Tag Archives: Tonic–clonic seizure

Driving Me Crazy

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I often find myself bursting at the seams to talk to someone.  It is an occupational hazard, a fact of life. I am a writer, so I need to spend time alone.  I am an epileptic, so I am confined to my home in ways that you can never understand unless you have been ill for a very, very, long time.

Losing my ability to drive has been one of the worst things in my life. I am at home and there’s no one to talk to.  When I do go out and run into the people I used to see, the people I used to know, they ask me, “When will you get your license back?”  It always seems like a polite question…  They don’t mean to be rude, but I want to scream the answer back at them, “NEVER!!” Never.  I will never drive again and if you want to see me you will have to come over here.  I am here alone with my family.

The next question I get is, “When was the last time you had a seizure?”  My answer always shocks them, “Last week, two weeks ago, I can’t remember.”  It was hopefully not sooner.  I try to stay home in the days after a seizure.  They cluster together.  I hate for people to see me seize.  It’s not a pretty thing.  And I hate to end up in the ER.  Strangers do that.  My family knows better.  I need to take my meds and go to bed.  It’s just my life.  And I will never drive again.  I gave up that hope years ago.

Occasionally my husband wants me to move the car from one side of the street to the other.  It was a Monday morning and if we didn’t move the car we would get ticketed.  I couldn’t.  I can’t.  It’s all or nothing: nothing is the only answer.  My husband agrees but every now and then he doesn’t want to get out of bed.  We both wish I could move the car.  I can physcally drive. I was an excellent driver.  But I can’t.  There are no rules to seizures.  It only takes one second and then I’ve crashed my car into the tree in front of my house.  Or a kid walking past the park….  No. I do not want to take that risk.  I cut that part out of me and burnt it when I turned in my driver’s license, the second time.

I don’t drive not because it’s the law, but because I love my family too much.  I don’t want to lose time and lose control of a ton of metal and flammable liquids.  I can’t.  I can’t. I want to.  Some days I want it so badly I can feel the wind in my hair and the smell of grapes in the air in September.  I tell myself it’s not the full moon, I’m not tired, I’m not whatever it is that might trigger a seizure today.  I see myself walking to the car, turning the key and driving away into the sunset.  It’s such a pretty dream. It will never be.

I’m never going to stop having seizures and even if I do, there is no amount of time that will pass that will guarantee that I will not have another one, at any given moment.  I know that in my bones, in my synapses that like to burst with energy and electricity.  Driving isn’t safe for me and it’s not safe for you either.  You should thank me that I value *your* life enough not to drive.

I beg you, please don’t text and drive. I gave up driving for safety’s sake.  You can give up your phone for safety’s sake.  You don’t even have to give up your phone.  Please, just put it down when you are in the car.  It only takes one second to crash a car.  My epilepsy is genetic, yours could be because of a traumatic brain injury you receive when you crash your car because you were texting while driving.

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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.

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

Blood or Bone

keep calm

May I please be explicit: I do not want to go to the hospital due to one, two, three, four, or possibly even more seizures.  Unless I am bleeding or you see bone, please leave me alone.  2000% alone.  If I am unconscious, leave me that way.  If I am still breathing, I am trapped away and I want to be.  I’ll be back soon.  Please do not touch me.  Please Do Not Call 911.  Seizures are not emergencies for me.

Trying to understand what someone is saying to you during and after a seizure is impossible.  It takes too much effort.  It hurts.  I do not want to answer questions about my seizures or anything.  I do not want to be conscious at all.  My body wants to be unconscious for days afterwards.  It needs to be too.  My brain is mush and cannot stay focused.  I want to be home alone in bed, and never in a hospital bed.  I won’t know how old I am when you ask me, and not even what year it is too.  I know who I am when I am me, but who am I when I’m not me?  I don’t want to go to the hospital to find out.  Eventually I know what year it is and the month too.  It just takes me some time.

This isn’t my first rodeo.  This isn’t my hundredth seizure.  I am more aware of my epilepsy and seizures that anyone in the ER.  And I can’t tell them anything.  Don’t call 911 just because I have a seizure.  I don’t want to go to the hospital.  It is unnecessary and terrifying too.  There is no net gain.  We know what we know and we know what we don’t know.  It never changes.  I always want to be at home instead of an ER.

Blood or bone.  Otherwise please leave me alone.  You can prop me up and make sure I don’t fall over but please don’t ask me questions.  Don’t hold me down.  I know it looks scary.  It’s not that big of a thing for me to zap out  every now and again.  Sometimes you seize the day, sometimes the day seizes you.  That’s epilepsy.

