Having Epilepsy is lonely. Unfortunately there aren’t many people who understand the condition. My mother – having had a traditional Afro-Caribbean Catholic upbringing – believes that there is no such thing because it is in fact demon possession. I’ve been asked more than once if I use an Epipen to stop my seizures. When I was raising money for Epilepsy Research back in September, my best friend told me that when she mentioned it to another friend, she had been asked if it is like dyslexia. I recently shared a Facebook post raising awareness about SUDEP (Sudden Unexpected Death in Epilepsy) because people know so little about Epilepsy that many don’t know that it can cause death and friends and family were genuinely shocked when they saw the post. It opened minds to the seriousness of the condition.
Having Epilepsy makes you a rarity amongst the status quo. In the times where I have had seizures in public people unaware of what is happening, leap to the misconception that I’m drunk and then move away from me. My seizures tend to be partial-complex seizures, which don’t look like the tonic clonic seizures we always see on TV so when they see someone like me spaced out, unable to move and losing her balance, of course they’re going to make negative assumptions.
And negative reactions – even when unintentional – force us to retreat right back into the closet. Just like almost emerging from the dark looking for the light, you attempt to exit the prison building by opening up a little to somebody about your condition, only to be shoved back around in the revolving door by the gust of wind that is that person’s negative reaction.
There are always assumptions. My family assume that because I’m taking medication and yet still having seizures, it’s because of something I’m doing wrong to stop myself from getting better. According to NHS choices, AEDs control seizures for around 70% of people (http://www.nhs.uk/Conditions/Epilepsy/Pages/Treatment.aspx) and at my most recent hospital appointment, I was reminded that it sometimes takes years of experimentation before cracking the code. People often ask me that if the drugs don’t work, then why don’t I stop taking them? However do I choose to give up, or do I choose a life being served on a medical conveyor belt like the ones you get at a fancy sushi bar (yay drugs are fun!) until I find the dish that works? I guess I’m taking my seat in the restaurant where the doctors are the ones picking from the menu for me and I get what I’m given.
Accepting this is hard to digest and there are times when I do want to give up.
‘What kind of a life is this?’ I ask myself.
‘How should anybody be expected to live like this?’
‘What have I done to deserve this?’
To me, Epilepsy is like being trapped on a merry-go-round. You lose complete control because somebody else is steering and faster and faster you’re taken around and around. You know that you’re about to fall over the edge at any moment because you’ve got that sick feeling in your stomach. You feel dizzy and lose all of your bearings as your surroundings become blurry until you’re finally thrown off into the unknown. You’re losing control of your body and also losing a part of yourself over and over again and in that moment, there is absolutely nothing that you can do about it.
I read one woman’s story online, whose husband had called her selfish for having seizures (regardless of medication) and not being able to live a normal life. To him, she wasn’t doing enough for him. I’ve had the same negative reactions from family members of my own.
On the other hand, in comparison to others, my Epilepsy could be worse.
I have the freedom of having a job (when I’m well enough to go into work!), living in London with friends, and studying for my Masters. I can’t drive, but at least I can take a walk on my own when I feel up to it. Until recently, I was able to run – however my seizures have started to get worse again which means that I’ve had to put my running days on hold. For now. Thankfully my partner has always known me as an Epileptic and has been there for me throughout. Episodes where I can’t string a sentence together or forget what I’m saying midsentence are all the norm for us as a couple!
However I still have my doubts: why would anybody want to marry somebody who’s always ill, tired, depressed? Someone who has to choose between staying on medication or having a child? Life is forever uncertain, however as an Epileptic that uncertainty is an endless merry-go-round.