Tag Archives: Allegheny National Forest

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 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

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

We need more 400 year old trees!


I’ve just returned from a long weekend in the woods.  My family stayed in tents and communed with nature.  My son and I took a meandering walk on an unmarked and unmaintained trail.  It was fun?  I recharged my nature battery.  Spending time in the forest is essential to me.  Four days in the woods changes you.  (Mostly, you are covered in campfire soot!)  There is a lot of thinking to be done in the forest.  I learned many things.  I read the signs on the designated Interpretive Trails.  I am like that.  Then I looked at the trees around me and was taken to a different time and place.  I marveled at the differences in this forest from the one surrounding our campground just across the forest state road.

I had no idea that the trees that I loved in the Allegheny National Forest were mere saplings.  Saplings!  There is an old growth preserve in Warren County Pennsylvania called Heart’s Content.  The Hemlock trees I saw there were so different from the ones I know and love.  The Hemlock trees that now profligate in Pennsylvania are just babies.  Babies!  The old growth trees are about 400 years old.  Some of them are dying.  The ones that are alive are monsters.  They are more like the redwood trees than I would have ever guessed.  I didn’t know.  The trunks are so large that it would take two or three people to wrap their arms around them.

The ones that grow in the rest of the budding baby forests are lacy, with their needles low to the ground.  The old growth trees are so wide and tall that I can barely see the tops.  I needed binoculars to see their familiar needles up in the sky.  Their trunks are tall and straight and wide and the branches are at the tippy tops of the trees.  I did not recognize them.  The shape of the tree is entirely different with the massive trunk and high canopy.  I had to tip my head all the way back to see the branches.  The rest of the forest is just beginning to grow.

It had changed drastically since it was raped and murdered.  My entire state has been clear-cut, sometimes more than once; many times more than once.  In some areas three or more times the mountains were stripped of all life.  They are still doing it.  I have seen it.  There is nothing as heartbreaking as a clear-cut mountainside or a natural gas well or a hydraulic fracking site.  I hope you never have to see it.  It is murder to everything in a forest.  Everything dies.  What grows back is not the same.  If it is even allowed to grow back.

There are more oaks in the new growth.  They are the “tall trees” not the Hemlocks, not the White Pine, not the Beech Trees.  The Beech Tree is a tree that is dying out.  There are none in the forest just across the street from the 400 year old beasts that grow with the old Hemlocks.  Something is eating and killing the bark.  You can see the milky white spots on the bark.  They might go extinct like the passenger pigeon.  Gone forever.


The new forest is all oak and maple and Hemlock.  The old forest was Hemlock and Beech and White Pine.  There are two trees that are entwined in a 300-some year old embrace.  A Hemlock and the Beech grew up so close together that their trunks are like one.  They have grown together, best friends.  The Hemlocks now have no Beech trees to live symbiotically with.  This is one of the last areas on the entire East Coast with wild, ancient White Pines.  It looks so different now.

The signs in the Park informed me that the ferns that I always considered to be classic PA forest are an invasive species that has drastically changed the forest.  The dense ferns prevent any seedlings from sprouting.  I always thought the ferns looked prehistoric, like they were a part of this place forever.  They were not.  The deer eat all the saplings but not the ferns.

The deer have very few natural predators now that the pumas and bobcats and Nittany Lions have gone underground.  They are few and far between and simply cannot kill all the deer.  The bear don’t care for the deer as much.  They have berries and honey and easier, slower prey to catch. The omnivore is the king of the forest.  Bears can eat whatever they want to eat, whatever is in season.  They like to dine in campgrounds and small town dumps.  Why chase a deer while you can feast on all the things humans don’t eat?

It’s disappointing to learn that your forest is nothing like it used to be.  The changing face of nature has been forced by man.  My trees are babies, but they are growing.  There are so many things growing in the forest!  The forest is still flourishing, albeit differently.  Perhaps if we leave them alone, these trees will one day be 400 years old.  My great-great x9 grandchildren will see what my great-great x9 grandparents saw when they arrived here.  And even if it is vastly different, at least they will have 400 year old Oak trees to marvel at.

My forest is not what I thought it was.  It is much, much younger than I thought.  It is a different place than I knew yesterday.  I still love the Allegheny Forest.  I will always be happiest in the forest.  I am already planning my next camping trip in my precious baby forest.  Things change, we can’t stop that.  But we can stop clear cutting and let the baby trees we have now grow!!  Twenty acres of Heart’s Content is not enough.  Soon we may have no 400 year old trees in the forest.  And it takes 400 years to grow another one.  We have to start now!  We have to STOP now.  Stop.  Let the forest grow!  Stop Fracking with my Forest!


The forest ninjas are coming for you.


Filed under Essays, Non-fiction