Category Archives: News

High Hopes, Low Supply

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

“How do you know?” I asked.

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

I asked her, “What happened?”

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

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

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

“How long did I lose?” I demanded.

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

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

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

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

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

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

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

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

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

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

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

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

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

Cannabis in the Keystone State

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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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Reefer Sadness

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

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

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

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

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

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

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

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

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

Sign, or Die!

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

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The Fight Grows On

 

FemaleCannabisClusterThe buzz has not worn off.  Pennsylvania House of Republicans passed medical marijuana!!  This is really happening!!  So many people told me, “PA will be last.”  We proved them wrong!  We have won a great battle.  The war wages on.  There are many Pennsylvanians left out of Senate Bill 3.  Smoking is prohibited.  We can have oils and tinctures, liquids and edibles, but not grow our own plants.  It is not a perfect bill.  Some say it’s not as good as SB 1182, which was the first medical marijuana bill the Senate passed in 2014.  The House let that die.  I had serious doubts that the House would ever vote on SB 3.  I am happy to be proven wrong.  I am happy to have a new baseline to work from.  Things can only get better now!

Medical marijuana is one step closer to my ultimate goal of full legalization.  Chairman of the Health Committee Matt Baker argued against this bill in part because activists want a complete end to prohibition.  He would like to help the sick, but the risk that some people might want full legalization was too much.  Representative after representative got up and spoke about the heroin crisis our state is facing.  Matt Baker claimed that marijuana “primed the brain for heroin.”  He spoke over and over again attacking the bill from opposing sides.  He made me yell and cry and then laugh my butt off.  He told a dramatic story of a building collapse leading to the death of a man who was “diagnosed with marijuana.”

My blood boiled when he said that he had a letter from the “American Epilepsy Society” begging him not to pass SB 3.  I don’t know who the American Epilepsy Society is, but they sure as hell don’t speak for me.  They are not the voice of epilepsy.  The Epilepsy Foundation is.  They are all on board.  Anything that reduces one seizure, one second of one seizure, is a miracle.  A miracle!!

Matt Baker wanted you to believe that the epilepsy community is against medical marijuana.  He’s a liar.  I am active in the epilepsy community.  I know all the groups.  I never heard of the “American Epilepsy Society.”  They are not a real epilepsy advocacy group, just a name that sounds official.  Everybody who knows anything about seizures is 100% behind medical marijuana.  Anything that helps.  Anything.  I am so relieved to no longer be a criminal.  I’m just a patient who wants to feel better.

So what is next?  The bill is not perfect, no bill ever is.  The Senate has to agree to the changes.  The governor promises to sign.  Then the grass will start growing.  We can figure out things as we go. Currently SB 3 allows for treatment of HIV/AIDS, seizures, epilepsy, autism, sickle-cell anemia, Crohn’s disease, cancer, ALS, PTSD, MS, Parkinson’s Disease, inflammatory bowel disease, damage to the spine and nervous system, neuropathies, Huntington’s Disease, chronic pain and glaucoma.  I believe the list will eventually expand.

What does this mean for Erie County?  That depends on whether we want to be part of the party or not.  There will be hundreds, maybe thousands, of jobs created in growing, producing, and distributing marijuana oils.  I see no reason why we shouldn’t be at the forefront of this.  We have empty buildings just waiting for something to do.  We have fresh water and empty storefronts.  We have thousands of sick citizens of Erie County who will want medicine, as soon as possible.  It’s already too late.  We can’t wait any longer.  Permits will be given, licenses will sold.  Doctors will have to take a brief class on medical marijuana.  All this can start happening as soon as next week.  The movement isn’t over, it’s really getting started now.  All the years of hard work are finally paying off and the real work can begin.  Sow the fields and plant the hemp and marijuana that will grow our economy.

Now is the time to act.

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PA Goes to Pot!

 

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Wednesday, March 16, 2016 was a historic day for my Commonwealth!  Medical marijuana, which has been growing moldy in the House basement, was taken out and given the light of day!  Senate Bill 3, The Raymond Shafer Compassionate Use of Cannabis, was finally voted on in the House of Representatives.  It passed 149-43.  Medical marijuana IS coming to Pennsylvania!  The Senate has to concur with the changes the House made.  Then it’s on to Governor Wolf’s desk.  He promised to sign whatever time, day or night, that the bill hits his desk.  He was there for the vote and tweeted “Now is the time to act!”

Senate Bill 3 passed in the Senate with a vote of 40-7 in May 2015.  The House tried their best to kill it.  They sat on it and did nothing.  The head of the health committee was against it, so it didn’t have to get heard.  Rep. Matt Baker wanted to kill medical marijuana.  He failed.

