For 25 years I have had epilepsy. It is something that I live with and manage on an ongoing basis. I never feel as if I ‘suffer’ from epilepsy, rather that I ‘live’ with epilepsy. It’s a subtle difference but switching the word suffer for live can have a massive effect on how I am viewed, and even how I view myself.
Yes sometimes my epilepsy can be cripplingly debilitating, but sometimes it doesn’t bother me for months on end. It is a part of me, I am a part of it – like old frenemies.
I am often asked the questions, “What does it feel like to have an epileptic seizure?” Now that’s not an easy question to answer. Seizures can differ from person-to-person and from day-to-day, but when I do seize my brain is completely enveloped in epileptic fog. This short play endeavours to explain that all-encompassing fog:
EPILEPSY: THE ALL-ENCOMPASSING FOG
A Play In Two Scenes
CHARACTER #1 – MICHELLE, Midlife, fun-loving woman. Has had epilepsy for 25 years, and still has the occasional seizure.
CHARACTER #2 – BRAIN, This is Michelle’s thought process. Her BRAIN tries to stay calm before a seizure, but often loses it. Can be a bit of an arsehole as well as extremely potty mouthed both before and after a seizure. (You have been warned).
CHARACTER #3 – ANDREW, Husband of Michelle. Well skilled at handling seizures and one of the only voices that resonates with BRAIN both pre and post seizure.
CHARACTER #4 – CUSTOMER, Has no experience of epilepsy and has never witnessed a seizure.
ACT I SCENE 1
Set in a busy supermarket deep in the bowels of Yorkshire. MICHELLE is perusing the spice shelves, ANDREW is two rows over choosing bread.
BRAIN: Moroccan chicken, what spices are we short of? I’m sure we’ve got harisa paste but do we have saffron? SHIT! SHIT! SHIT!
CUSTOMER: Did you say something?
BRAIN: OK, calm down. We know what’s coming so let’s get Andrew, you need Andrew.
MICHELLE: Hus, hus, hus ……..
CUSTOMER: (Looking concerned). Are you alright?
BRAIN: You can do this. SHIT. Come on! Think of the word then say it. FUCK! HURRY!
MICHELLE: Hus, hus, husband.
BRAIN: OK, that’s good. OH GOD!
CUSTOMER: (Whose words are now becoming less comprehensible as MICHELLE’S seizure gets closer; as if spoken from a distance, like a slowed down record, through a blanket of thick fog). I thhiiinnnkkkk sheeeee neeeeeddddds heeeelllllllppppp.
ANDREW: Coming around the corner carrying two loaves of bread. Oh shit. Honey, honey you’re OK. You’re going to seize, we need to get you down on the floor.
CUSTOMER: Should I call an ambulance?
ANDREW: No, it’s fine. We know what to do.
BRAIN: There, he’s here. We’ll be OK now.
A crowd begins to form.
BRAIN: SHIT! NO, go away. FUCK OFF!! What is wrong with these people??!!
MICHELLE: So, sor, sor, sor, sorry.
ANDREW: It’s fine honey. Come on, down you go.
ACT I SCENE 2
A small crowd has gathered around MICHELLE who has suffered a full tonic clonic seizure. Her body has convulsed uncontrollably and she has lost consciousness. Her mind is now totally confused and all she feels is fear, and the overwhelming urge to escape.
ANDREW has cradled MICHELLE during her seizure to stop her hurting herself. He has put her in the recovery position and is lying on the floor next to her. He has his arm around her. His face will be the first thing she sees when she comes around.
ANDREW: Honey can you hear me?
BRAIN: Get off me, let me go.
ANDREW: You’re safe, you’re OK, you’re with me.
BRAIN: Got to get away, got to get safe. I’ll punch your bloody lights out if you don’t LET GO OF ME!!
ANDREW: Calm down! You’ve had a seizure honey. You’re OK.
BRAIN: Andrew, I can hear Andrew.
ANDREW: That’s it, stop fighting. I’m here.
BRAIN: Where the fuck am I?
ANDREW: Hi baby.
ANDREW: Just lie there baby, don’t try to get up yet.
BRAIN: I see feet, people standing around me? So tired. Just piss off. Need to sleep now. Where’s Andrew?
ANDREW: Look at me, that’s it. I’m here.
ANDREW: I know you are honey, just stay there for a few minutes then we’ll get you home. Are you ready to sit up?
BRAIN: Home, yes need to go home.
MICHELLE: Think so.
ANDREW helps MICHELLE to slowly sit up.
BRAIN: So tired. Need to sleep. Oh God, people are looking. Shit I hurt. Say something, anything. So sleepy.
BRAIN: They look scared. So tired. Say something funny. Everything hurts. Need sleep. Come on, form each word. Sleepy. Do it!
MICHELLE: I m-m-make that a 6.5…………… F-f-for my n-n-next trick I will p-p-perform a d-d-double roll with a back flip.
BRAIN: OK, they smiled. Please I need sleep. Now let’s see if they leave you alone. So tired.
ANDREW: Let’s get you home.
MICHELLE: Love you.
ANDREW: Love you too honey.
I hope this mini play has helped people who are a struggling to understand a seizure, and goes some way to answer the ‘what does it feel like to have an epileptic seizure’ questions. Although it is a dramatisation, it is a true representation of what happens to me just before and just after I seize. It has been correlated from numerous experience to give you a flavour of what I feel and think.
I sometimes cannot remember chunks of time from before a seizure, sometimes I cannot remember anything for up to two hours after a seizure. Each person with epilepsy will experience a seizure differently. Some don’t have full seizures – they have absences, some have both, some will have no warning, some will know well beforehand if a seizure is about to strike.
I am one of the lucky ones. I have met the absolute love of my life. He is the ‘voice inside me head’ that tells me I’ll get through it. You know you have found the perfect person when you can hear their voice through the fog and you somehow know that they are holding you.
It is also highly unusual for me not to know, sometimes hours in advance, if I am going to seize. Seizures in the middle of the supermarket are an extreme rarity – for me. But that doesn’t mean that I don’t know the crippling embarrassment of seizing in front of a crowd of people.
So I ask this of you: if you do see a person having a seizure, unless you have medical knowledge or are the only person able to help, walk on by. There is nothing more soul destroying for me than regaining consciousness and knowing that I have put on a ‘show’.
Trying to think through the all-encompassing fog, move when every bone aches and answer simple questions when my brain is screaming for sleep is difficult enough. Please don’t add to the shitty mix by standing around and watching.
P.S. I have not shared the fact that I have epilepsy with you prior to this post because it’s such in integral part of me, it would be akin to telling you my eye colour. I am not embarrassed, afraid of what you might think or unwilling to share that part of my life. Although that hasn’t always been the case – it used to scare me rigid.
If you are fighting your own battle with epilepsy, or simply need help then The Epilepsy Association has heaps of knowledge. I have found them to be incredibly understanding. YOU ARE NOT ALONE!