#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

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