Tag Archives: Brain

Mood Swinging

L0032442 CARSON: Patients waiting to see doctor

I started a folder named Manic Ravings.  I was tired of them clogging up my main drive where I might click on them accidentally and be subjected to their random nonsense at any time.  I thought it might be better to just give them their own space.  That’s why I wrote them in the first place.  To get them out of my head.  I don’t need to keep seeing the files.  They are disjointed and hard to follow.  It’s part of the disease I call Temporal Lobe Epilepsy and Bipolar Depression or Mood Disorder or whatever.  I like to tell myself, “Bitch, you’re brain be broke.”

Not all of my thoughts are correct.  Not all of my memories are coherent or consistent with facts.  My brain works overtime, ruminating on the same thoughts, thousands of times over again.  Each time it evolves and twists and spirals into something else.

I wish I didn’t have to think so much.  It’s a burden.  All these thoughts clog up my brain.  Gears whir in the background, the springs tighten.  My muscles are tense and ready to pounce.  I don’t like to feel that way.  It aches.  It seems predestined, like a freight train, unable to be stopped.

There is always a small part of me that knows the rest is false.  A small light shines through the fog.  It takes a long time for that light to grow bright enough to illuminate the room.  I am a ship lost at sea or Lake Erie.  I can’t remember where I set sail or how long it’s been.

In the meantime, I will be left to stumble around in the dark and hazy gray lobes of my brain.  If I’m lucky, I’ll keep my mouth shut and not say every damned thing that comes to my mind.

Somehow I doubt that.  I have never been able to shut my mouth.  My words and thoughts assault me at all times.  I have no choice but to spit them out.  It’s a nasty habit.  I try to be a reformed mood addict, then the rages take over.  I cannot think of anything else.  My body shakes.  I scream and cry and can’t remember clearly when it’s over.  I can’t say it’s worse than seizures, but it’s not better that’s for sure.

I write about my mood swings least of all.  They are the most shameful to me.  The loss of control of my body is less scary than the loss of control of my mind and my mouth.  When I am enraged I will say anything to anyone.  I offend myself with the things I say.  I forget what I say.  Then a seizure will wipe it all away.  My memories are questionable at best.

All I can do is try to live in the present moment and not the past.  It’s a sticky trap back there.  There is no sense in trying to make sense of mania.  It’s not sensible.  It too shall pass.  It comes and it goes.  It is the nature of the Beast.  I cannot kill it.  I cannot tame it.  I can only hope to someday live symbiotically with my Brain.

Today is a good day.

***

(Image by Rosemary Carson: Patients waiting to see Doctor)

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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

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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

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

If I cannot respond…

MRI_head_side

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

It’s hard to take advice from a doctor younger than me.  I still feel young.  My new doctor was in grade school when I started my education on epilepsy, twenty years ago.  I am not a doctor, but I am a specialist.  I have the inside track, I live this seizure life.  I know the many treatments.  I have been on many medications and have read many texts on epilepsy.

Nobody knows why I have seizures.  After nearly 20 years, and well over 20 tests, they have no clue.  Doctors offer to run more tests to see if I am a good candidate for surgery.  I do not want surgery.  I’m not willing for you to idle around inside my brain.  I don’t accept that risk.  I will live this life with its ups and downs.  My brain will remain untouched.  I don’t want to lose the ability to write or speak or walk and still have seizures anyway.  Surgery is no guarantee.  

I speak to brain surgery survivors.  Many are still having seizures and are still on seizure meds.  I do not accept that risk.  It’s not enough for me.  I am unwilling to have someone poke and prod around in my skull.  I’m sorry, that’s not for me.  I’ve mentioned it many times, to many people.  My doctors still offer me every six months, “We could put you in the monitoring unit and do a surgery consult.”  Doctors don’t know why I have seizures or where they originate from.  How can you treat that with surgery?  I do not want someone to take a melon-baller to my head and scoop out a piece of my brain.

I have had many surgeries to remove many things: ovary, uterus, gall bladder, two c-sections.  But I will not let you investigate my brain, hoping that you will find the right spot where my seizures allegedly originate from.  The risks are not worth it to me.

How many times must I say no?  What will happen when I can’t say no?  There’s nothing scarier than hearing people talk about you and ask you questions and you can’t respond.  I want to respond.  I’m a good girl, a former straight-A student, the geek who sat in the front row and asked questions.  I will answer anyone anything.  Unless I am having a seizure…  Consciousness is a slippery fish.  I can’t hold it in my hands for long without it flipping out and smacking me in my face.

Once I woke up in the MRI tube, it was so loud and the gravity was making me feel like I was moving underwater.  The knocking pounded into my head like nails.  Even writing about it now hurts my head.  Sounds can HURT.  That time they only gave me Ativan and ran a few tests.  Nothing terrible happened.  They didn’t let my husband take me home until I could tell them why he wanted to take me home.  Which was because I wanted to go home.  Finally five hours later I could talk and remember my middle name and correct age.  It was five long hours when all I wanted was to be home in bed.  But I couldn’t tell anyone.  They didn’t listen to my husband.

When I could talk and begged to be sent home, I was given a one-page printout from Web MD about seizures.  They told to get some rest.  They didn’t not give me any new information.  20 years of tests have remained inconclusive.  Seizures are unpredictable and NO! I don’t want surgery.  Why won’t they stop asking?  I worry what may happen when I can’t say no.

#EpilepsyProblems

 

NEXT UP: Be sure to check out the next post tomorrow by Danielle Watkins at Bus Fair 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 June 30 at 7PM ET

 

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Filed under Essays, Living w/ Epilepsy, Uncategorized

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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Driving Me Crazy

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

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

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

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

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

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

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

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I Write, Therefore I Am… An Epileptic

wheatfield with crows

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

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

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

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

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

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

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

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

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