If you didn’t know what it was, you would never guess the purpose of the squat gray building.  The sign was a plain circle with “CY+” on it.  The name gave nothing away.  The sign was blue and white.  There were no green leaves anywhere.  It was located in the middle of an industrial park.  My appointment was at 11am, but the building was still dark and locked.  There were enough other people waiting that I figured they would open sooner or later.

I originally wanted to take a picture, to commemorate the moment.  The building wasn’t picture worthy.  It didn’t look like the historic landmark it was.  The skies were as gray as the building and the rain was falling in sheets.  There would be no picture of me smiling next to a sign. The parking lot continued to fill up as we all waited inside our cars in the heavy rain.   

“At least it isn’t snow.” I quipped.  We would have still come in the snow, but it would have been a bit dicier and icier.  

I prayed they weren’t accidentally closed for President’s Day.  I scheduled the appointment online, specifically for the first day my card was valid.  The first products available statewide were delivered on Friday, only four days before.  I didn’t want to wait a day longer.  Hasn’t 21 years been enough?  

I choked back tears of excitement and tried not to be impatient.  I had already waited decades, a few more minutes wouldn’t matter.  The dispensary was here.  It looked like a fortress.  Medical marijuana has finally come to Pennsylvania!  So many of my friends and neighbors told me, “It will never happen here.  We’ll be the last state.”  I was proud and excited to prove them all wrong.  I was what you might call “anxious.”  I made a nearly two hour trip to this innocuous locked building.

These were the first days of MMJ for our Commonwealth.  Things were certain to have some kinks to work out.  Their hours were not officially set.  I started to doubt the time I scheduled the appointment for, was it 11 or 11:30?  The street started to fill up with huge puddles of water.  I watched every car drive past and shoot up a spray of water as it hydroplaned.  I’d  never been to Butler before.  It looked like any other Pennsylvania town.  I thought they needed a better water drainage system.  

Eventually someone unlocked the door and stepped out into the rain.  I sprang from the car and started to run towards him.  “I’m sorry,” he apologized.  “Did you have an appointment?”

“Yes I did!  11 am!”  I greeted him with a smile and adeptly avoided a puddle. He tried to apologize again, but I didn’t care.  I was the first one in the door.  I already had my MMJ ID card in my hand.  I didn’t need an apology.  I needed inside.

“How are you today?” the receptionist greeted me after apologizing again about the late open.

“Great now!” I answered in a more cheerful voice than I usually use.  I bounced up and down and tried to listen to her explain the form she handed me.  I would sign anything she asked me to.

Finally, she stopped talking and buzzed me in.  I stepped into the waiting room.  It was like the nicest doctor’s office I had ever been too.  I choose a bright yellow, retro, cushioned chair.  There was a large table in the middle of the room that was made of a single slab of wood, with rough edges and high gloss, covered with Ipads with information to read.  I was in love.  

Someone else entered the room, clipboard in hand.  I gave him a big smile.  I hoped he was happy to be here too.  I wanted him to get relief from what ailed him. I was jittery and had already read every flyer in the room.  I scanned the information on the tablet mindlessly.

I wanted to ask the other patients that slowly gathered in the waiting room, “What are you in for?”  

I didn’t want to be nosey, but I intrinsically am.  We all looked slightly desperate around the eyes.  We were the hardcore ones.  The ones that drove hundreds of miles to get our medicine.  One older gentleman wore compression socks.  I don’t know how long they had been waiting for their medicine, but I know it was too long for me.  Anybody can get weed, that’s not why we were here.  

In fact, in Pennsylvania there isn’t even any “bud” or “flower” or “weed” available.  It’s all concentrates to vape or capsules, which were already sold out.  The Moms have been waiting a long time for them.  So many patients with seizures are pinning their hopes on CBD oil.  I don’t mind smoking, I’ve been smoking for longer than I like to admit.  But nobody wants to give their baby a vape pen.  But they do want to give them CBD pills to help calm their brains and hopefully decrease seizure activity.  

ONE less seizure is a blessing.  Ask any who lives with seizures or loves someone who does.  We are desperate for medicines that don’t rot our livers and rob our bones of calcium.  Desperate for something else to try before BRAIN SURGERY.  I have been offered brain surgery more times than I can remember.  Only one doctor offered me cannabis.  Which would you like to try first?

