Category Archives: Non-fiction

Brain Matters

Physiology_for_Young_People_-_1884_-_Surface_of_the_cerebrum

This post is part of the Epilepsy Blog Relay™ which will run from March 1 through March 31. Follow along and add comments to posts that inspire you!

My brain has too many tabs open, until the entire machine crashes.  It can happen at anytime, for no reason at all.  The seizures are the most visible part.  It’s easy to see when I fall down and shake.  It’s the most dramatic.  The mood swings and lost time and forgotten memories can’t be seen.  The confusion has no name.  You can’t see the noise in my head or the way light and sound can be a weapon.  Feelings can be seizures.  My mind is an ocean of words and thoughts and dreams and fears and logic and fantasy.  Are they memories or memories of dreams?

It’s all because of my temporal lobe.  It sits behind my ear buzzing way.  Picking which memories get to stay and which to throw away.  The temporal lobe controls all the fun stuff: talking and thinking and writing and feelings and making memories…  

Sometimes I can do all of those things.  Sometimes I can do none of them.  My left temporal lobe gives me the entire world and takes it way too. I hate to lose the ability to talk. I try to scream, but I can’t move a muscle.  Sometimes I don’t know what is going on or where I am.  I can’t remember my middle name.  I lose track of time and I get angry at sounds.  Words stop making sense.  Letters swims away.  The blackout is easier.  I’m here, then it’s later.  Things have happened, time has passed, I don’t have any memory of what might have been.

When I am stuck in semi-consciousness, it’s hell on earth.  Light and sound are ice picks in my brain.  I can’t control my body or respond to appropriate stimuli.  I feel like I am floating outside of my body, looking down on the scene below.  My muscles clench and release on their own accord.  They move under their own marching orders.  The veil between real and imagined become hazy.  Time is irrelevant.  And then there’s the vomiting…

When I was first diagnosed with Idiopathic Temporal Lobe Epilepsy in 1997, I only knew one other person who had seizures.  I had never seen her seize or talked about her seizures.  Over the past 20 years, I’ve met many other people suffering from seizures.  They all feel like my best friend.  Finally!  At last!  Someone who understands!

That’s why epilepsy awareness matters to me.  I don’t want other people to feel as alone and scared as I did when I woke up in the hospital, unaware of what had happened.

The International League Against Epilepsy (ILAE) released a new categorization of seizures.  All the names I used to know have changed.  These terms are more for experts than beginners.  The new terms make sense to me because I’ve been trying to describe my seizures for years.  The more words we can throw at it the better.  What I knew as a Simple Partial Seizure is now a Focal, Aware, Non-Motor, Sensory Seizure.  It’s a mouthful.  But it more accurately describes what happens once you understand the categories.  

I need to educate myself on the changes.  I need to understand them so I can explain them to everyone else.  It’s so complex it gives me a headache.  I’m relieved I didn’t have to learn it when I was first diagnosed.   That was a dark time in my life.  When I think about it now, I feel sad for the girl I was.  I wish I had more people to talk to.  I’m here to talk to you now.

NEXT UP: Be sure to check out the next post tomorrow by Lundbeck at livingwellwithepilepsy.com for more on Epilepsy Awareness. For the full schedule of bloggers visit livingwellwithepilepsy.com. And don’t miss your chance to connect with bloggers on the #LivingWellChat March 31, 2017 at 7pm EST.

http://www.epilepsy.com/article/2016/12/2017-revised-classification-seizures

Leave a comment

Filed under Living w/ Epilepsy, Non-fiction

Don’t Look Now, It’s a Seizure!

shark

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!

As hard as epilepsy is on me, I think it’s harder on my family.  They have to watch when I lose consciousness.  They are the ones who see me seize.  My husband and children are the ones who lose out on days of parenting.  They are ones who get snapped at when my brain is mushy and confused and can’t process sensory information.  My family bares the brunt of that.  I yell at them that they are too loud.  I complain about the light.

I am wracked with guilt that I am sick.  I know logically it’s not my fault, I shouldn’t feel bad.  But I do.  I feel like a burden.  My daughter once had to stay home from school to watch over me.  She was 10 or 11.  That felt like a big fat F in the parenting column.

When I was pregnant with her, I was given a list of things I should no longer do unsupervised.  I was told I was no longer a full-fledged adult.  I required observation…  at all times basically.   The outside world isn’t safe for me to go alone.  My doctor told me so.