I cried like a baby.  I bawled.  My cats gave me odd looks.  My kids didn’t quite know what to think.  Why was the boring political TV making Mom cry so much?  I felt relief like I have never known.  My state finally believes in me.  All these years, all I wanted were less seizures.  My state said no.  Yesterday, they said YES!  It has been such a long road, covered in seizures and bumps and bruises and blood.  So many activists died while waiting.  The end is finally in sight!  PA has been languishing in prohibition for far too long.  All of that is drawing to an close.  The light at the end of the tunnel is bright green!

A great pain rose off my chest when the vote came down.  The cloud lifted and the haze cleared.  I’m not a criminal!  I don’t have to  move to Colorado!  I can stay here and get the treatment I deserved.  I’ve cried about it so many times.  Now they are tears of joy and relief and happiness.  Treatment is within reach for me!  I am satisfied I will be able to get my precious medical card.  I’m an epileptic.  I can’t stay conscious!  We should all know this by now:  Marijuana reduces seizures.  This law is for me!  Of course, the fight is not over.  There are many people who are left out.  I promise you, I won’t stop fighting for you. Now we can be healthier while we fight.

As if all this wasn’t enough, Industrial Hemp Senate Bill 50 passed the Senate 49-0.  We are on our way to join only a few other states who allow hemp to be grown on large agricultural scale.  It is a legal crop.  Let’s grow some hemp!  It will be a lucrative crop for our state.  Hemp has a few more hoops to hop through.  They need to get a hearing in the House.  The House is a lot less friendly than the Senate.  They stonewalled medical marijuana for YEARS!

It may take years to get Pennsylvania’s programs running.  Not everyone is happy with SB3.  I’m giddy for the baby-step in the right direction.  Two steps forward and one step back is still one step ahead.  It has started.  It cannot be undone.  We are not a pioneer in this fight.  Pennsylvania is late to the game, but we’re here now~!

In the meantime, we need to educate our doctors.  We need to let them know they will be protected when they prescribe medical marijuana to their patients.  We need them to know why they should.

Today we celebrate!  The tides have turned.  They are green and foamy.  Pennsylvania will be growing marijuana and hemp.  Hemp was once our major crop.  (Why do you think there is a town named HEMPFIELD?!)

We are bringing hemp back to Hempfield!  

We are bringing compassion and cannabis to the sick and hurting!

Please remember who voted against compassion and vote accordingly.  Election Day is April 26th.  Many House seats are up.  You can check the vote here.

To all the Haters who said we couldn’t do it:  Put this in your pipe and smoke it!  Enjoy this picture of The Capitol Building lit up green in honor of SB3!

Th House goes GreenWe weren’t last!

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Will Today Be The Day?

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Will today be the day that my life changes forever?  We usually don’t get that kind of head’s up.  The big life-changing stuff is often a surprise.  Boom.  You’re in the ER.  Your life has been altered forever by your diagnosis of Intractable Epilepsy.  That’s how it happened to me.  Today, I am holding my breath that my long, dark, night of my soul is almost over.  I have been promised that today is, finally, FINALLY, the day.

The Pennsylvania House of Representatives is poised to pass medical marijuana!  My group of advocates are gathering in the Capitol for the hopeful celebration.  I will celebrate alone, in my home.  I would have gone if I could drive, but my disease stole that away from me.  I have only the Sunshine Law, LIVE TV feed, and all my friends on the inside Tweeting in real time.

We have been promised so many times.  This time the final vote is so close we can taste is.  It tastes like a pot brownie, which was not stripped from the bill by my nemesis: Representative Matt Baker.  I have written about this man before: https://ktslagle.wordpress.com/2015/05/21/representative-baker-is-a-big-fat-faker/

The Head of the Health Committee is the darling of Big Pharma.  He has been stringently opposed to compassion for YEARS.  The Senate passed Senate Bill 3 almost a  year ago.  A similar bill passed a year  before that.  He and The Speaker of the House let that one die.

Mr. Baker introduced amendment after amendment trying to strip this bill.  He spoke again and again about the evils of “so-called marijuana.”  (His words!)  He lied over and over.  He claimed that more ER visits were due to marijuana than heroin.  Are you fucking kidding me?  In the middle of this heroin EPIDEMIC which is killing people everyday, he claims that marijuana is worse.  Ask anyone who works in the ER, more people come in for aspirin overdoses!  Marijuana has not killed anybody.

Later in the night, after more of his rambling diatribe, he said he opposed the bill because it taxes medical marijuana.  He said, “How can we tax the medicine for sick people?”  So it IS medicine then is it?  Mr. Baker’s campaign funds come from pharmaceutical companies.  There are opposed to anything that might get people off of any drug.  Something that grows for free is terrifying to these people.  Matt Baker is willing to fight for their right to medicate you as they see fit.

