Category Archives: Non-fiction

Epilepsy Every Day

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I’m one of the lucky ones.  I don’t have seizures every day or every week even.  It’s the side-effects of the medication that affect me everyday.  The meds are always there dragging me down.  When I mention them to my doctor, he nods and agrees they are indeed the side-effects of the medications.  I take them to essentially numb my brain to prevent seizures.  Double vision, dizziness, and poor balance, are all par for the course. Mood swings and depression are also probable side-effects from one or more of the medicines I must take, twice a day.

I struggle with these pharmaceuticals all the time.  None of the dozens of meds I’ve tried has given me seizure control.  Doctors generally agree that the less seizures you have the better. I’m given to believe that idea as well.  But every day I feel tired and disconnected. If I didn’t feel confused, I wouldn’t feel anything at all.  Memory problems are a common side effect too.  This is the one that worries me that most.  Who knows what I have forgotten and what I will continue to forget?  Will I someday forget the faces of my children?  It might as well be written on the side of the bottle.  Oh right, it is.  I nod along to stories I don’t remember.

It is the fear that cripples me.  The fear of a seizure, the fear of injury or accidental death.  I fear I will have a seizure or lose my balance and fall down the stairs.  It’s a rational fear.  I wonder what it’s like to not be afraid.  I wonder what it’s like to remember everything, all the time.  Once I forgot my middle name.  It’s a bad place to be. In the hospital, confused and frightened and maybe not in control of all your limbs and then someone asks you your name.  Every day I fear that happening again.  I don’t want to wake up in the hospital.  Odds are I will.

I try to minimize my risk, but even standing still is a risk for a person with epilepsy.  At any damned second at all, I might fall over and who knows when I will remember what is going on.  I don’t remember things every day.  One second here, gone the next.

My family will ask me, “What did you just say?”  And I will have no answer.  Who knows what I said?  It’s gone now.  I want to live in my life, not live in fear of it.  I want control, but that’s just an illusion.  My brain is in control and it is an evil beast.

Even when the seizures aren’t stealing my consciousness, they steal my confidence.  I don’t want to have a seizure by myself in public.  It’s just part of the seizure life: the fear, the confusion, the depression, the loss of control.  These things stalk me.  What choice do I have?  I have to try and keep the monsters at bay.  Every day without a seizure is a good day. And some days with seizures can still be good days too.  It’s all perspective.  There are little seizures and they are always better than the big, bad seizures.  The side-effects are better than falling down dead.  We live in lucky times, when epileptics aren’t forced to have brutal brain surgery against their will and get locked away in institutions.  Nobody thinks I am possessed.

Epilepsy is a roller coaster, a circus ride gone wrong with a quarter stuck in the gears, grinding away, out of control.  Every day is a struggle, a fight, a blessing.  I have a life after all.  Even if it is inconvenient.  I have to work around the fear and the shame and the loss of memory and the certainty of more seizures to come.  

I don’t hope for a cure.  I hope I can keep it together just for today.  I hope that every day.

NEXT UP: Be sure to check out the next post tomorrow by Jewel Gibson 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 June 30 at 7PM ET

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Filed under Living w/ Epilepsy, Non-fiction

High Hopes, Low Supply

seedlingMy brief window of a seizure-free streak has broken.  It’s okay, I can still see through the window.  The seizure was mild, I only lost a few seconds.  I didn’t convulse or drool or do any of the other various embarrassing things a person might be prone to do during a seizure.  I was brushing my daughters hair when I felt a rising, vaguely familiar, sense of I’ve done this before.  l tingled.  Of course, I had done it before, I’ve combed my daughter’s hair thousands of times. I ignored it. Then the next thing I knew, my daughter was looking at me.  She told me I just had a seizure. I was surprised, like I always am.

“How do you know?” I asked.

“You stopped combing my hair and just stared at me.”  She responded. She’s an old hand at seizures by now. She has witnessed dozens, probably hundreds of seizures.  She recognized the signs. I lost the time, my brain was completely wiped. I never finished brushing her hair.

I asked her, “What happened?”

“Not much,” she said.  “You just looked at me with a weird face and didn’t respond.  You smacked your lips.”

I had to believe her.  That sounded like a seizure.  The problem with seizures is, you don’t remember.  That’s part of so many seizures, the loss of consciousness.  You don’t know what you don’t know. Time is fluid and I have to believe what other people tell me.

“It wasn’t severe,” she continued.  She was 13 and very calm.

“How long did I lose?” I demanded.

“I don’t know, twenty seconds, a few minutes.”  She was bored of talking about it already. It is just part of our life.  And it was not nearly as bad as last time.

January was a “bad month.”  I had a few clusters of seizures, culminating in three or four tonic-clonic seizures.  I can’t remember how many. Those ones hurt. They are the “bad ones.” This seizure wasn’t like that.

Simple and Complex Partial (also called Focal) seizures aren’t nearly as destructive.  They are the “good ones.” There is a broad spectrum of seizures I experience. The small ones can precede big ones, but sometimes I am lucky.  I will only lose a few seconds here or there. I can go on with my day, more or less. I’m not wrecked like I am after a Tonic Clonic (also called Grand Mal).  

