My Epilepsy Story

I don’t think I’ve ever really just sat and talked about this, and it really was a huge part of my life.  In one day, at 12 years old, I went from an average pre-teen to the first nightmare situation of my life.

Starting when I was about 11, I was having the weirdest feelings…I would start to space out.  It wasn’t your normal feeling of spacing out…it felt like I was leaving my body.  Perhaps this is why people used to believe that epileptics were having visions.  That is, before people just believed that epileptics were insane.  Anyway…

I should point out that my memory from the events is…scattered.  I was about 12 years old, and I think it was a Sunday.  We had just come home from church (yes yes, I was a Christian at one point.  I’ll talk more about my beliefs another time), I changed into comfy clothes, and sat at the computer.  Out of no where, I started to feel that spacing feeling again.  It’s not a normal dizziness, it’s more extreme.  It’s like I’m not in control of myself.  I remember my mother coming in the room asking what I wanted for lunch, but I’m not sure if I answered her or not.  After that, it’s just…blank.  I’ve heard others accounts of what it was like, but I think it’s best I don’t remember.

Next thing I remember, I’m in an ambulance.  I don’t even really remember the hospital, all I know is that it was Hasbro in Providence.  I was sent home that night and I’m not sure why.  My only guess is that they were wondering if it was perhaps a fluke, as this can happen.  Unfortunately, it wasn’t, and the next day I was back in the hospital with more seizures.  I can’t remember anything from that time.  All I remember is being home.  Again, probably for the best.

I think I had countless tests done, and no real results.  Only a few things that were revealed were 1) my…right?…hippocampus isn’t developed normally.  It hasn’t affected me, really.  My memory is mostly normal, I think.  I have to study a bit harder to retain certain facts, but other than that, it doesn’t interfere in my life.  2) I have a small cyst located in my brain.  It’s not dangerous, and again, it doesn’t affect me in any way.  The doctors also believe these have nothing to do with my seizures, I just won the brain lottery, I guess.

I ended up going back to school a few weeks later.  As if those years aren’t awkward enough, the entire school now knew I had this problem and I was treated like I had some kind of contagious disease.  I also wasn’t allowed to be alone ever, I was constantly exhausted from new medication, and I when I finally convinced my mother to let me sleep in my room again, she hid a damn baby monitor in there.  I understand she was trying to be protective, but even now I look back and feel like it was slightly excessive.

On top of this stuff, I was also required to keep my grades up.

Yeah.

This was all during 7th grade, and in the final quarter of 8th grade, I missed being on the Honor roll by a few points and it was as if I killed someone.  Junior high was a nightmare, basically.

Anyway, my seizures were stable for a while until my doctor wanted to try to take me off my medication when I was 16.  This was a mistake, and once again, I had another seizure and I’m missing about a week.  I was so upset.  I had missed the auditions for the spring play, I had to figure out my school work by myself, and then had to adjust to returning to school.

I’m unsure if this is part of the reason, but I hated being in school with a passion.  Ever since 7th grade, it was constant chaos.

So what is my life like today?  Well, I ended up going off my medication again due to insurance issues.  Yay, adulthood.  I kept some by my bed in case I felt any of those strange spacey feelings, which I learned were auras, but the strangest thing happened…they never came.  This was back in…February I believe?

Now, let me point this out…DO NOT GO OFF YOUR MEDS WITHOUT TALKING TO A DOCTOR FIRST!  I know this was stupid, and if I didn’t have trouble with my insurance, I would probably still be on them.  However, it is an incredible feeling to be off medication.  I still have to be careful, and now that I finally have everything settled, I’m going to go back to a doctor (this is going to be fun to explain without being judged).  But I’m more awake, I’m more motivated, I feel like I’m perhaps recovering.

For those wondering, yes, it is possible to “grow out” of your epilepsy.  It’s just uncommon I believe.  Maybe it finally did happen for me.  I have also been eating healthier and taking care of myself, so I wonder if those are connected as well.

Well, that’s that part of my life.

Bye for now.

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