It’s NOT about getting high.  If I wanted to get high, I would.  I did on the way there.  I wasn’t looking for a buzz, I was looking for a specific chemical compound.  I did my research, I went in there ready to do business.  It’s all about the CBD oil.  I didn’t have any access to the CBD cannabidiol oils.  They are not the same thing as THC.  I didn’t have access to the refined oils that I need.  My friendly neighborhood drug dealer could not get me any.  I asked.  

I read success stories online everyday.  I belong to several online epilepsy groups.  I keep in touch with many other people living with seizures.  Many of whom are successfully treating their seizures with CBD oils.  I know other people who have flown or moved to Colorado to purchase the Holy Grail of Medical Marijuana.  I can’t afford to and don’t want to do either.  I do want to drive across town to get some medicine.  For the time being I will drive across the state to get some.  Or to be more specific, I will be driven.  My seizures stole my ability to drive.  But my Dad drove me.  (Isn’t he great?!)  It was almost two hours in the driving rain.  But what is two hours for a lifetime of hope?  

The first reviewers complained of the cost.  They claimed that they could get better prices on the black market.  Or Colorado.  We are not Colorado or within two days drive of it.  I don’t know what kind of black market you have access too, but these products aren’t found on my black market.  I can’t afford to travel to New Jersey or Delaware or California or any of the DOZENS of other states who allow MMJ.

Of course, I wish things were cheaper.  But the prices will stabilize soon.  There are only a few dispensaries open, the supply is limited.  Everything needs to be grown and processed here in PA.  Not everything is up and running.  I am happy to travel less than two hours to get a product I don’t have any other access to.  I like to take road trips around my home state anyway.  Butler had an interesting skyline with some pretty church spires nestled into the gentle slopes of Allegheny foothills.   

My dad told me not to stop smoking pot, use this in addition.  You have to love a parent that encourages you to use drugs…  But it’s not drugs anymore.  This isn’t weed, this is medicine.  My doctor told me so. It was so gratifying to hear the doctor tell me I might be able to control my seizures or at least alleviate some of the symptoms.  Finally a doctor agreed with me.  I was diagnosed with temporal lobe epilepsy in 1997.  I’ve wanted MMJ since.  It was already legal in California back then.  Finally, Pennsylvania will give me chance to treat my seizures as I see fit!

My hometown of Erie is set to have one dispensary, but there’s no firm opening date yet.  It’s not real until it’s open and I’m standing inside.  Or better yet, standing outside with a brown paper bag in my hand.  

If you didn’t know what it was, you wouldn’t know.  The cannabis oil cartridge looked like any old tube.  The thick liquid looks like honey or amber.  It is so beautiful.  It holds so many of my hopes and dreams.  I didn’t have a seizure yesterday, and I haven’t had one today.  That’s a win in my book.

I’m not used to being filled with so much hope.


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Cannabis in the Keystone State


The state of cannabis in the Keystone State is in flux.  Cannabis remains illegal and punishable with jail time for even minor offenses.  Some cities have decriminalized it, Philly, Pittsburgh, State College, Harrisburg to name a few.  Medical marijuana is legal, but unavailable as of yet.  Over a year after Act 16 legalizing MMJ was passed, there is still no way to access the medicine.  It remains an illusive promise dangling on the end of a very long stick.

On June 20, 2017 the PA Department of Health announced 12  permits for marijuana grower/processors statewide.  The PA D.O.H. divided the 46,055 sq mile, 67 county, state into 6 massive regions and awarded two permits in each region.  Berks county got two.  Several of the business are owned by out of state entities.

I’m a little peeved up here in the Great Lakes region of PA.  Erie county is two hours away from the closest grower.  We are the fourth largest city in the state.

I often feel we are left out of important state matters up here in the far right corner of the state.  I thought we were an excellent town for a growhouse.  On the day after the presidential election day when my children and I stayed home sick and mourned the results, I attended a community meeting about MMJ in Erie county.

Local businessman Sam Black III, heir to Erie Insurance, laid out his specific plans to turn his empty building and lot into a growhouse.  He was just the man we needed.  An Erie native, he believes in the value of our rust-belt, fished-out, lake community.  Erie Insurance is one of the largest and best paying employers in Erie.  He wanted to bring MMJ to our shores ASAP.  

