Tag Archives: Temporal Lobe Epilepsy

PA Goes to Pot!

 

campaign4

Wednesday, March 16, 2016 was a historic day for my Commonwealth!  Medical marijuana, which has been growing moldy in the House basement, was taken out and given the light of day!  Senate Bill 3, The Raymond Shafer Compassionate Use of Cannabis, was finally voted on in the House of Representatives.  It passed 149-43.  Medical marijuana IS coming to Pennsylvania!  The Senate has to concur with the changes the House made.  Then it’s on to Governor Wolf’s desk.  He promised to sign whatever time, day or night, that the bill hits his desk.  He was there for the vote and tweeted “Now is the time to act!”

Senate Bill 3 passed in the Senate with a vote of 40-7 in May 2015.  The House tried their best to kill it.  They sat on it and did nothing.  The head of the health committee was against it, so it didn’t have to get heard.  Rep. Matt Baker wanted to kill medical marijuana.  He failed.

I cried like a baby.  I bawled.  My cats gave me odd looks.  My kids didn’t quite know what to think.  Why was the boring political TV making Mom cry so much?  I felt relief like I have never known.  My state finally believes in me.  All these years, all I wanted were less seizures.  My state said no.  Yesterday, they said YES!  It has been such a long road, covered in seizures and bumps and bruises and blood.  So many activists died while waiting.  The end is finally in sight!  PA has been languishing in prohibition for far too long.  All of that is drawing to an close.  The light at the end of the tunnel is bright green!

A great pain rose off my chest when the vote came down.  The cloud lifted and the haze cleared.  I’m not a criminal!  I don’t have to  move to Colorado!  I can stay here and get the treatment I deserved.  I’ve cried about it so many times.  Now they are tears of joy and relief and happiness.  Treatment is within reach for me!  I am satisfied I will be able to get my precious medical card.  I’m an epileptic.  I can’t stay conscious!  We should all know this by now:  Marijuana reduces seizures.  This law is for me!  Of course, the fight is not over.  There are many people who are left out.  I promise you, I won’t stop fighting for you. Now we can be healthier while we fight.

As if all this wasn’t enough, Industrial Hemp Senate Bill 50 passed the Senate 49-0.  We are on our way to join only a few other states who allow hemp to be grown on large agricultural scale.  It is a legal crop.  Let’s grow some hemp!  It will be a lucrative crop for our state.  Hemp has a few more hoops to hop through.  They need to get a hearing in the House.  The House is a lot less friendly than the Senate.  They stonewalled medical marijuana for YEARS!

It may take years to get Pennsylvania’s programs running.  Not everyone is happy with SB3.  I’m giddy for the baby-step in the right direction.  Two steps forward and one step back is still one step ahead.  It has started.  It cannot be undone.  We are not a pioneer in this fight.  Pennsylvania is late to the game, but we’re here now~!

In the meantime, we need to educate our doctors.  We need to let them know they will be protected when they prescribe medical marijuana to their patients.  We need them to know why they should.

Today we celebrate!  The tides have turned.  They are green and foamy.  Pennsylvania will be growing marijuana and hemp.  Hemp was once our major crop.  (Why do you think there is a town named HEMPFIELD?!)

We are bringing hemp back to Hempfield!  

We are bringing compassion and cannabis to the sick and hurting!

Please remember who voted against compassion and vote accordingly.  Election Day is April 26th.  Many House seats are up.  You can check the vote here.

To all the Haters who said we couldn’t do it:  Put this in your pipe and smoke it!  Enjoy this picture of The Capitol Building lit up green in honor of SB3!

Th House goes GreenWe weren’t last!

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Filed under Living w/ Epilepsy, News, Uncategorized

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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My Land of Confusion

leelas not sure

 My brain has this evil trick it plays on me.  I know the pattern well enough by now.  We call it temporal lobe epilepsy.  People are always asking me questions about seizures.  I answer to the best of my ability.  Sometimes I physically can’t answer, “Hey, I’m an Epileptic.  This is no big deal  for me and I want to go to bed.”  My brain is wired so damn weird.  Give me a little time to find my way out of the land of seizures and confusion.  I’ll swim back to full consciousness soon with another story from the depths of semi-consciousness.

Most of the time I am not trapped in my body and I like to talk.  I am a Chatty Kathy, even though I hate it when people call me that.  Ask me anything; I will happily ask you anything.  I don’t want to talk to anyone after a seizure.

Ambulances and hospitals are terrifying when you don’t know where you are.  I have had that happen to me enough times.  I am happy to go to the ER if I have a real emergency.  But not because I cannot remember my middle name or even if I am unresponsive.  I slur my words and bump into things.  I vomit.  Eventually I rewind and I can talk.  Look how well I am writing now.  Ask me anything!

