Tag Archives: Idiopathic Temporal Lobe Epilepsy

I Write, Therefore I Am… An Epileptic

wheatfield with crows

This post is part of the Epilepsy Blog Relay  which will run from November 1 through November 30.  Follow along and add comments to posts that inspire you!

When I picked my date for the Epilepsy Blog Relay I had no idea it was Thanksgiving.  I didn’t know until I had already written most of my blog.  Thus, this is not a traditional Thanksgiving article; there are no Pilgrims or turkeys or lists of things I am thankful for.  As it turns out it is about the one thing (other than my family) I am most thankful for: my epileptic brain.  Without it I would not be alive and this article would not be written.  I have to appreciate the brain I have.

We cannot untangle the connections between epilepsy and creativity.  It all starts with the brain.  I write.  I create.  Sometimes I hit the floor.  Sometimes people tell me they envy my creativity and wish they were creative like me.  I wonder what is it they think I have that they do not.  The only extra thing I have is epilepsy.  I have to take my creativity as the flip side of my epilepsy.  I have to.  All that time spent out of my head, trapped away in my body that will not respond to appropriate stimuli.  When I can talk and control my body, I can write.  I can create.  I cherish that.  All that excess electricity buzzing around in my head must have some benefit.  Synapse snap, crackle and pop.  Ideas rush around like freight trains.  

I read about the authors and artists who have also experienced epilepsy.  Their presence in history gives me comfort.  At least Edgar Allen Poe and Vincent Van Gogh knew what I do: the omnipresent fear of the unknown moment of time snatched away.  One moment here, the next gone.  Who knows when or where we will wake up?  At least I can write about it later.  Emily Dickinson most likely was an epileptic, too.  It’s probably why she didn’t go out much.

It’s a trade off, this life of unpredictable brains.  It’s miserable when your brain and body betray you.  Sometimes, my brain works just fine.  My brain is many things: my mistress, my lover, my best friend, my worst enemy.  I am always afraid that my brain will kill me.  I will take a step and then fall onto something deadly this time.  I have to write it out.  The fear consumes me.  That is epilepsy.  It’s not just the lost time, the unknown bruises, and the fear of falling; seizures steal us away from our lives and our families.  I am a burden to my husband and children, I can’t help but be.  I may need them to make sure I don’t choke on my vomit.

When I write, I feel better.  The fear escapes and seems less scary on the page where it can be edited until it shines like a gold, instead of the late night paranoia of waking up once again in a hospital without knowing how I got there.

I need to write it out, tell my story, shine a light into the darkness so I can make sense of it.  I might collapse, but I might create something meaningful instead.  I have to try.  That’s all there is.  Consciousness and creativity or seizures and time lost.  I know what it is like to fall and to rise again.  I am a seizure phoenix.  I rise out of the ashes of confusion and write so I may fly away from my body and brain that betray me so brutally.  Do I write because I have epilepsy?   I believe so.  I can be thankful for that.  What choice do I have?  I have to pick myself up off the floor and write about it.

NEXT UP: Be sure to check out tomorrow’s post by Anthony Bartley for more on Epilepsy Awareness https://whatepilepsyisreallylike.wordpress.com For the full schedule of bloggers visit livingwellwithepilepsy.com/epilepsy-blog-relay.

Advertisements

Leave a comment

Filed under Essays, Living w/ Epilepsy, Non-fiction

Seizure Drunk

starrynightfusedglass

Whenever I end up in the hospital they ask me if I am on drugs.

The only drugs I am on are legally prescribed, anticonvulsant, pharmaceutical drugs.  The doctors ask me repeatedly if I have taken any hard street drugs.  They never believe me when I say no.  I am honest about my eating and caffeine and drinking habits.  I tell the truth about smoking.  I do not take drugs.  They never believe me.  Seizures look like drugged out states.  People in pain look like junkies.  I apparently look like both.  My liver has been infected, so clearly I was an IV drug user.  I am honest to a fucking fault.  Ask anyone.  I’m not known for keeping secrets.  I’m not on drugs.  I have never stuck a needle in my body, I’m not on drugs.  I’ll tell the doctors the truth.  They don’t believe me because seizure victims look like drugged people.  They don’t like drugged people.  They certainly didn’t treat me well when they thought I was on drugs.  I don’t know why seizures make me vomit.  But they do.  I’m not drunk or on drugs.

When they knew I was having a gallbladder attack, I was treated kindly.  They at least saw me expediently.  Of course, due to my liver, they asked me time and time again, have you ever taken IV drugs?  I tried to explain how difficult my veins are to find.  I would never be able to be an IV user!  My daughter’s cesarean birth was delayed because five or six different nurses couldn’t get the IV in, on several different spots, on both arms.  I’m not a drug user.  I’m an epileptic.  It’s a real bitch.  On so many levels.  My liver was most likely infected because of my seizure meds, or my rotten gallbladder, which has since been removed.

The last time I was in the ER they sent me home with paperwork that said I had an “Altered Mental State-Resolved”.  It took me a few days, because my brain was too foggy and mushy to care, but I eventually realized that it that said nothing about seizures.  I asked my husband what it meant.  He shrugged.  “Does that mean drugs??”  He nodded.  “I was having seizures all day!  I have epilepsy!”