He looked me in the eye and told me “Let me be clear, I have a family member who’s intractable nerve pain is only treatable with cannabis.”  His intentions were believable and he had the necessary capital needed.

PA isn’t going to let just anyone grow pot.  You have to have $500,000 in the bank to start.  It’s $10K,  non-refundable to apply.  $200,000 for the permit and you must have $2 million assets available.  It’s a lot.

Sam Black has a lot.  He remains committed to our community.  He wants to get MMJ to his loved one.  He had already contracted with companies in Colorado and the local osteopathic college, LECOM.  It was the only thing that made me feel better in the days that followed the Trumpening.

I was convinced.  His new company, Calypso was going to be great for Erie.  Not a single person spoke out against the plan.  Multiple people asked about jobs.  Mr Black promised 40 jobs to start.  The meeting was held in a hollowed out former office building for the closed International Paper Mill.  The loss of the plant was a blow to the neighborhood.  The smell cleared up but the jobs went away.  The lot has been sitting empty since the mill closed in 2001.

Mr. Black had the building stripped and was ready to be outfitted with the latest grow lights and processing materials.  I could envision the green plants growing already, gently waving in the well circulated air.  Our precious lake, a great source of fresh water, is only yards away.  It was a winning plan.

But we got stiffed.  Calypso scored 575.78 out of 1000 on their very important rubric.  I don’t know how they determined that score.  But I do know that 12 permits for a state of 12.8 million people isn’t enough.

My advocate friends reassure me that it doesn’t matter where the cannabis is grown in the state.  The dispensaries are the important part for patients like me, who are impatient at our twenty+ year wait for safe medicine. I was first diagnosed with epilepsy 20 years ago. I’ve wanted MMJ since then and have been advocating and protesting for it.  Now the end is in sight, I hope.  I presume that the 12 lucky winners are already working around the clock to get seeds in the dirt or growing medium of choice.  They must be ready in 6 months.  Merry Christmas PA!  

I was sure that the largest city in this region dominated by The Allegheny National Forest would get a grower permit.  The entire process has been so protracted and onerous.  My hope grows dim.  I still don’t have my card.  I could have had one when I lived in California in 2003.  14 years later and I am still high and dry in my home state.

They dispensaries were announced yesterday.  Although Erie county thankfully received ONE, it’s not in Erie.  It’s on the far west side of the county, in an affluent suburb of the city.  Fairview.  Fairview is close, but completely across town.  It’s so far across the city, I hardly visit.  We need a dispensary in the city, and one on the East side.  I find it hard to believe we have only one.  But at least we weren’t snubbed completely.  I’ll make the long drive across town.  Or rather, someone else will drive me across town.  I have seizures and can’t drive.  It’s a long drive when you can’t drive.  I am salty about it all.   The sick people of Erie County can’t all afford to live in Fairview.  I’m glad I’m not in the south part of Erie county or the many small forest counties that got none.  But one is not enough.  We should have growhouses and dispensaries for all, already! 

There aren’t even any doctors registered yet.  Epilepsy AND seizures are both listed as permittable conditions.  Everyday we wait is a day that could hold one, two, three, four or more seizures for me.  I try so hard to stay positive, but it’s hard when the permits go to out of state businesses.  It doesn’t seem fair and is certainly against the meaning of the bill.  But PA is known as Pennsyltucky to those in the know.  We’re still a backwater state, that swung red due to the massive amounts of rural districts.  Our state government is in a constant deadlock and has a crushing deficit looming.  

Of course, legal cannabis sales are solving tax problems in Colorado and Washington…

Meanwhile in the PA, we wait.

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Temporal Lobe Anomaly


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 for more on Epilepsy Awareness. For the full schedule of bloggers visit 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

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


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 for more on Epilepsy Awareness. For the full schedule of bloggers visit And don’t miss your chance to connect with bloggers on the #LivingWellChat March 31, 2017 at 7pm EST.

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Filed under Living w/ Epilepsy, Non-fiction

Don’t Look Now, It’s a Seizure!


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 for more on Epilepsy Awareness. For the fullschedule of bloggers visit 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