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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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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Purple Rain for Epilepsy Awareness

Purple RainAs we mourn Prince and await the results of the autopsy, I want America to know something about his life, and maybe his death.   Prince had epilepsy.  As a child he suffered from seizures and was bullied as a result of it.

Prince claimed that he was “cured by an angel.” Unfortunately, some seizures can seem like religious experiences.  It’s called an ecstatic seizure.  It’s rare, but real.  I’m glad that Prince believed he was cured of epilepsy.  I’m glad he went decades without having a seizure.  Do I believe he was cured?  No.

Once an epileptic, always an epileptic.  Even if you haven’t had a seizure in a looooooong time, surgery, medicine, medical marijuana. You will always be an epileptic. Even after 40 years of seizure-free living, at any moment a seizure can snatch away a life and leave no evidence.

I’m not saying that a seizure killed Prince.  But it is a real possibility.  Every time I hear the radio or TV say “unknown cause” I want to scream, “Not for an epileptic!”

We have our own special death: SUDEP Sudden Unexplained Death in an Epileptic Person.  Prince was an epileptic.  It is a life-sentence.  If there is no cause, then it’s SUDEP.  I want the news to say SUDEP when they say it could be the FLU or an OD.  Just say the word.  Let the world know ALL the possibilities.

Whenever anyone with seizures gets sick, the risk of a seizure is increased.  When you end up in the ER after a seizure, the first question they ask is, “What drugs did you take?”  The second question is, “Have you been sick?”  Anything could cause a seizure.  Any seizure could kill.  It’s a possibility.

If I am found dead and unresponsive, don’t call my death unexplained.  Call it SUDEP.  Even famous people die can die from epilepsy, for no reason at all.  That’s epilepsy.  It’s cruel and it’s heartless.  I don’t believe that there is any amount of time that may pass before I am “cured.” I might enjoy a long seizure-free stretch of time.  But there are no guarantees with seizures.

I love you Prince.  I don’t believe you were cured by an angel but I’m glad it gave you peace.  That’s all we can hope for in this thing called life.

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Reefer Sadness

reefermadness

The Pennsylvania General Assembly made a fool of me again.  The roller coaster of legislation swept me away.  I thought we had finally done it this time.  The House passed a medical marijuana bill!  All we needed was the Senate to concur.  It was their bill, they already passed it.  (Twice, if you count the first MMJ bill that the House killed in 2014.)  I thought we had won a great victory.  Another great illusion was pulled off.  It was all smoke and mirrors.  I was foolish to be excited.  

Of course, the Senate couldn’t concur.  All my hope and joy have bled into bitterness and betrayal.  88% of Pennsylvania’s approve of medical marijuana.  Why must the Senate hijack our dreams?  All they had to do was agree.  They passed the bill over a year ago.   It now sits in Rules Committee.  One man is stopping it, just as one man stopped it in The House of Republicans.  Committee Chairmen hold all the power.  Senator Jake Corman and President Pro Tempore Senator Scarnati are in sole control of my fate.  Senator Corman assures me he is groovy, man.   I received a tweet from him telling me they are going over the wording.   He wants to read it really close to make sure it’s okay.  How long does it take to read a bill?   I read the bill the night it passed the House, March 16th.

The Senate is “concerned” that changing the word Cannabis to Marijuana will effect the implementation of the bill.  You don’t have to tell me words mean things.  Words mean MANY things.  You can always argue about semantics.  Is Marijuana different from Cannabis?  No.  Are licensed and registered the same?  Yes.  Yes they are.  I checked the Thesaurus.  It took thirty seconds to get my book off my bookshelf and look it up.  Done.

If the Senate makes any changes, one single word, it will go back to the House where it will die.  It must be accepted as is.  The new MMJ Board can improve things if they need to.  (Sure, they need to!)  Sending it back to the House is the kiss of death!!  Soon it will be summer, elections, and then session is over.  It’s a lame duck and medical marijuana will die again.  They will have to re-re-introduce yet another bill in January 2017. I am so tired of the lies.  Next week, next month, next, next, next.

SB 3 won’t be heard until mid-April.  I seem to remember them saying that last year, or was it the year before?  Whenever it gets close, they push it off.  “Oops, we aren’t in session now.  Spring Break dude!”

There is no spring break from Epilepsy or AIDS or PTSD or MS or Cancer!

You lied to me, Pennsylvania Senate.  You told me you were all in.  The General Assembly does not represent me or the people of Pennsylvania.  We are still dying to stay, even after the House passed medical marijuana.  It might not be the Senate’s priority, but it is mine.

I won’t stop until we get medical marijuana or I die. I say that with all the gravity in the universe.  Death is my constant companion.  He lies in wait for me to have a deadly seizure.  It’s the cold, hard truth of epilepsy.  At any time I could expire from SUDEP: Sudden Unexplained Death in Epilepsy.  Suddenly, for no reason at all…

I want to live!!   All the Senate needs to do is concur.

Sign, or Die!

Benjamin_Franklin_-_Join_or_Die

B. Franklin, The Pennsylvania gazette, May 9, 1754

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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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