“They can only judge what they see. The ER Doctor didn’t see you have a seizure.”

She only saw my confused, postictal, fugue state, that lasted an entire day, accompanied by vomiting and dehydration.  I get it.  I get it.  Seizures are scary and confusing.  Sometimes I wake up to people looking at me like what the fuck did you just do?

As it was happening, I was screaming, trapped in my head.  I’m an agreeable enough person.  If you tell me to come down stairs, I’ll come downstairs.  When I had my gallbladder attack, I met the paramedics at the door, ready to go with my purse and wallet and coat on.  The altered mental state time, I was stuck in a seizure unlike any other and I couldn’t control my body.  Even if I thought I was talking, I wasn’t.

The brain is a cruel mistress.  I would be lying if I said I didn’t enjoy my brain.  I amuse myself with puns and allegory.  I am proud of my writing.  That is all my brain’s doing.  But my brain also hijacks my body.  Just like a terror attack, everything is okay.  Until it’s not.  The Brain Bomb goes off and I drop to the ground.

My brain makes me cranky and sensitive to sound and light.  I can’t drive because I can’t trust my brain to keep me conscious.  It’s a real pain in my ass.  My family can tell when I’ve had a seizure.  They have to tell me.  I change somehow.  I can’t tell you how because I don’t remember.  My voice changes, my eyes look around with childlike wonder/terror.  I can’t think of the words I want to say.  In the days after my handwriting changes.  If I can even write at all.  I am not in control of my body.  I vomit and spill water all over myself.  Did I mention it’s a real pain in my ass?  Once I spilled water on myself.  I was unable to drink it.  I hoped that perhaps osmosis would be enough, so I laid in the water for hours and hours.  I hoped we had some left over gills from our common fish ancestors.

My head is half-pounding today, the pain lingering behind my eyes and centered in my forehead.  It feels like my brain is mushy somewhere inside there, like my spinal fluid levels are off.  Headaches are usually a sign of a seizure.  It’s classic postictal (post-seizure) state.  It’s a ice pick through my brain.  Just like that man who had the train spike through his skull and lived.  That’s how I feel.  I look like a drunk, drugged out person.  Apparently, I look like someone who is unworthy of sympathy.

Maybe that is why so many people are dying from heroin.  They are afraid to seek treatment.  I am afraid to seek treatment.  I’m not even on drugs.  I don’t want to be treated like I am.

A seizure is so much worse.  I can never get clean.  There’s no rehab for me. I can just hope that the next time the hospital will believe me.  I didn’t take any drugs.  I’m having a seizure.  It’s not my fault.  I’m not drunk!  I’m trying to answer your questions.

The first time I ended up in the ER, in 1997, they asked me what drugs I took.  The most recent time, in March, they asked me what drugs I took.  The answer is always the same, “What the hell are you talking about?  I was just at home, minding my own business, not taking drugs.  What the hell happened??”  Seizures are like that.  When you blackout, you are black out.

I wish people understood.  I wish the paramedics and ER doctors understood at least.  I’m going to keep talking about it until they do.  What else can I do?  I am at the whim of others when I have a seizure.  It terrifies me.

Leave a comment

Filed under Essays, Living w/ Epilepsy, Non-fiction

Katie vs. the Fridge

fridge-001

I am obsessed with my face: how it looks and how it feels.  It huuuuuurts.  My nose is swollen.  At least I don’t have a black eye.  Or two black eyes!  I am glad my nose isn’t broken…  It could be.  I fell into my fridge.  The kind of fall where you can’t even react to catch yourself.  There was no way to catch myself: my brain was misfiring like a son-of-a-bitch.  Shoulder, face, knee, floor.  I suffer the bruises for days and wonder if perhaps I gave myself a concussion.  How do you tell when everything hurts?

I assume my nose would hurt even more if it was broken.  It would look worse.  But it hurts plenty.  The bruises are beginning to spread.  I can tell my face is swollen and discolored around the bridge of my nose.  Bam!!  Into the fridge.  Everybody who thinks I’m a faker, a lazy person who just doesn’t want to work, may I offer my face up for evidence.  Evidence item B would be my arm, which looks much worse and feels much worse than my face.  It took the first fall, into the side of the fridge.  The bruises are just starting to emerge.  The deep muscle contusion is already black and blue and purple and red.  My knee is bruised and my back feels twisted.  That’s a usual feeling after an convulsion.  All those neurons and muscles firing and clenching and releasing.  And there’s no-one there to put your hands up when you fall during a seizure.  I’m gone.  Head falls, there’s no breakfall.  The ground is my enemy.  I guess so is the fridge now.  I had to ask my kids, you can call them to the witness stand, “What happened?”  My consciousness was unconscious.  I didn’t even realize I found myself on the floor covered in cinnamon twists my husband made.  I had been trying to put them away in the fridge, but my brain had other plans for me.