I went almost two months without a seizure.  Which is as good of a stretch as any.  I often have multiple seizures monthly.  They cluster and I am wiped out for days or weeks after.  I can’t stay awake and sleep for 12 hours straight.  Weeks of postictal recovery stretch out.  I sleep and am unable to do simple things. I don’t leave my house.

A short complex partial seizure is like a walk in the park in comparison.  I felt fine-ish afterwards. I still felt like a person, not just a disconnected, neurological mess of burnt out circuits.

With every seizure there is infinite risk and fear.  I had been so hopeful.  Since January was such a wreck, I started a new treatment plan.  I added Keppra, an anti-seizure med, and medical marijuana.  I was hopeful that I could find that magic combination of meds that would keep me seizure-free.  I once went 7 years without a tonic clonic seizure. Those were the sweet days…  I dream of getting there again someday.   I had two months seizure-free and I didn’t have a seizure cluster.  That’s better than nothing. It’s a lot better.

I fell in love with my new Harlequin vape oil.  It is 1:1, equal parts THC:CBD.  I felt great. I had been looking for quality medical marijuana to treat my seizures for 21 years.  I have been a vocal advocate since I was diagnosed.  The culmination of Pennsylvania’s MMJ program was a literal dream come true.  I was driven 2 hours away to get my legal medicine as soon as my card was valid.  I don’t drive, seizures prevent me.  It was a big deal to get the ride.

I was ecstatic to get my new vape pen.  I bought a few different things to try, since I hadn’t tried vaping before.  Harlequin was just what I had been dreaming of.  I floated on a happy cloud and didn’t have any seizures.

Then I ran out…  And so did the dispensary…  I had two different rides set up, people willing to take the trek in the snow to get more medicine.  But the Harlequin was sold out. (It still is.) The next closest dispensary in Pittsburgh was also sold out.  It is a popular product. Thousands of people have been waiting for access to CBD oils. There is so much hope from the neurological community.  We all want CBD. I’ve contacted the dispensary dozens of times. They have been friendly and as helpful as a sold-out store can be. They keep me updated, but there isn’t the supply to fill the demand.  

There’s a small catch to our MMJ program.  Everything must be grown and processed in Pennsylvania.  That takes time. All the products available all over the country are unavailable to us.  We are forced to wait. A watched pot never boils or grows fast enough. It was great that they opened the first dispensaries, but only one company was shipping their precious products.  They have been highly popular. There are shortages all over the state. I can’t get to Philly even if they had some. An 8+ hour drive is out. It’s just not feasible for me. I have to wait until the supply is back and more grower/processors get online.  There is a dispensary that is slated open in my hometown, but the opening date is not exactly set. First it was “Late March.” Then it was “April 13th, subject to change.” It’s still nearly a month away, if all things go as they expect.  I’ve already contacted them to let them know I want to be first in line when they open.  I’m not fooling around anymore.  My mother-in-law has her card and Parkinson’s.  She is anxious to get the also-sold-out CBD capsules.  We have high hopes.

But I ran out of my medicine.  I had a seizure.  I was heartbroken.  It was a small seizure, and it was only one.  One seizure is always too many.  But you take what you get.  I felt frustrated.  I wished desperately that I could drive across town, or the state, to get some more vape oil.  The law says I can.  I had the ride.  It didn’t matter.  I considered going to Michigan or Canada.  They have MMJ and are actually much closer than Philly, yet still too far away.

I don’t blame the dispensary or the grower/processor or the state or anyone else.  We have the beginning, we have hope… But we are still having seizures and still waiting on our medicine.

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

Temporal Lobe Anomaly

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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!

I told my husband, Adam, that I was going to write about epilepsy and everyday life.  He laughed and asked me, “Do you know what everyday life is?” I laughed back.  It might seem harsh, but it’s true.  I guess I don’t really know what everyday life is.  Everyday is different.  There are days of consciousness, days of unconsciousness, and days of semi-consciousness.  There are good days, bad days, seizure days, recovery days, manic days, depressive days, even some regular, old, I-feel-like-a-normal-person days.  Everyday is a surprise when you live with seizures.  Some days you stay conscious all day long.  Some days not so much.

It’s shocking what ten short seconds can do to you.  I blipped in and out of consciousness and found myself on the floor.  I was not bleeding because my husband helped me lay down instead of falling face-first like seizures are prone to do.  (Get it?!!  Prone!)  Now I’m tired and weepy.  I thought things were going so well.

I went four whole months of consciousness and normal sleep patterns.  Now I am back to square one.  Square negative one.  My brain had an electrical storm and now I will be soft and squishy for days.  Sleep will descend like a meteor.  My windows are shattered from the impact.

I don’t want to admit how quickly doing so much better can go to smashed face into the corner of the sink and bleeding broken on the floor.  Fours month wasn’t forever, but I was starting to think it was.  Maybe I could go six months without seizure.  I would make a sign and take a selfie like all my Epi Friends online.  Ten seconds later and all that shit has been destroyed.  At least my husband was in the bathroom with me.  This time I woke up on the floor confused and tired, but unharmed.  There is always that at least.  My tongue doesn’t even hurt.  I didn’t wake up in the hospital naked.

