Tag Archives: Simple Partial Seizure

Brain Storming

brain fibers

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!

“I long ago determined that the only true life was the life of my brain.” ~ Frying Pan Jack

My brain talks to me a lot, except for when it shuts down completely.  My brain tells me elaborate stories but, sometimes it punishes me.  Last week, I was in the shower, I stepped out, then I was on the bathroom floor.  A seizure put me down in an instant.  Suddenly I was unconscious again.  I could not speak.  My legs did not work.  I could not walk or lift a heavy glass to my lips.  When I figured out what happened my brain asked me, “What are you going to write about that now?”   

Why do seizures happen?  Nobody knows.  Electricity.  One neuron and then another.  They burst to life and burn out again.  Everything and then nothing.  For no reason at all.  I have to write about it, or it will drive me insane.  The real insane, not just the vernacular, insane in the membrane.  I feel sane when I am writing.  When the words are flowing through my fingertips, there is nothing saner.  My mind doesn’t have to live in the past or worry about the future.  It is simply now.  The words are here now.  So I write…

I write about seizures obsessively.  Am I a writer because I have epilepsy?  Is my writing a result of all this extra electricity coursing through my body? My brain is wired differently than other people’s.  Most people don’t fall down and scream and shake.  Most people don’t stare off into space and drool.  I do those things.  I never can tell when I might not be able to talk or control myself.  That fear consumes me.  The sudden loss of consciousness is a terrifying thing.  I hate to wake up in another place than I was.  Someone will tell me I had a seizure and I will want sleep.  Later I will try to write about it, to make sense of the nonsense.  What in the world did I say this time?   Did I tell someone my name was Kitty?  I heard myself slurring my name and lost consciousness again, awash with misfiring neurons in my brain.

I am a different person after a seizure.  My husband and children tell me as much, “You are like a little girl.”  I have no memory.  I struggle to know who this other person is.  Who is this little girl I have no control over?  I have to write about it, otherwise she runs around in my brain like a hamster in a plastic ball. She rolls all over the floor and runs into walls.

My brain was made this way~ that’s what the doctors tell  me.  More doctors than I can remember, 20 years, and nobody can tell me why I have epilepsy.  Seizures lie in wait, in the black, back alleyway of my brain, knife in hand.  A seizure is stalking me like Jack the Ripper.  Seizures will stalk me for my entire life.  I can see it in my mind’s eye, clear as day.  Do you see pictures in your mind?  Is that part of the too much electricity that storms across the surface of my brain?  How can I separate my brain from itself?  My mind tells me what to do.  I only know this one brain, full of imagination and wonder and fear and memories and seizures and lost time.

Writing helps.  I float on an ocean of words.  The words press upon my lips and my fingertips.  I want to understand what happens to my brain.  I want to explain.  It’s like a nightmare or a drunken haze.  When I wake up it gets worse, not better like a normal nightmare.  Seizures fade away but the bruises remain.

NEXT UP: Be sure to check out the next post tomorrow by Cathy Hozack at http://livingwellwithepilepsy.com for more on Epilepsy Awareness. For the full schedule of bloggers visit livingwellwithepilepsy.com/epilepsy-blog-relay.

Be sure to check out the Epilepsy Blog Relay Thunderclap to raise epilepsy awareness. And don’t miss your chance to connect with bloggers on the #LivingWellChat on March 31 at 7PM ET.

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The Fight Grows On

 

FemaleCannabisClusterThe buzz has not worn off.  Pennsylvania House of Republicans passed medical marijuana!!  This is really happening!!  So many people told me, “PA will be last.”  We proved them wrong!  We have won a great battle.  The war wages on.  There are many Pennsylvanians left out of Senate Bill 3.  Smoking is prohibited.  We can have oils and tinctures, liquids and edibles, but not grow our own plants.  It is not a perfect bill.  Some say it’s not as good as SB 1182, which was the first medical marijuana bill the Senate passed in 2014.  The House let that die.  I had serious doubts that the House would ever vote on SB 3.  I am happy to be proven wrong.  I am happy to have a new baseline to work from.  Things can only get better now!

Medical marijuana is one step closer to my ultimate goal of full legalization.  Chairman of the Health Committee Matt Baker argued against this bill in part because activists want a complete end to prohibition.  He would like to help the sick, but the risk that some people might want full legalization was too much.  Representative after representative got up and spoke about the heroin crisis our state is facing.  Matt Baker claimed that marijuana “primed the brain for heroin.”  He spoke over and over again attacking the bill from opposing sides.  He made me yell and cry and then laugh my butt off.  He told a dramatic story of a building collapse leading to the death of a man who was “diagnosed with marijuana.”

My blood boiled when he said that he had a letter from the “American Epilepsy Society” begging him not to pass SB 3.  I don’t know who the American Epilepsy Society is, but they sure as hell don’t speak for me.  They are not the voice of epilepsy.  The Epilepsy Foundation is.  They are all on board.  Anything that reduces one seizure, one second of one seizure, is a miracle.  A miracle!!

Matt Baker wanted you to believe that the epilepsy community is against medical marijuana.  He’s a liar.  I am active in the epilepsy community.  I know all the groups.  I never heard of the “American Epilepsy Society.”  They are not a real epilepsy advocacy group, just a name that sounds official.  Everybody who knows anything about seizures is 100% behind medical marijuana.  Anything that helps.  Anything.  I am so relieved to no longer be a criminal.  I’m just a patient who wants to feel better.

So what is next?  The bill is not perfect, no bill ever is.  The Senate has to agree to the changes.  The governor promises to sign.  Then the grass will start growing.  We can figure out things as we go. Currently SB 3 allows for treatment of HIV/AIDS, seizures, epilepsy, autism, sickle-cell anemia, Crohn’s disease, cancer, ALS, PTSD, MS, Parkinson’s Disease, inflammatory bowel disease, damage to the spine and nervous system, neuropathies, Huntington’s Disease, chronic pain and glaucoma.  I believe the list will eventually expand.

What does this mean for Erie County?  That depends on whether we want to be part of the party or not.  There will be hundreds, maybe thousands, of jobs created in growing, producing, and distributing marijuana oils.  I see no reason why we shouldn’t be at the forefront of this.  We have empty buildings just waiting for something to do.  We have fresh water and empty storefronts.  We have thousands of sick citizens of Erie County who will want medicine, as soon as possible.  It’s already too late.  We can’t wait any longer.  Permits will be given, licenses will sold.  Doctors will have to take a brief class on medical marijuana.  All this can start happening as soon as next week.  The movement isn’t over, it’s really getting started now.  All the years of hard work are finally paying off and the real work can begin.  Sow the fields and plant the hemp and marijuana that will grow our economy.

Now is the time to act.

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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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#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

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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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Katie vs. the Fridge

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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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