanding (there are certain anti-depressants I shouldn’t take – I learnt that one the hard way). There’s choice.
Epilepsy could become my entire identity, if I allowed that. But most days, I keep it firmly in its corner. I give it purple pills to chew on, and it stays there, only sometimes growling at me. I have fought long and hard to take my life back. Once, the epilepsy was all consuming, taking chunks not only out of my memory, but out of my self-confidence, my faith, my relationships, and sometimes threatening to take my life. The hardest part, though, wasn’t the controlling the seizures – although that was tricky. The hardest part was (and continues to be) the social stigma.
I am extremely intelligent, but I lost my job (understandably) and I couldn’t find another one. Who knows how many times I was overlooked purely because I let slip about the epilepsy? That’s one good thing about the UK – in general, if you put the words well-controlled in front of epilepsy, they don’t automatically take twenty points off your IQ score. I’ve gone to parties and weddings where people have made special arrangements to ensure there is a sheltered space away from all the flashy lights so that I don’t have to worry. Perhaps that lulled me into a false sense of security.
Because it doesn’t matter how long you have lived with the label, or how often you are treated as the second class citizen, or pushed to the sidelines, every time it happens, it still hurts. Like the very first time. It doesn’t get easier – you just learn to process it quicker. You learn to remember it’s a reflection of them, not a reflection of you. You learn not to make the sign that calls yourself unclean, no matter how you feel inside. That’s something that they have put on you. You don’t have to wear it.
I know that there are people that read this blog that battle their own dogs in the corner – epilepsy, depression, autistic spectrum disorders, OCD, or care for those that do. I share my story with you because right now, I am struggling, not with my condition, but with the social consequences of my condition. And as I remind myself, I want to remind you.
- I am not my condition.
- I am not a lesser person because of my condition.
- I deserve to be loved, and respected and valued, irrespective of my condition.
- I am not damaged, but I am different.
- I am not unclean. I am different.
- I still have worth.
- My story still matters.
- I still can make a difference in this world.
- I don’t need to justify my condition. It is what it is.
- Those who would demean mean me, do not demean me. They demean themselves.
- Those that steal joy from my life, steal joy from themselves.
- I am who I am, in part because of my condition. All that is beautiful in me, is that much more beautiful because it exists alongside my condition.
- I am a survivor.
- I am beautiful.
- I am brave.
(I think I may need to just stick those up on my wall to remind myself. And here’s a little sign to remind you.)