Bathrooms are extra deadly for epileptics.  All that porcelain and water.  I read about people who have died in the bathtub all the time.  All the time.  I didn’t fall out of the shower, I just stepped out of the shower and started to fall to the ground.  That’s what my husband tells me.  I needed him to tell me.  I don’t know what happened.  I came to full consciousness in bed, with him telling me he was staying home from work.  Because I had a seizure.  That’s always news to me.  You don’t know what you don’t know.

This was what I would term “a small seizure”  I was only unconscious for a short time, not hours.  I feel unable to do anything, to attend to anything.  I hope I will remember to brush my teeth.  My children will not be fed by my hand today.  My husband has to do it all.  I’m just trying not to fall over.  I wore my shirt inside out.  I discovered it hours into the afternoon.  Just another day of everyday life with epilepsy.

The floor always wins. Today it was a soft landing at least.

NEXT UP: Be sure to check out the next post tomorrow by Abby Gustus Alford 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  June 30, 2017 at 7pm EST.

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

Trump Mania

When my new psychiatrist asked me what precipitated my manic episode, I answered “Trump.”

It was all I could think of.  I have everything I want, a great husband, wonderful children, a house, a car, cats, a Canadian vacation.  Why did I go crazy this time?

It first started after the election.  That’s what my mother-in-law told me.  I trust her.  She would know.  It wasn’t her first rodeo with mental illness.  She’s seen a lot of people lose it.  She told me, “My aunt struggled…  But she went sane a lot too.”

I want to go sane again.  I  believe I can have a sane episode too.

November 9th was the first sleepless night of too many since then.  I stayed up all night, shaking from the results.  I worked all day as a poll worker, trying to ensure a free and fair election.  Then, the results trickled in.  I couldn’t sleep.  Since then I’ve been on a roller-coaster.  Four days and three nights is much too much time awake with your own demons.

Mania feels more real than depression which muffles out everything.  Mania gets stuff done.  It’s not always crying and screaming.  It’s that part plenty, but there is also the burst of productive energy.  Chapters edited in days, two trips to the laundromat!  The best family vacation ever!  Then I feel enraged over everything.  I am zero to 150 in less than seven seconds.  My thoughts chase themselves around until I can’t hold it in.  I’m not proud of this.  I actually feel very ashamed of it all.  The weakness, the fear, the sleepless nights when I’m just awake, wanting to fight or talk to anyone.  Thank god for my family in other parts of the world, with other schedules and time zones!

Then, weeks of sleep.

I ache for a middle ground.  No more upside down roller coasters.  Just a smoothly paved road with good water drainage.

I want control over my myriad of emotions that change on a minute to minute basis.  Depression is easier.  Mania is intense and urgent.  Depression is more predictable.  The paranoia is frightening.

It seems crazy to talk about it now.  The weird things I thought.  How convinced I was of them.  The way I noticed every single plane or helicopter that flew over head.  Perhaps THEY were coming for me.

I should have shut my damned mouth and not publish scores of questionable blogs.  I thought the Secret Service was coming to take me away.  I almost cut my hair off.  It felt like it could be a liability if I was in prison.  Prison fights and all.

It felt so real.  It all made sense after all.  I am a terrible person.  My disease must make me a monster.  Everyone is afraid of me.

Nobody can tell me otherwise.  I don’t listen to anyone.  My kids are forced to remind me time and time again~ “Mom, you’re delusional.”

It’s so hard on them.  They carry the worry around with them at all times.  It’s a burden on them.  I feel like a much older woman than I am.

So~ When my psych asked what happened?  I had to go back to when I stopped sleeping.  I have a complicated relationship with sleep.  I require more sleep than the average person.  I always have.  Naps are a fact of life.  It feels like a deficiency in me.  Not sleeping is not good for me.  The election was the precipitating event.

Since then I have been wrapped in a constant cocoon of impending doom.  I have what used to be known as a pre-existing condition.  Temporal Lobe Epilepsy rendered me un-insurable for over five years.  I could not buy health insurance.

The Affordable Care Act protected me from that nonsense.  I could take my meds and treat my disease and have insurance!  I wasn’t a condition, I was just a person.

When Trump repeals that, I am back to that fear I lived as an pre-existing condition.  All I want to do is have less seizures.  I need health insurance for that.  Anti-seizure meds are not what you would call inexpensive.  I was up to nearly $5000 a month if I had to pay out of pocket.  That’s not feasible.

Thinking about what would happen if I lost my insurance makes me feel nauseous and dizzy.  I’ve been feeling doomed ever since then.  Does this seem to be an unrealistic fear?

The thing about fear is~ it doesn’t have to be realistic.

Trump set me on a manic spiral that I can only hope has receded by now.  You’d have to ask my family to be sure though.  They know the signs better than I do.

I changed my medicine and I feel moderately better.  At the least, I feel empowered to try something new.  I have the power to try.  My family deserves it.  I just have to stop thinking.  And avoid the news at all costs.

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Mood Swinging

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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

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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!

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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