Having epilepsy is lonely. Unfortunately, there aren’t many people who understand the condition. My mother — who had a traditional Afro-Caribbean Catholic upbringing — believes that there is no such thing as epilepsy 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 when she mentioned epilepsy to another friend, her friend asked her if it is like dyslexia. I recently shared a Facebook post raising awareness about sudden unexpected death in epilepsy because people know so little about epilepsy that many don’t know 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 among the status quo. When I have had seizures in public, people have been unaware of what was happening, leaped to the misconception that I was drunk and then moved away from me. My seizures tend to be complex partial 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 emerging from the dark looking for the light, you attempt to exit the prison 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 assumes that because I’m taking medication and yet still having seizures, I’m doing something wrong to stop myself from getting better. Anti-epileptic drugs control seizures for around seven out of 10 of people living with epilepsy, 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 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 drugs on a medical conveyor belt like a fancy sushi bar until I find the “dish” that works? I guess I’m taking my seat in a restaurant where doctors are the ones picking from the menu 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 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 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 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 you can do about it.
I read one woman’s story online about how her husband called her selfish for having seizures (regardless of medication) and not being able to live a normal life. He thought 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 Master’s degree. 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 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 mid-sentence are all the norm for us as a couple!
However, I still have my doubts: why would anybody want to marry someone who’s always ill, tired and 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.