Being Thirteen and WTF Are Temporal Lobe Seizures?

I attended a free private Lutheran school from kindergarten through 8th grade.

For 9th grade all us St. Johns kids had to transfer schools because the grades in our school ran out.

Some of my good friends left for junior high after 6th grade and were really happy to be “liberated” but I was content in my nice little everlasting grade school where I could freely wear my overalls backwards and be super into Kriss Kross without taking any grief about it.

I even felt free to challenge one of our 8th grade teachers who thought we were all into Aerosmith and, because of this, his inability to understand the youth, played the music video for Aerosmith’s “Dude Looks Like a Lady” so he could ask: “How can you guys be into this?”

And we groaned and were all “Are you kidding?!” You got the wrong youth, Mr. Otto.

So I brought in “Jeremy” by Pearl Jam to show we were not our older siblings and didn’t like that hair band shit because we had good taste and Steven Tyler was impossibly gross and, besides, we were grunge. Grunge dudes still had long hair but used less hair spray and wore more clothing.

I felt my classmates consented.

So I was happy where I was. For me it was like leaving a nice little safe haven composed of roughly the same group of people for a much bigger place with lots of different, new people… public school kids.

Part of me was happy about it because we’d all finally be mainstreamed.

But the rest of me was petrified about leaving St. Johns for junior high.

And, meanwhile, I had lost my mind.

That was also new.

Frantically trying to hide that (is this puberty?!), I put everything I had into pretending my sudden insanity wasn’t happening while transitioning to my new school. I had long feared the mandatory transition from my small, familiar parochial school to public school, and now I had to do it while hiding what seemed to be some form of night panic which kicked in as soon as the sun set.

Social suicide felt imminent. 

Because this is when I “got” epilepsy but I didn’t know it at first. Rather, it felt as if I had just suddenly lost my mind. Which was excellent timing, of course, given how I was about to make a first impression on a lot of new kids and… going insane right about then was not ideal.

Though it would really make an impression.

But I didn’t want to make any kind of impression. I just wanted to make friends, escape persecution, if possible, and get through school without any drama, fights or explosions, if it could be helped.

And having epilepsy wasn’t really going to help my plan.

But, again, I didn’t know I had epilepsy. At first, it wasn’t as if I was thrashing around on the floor. The tonic-clonic/grand mal seizures didn’t happen right away. Rather, it seemed like I had just worked myself into some kind of mental frenzy which I couldn’t dissect.

This is because I first experienced temporal lobe seizures.

These are the worst. You know you’re having one of these because, out of nowhere, your stomach feels like it’s on a roller coaster. It’s as if your stomach is going up, up, up… and then suddenly it’s nose-diving down a vertical plunge .

And the thing… it’s not.

Maybe it could talk to someone.

Because, obviously, your stomach is inside you, and you’re just standing in the middle of some fucking room wondering why your stomach thinks it’s on a roller coaster because it surely is not.

In addition, you’re hit with this overwhelming dread. Pure, unfiltered dread, as if your worst fear had been confirmed and was physically coming for you. The dread just crashes down on you, crushing you, and the only action you can conceive is dropping to your knees to whimper. That’s all that seems possible.

It feels that bad.

But I couldn’t fall to my knees and whimper in junior high. If anyone fell to their knees and whimpered, they would attract serious attention and not be allowed to quietly get through school and, it follows, the life beyond it.

In addition, the thing that really made it feel like I had lost my mind is how the temporal lobe seizures would kick in as soon as the sun set.

Like I was an anti-vampire.

That didn’t help.

Certifiably insane.

Being thirteen was so much worse than how Betsy Haynes and Ann M. Martin had made it sound, and I thought they had done a great job at prepping me for all kinds of terrible things to come.

And, I felt, if I explained any of that to anyone, even my parents, I’d just be quietly herded into an asylum that still stood somewhere where I’d make new friends.

Dance at Insane Asylum by George Wesley Bellows

But I didn’t want to risk it so I mastered “nonchalance” and worked quite hard to build a happy, go-lucky persona which would hide what seemed to be my budding insanity.

One Big Happy Front

Besides, if I had explained any of what I was experiencing to other people it would certainly not have been seen as a form of seizure as, back then, they only really acknowledged a few kinds of seizures and would think it was probably my period or I was a witch or something.

