Middle School
“I don’t know what’s wrong. I just feel weird. It just feels like I am in a commercial I have seen before. I know what’s going on around me. I know everyone around me. I have seen them all before. I just can’t join into their conversations. I just feel different, and then I count my fingers and pat my face. Then I am tired.”
“An EEG…with all those cords??? You cannot be serious! I can’t wear that to school! Everyone’s going to laugh at me! 24 hours? But I don’t want to. Fine! But, everyone is going to laugh and make fun of me.”
High School
“Yeah, they’re still happening. But please, don’t tell anyone. Everyone already thinks I am weird when they see me count my fingers.”
“I don’t understand. I felt fine, went to bed, and woke up in the doctor’s office. How did I get there? What’s going on with me? A seizure…. No way! But aren’t those where people just flop around. I wasn’t doing that. Was I???”
“What do you mean I can’t drive? I just got my license! Six months? NO WAY!! That is so not fair! Why is this happening?”
College Life
“What do you mean I can’t sleep in a loft bed in a dorm? Seriously, I might have a seizure and fall out? Stop worrying about me. I mean, I am fine. It’s no big deal. I don’t even really notice it until the morning.”
“I know all these last medicines aren’t doing anything for me. All right, fine but, this one makes me feel horrible. I feel so groggy. I feel sick to my stomach. I feel like I can’t help but get fat. Come on, why can’t we find one that works! Why do you make me take medicine that totally is not helping? They just make me feel worse.”
Early Adulthood
“Okay, fine I had another seizure last night, but they aren’t that bad. I just wake up totally sore. No big deal. Really.”
“Oh, dear God…. That was ME in this video tape? Was that really me having a seizure? No wonder I am so sore. No wonder everyone has always been so scared. Wow, I had no idea. Gosh that looks horrible!”
“What are these red spots around my eyes? Broken capillaries? I had always thought I was so lucky having the seizures at night. Now you are telling me I could have died from my own saliva? I had no clue. My seizures are getting worse I know. Really seizures can kill a person? Me? Wow. Okay, even I am a little scared now.”
“There is no way I am in Iowa! I went to sleep in Virginia. Oh my gosh that older girl is so cute! Who is she? What? Seriously!! She is mine? How? What has happened? Status epilepticus? Okay, please tell me again? How did I get here? How do seizures wipe away memories?”
“No medicine works. I have a period of amnesia. Now my short term memory is about gone. I have to leave notes of whether or not I stepped outside to get the mail or I ran the dishwasher. I just…I know it’s time. I need the epilepsy surgery. No medicine has worked. I’ll be fine. Seizures could quite possibly take my life. The surgery could save it.”
“I remember the petit mal while in surgery. I remember knowing I was going to have the tonic-clonic. I remember the seizures. I remember knowing everything was not going to be all right. I remember the surgery. A stroke???”
Recent Years
“The stroke was rough, but well worth it. No more seizures! Finally, what more could I want!?!”
Eight years, and no seizures. I haven’t felt this good completely free of medicines since I was young. Oh, I feel great! I am so thankful!”
“Last thing I remember was I was sitting outside on the chair. Are my kids okay? How and why did my seizures come back? What can we do?”
“I can’t drive again??? What am I going to do? How can I get my groceries? How can I get my kids to the doctors if they get sick???? No one from church is able to take me to the appointments? Really?? Most of my neighbors forget to ask me before they go to the store. I guess I will have to ask them again. I lost my license. I have lost my independence. I can’t drive. Six months.”
“Vimpat is amazing! I have not felt any side effects. I guess that was a benefit to being medicine free for so long. They have had time to develop new anti-epilepsy drugs.”
“No, really I am doing great. Besides that one blip in April, the seizures seem to be gone. Of course I am still scared. Nearly nine years seizure free. Now they are back. Seizures always have been my disease of waiting. I will be okay though. I always am.”

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