He claimed that a building collapsed in Philly and the one person died was “diagnosed with marijuana.”  I’m pretty sure the marijuana didn’t cause the building to fall over, which is what KILLED him.  Not pot.  Baker was just hoping to confuse someone over to his side.

Medical marijuana has strong support in the House for months now.  Our Governor promises to sign it as soon as he gets it.  I believe him.  I don’t believe the House.

We have been lied to so many times.  I was promised that the House would vote by this time LAST YEAR.  I am excited and ready for disappointment.

But what if??  I will watch LIVE.  And I will cry either way.

Deep breath.  Hold it…

I just want to have less seizures.  I hate waking up on the bathroom floor.

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#stillwaiting

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My roots in Pennsylvania run deep.  My ancestors have lived in this state since 1747.  There is a Schlegel Family Cemetery full of the bones of my Schlegel ancestors.  My parents and my in-laws and my nieces and nephews live in Pennsylvania.  I don’t want to live anywhere else.  I enjoy our profusion of water and green.  A sunset isn’t a sunset if it doesn’t set over Lake Erie.  I guess I must even like the snow.  But I am so tired of waiting for compassion.  How long am I supposed to wait?  How many seizures must I have?  I am still waiting…  I am still seizing…

Medical cannabis has been legal in California since 1996.  I was a freshman in college and I didn’t even know I was an epileptic then.  I never even knew I was  having seizures.  All of that would change in 1997 when I woke up in an ER.  I didn’t know cannabis was a treatment for seizures.  But it was one of the first things that came up when I was diagnosed and I started to research my life sentence of epilepsy.  Cannabis is medicine.  Centuries of doctors and patients believe it.

Since medical marijuana was already legal in California, I thought I would be able to get treatment soon enough…  It’s nearly twenty years later and I’m still waiting…  Pennsylvania is sunk, stupid in budget quibbles that don’t get anything done.  Our state budget is 5 months overdue.  The School District of Erie had to vote on what they will do when they run out of money.  The teachers said they would work without pay.

I am still waiting for the House of Representatives to take pity on me and pass Senate Bill 3, Compassionate Use of Medical Cannabis.  It passed the PA Senate, TWICE, but the House pretends to work and refused to do anything.  Oh really, you are writing a “new law” for “passage soon?”  Please reference any of my previous articles addressed to the PA General Assembly over the past two years.  We are still waiting…  I am less and less enthusiastic about my beloved home state everyday.

Everyday is a day I could die.  I’m not being overly dramatic, I’m stating the cold hard facts.  Every year over 50,000 people die from seizures and seizure related injuries.  I fear dying everyday.  I don’t take baths or showers alone.  I’ve read too many obituaries for dead, drowned epileptics for that.  I’ve considered giving up swimming forever.  I used to be on the swim team.  I was even a lifeguard.  I didn’t know I was an epileptic then.  When I went to the wave pool this summer, I told my daughter to stay close.  Not for her safety but for my own.  Everything is dangerous when you lose consciousness and drop to the floor.

Even the things I enjoy scare me.  I love to can; pickles, spaghetti sauce, grape jam, whatever is in season.  Every single time I do, I hope that I don’t have a seizure and scald myself to death.  Boiling hot water can do a LOT of  damage to an unconscious person.  At any given second I could become unconscious.  I envy those of you who don’t know what it’s like.  

Some of my best friends are people I’ve never met.  They are my Epi Friends, epileptics like me.  We live in the same world ruled by seizures and lost time.  We know what it’s like to wake up on the floor.  The Pennsylvania House of Representatives does not know what it’s like…

My advocate “Mama Bears” were in Harrisburg again, rallying and trying to educate the General Assembly.  I wanted to go.  I’m a big fan of a good protest.  But I can’t drive.  My voice will not be heard in the halls of the Capital.  Seizures keep me trapped away like Rapunzel in a tower.  I write letters and send emails and publish blog after blog after blog…  They all plead the same thing~ I just want to have less seizures!  Why can’t I try a natural cure that has been working miracles for centuries!?

I live in the wrong state for my own good.  I don’t want to move.  Yet, everyday I am closer to throwing my hands up in the air and taking up my wagon train and heading west.  I just want medicine.  Why won’t the Pennsylvania General Assembly pull their heads out of the sand and join the 21st century?  Cannabis is medicine.  It is also good business and could give us ample tax funds to fund our schools and balance the budget.  I’m still waiting…..

Don’t make me leave.

still waiting

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