They first thing I can remember is my daughter asking me if I was okay and if I took my medicine.  I said that I was fine and why was she asking me that?  What gave her cause to ask?  She told me I had a seizure.  It was news to me.  I did not yet hurt.  I didn’t remember the floor or the fridge.  I got the full story from my son, he added that I was leaning in the fridge.  I remembered that I had been doing something before I felt the familiar wave of dangerous impulses and misfiring neurons.

How I hate my brain.  Would you trust a brain that made you fall on your face while putting food away in the fridge?  I’m so glad my nose isn’t broken although it is certainly bruised.  I am icing all of the parts of me in a steady rotation.  My arm should have been up and reaching for something to catch me as I fell.  That’s how normal people fall, they use their arms to catch themselves and protect their faces from the shelves of the fridge and the floor.  No, not me.  My arm was a dead weight lucky to absorb the brunt of the impact first.  There’s that at least.  My arm hit the fridge first, then my face.  That’s what I can gather from the evidence, my bruises and my children’s testimony.  I have no memory of the event at all.  I don’t know how much time I lost.  I do know that for days and days I will feel like I am swimming underwater with my breath held for too long.  My lungs are screaming to breathe in, even though I know I would only suck in water and drown.

Leave a comment

Filed under Non-fiction

The Nazis Came For Us First

Image

The Nazis came for us first; the epileptics, not the Jews.  Physical and mental deformities were much worse than merely being a Jew.   We couldn’t be allowed to reproduce and spread our dark and dangerous diseases to the Aryan race.  Starting on January 1st, 1934, I could have been taken and sterilized, no questions asked, no problem at all.  In 1939 it was deemed by “Action T4” that those who were considered “incurable” should be “granted a mercy killing.”  These incurables, people just like me, were the first to be sent to their deaths.  Who would protest for the freak, shaking in the street?  My husband reassures me, this wouldn’t be you, you just wouldn’t go out…  Did that help Anne Frank?

This was less than 75 years ago.  Before the Nazis, they burnt us at the stake, crushed us under millstones.   Surely she must be possessed, screaming and falling down, the shaking, the vomiting.  Even doctors that thought they were helping drilled holes into our heads with gruesome blunt tools.   Electroshock therapy anyone?   I shiver to think what would have become of me in a previous generation.   Not so many years ago, I could have been sent to an institution and restrained.   I truly appreciate advances in medical science.  Pharmaceuticals give me a better life.  Of course, things are not all roses and sunshine either.   Medical science and pharmaceuticals haven’t cured me.  My meds make me sick and dizzy and tired. I suffer from double vision daily.  My ears ring.  My seizures are not fully controlled.

More than one doctor has tried to convince me to have brain surgery.  That is not for me.  It is more sterile these days, but it is still gruesome.  I think of it as a melon baller, what they want to do to my brain.  Just go in and scoop out the part of the brain where the seizures start.  Where they think my seizures start.  No thanks.  I don’t want to do that.  Nor do I want to become a cyborg with wire running from an electrical pacemaker in my chest, into the deepest parts of my brain.  No, I’ll just go and take my pills now.  The side effects are crippling, but I have less seizures and my brain is intact.  I guess it is good enough for now.  No one is trying to kill me at least.

Of course, if I do have a seizure out in public, I must certainly be on drugs.  There is nothing worse than having a doctor angrily accuse you of being on drugs when you don’t know where you are or how you got there.  One minute here, the next gone.  I have no concept of time during a seizure and despite my talking and blinking and maybe answering some questions, I am not there.  I don’t know where I am.  Where does your mind go when you aren’t home?  Surely I don’t know.  My head is an attic full of ghosts and whispers, cobwebs and dust.  It is old home with an entire wing closed down and shut off for years.  Things get lost easily.  But it’s not because I’m on drugs.

I have Idiopathic Temporal Lobe Epilepsy.  It’s a mouthful.  Basically, my seizures start in the temporal lobe of my brain, for no reason.  Doctors use the term idiopathic to refer to diseases with no known cause.   Idiopathic is probably the scariest word I know.  It has it Greek roots in the words idios (of one’s self) and pathos (suffering):  personal and hurt.  Ouch.  My idiopathic temporal lobe epilepsy is my personal hurt and it has no explanation.  That part really scares me.  Everybody wants a reason.   I concoct reasons in my head.  But they’re not true.  They are just stories.  I was born this way.  I didn’t believe it for years.  YEARS.  That’s my personal hurt.

Honestly, now I am just glad to have a name for this terrible thing that happens to me.   Once they didn’t even have the words to explain these “fits.”  I didn’t always feel this way.  In the beginning, just hearing someone say the word epilepsy was one of the worst things about it.  It was laced with fear and loathing.  It was the worst word in the whole world, a dark, mysterious disease.  Now I am relieved to have a definition that I can share with the world.  It’s a short cut.  Everyone can learn the words “epilepsy” and “seizure.”  I won’t have to define them again and again.  I won’t have to explain as much.   I’m thankful for that.  It’s not really a complete explanation, but it’s something.   It’s a band aid.  A band aid serves it purpose.  It can’t heal everything, but it can hide the hurt and keep the dirt and germs out of the wound.

I may be incurable, but I am not going to be euthanized.  I am not going to hide in the shadows anymore either.

13 Comments

Filed under Living w/ Epilepsy