And then prescribe me Prozac.

It was 1994 but it didn’t feel that neurology/society had really come very far as they were still trying to treat epilepsy with wonky medication which was a real crap shoot.


But soon enough I had the big kind of seizure which meant I was unconscious so I couldn’t actively downplay it while it was happening or anything… very hard to hide those, in general. So I felt very lucky I was only experiencing those in the very early morning.

Not at school or anything so I could still do my best to appear “normal”.

I never had a real shot at being normal, regardless of epilepsy, but, when you’re imploding in every way possible, “appearing normal” becomes a kind of mecca state.

And the temporal lobe seizures or the “I’m-going-insane! feeling” stopped suddenly with the advent of tonic-clonic seizures.

I wasn’t crazy. I was epileptic. And, since it was the early 90s, that was a huge distinction.

But, falling to the floor and convulsing… now my parents knew something was really wrong and everything got fast.

When I started having tonic-clonic seizures I officially entered the exciting world of neurology because, when you’re having the highly dramatic, life-threatening tonic-clonic seizures which look as if invisible forces are threatening to tear your body apart, you’re deemed “totally on the rocks” and panic ensues.

This is why, as a kid, I wanted to just hide everything because… being a kid, you’re really largely subjected to whatever the adults want to do with you and you don’t have a lot of say in the matter.

At the same time, my parents didn’t seem to have a lot of say either and we all just did what the doctors told us to do.

Hashtag tyranny.

The positive side of all of this was how I no longer felt crazy and hunted by the night, but I also began to have terrible reactions to all the new anti-convulsion medications and it was a struggle to find one that didn’t make it worse.

And the neurologists strongly felt I would outgrow it.

Like growing pains.

What’s really a trip is how I didn’t even know the “night fear” and all that came along with it was a temporal lobe seizure until a few years ago and I Googled it because I was again experiencing that terrible state of being after I had experienced a tonic-clonic seizure and there was simply no fucking way I was going crazy.

Not then. I’d had plenty of time to go crazy and it was simply too late. I wasn’t having it. There had to be a rational explanation.

And… boom. Makes sense because I’m so fucking epileptic. 👑

But I didn’t know any of that when I was a kid. For years, I just hoped I didn’t go crazy again and never talked about it.

I just smiled and talked about boys and shit.

So I’m really happy that neurological drugs have really come a long way since I was a kid though I’m still super nervous to stop the current drug I’m taking which is working better than any other medication has because I suddenly have to start something new.


But Life Change Pharmacy called me today to tell me the new medication my current neurologist prescribed to stop all the seizures I’m apparently always subtly having is ready.

I took stock in how the new pharmacy’s name is “Life Change”. That feels like a sign and they deliver! Let’s see if they can handle our neighborhood which has definitely been a life change for us.

I told them that they really have to knock on our door when they deliver it because we don’t have a doorbell and any mail left on a porch around here will get stolen.

Hashtag Milwaukee_pride! Did you hear that story about when thieves broke into the Kansas City Royals’ clubhouse after a night game on June 11 at Milwaukee County Stadium and walked off with 52 of the Royals’ 60 jerseys, along with a bunch of their caps, gloves, jackets and shoes? So the Royals then had to wear whatever was left of their jerseys, as well as anything the Brewers could loan them.

These two players are on different teams. WELCOME TO MILWAUKEE!

Ah, Milwaukee. When my husband and I lived in Pittsburgh for a year recently we lived in our customary bad neighborhood (though this neighborhood was crazy gentrifying before our eyes) and we’d marvel at all the Amazon Prime shit we’d see delivered to people’s porches and just… sit there and not be stolen.

It was like a trick of the eyes or a magic trick: “See it’s there and… close your eyes… and open them and omg it’s all still there omgggggggggg!!!”

And then, since we’re from Wisconsin, we’d think we should steal it if only to teach these people not to trust others.

See how I just started talking about baseball there? It’s because I’m so nervous about trying the new medication. But, it’s Friday, and I GOT A MARGARITA TO LOOK FORWARD TO!!!!

Margarita in a can? It’s not so bad on ice… and it’s a global pandemic so #grateful!

MARGARITA TIME! Happy Friday, everyone! 🍹

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