Don’t make me go to the ER.  It is too painful.  I can’t have every seizure be an emergency.  After a seizure all I want for days is sleep.  Leave me alone.  If I am drooling on myself, you can wipe my face, otherwise don’t touch me.  Don’t talk to me.  Don’t shine lights on me.  I WANT to be unconscious.  My brain has just shorted out, I need to sleep it off.  Epilepsy is everyday for me.

If you just wait a while I will come around.  My kids and husband don’t bat an eye, they know to put me to bed.  This is my life.  I can’t count how many ER doctors have diagnosed me with epilepsy.  Why are you telling me this again?  I’ve been living in this world of semi-unconsciousness for decades.  I probably know more about seizures than you do, I just can’t answer questions right now.  Soon I will tell you everything and maybe I could teach you something new.  Don’t you think I know what to do in the case of a seizure??  I read all the literature.  I write that literature too.  Can I go home now??

Please do not take me to the hospital over a seizure or two.  I promise I will be back in twenty minutes or an hour or two.  Let my husband decide if it’s a real emergency.  Wait until he gets here.  He will know if it’s a normal bad seizure day or not.  He knows who I am when I am not me.  I am not a normal person, but this normal for me.  I already know that.  Don’t make me wait for another ER doctor to tell me.  I know.

It hurts too much to speak.  If I am not dead, I’m alive!  This happens literally all of the time.  It’s my super-power, back from the brink of death again and again.  If I am breathing and not bleeding please do not touch me.  Wait until I am conscious to take me away. I will tell you if I am having a gallbladder attack or a real emergency.  If I just had a seizure and that’s it, that’s it!  That is my life.  Going to the ER only hurts me.  I am broken in two.  It was the hospital visit, not this seizure or two.

Epilepsy is a painful inconvenience for my family.  But it is simply our life.  It is scary to see, I’m told.  But once you know what it looks like it’s boring, everyday, common-sauce.  I’ll come around soon enough.  Keep calm.  It’s just a seizure.  Ask my children, ask my husband, they will tell you.  Just leave me alone and wait.  My brain just does this.  The ER doctors know they don’t really know anything about epilepsy.  They will tell me to take my seizure meds and get some sleep.  See a specialist, too.  I already do.

Please don’t talk to me and make me answer questions about my medical history.  Just wait and see what happens in an hour or so.  I have talked to many doctors about my seizures.  I promise you, you will not tell me anything new.  And I don’t want to talk about it right now.  All I want, all I need, is some peace and quiet.  The bright lights and endless noises are like an assault.  And I speak from experience there too.  Every time I wake up and don’t know where I am is another scar.

I have seizures.  Don’t get freaked out.  I’ll be back up soon.  Please don’t hold me down.  Just leave me alone.  If I am confused and stumble, hold me up instead.  I gave my children those instructions long ago: when Mom is out of her head, put her to bed.  They were offended.  They already knew.  That’s the ultimate end of every hellish seizure related ER visit to date.  Go to bed.  I already know I have seizures.  My children know.  I just need to sleep now.  Please.  Dear God!  I WANT to be unconscious.  It is good for me.  Everything hurts.  Don’t make me try to explain it to someone new.

Do you know how scary it is to wake up in a hospital and be told nothing new?  I live this way.  Welcome to my regularly scheduled life!  I’ll be back soon.  We can have an eloquent conversation about my seizures then.  Right now anyone who touches me is a motherfucking asshole.  May I sincerely apologize to everyone I may have yelled profanities at.  When I am conscious, nurses and paramedics are my real life heroes.  They are my worst enemy after I’ve had a seizure or two.  Don’t waste your time on me over a seizure or three.  I’m going to be fine and please fucking don’t touch me.  Don’t poke the bear.  It hurts me to open my eyes and my mouth.  My words won’t come out right.  I can only scream.  I am trapped inside my brain.  My brain does this all of time.  I know the risk.  I know the treatment.  I know how scary it is to wake up in the ER for no reason, over and over again.  I know that nightmare too well.  I have nightmares about it.  I would like to never have to do that again.  I don’t need another fresh-faced ER doctor tell me I have epilepsy and give me a one page flier about seizures.  I know.  I fucking know.

I am well-aware of the risks.  I do not want to go to the ER unless I am not breathing or bleeding or you see bone.  A little mouth blood is de rigueur, you can wipe that off and let me be.  If you find me at bleeding and broken at the bottom of the stairs then call the paramedics and please try explain to them that I will be more than a little confused and angry when I start to get back into my conscious head.  If I am just drooling, let me be.

