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!

The last thing I do everyday is take my meds.  I get my glass of water and fill the cats’ bowl with fresh water.  Then I take my keppra, lamictal, vitamin B12, calcium and cannabis.  I like to vape a 1:1 THC:CBD hash oil. It’s a beautiful amber colored viscous liquid that keeps my seizures at bay, just like the lamictal and keppra.  After years of uncontrolled seizures, I have had months of seizure free living. It’s like being a new person again. I have searched for a magic ratio of seizure meds for years, decades.  The addition of cannabidiol made all the difference. I can spend my days, awake and aware. I know what day and year it is. That has not always been the case. I have forgotten what year it was and even who the president was.  I said Clinton when Obama was in office. Years were wiped clean off my memory for a bit.

Once I forgot my husband was having surgery.  I woke up confused and saw written on the calendar, “Adam’s Surgery.”  It was my handwriting sure as anything. I didn’t know what day it was or what surgery my husband was having.  We only spent a year on doctor’s appointments and tests prior. I had seven or so grand mal, tonic clonic, seizures over the course of a week.  My brain was like a mush of week-old oatmeal. Eventually I remembered the neck dissection and was able to go wait in the hospital for some of the scariest hours of my life, waiting for my husband to get his neck cut open and thyroid removed, and praying I wouldn’t have a seizure and end up in the ER.  His tumor was large and visible to the naked eye. Somehow my brain forgot it all for a bit. It’s a bad feeling. Sometimes I wonder what it’s like not to forget.

Another time forgot I was lactose-intolerant.  I used to enjoy many cheeses, but after I had my gallbladder removed, I haven’t been able to stomach dairy.  It’s been years since I ate dairy. Then I had a seizure and forgot. My tongue was sore and I wanted something soft and cold to eat.  I poured a big bowl of cheerios and ate the entire thing before my body reminded me of why I quit eating milk. I remembered too late. I considered tattooing a list on my arm.  Number one: no dairy. I might forget again and revert to my cheese eating days. Who knows?

You never can tell what a day might bring, living with epilepsy.  You might remember something from long ago. A forgotten memory triggered by sparks of electricity.  You might be overwhelmed by a feeling of deja vu, or worse, jamais vu, when everything looks unfamiliar and strange.  Instead of feeling like you’ve been there before, you feel like you’ve never been in own your home. It’s disorienting and scary. It can often lead to another, full brain, tonic clonic seizure.  It might not. It might just be a fleeting moment of terror and confusion.

Sometimes it’s just a smell.  Something lingering on the end of your nose, unrecognizable and familiar.  There are over forty types of seizures. They might cluster together, multiple seizures in a short period of time.  There might just be one. You might go months, years without one. You can’t predict when the electricity will go off and short circuit a brain.

Cannabis helps.  It helps keep the brain waves at bay, steady and less prone to uncontrollable bursts of electricity.  I am happy to stay medicated. The cannabis isn’t covered my insurance, and I am lucky to be able to afford my medicine.  I am lucky to living in a medical state. I recommend cannabis to all my epilepsy friends. It’s made a world of difference in my life.

NEXT UP: Be sure to check out the next post tomorrow 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.

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In the Shadow of the Strike

I peer out my window and look for the orange glow of the burn barrels.  The local locomotive plant is on strike and they are dug in.  There are several camps of strikers, blocking all the entrances.  It’s 15 degrees outside. The community is divided. Many people support our local union, UE506. Many people don’t support unions at all.  They consider them elitist and blame all the lost jobs on union intractability. They worry the plant will close. We wouldn’t have any work safety laws, the 8-hour day, sick pay, or paid holidays if it wasn’t for the unions who struck for the rights of the people.  The unions struck saying we deserve a living wage, for now and in the future. The union isn’t just working for the current laborers, they are working for the laborers of the future. The generations of workers to come who also deserves a living wage. We have what we have today because of the generations of workers before us who fought for us.  My children don’t have the work in the coal mines or textile mills, they are free to be children. Unions gave us that, striking in the dead of winter gave us that.

I can’t help but think of the Lawrence, Massachusetts textile strike in the winter of 1912.  People died for our rights, but they won. Our workplaces are safer now, young women no longer die at the average age of 26 in the loom rooms. Over a hundred years later, Lawrence Park, Pennsylvania is standing in their shadow.  The wind is blustery and the local plant is no longer GE.  The company that literally built the house I live in, 100 years ago, is gone.  GE has been the cornerstone of my community for all that time.  People have lived in the rowhouses and worked at the plant.  My father worked there for over 30 years.  My father in law worked there too.  They both are retired now, living on pensions that were promised them and fought for them by their union.

GE used to be called Generous Electric.  They built this town and planted trees and plotted out land for parks.  They offered the best jobs and job training in town. When I was a kid in the 80s the plant was jam packed with cars, two huge parking lots that lie empty today.  The main roads still get jammed at 3pm when the plant whistle blows.  I can hear it from inside my house.  I knew the strike was coming when those parking lots began to fill with cars.  Nobody uses them anymore.   There are less workers now than there used to be. 

