moments that disappear. ... : lilah's story of living with epilepsy. (part one)

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a girl lives with epilepsy.

Submitted: June 23, 2017

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Submitted: June 23, 2017



My name is Lilah Sue Berkley; I live in Ocala, Florida, with my family.  I am 11 years old.

I also have epilepsy.  Have had this since I was six, after I fell off a horse and struck my head; for some reason, it has caused me to have seizures, where (according to my family and other people) I fall to the ground, unconscious, and start seizing uncontrollably for a few minutes.  I don't remember the actual seizure events; I just know I smell something like rotten eggs and get lightning flashes in my field of vision (auras, or a warning signal) beforehand, and then, everything goes black.  When I come to, I am tireder than tired, and my whole body hurts, and I feel so confused.

Whenever I have a seizure, I have to go to the doctor's, where he can check me over, to make sure that I am okay, and he also adjusts my medication, to help me live a better, more fuller life, even despite having epilepsy.  I used to have a lot more seizures when I was younger, but now I finally think that I have found the right combination of medictions to help me manage the worst of my seizures, and to where I can do more things.

Sometimes, though, wheenever I do have a seizure episode, my family tends to baby me, which drives me crazy!! I am NOT a fragile object; I'm just a kid who happens to have epilepsy and has seizures sometimes.  That is probably the biggest issue I face, besides getting made fun of by people who don't understand my condition or what it's like for me.  They think that I'm gonna die whenever I seize; I guess I look pretty bad to a lot of people.  They say my face turns blue and I make horrible, gasping noises, and drool copious amounts of blood-tinged spit, and jerk all over, like a dog that's been hit by a car.  Of course, I am not aware of any of this (as I am unconscious), but I now understand why I am so tired after I do have an episode.  

Whenever I do seize, someone has to be by my side and move me away from any objects, so I don't hurt myself, loosen my collar if I have one, turn me on my side, and make sure that I don't choke or am breathing; if I do quit breathing, then they have to do rescue breathing on me; if the seizure is particulary bad, or if it doesn't stop within five minutes, then an ambulance has to be called, and I have to be carted off to the nearest hospital emergency room, to be treated (and possibly admitted).

It's not fun living with a condition like epilepsy, but I'm pretty well used to it by now and I am doing much better, in terms of controlling of my seizures; the last big seizure I had was probably about six months ago; the medications I have now are doing what they're supposed to do, and that makes me very happy.

I will write in here again soon; have to go to the store with my Mom; she wants me to join her.  Sounds like a plan.  Until later, this is your new friend, Lilah Sue Berkley, signing off! Take care and may God bless you always!

~Lilah. :)

*End of part one!*

© Copyright 2018 Karen Lynn. All rights reserved.

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