I will come around soon enough.  Please don’t make me wake up in a CAT-scan or MRI tube ever again.  It. is. horrifying.  The noise physically hurts.  They were yelling at me to stay still this time.  I woke up crying from the sound.  My brain can’t process things right now, but I am used to that.  It just takes a little while.  It is my brain and I am used to this shit.  My cognitive processing will come back again.  This was just a little, typical, electrical blip.  I don’t want to go to the ER just because I am unconscious.  I’ll be better soon.

They will not help me there, not just for a seizure.  That’s what the doctors always tell me in an hour or two.  If you have never had a seizure, call 911 right away.  But I’ve had a few hundred and I know what is a medical emergency for me.  I don’t want to waste your time or services or medical expenses.  I do not want tests.  I. want. to. sleep.  I’ll feel better soon.  Please don’t touch me.  I am confused and everything frightens me. I have already read all the books on epilepsy.  If I have a seizure, let me be.  Let me sleep.

Give me a few hours of unconsciousness and skip the dangers of seizures lecture, too.  I am well aware of my unawareness and the usual pattern of unraveling and spiraling back up again.  There is a pattern, I know it oh too well.  I want to call my doctor, so we can have the same talk again.  Take your meds and get plenty of rest.  That is what I was trying to do.  Can you see how the bright lights and hospital sounds could only make this worse?   Ambulances are an epileptic’s biggest nightmare.  I promise this is my normal brain, ain’t it weird?  Leave me alone.  My brain needs a little time to reset.

Epilepsy is a bitch.  But she’s my bitch.  This is just my life.  Ask my husband, ask my children, read my book.  Seizures are scary but they are not always an emergency.  Not for me.  Sorry to give you all a big scare.  I didn’t want to waste your time.  It’s not scary for me unless the paramedics are involved.  They don’t need to be.  This is just the brain I have and I don’t need to go to the hospital.

Stay Calm and Wait Twenty Minutes.  Do. Not. Call. 911.  Even if you are really, really, scared.  Just Wait.  Give me some time to come around.  I will.

Weird, huh?

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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.

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

My Green Testimonial

iPA

I wish I was able to attend the Pennsylvania Senate Hearing on SB 3 and medical cannabis.  I would have loved to submit my own testimony.  Seizures prevent me from driving.  It’s too dangerous.  I could not be there to show the Senators how sick I am, to tell them how desperate I am for treatment.  I wish that I could bring my children so they could tell you how scary it is for them when I have a seizure.  They could describe my seizures to you better than I can.  I have no memory of my seizures, I am here and then I am gone.  It’s terrifying.  I can’t predict when I’ll stop & stare, shake & fall.  I fear falling down the stairs.  I’m terrified of spilling boiling water on myself or drowning in a tub. These are rational fears for an epileptic.

I can give up driving, but I can’t give up cooking and doing any of the million little things in my life that could kill me.  Just being alive is a fearful thing. Everything is okay, until it’s not.  I could not even count the number of times I have fallen out of bed.  50,000 people die every year from epilepsy.  I live in fear everyday.  My seizures are intractable and incurable.  I take thousands of dollars of anticonvulsants every month.  I have seizures every month.  I cannot predict when I will lose consciousness and scream and fall down.

There is a safe, natural treatment. It’s been used to treat seizures for centuries. More studies are not needed. Cannabis stops seizures. I just want to slow my overactive brain. 3 million Americans have epilepsy.  Less than half of us have access to cannabis.  The Epilepsy Foundation is in full support of Medical Cannabis.  Anything that prevents seizures is a miracle.  It’s all we want.  Consciousness.  Not one more second lost.  We can’t wait.  Seizures kill.  Cannabis can save lives and is saving lives right now.  I don’t want to leave The Commonwealth.  What choice do we have?  Passing SB 3 is crucial.  People are dying while we wait.  Please don’t let me die.  It is cruel to withhold medicine.

Please don’t overlook the millions of Pennsylvanians who are suffering from the many other illnesses that can be help by cannabis.  I also suffer from IBS.  I had my left ovary (2004), my uterus (2011) and most recently, my gallbladder removed (June 2014).  I know something about pain.  I know that cannabis is a better choice than many addictive pharmaceuticals. We can’t let paranoia and reefer madness prevent ALL the sick people from getting the cannabis they need.  Whole plant and all.  Real compassion does not judge who gets treatment or not.  Everybody deserves to feel better.  And to have less seizures.  My seizures are intractable & incurable. There is no cure for epilepsy. I will have it for the rest of my life, until it kills me.