I have had epilepsy my whole life, I have known for nearly twenty years. The diagnosis has been the same since 1997.  We don’t know why you have seizures.  It just happens sometimes.  The first time I woke up in the ER was the last time an ER doctor gave me information I needed.

The post-seizure ER experience is always the same, flying down the hospital halls, the lights piercing my brain like an ice pick.  I’m not claustrophobic, except when I wake up screaming in pain from the noise and I have no idea why I am in the Hell-Hole of a CAT scan tube.

Every seizure CAN be an emergency, but every seizure is NOT an emergency.  Please don’t call 911.  It feels like a punishment to me.  The sound is too much.  Give me time to come out of it.  It might be an hour or more.  That’s my normal.   It is a long climb out of the abyss.  It’s The E Life.  It’s My Life.  Epilepsy is a weird disorder or disease, whichever you prefer to say.   I know there is a risk of more seizures due to every single seizure I have.  Seizures beget seizures.  I also have a 100% Seizure-Free Tolerance.  Sometimes works out to be more like 80% Seizure-Freedom.  I’ll take what I can get.  30% of epileptics never gain complete seizure control.

Even when I’m not fully conscious, I’m still in there somewhere, lost in my brain.  I’ll be back soon.  I will eventually know what year it is.  (The last time a paramedic asked me that question while I was still coming out of a seizure, I said it was 2007.)  Please wait, my confusion will clear and my brain will land back in reality.  I hope.

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

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 Epilepsy Stigmata

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

me

Once when I was in the middle of having a seizure, I had the paramedics yell at me.  It was terrible.  I couldn’t help myself, I was lost in my mind, unable to control my body.  When I could float to consciousness, they were yelling at me to stop vomiting.  I had been vomiting all day, I wished I could stop vomiting.  They screamed at me to stop spitting at them.  I promise you I was not intentionally spitting at them.  I’m not a dick.  It’s called a complex partial seizure.

All I wanted was some water.  I was so thirsty.  I couldn’t move.  They treated me like a drunk, a drug addict or a raving lunatic.  I was none of the above.  Nobody deserve that, even if they are a drunk, drug addicted, raving lunatic.  Seizures are none of those things.  Medical professionals should know better.  I’m afraid I’ll need an ambulance again.  I don’t ever want to be treated like that again.  I wanted to come downstairs, that’s why they were there.  To help me.  I couldn’t control my body.

Epilepsy is isolation.  That’s what people don’t see.  I try not to have seizures out in public.  I stay home.  I can’t drive anyway.  Even when I want to do things, I can’t.  I’m not going anywhere when I’ve had a seizure.  Not for days and days.  This limits my contact with the outside world.  When I am the sickest, I am all alone, at home.  When I feel sick, I don’t go anywhere.  I miss soccer games and birthday parties and only my immediate family sees me.  I stay at home.  I don’t want to go out and have a seizure and be treated like a drunk, raving, lunatic.  Which is something that happens to epileptics all the time.  It’s hard to respond when you are having a seizure.  Epileptics get shot by the cops with shocking regularity.  People ask me if I’m drunk all the time.  “Nope, I just bump into things and slur my words everyday!~”

I am misunderstood by the world.  I can’t work because I can’t keep a schedule.  When I have a seizure, all I can do is sleep.  I can’t go to a job.  I am down and out for days no matter when it happens.  And it happens all the time.  I can’t predict when I will have a seizure.  All I can do it try to minimize my triggers.  Which does nothing, but stress me out.  How can I minimize my hormonal changes, or the path of the moon?  I am lost, at the whim of electrical impulses.  Who knows what makes the lightning strike where and when it does?  Seizures are like lightning strikes that spread over the brain in a chain-reaction of altered consciousness.  Sorry, I can’t make my scheduled shift tonight or tomorrow or the next day.  Employers don’t like that.

Sleep consumes my life.  After a seizure, sleep is all there is.  If I don’t get enough sleep, that’s a trigger too.  My seizure meds make me tired.  It’s a side effect of the main effect of slowing down my electrical impulses.  I have too much electricity for my own good.  A seizure is exhausting.  I am not lazy.  I am sick.

I should be happy that so many people minimize my disease.  They all think I should be functioning better since I seem so smart.  I can’t remember shit.  Ask my kids.  It’s kind of a problem.  Just today my son was upset that I couldn’t remember watching Buzzfeed videos with him yesterday.  I couldn’t remember what we watched.  People remember stuff like that?  You can watch a video and know if you’ve seen it before?  Everything is brand new to me!  Yee-haw!!  Epilepsy is a rodeo!  You never know how the bull is going to ride.

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