While writing this, I made some sort of sound and my husband whipped his head around.  Then he told me, “It’s the million little things that are nothing that are the worst.”  Some sounds are nothing.  Some sounds are seizures.

Many times I have been alone in my room, I’ll laugh something I’ve read, and my family shows up with terror in their eyes.  It’s a special kind of look.  The look says, “Are you having a seizure?”  It’s a sad, puppy dog look, wrapped in fear and sometimes annoyance.  

Once I got stuck folding laundry for a minute or so.  I folded a towel over and over again.  Then I was back and had no memory of it.  My kids had to tell me.  I was physically unhurt.  I didn’t grind my teeth into my tongue.  I did not fall to the floor or onto the table.  I felt more or less okay.  They still had to change their plans to care for me.

Kids with sick parents have to be older than their age.  We joke that driving will be their chore, not a privilege.  They will HAVE to get their license to drive me around.  It’s a joke, but it’s not.  We try to keep it light, but remind them: Life isn’t fair.  But we have to go on, I guess.

I wish my kids didn’t know what a “normal” seizure looks like over an emergency.  There’s a difference and they know it.  My seizures have so many side-effects it’s hard to keep track of them.

I’m not what I would call healthy.  But I can pass.  For a while.  A few weeks, a month, maybe longer if I’m lucky.  But epilepsy will call my name and my family will have to pick up the pieces and tell me where I am and what’s happened.  They make dinner and get me ice water.  I’m like a baby again. I need to learn to talk all over again.

When I was most distraught, I asked my husband what I was supposed to do?  How was I supposed to go on?  He said, “Pick yourself up off the floor and go on. You do it all the time.”  It was a revelation for me.  I do.  I wake up on the floor and I have to get up.  I hit rock bottom and get up again.  My husband and children help me up.  They lend a hand when I can’t stand completely.  

I don’t like to consider what my life would be without them.  Who would tell me I was folding the same towel repeatedly, just like I’m stuck buffering?  

It’s okay, I’d rather they laugh about it than cry.  Although I know they do that too.  My son gets in trouble in school after I’ve had a seizure.  He’ll try to hide it but the fear bleeds through.  Seizure days are the worst.  We are all on high alert.  My kids are latchkey kids so they can get in if I’m having a seizure.

I don’t know how I’m so lucky.  My family still loves me despite it all.  The rage, the tears, the seizures, the mood swings, mania when I don’t know I’m manic..  They have to live with it.

Thank you, Adam, Zaria, and Dax.  You give me light in the dark when I can’t see.

NEXT UP: Be sure to check out the next post tomorrow by Maureen Knorr at livingwellwithepilepsy.com for more on Epilepsy Awareness. For the fullschedule of bloggers visit livingwellwithepilepsy.com. And don’t miss your chance to connect with bloggers on the #LivingWellChat on November 30 at 7PM ET

Leave a comment

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

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.

Leave a comment

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.

Leave a comment

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?

Leave a comment

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

Blood Moon Super Moon

Eclipse_lunar_(Blood_moon)_del_8_de_octubre_de_2014_10

I’ve had epilepsy for my entire life.  Although, I didn’t know until I was in college.  It was quite the surprise to say the least.  I’ve known for nearly 20 years now.  Every seizure still takes me by surprise.   I can’t predict when I will have a seizure.  But right now would be a good guess.  I’ve been keeping track of my seizures for at least six or seven years.  The pattern is undeniable.  I don’t know why.  I just know that the full moon is a particularly seizure-y time of the month.

Now it’s the Supermoon and an eclipse to boot.  I am terrified of what might happen when the moon goes dark and turns red.  I am not like normal people.  I am a werewolf.  I howl at the moon.  Uncontrollably.  I don’t know now what it sounds like, you would have to ask my family.  I’m an unconscious werewolf.  My son did say that it sounded like I was barking once.

I wish I understood what it was about the full and waning moon that triggers electrical brainstorms.  My brain ebbs and flows with the tides.  I am eternally tied to the phases of the moon.  The moon is full and my brain buzzes with too much electricity.  I am concerned with flashing lights and upsetting music.  My brain needs to be insulated from my other triggers.  Get lots of sleep, stay close to bed.  Don’t get dehydrated.  Don’t go to Wine Fest Weekend.  Don’t get upset.

My worst seizure cluster occurred the night a friend of mine died.  I was too upset, my brain couldn’t take it.  It shorted out.  It was only a few days before the Full Moon.  Perigee is a scary thing.  When the moon is so close, it is so beautiful, so deadly.