Maybe you have spoken with parents who have children ravaged by seizures. I think it would be great if you spoke to the children of parents who are ravaged by seizures. Ask my children what it’s like when mommy has a seizure; I don’t remember. I have to piece it together based on bruises. Ask my 9 year old son why he covers my eyes when he sees flashing lights. My daughter is ten and she will have many stories to tell you. Recently, I had several seizures & hit my head in front of my daughter. I may have given myself a concussion. It would not be the first, nor will it be the last. At least I did not fall down the stairs. It’s hard for them to see me have seizures. It must be the scariest thing in the world.

Give ALL our sick citizens the chance to feel better. Please. I beg you. People are dying while we wait. I don’t want to die in front of my children.

Cannabis is not the same as heroin. We need to stop pretending that it is. Heroin is a killer. Nobody is dying from cannabis. End Cannabis Prohibition!

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Filed under Current News, Living w/ Epilepsy

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.

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Ecstasy Isn’t Just A Drug

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It is a reaction between neurochemicals and electrical impulses in your brain.  All of our thoughts and feelings are.  Ecstasy is defined as “rapturous delight! An overpowering emotion of exhalations; a state of sudden, intense feelings!”  That could describe a seizure.  Seizures happen whenever there is too much electricity buzzing around.  Things begin to rattle and to go awry.  It heats up and the lightning can strike anywhere.  There are over 30 different types of seizures!!  Not all seizures end with bruises.  There are even “musicogenic seizures” that are brought on by music or sounds!

Sometimes having a seizure can feel slightly pleasurable.  It depends on where the seizure occurs in the brain.  There is no pleasure in a full-blown, whole brain, “Grand Mal” Tonic-Clonic, Convulsive Seizure.   That shit HURTS!!  A lot!  But there may be some pleasurable feelings during a simple partial seizure or “an aura.”  This may happen when the seizure activity is highly localized and I don’t lose consciousness.  This is very uncommon for me.  But, occasionally, the very beginning of a seizure can feel good.  I begin to tingle and pulse with a rush of emotion.  Usually it’s a terrible feeling, a stinking, rotten flesh emotion.  But every now and then it’s not.

Once I had an “ecstatic seizure.”  It is a very rare experience, a rarely seen type of seizure.  It has only happened to me one time.  It was very intense.  It was ecstasy!  It was a brain orgasm!  It was rapture!  It started like the others, the usual swelling, and electricity flowing and pulsing to my fingertips and beyond.  But then, instead of feeling nauseous, I felt purely wonderful.  It was an epiphany!

It was only for a second or two or ten minutes.  There is no time during a seizure.  I was floating, suspended in time and space, surrounded by the amniotic fluid of the universe. The secrets of the universe were revealed to me without asking.   All my depression and fear and worry were instantly gone and I was brilliantly, truly, happy with all of my being.  I was lit up, every pore glowing, for a just a brief glorious moment.  It was the happiest I have ever been in my entire life.  I was a rare flower in full bloom and the scent was intoxicating.

Then I came back down from Heaven and was back to having a seizure and feeling sick and tired.  I remember briefly thinking, “Oh seizures aren’t so bad.  Why have I been so afraid?  Maybe I don’t need to take meds.”  I hate that I actually thought that.  It feels like a betrayal to have thought it even once.  Silly, tricksy brain.  I have not experienced joy like that before or since.

Renowned Astrophysicist Carl Sagan said, “An epileptic attack is actually what happens when 100% of our brain is simultaneously used.  In other words, it’s the overwhelming effect that superhuman intelligence has on our frail minds.”

Now I view religious experiences as possible seizures.  There are over 3 million Americans with epilepsy and many do not know it.  If you are having unexpected transcendental moments of bliss, it might be a seizure.  I’m not trying to make light of it.  You might want to get that checked out, just in case.  Brains do crazy things.

My own brain cannot be trusted.  It requires constant maintenance and repairs.  I must turn my motor off and sleep more than other people.  I don’t want my brain to overheat.  I must keep well hydrated.   A seizure can happen anytime, anywhere.  There are rules I have to follow to minimize my triggers.  My brain tried to trick me into ignoring the severity of my seizures.  Seizures are no joke.  They can be life threatening, including ecstatic seizures.  50,000 people a year die from epilepsy-related causes.

I had hundreds (thousands?) of seizures before I experienced pure bliss.  I don’t feel like waiting around for another chance at it.  Even if my brain once showed me Nirvana, it’s not worth the admittance fee.   Man, was it a wild ride though!

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Filed under Living w/ Epilepsy