An Open Letter About Epilepsy,

it isn’t just seizures.

It’s losing pieces of your memory and screaming for your mother and not realizing she is one of the 20 unfamiliar faces above you because you are that messed up. It’s slipping in and out of reality for hours and being messed up for days but having to try and get it together because the world doesn’t wait for you to catch up. It’s being asked “what’s the last thing you remember?” and not being able to answer because you can’t remember anything. What’s your name? Where are you? Have you been in this room before? It’s ten strangers walking around your bed with needles and charts trying to determine why you seized in the first place. It’s being injected with medication that burns your veins because you can’t keep anything down. I

It’s countless amounts of EEGs and sleep deprivation tests only to be told that the specialists don’t know why you seize or where your seizures come from. It’s having to constantly test your Lemitical levels every time you start a new pill so that you can be sure your seizures will stay under control. It’s having to remember to take your pills on top of your daily life.

It’s being told you have to be seizure free for at least a year if you want to be able to drive. It’s missing out on a rollercoaster you’ve been wanting to ride or seeing your favourite band because the lights could trigger you. It’s missing things that those without Epilepsy take for granted.  It’s not just seizures, it’s been my way of life for 9 years and it will continue to be my life. I constantly live in the fear, even though I’ve been seizure free for 5 years, that if I seize again no one will be there to help me since mine happen at night.

The misunderstanding on how to help someone who is seizing is a terrifying thing. I can’t even count the amount of times someone has told me that if they see someone seizing they’d put something in their mouth to prevent them from biting through their tongue and when I tell them that doing that is the worst thing you could do, they tell me I don’t know what I’m talking about. You sit there behind your ignorance and tell me I don’t know what I’m talking about but this is my life. If I am seizing and you put something in my mouth to prevent me from biting through my tongue you raise my chances of choking on my own vomit. It’s not a pretty picture but it’s true.

Instead of getting defensive, listen to what I’m telling you. Listen to me when I tell you that you need to put the person on their side and make sure there aren’t any objects around them that they can hurt themselves on. Listen to me when I tell you to make sure there isn’t anything tight around their neck and listen to me when I tell you not to put anything in their mouth. Listen to me when I tell you to not retrain them and to give them space and please listen to me when I say that if they are seizing for more than 5 minutes that you need to call 911.

Please listen to me because this is my life and it’s out of my hands.

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One thought on “An Open Letter About Epilepsy,

  1. Good comments! I had E for 30+ yrs. For the last 13 yrs I was housebound & couldn’t go outside w/o another adult. Thankfully, I had surgery & have been sz-free for 23 yrs & 4 mos. I will never forget & am so thankful for my health.

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