Doctors and nurses, paramedics and police officers will tell you.  The Full Moon makes people do weird things.  We are 70% water, we are ruled by the gravitational forces of nature.  The moon will turn red.  My family is just hoping I make it through to the other side.  I hope it’s not a bad one this month.  I don’t want to bleed with the blood moon.  I already bit my cheek.  My mouth often takes the brunt of my seizures.  My teeth clasp and whenever I taste blood I suspect I’ve had a seizure.  They can happen so fast, faster than anyone can know.  Blood is bad sign.

Leave a comment

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

#stillwaiting

Stopwatch_A800px-Cannabissativadior

My roots in Pennsylvania run deep.  My ancestors have lived in this state since 1747.  There is a Schlegel Family Cemetery full of the bones of my Schlegel ancestors.  My parents and my in-laws and my nieces and nephews live in Pennsylvania.  I don’t want to live anywhere else.  I enjoy our profusion of water and green.  A sunset isn’t a sunset if it doesn’t set over Lake Erie.  I guess I must even like the snow.  But I am so tired of waiting for compassion.  How long am I supposed to wait?  How many seizures must I have?  I am still waiting…  I am still seizing…

Medical cannabis has been legal in California since 1996.  I was a freshman in college and I didn’t even know I was an epileptic then.  I never even knew I was  having seizures.  All of that would change in 1997 when I woke up in an ER.  I didn’t know cannabis was a treatment for seizures.  But it was one of the first things that came up when I was diagnosed and I started to research my life sentence of epilepsy.  Cannabis is medicine.  Centuries of doctors and patients believe it.

Since medical marijuana was already legal in California, I thought I would be able to get treatment soon enough…  It’s nearly twenty years later and I’m still waiting…  Pennsylvania is sunk, stupid in budget quibbles that don’t get anything done.  Our state budget is 5 months overdue.  The School District of Erie had to vote on what they will do when they run out of money.  The teachers said they would work without pay.

I am still waiting for the House of Representatives to take pity on me and pass Senate Bill 3, Compassionate Use of Medical Cannabis.  It passed the PA Senate, TWICE, but the House pretends to work and refused to do anything.  Oh really, you are writing a “new law” for “passage soon?”  Please reference any of my previous articles addressed to the PA General Assembly over the past two years.  We are still waiting…  I am less and less enthusiastic about my beloved home state everyday.

Everyday is a day I could die.  I’m not being overly dramatic, I’m stating the cold hard facts.  Every year over 50,000 people die from seizures and seizure related injuries.  I fear dying everyday.  I don’t take baths or showers alone.  I’ve read too many obituaries for dead, drowned epileptics for that.  I’ve considered giving up swimming forever.  I used to be on the swim team.  I was even a lifeguard.  I didn’t know I was an epileptic then.  When I went to the wave pool this summer, I told my daughter to stay close.  Not for her safety but for my own.  Everything is dangerous when you lose consciousness and drop to the floor.

Even the things I enjoy scare me.  I love to can; pickles, spaghetti sauce, grape jam, whatever is in season.  Every single time I do, I hope that I don’t have a seizure and scald myself to death.  Boiling hot water can do a LOT of  damage to an unconscious person.  At any given second I could become unconscious.  I envy those of you who don’t know what it’s like.  

Some of my best friends are people I’ve never met.  They are my Epi Friends, epileptics like me.  We live in the same world ruled by seizures and lost time.  We know what it’s like to wake up on the floor.  The Pennsylvania House of Representatives does not know what it’s like…

My advocate “Mama Bears” were in Harrisburg again, rallying and trying to educate the General Assembly.  I wanted to go.  I’m a big fan of a good protest.  But I can’t drive.  My voice will not be heard in the halls of the Capital.  Seizures keep me trapped away like Rapunzel in a tower.  I write letters and send emails and publish blog after blog after blog…  They all plead the same thing~ I just want to have less seizures!  Why can’t I try a natural cure that has been working miracles for centuries!?

I live in the wrong state for my own good.  I don’t want to move.  Yet, everyday I am closer to throwing my hands up in the air and taking up my wagon train and heading west.  I just want medicine.  Why won’t the Pennsylvania General Assembly pull their heads out of the sand and join the 21st century?  Cannabis is medicine.  It is also good business and could give us ample tax funds to fund our schools and balance the budget.  I’m still waiting…..

Don’t make me leave.

still waiting

Leave a comment

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