GE sold the company and the new company, Wabtec, is trying to sell them out.  They want to bring back laid off workers at a lowered wage and cut the new-hire wages.  The union thinks that a two-tier system of wages is a way to erode the working class wages in Erie.  They are right. GE/Wabtec is one of the few remaining manufacturers in our rust-belt town. They build world-class locomotives that pull trains in countries all over the world.  They are still one of the “good jobs” in town. My neighbors still work at the plant, and have given their adult lives to building trains.  I see many who still walk to work everyday, despite the sleet or rain or snow.  These people are happy to work hard and build the locomotives that make our world work.  They deserve to have their contracts upheld.

I don’t know what is going to happen.  The state of affairs at the plant is always to great interest to those of us who live across the street from it’s lumbering campus.  The loss of jobs, when GE opened the new Texas plant, was palpable.  The community suffered.  The schools suffered.  Now Wabtec is the new boss in town and they don’t like the Union contract.  They want mandatory overtime and wages slashed for the next generation of workers.  I might not work at GE, my husband doesn’t either, but the status of the plant is the status of my town.  Will we have good, safe jobs at a fair wage? Will the worker of today be able to grow the families and children that will build the trains of the future? My father was able to support our family.  That’s all we ask for.

I visited the men and women at the burn barrels.  They were standing in the snow and the mud, trying to keep moving and stay warm and make a stand for the future of our community.  I told them, “I support you.” They thanked me and one man told me, “I hope we aren’t shooting ourselves in the foot.”  He just wanted to go back to work and do his part on the assembly line.  Nobody wants to stand around in the snow for days and nights, waiting for what is right. They just want to go to work, in a safe place, with set hours, and fair wages for all the workers.  Don’t we deserve that?

We wouldn’t have any job safety rights without the unions.  No Monday thru Friday work week, no minimum wage, nothing. Workers would still be dying in factories for wages that can’t support their families.  We live in a better world then we did in the past. Our workers have rights and protections. Our union isn’t going to sit by and let them take it all away.

The last time the GE plant struck was fifty years ago.  It was also in the winter, in the dead cold of the snow belt, where in will rain and snow on you in the same day, for days on end.  This isn’t California or Florida where March is spring and the days are sunny. We are clenched in the fist of winter, not yet willing to give up for a few more frigid weeks.  Unless you’ve stood in the snow for hours in 15 degree weather, you can’t know what cold is. Great sheets of ice still float upon the lake. When the sun shines, it’s like a cruel joke.  It’s blindingly bright but still freezing cold. The light sparkles off the snow like diamonds. The wind cuts like a knife.

I watch my neighbors drop off wood pallets and donuts and whatever else they can offer.  The union hall is a beehive of energy, people cooking food and coming and going from the line.  Sometimes there are children walking the line. Their parents and grandparents and maybe even great-grandparents worked at the plant.  This plant has made billions of dollars of profit for GE and it will do the same for Wabtec. The strike is well-organized, just like the plant the workers run.  We’re tough here in northwestern Pennsylvania. The weather makes you hard. It’s just another thing to endure. And endure we will.

Welcome to Lawrence Park, Wabtec.

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Epilepsy and the Internet


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!

Thanks to the internet, I have a group of people I call my Epi Friends.  These are people all over the world who are living with epilepsy and talking about it.  It’s been a life-line.  I used to feel isolated at home, unable to drive and without access to other people like me. When I was first diagnosed, in the last century, I only knew one person with epilepsy.  Hers was caused by a brain injury, mine had no known cause. We didn’t talk about it. For years I was alone with my disability. I didn’t understand it and neither did anyone else. Then Facebook and Twitter exploded and suddenly I had access to millions of people living with the same daily struggles with epilepsy.  We are united.

The internet offers us a unique way to share information and grow community support for epilepsy.  Every epilepsy awareness post can help educate the world and reduce the stigma.  People from all over the globe can get together and share their experiences.  My friend Matty is in the UK, Dave is in Canada. We wouldn’t have met otherwise. We touch base weekly, offering each other “Have a seizure-free day!” It’s a small thing, but it can make a world of difference.  I have a loving and supportive family, but they can’t know what it’s like to forget your middle name or wake up in a strange place not knowing how you got there or what year it is. That understanding comes from people who share the same sorts of experiences.

Some days I answer questions, some days I ask.  My new favorite facebook group is “Seizures with a sense of humor.”  We laugh at the peculiars of our everyday life.  Some jokes are mild, some are raucous. “What’s an epileptic’s favorite dinner?  Little Caesars. Shake and Bake.  Caesar Salad.” 

You have to laugh about it sometimes. Laughing about it lessens the load. The community can share a laugh and normalize our situation.  Recently I read a post about “Where is the weirdest place you ever had a seizure?” Once I woke up sleeping in the empty tub, fully clothed and covered in a blanket.  Someone else shared that they took a shower fully clothed.  It is great to share our weird experiences and feel a little less alone in the world of fully conscious people.

NEXT UP: Be sure to check out the next post tomorrow by Maureen Knorr 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 on December 6 at Noon ET.

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Epilepsy Every Day


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 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 June 30 at 7PM ET

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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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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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Filed under News, Rant

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

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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Filed under Essays, Non-fiction