Editor’s Note: Alysa is a Junior at Nordonia High School
By Alysa Kozar
Black. That’s all I see. I know the world is going on around me in those 30 seconds, but i never know what’s going on. 2010,Waking up, putting on my Hannah Montana t-shirt and i was ready for school right? Not the case. I was ready for the doctors. I don’t like going. It’s scary, they ask me a bunch of questions, put weird glue in my hair that makes it smell for days, and I just feel so foreign. My parents say i’m just day dreaming, but the doctors say big fancy words like A Conse? Absonse? Absence! That’s it.
I don’t really know what they are, i just see black and that’s basically all I know.
I want to go to school and play with my friends like every other day. Today was not one of those days though.
It’s 2016 and I’m still struggling with this. I’m a normal kid with a very abnormal brain. I’ve never told anyone about these beyond my family and close friends. When I was younger my teachers were required to know but not so much anymore. I thought I was freak because i was different. Because I had a disease. Because my brain doesn’t work like everyone else. But i’ve stopped caring about all that. Yes, I have seizures. Congrats you know my secret, now let me help you understand it a little better.
Let me set the scene. 6th grade math class, I had a pen and a plastic bag.
Okay now stab the pen through the plastic bag, and start spinning it, it’ll be fun I swear. But I’m not supposed to fiddle with things. It’s okay, no one will notice. If you say so.
“Alysa stop swinging that bag you’re being a distraction”
“Okay sorry miss.”
Without even knowing I started to swing it again.
“Alysa I said stop. Alysa? Hello? Alysa?! Alysa!”
The entire class erupts in laughter. “Whats going on?” was the first the first thought that went through my head. They’re all laughing at you. Stupid. Freak. Stop trying to be normal. This isn’t my fault, none of this is my fault…I’m sorry. I burst into tears. I want to go home.
“Sweetheart what happened? Are you okay?”
“I had a seizure! It’s not my fault” was all I could manage to get out.
That is by far one of the scariest moments in my life. I didn’t know what absence seizures were. Luckily I do now. They are probably many questions while reading this, I get it. No one knows why I have them. There is no exact cure for them, but there is a temporary fix, which is the medicine I take twice a day.
Now i didn’t only have my awkward moments when i was first diagnosed, I still have them…trust me.
1…2…3…4…5…..10! Ready or not here I come! Oh gosh I didn’t realize it was so dark. Hopefully they are easy to find because I’m kinda terrified.
“Found you!” I yelled as I was heavily breathing.
“Hey, hey, are you okay?” my friend,Matt, said concerned.
“I don’t know…”
“Sit down it’s okay”
I felt my heart and it was almost double it’s normal speed, and I could barely breathe. I was having an anxiety attack.
Oddly enough, I’m glad this scenario happened because it made me come to the realization that having seizures has made me mortified of the dark. This led to me protecting myself and feeling like a child because 1) I was afraid of the dark and 2) this only started about 2 years ago. This also led to telling my mom and her telling my neurologist who then wanted me to see a counselor about this even though I really didn’t need it. I begged and begged my mom so she wouldn’t take me to a therapist or a counselor. Luckily she didn’t.
The weird part about these seizures is that they used to happen when I slept too, causing me to sleep walk. That was one of the first signs to what was going on…
Goodnight mommy! I love you! I trotted over to my bed and she tucked me in and gave me a goodnight kiss. I can’t wait for school tomorrow, i get to see all my friends! I fell asleep and the next thing I remember is waking up, yet it didn’t feel right, because I was standing…in water, and it was really cold. There was a rough wall in front of me, i’m beyond horrified and i had no idea where i was.
“MOM!!!!!” “MOMMY HELP ME!!!” “I HAVE NO IDEA WHERE I AM! HELP!”
I kept yelling till she came down into the basement and got me. Turns out I fell down the stairs in my sleep, nearly broke my arm and sliced my foot in our sub-pump because there wasn’t a cover on it at the time. Let’s just say that being an 8 year old in a pitch black basement, scars you, just a little. Thankfully the sleepwalking has come to an end. I also didn’t go to school the day after that, I went to the doctor instead.
I don’t know why I have absence seizures but I’m glad that I have them. Sure they can be a giant pain,
“Alysa take your medicine”
“Alysa don’t drink caffeine, it’ll hurt you”
“Alysa calm down, you’re too stressed”
“Alysa don’t cross that road”
“Alysa this, Alysa that”
Those are only some of the restrictions I have. There is also high risk of going into a coma at any given time. They keep me on my toes. Plus if you look at me, you would never guess that i have a “mental disability”. I hate that phrase. I’m just like everyone else, i just have to take medicine every once in awhile and drink decaf coffee. My seizures have made me extremely open minded to people who are “different” and everyone in general. They’ve inspired me to become a psychiatric nurse when I’m older.
More information on Absence Seizures.
I was diagnosed in 5th grade, I’ve had them for 5 years now. When I have one I basically blackout, I can’t see or hear. If I’m writing I’ll repeat the same letter over and over again. If I’m walking I’ll continue walking. I take 250ml of medicine, 3 in the morning, 3 at night. They are terrifying. They are also a pain because there is a lot of restrictions that go along with these. I have to get an EEG twice a year sometimes more, I’m not allowed to swim by myself, I’m not allowed on ladders, I can’t cross any busy roads, I’m also not allowed to have any caffeine, I can’t drink any alcohol even if my seizures go away because there is risk they could come back, and I’m also not allowed to smoke. Ever. If I drink high amounts of caffeine it will mix with the chemicals in my meds and could possibly send me into a chemically induced coma. And I would also go into a medically induced coma if I drank alcohol or smoke anything. I play piano because if I repeatedly blow into an instrument or just in general, I will have a seizure. I can’t look at flashing lights like strobe lights or anything of that sort. If you have any questions ask me, I’m happy to answer them 🙂.