Kids Speak Up!

Greetings from Washington, DC where I am the invited guest of the Epilepsy Foundation of America at their annual Public Policy Institute and Kids Speak Up lobbying event.

The EFA sent my son and me on this trip in the hopes that we would tell our story about epilepsy, and how it has effected our family, to our congressional representatives on the hill.

I did not know what to expect about this event at all, but after the opening evening, I feel excited I came and filled with hope about a million new possibilities for epilepsy treatment. 

I met a mother whose son would have back to back-almost continuous seizures and now he has a Vagus Nerve Stimulator which has almost controlled them.  I met a mother whose daughter has a service dog for seizures.  I met mothers and fathers with grown children living with epilepsy.  I met Joyce Bender, the founder of  Bender Consulting, an organization dedicated to finding jobs for people with disabilities and the host of a radio show on disability, herself a person living with epilepsy.  I’ve met doctors and board members and other teenagers.  I’ve gotten to know two lovely people from Indiana, also part of our delegation.

Everyone hugs me. Everyone makes me cry.  Everyone has a story that is similar to my own and yet different, and for the first time I feel like I am not alone in trying to understand what is happening to my son. There are thousands of us trying to understand what is happening in the brain when seizures take over.

Other than fantastic networking, I attended the keynote session at dinner which was about advances in drug treatment.  I was dreading it.  I pictured a dry speech, full of jargon and numbers of clinical trials.  I imagined the speech equivalent of that tissue paper flyer you get with all your drugs, printed in microscopic font, full of statistics and chemical names.

But what happened was a great doctor explained how clinical trials work, how new medicines are developed, and what are some of the current medicines about to breakthrough and help those of us living with this nightmare.  Here are some of the things I learned:

• There is a revolutionary new drug being developed that is a relative of phenobarbital.  (the granddaddy of them all) The drug, T 2000, was developed and worked miracles and before the developing company had a chance to market T2000, a bigger drug company bought them and it owns the drug and refuses to do anything with it. Why? Not interested in epilepsy, not a big enough market.  So the pharmaceutical company is holding a bunch of molecules hostage. 
• Medical marijuana is a possibility for treatment of epilepsy.  Apparently a pharmaceutical company in the UK has fields of marijuana grown and is ready to start synthesizing canniboids in the treatment of seizures. But we are cautioned, don’t run out to your nearest medical marijuana store and start your child smoking.  The whole marijuana plant may not be very good at all and we should wait for the tests.
• Doctors and drug companies are sorely in need of test subjects of all ages for developing new drugs.  I have the website to sign Grayson up.
• There is a difference between anti-epilepsy and anti-seizure treatments.  Most of what we already do is anti-seizure.  Take the drugs away and the seizures return.  Doctors are starting to look at how to actually eliminate epilepsy and are drawn to the idea that inflammation of the brain is somehow responsible.  These are true anti-epileptic treatments.

The food was fine, the table company interesting, the speakers knew their audience, and I came away with more information in an evening than I feel I have ever gotten after 8 years of meeting with doctors.  So much to know and understand.  (and as a bonus, many of these cool doctors and scientists speaking to us are women!  Science Rocks!)

After the session, I met up with my son who was at a teen session.  He smiled. He wouldn’t say too much, but he did run into one friend from camp and made a new friend from Chicago.   I greeted some adults I knew from Cincinnati as well.  I met a cool doctor who treated a friend of mine from Anchorage and sent that doctor her greetings.  I went to bed smiling.  Perhaps it is the weather, or that I am in the right frame of mind, or perhaps I am realizing how long I have been hungering for companions in the struggle, knowledge beyond the meager crumbs my doctor gives out, and the confusing information available on the web.  We have a day of education left and then a day spent walking all over the capitol and meeting with Indiana legislatures.  Please email me if you are interested in any more of my amateur lobbying adventures.

Amy-PGM

Loop-de-Loops, or Between Me and Thee, or Sincerely, or .....

 

Have you done any creative writing lately?

He asked in his last letter.

What is writing if it isn’t creative?

Sliding and curving and looping across the page

So that maybe even signing a check is creative,

I’ve done enough of that lately—

And to-do lists on every scrap of junk mail within easy reach

And dentist appointments scribbled diagonally

Across too many dates on the calendar.

And letters—handwritten letters:

Dear Phillip, Dear Reta, Dear Mom and Dad,

Dear Cousin Eddie—

The act of writing itself a creative link

Between me and thee and those near at hand.

Beautiful black on white pen and ink drawings

Of  being and doing— day to day musings,

The mundane and the mystical.

A pen stroke here, a pause there—

Laughter, soup, and last Saturday night’s dance

Spilling onto the page in graceful twists and turns—

Intricate connections not meant for the public eye,

The serious and not so serious passersby.

Some aching hearts and insane hopes—

Even absurd one-liners that surely have no meaning

To anyone save the writer and the writee—

Have their cherished place in private collections only:

A cardboard box, a purple folder, a large manila envelope,

A file cabinet with locked drawer.

Or perhaps stuffed in a recycle bin,

Loop-de-loops and fancy scrawl

Soon to be chewed up and

Redistributed as toilet paper—

Words just a memory floating beneath the surface:

Sincerely, Peace, Love you, See you soon,

Spiraling down the toilet—

Creative writing flushed,

Joining God knows what other flotsam and jetsam of life

On the journey toward nirvana. 

Glenda for the Poplar Grove Muse

                

Brand New Day

This Van Morrison song has long been an inspiration to me…

Brand New Day

Songwriter:  Van Morrison

When all the dark clouds roll away

And the sun begins to shine

I see my freedom from across the way

And it comes right in on time

Well it shines so bright and it gives so much light

And it comes from the sky above

Makes me feel so free makes me feel like me

And lights my life with love

Chorus:

And it seems like and it feels like

And it seems like yes it feels like

A brand new day, yeah

A brand new day oh

I was lost and double crossed

With my hands behind my back

I was longtime hurt and thrown in the dirt

Shoved out on the railroad track

I’ve been used, abused and so confused

And I had nowhere to run

But I stood and looked

And my eyes got hooked

On that beautiful morning sun

Chorus

And the sun shines down all on the ground

Yeah and the grass is oh so green

And my heart is still and I’ve got the will

And I don't really feel so mean

Here it comes, here it comes

0 here it comes right now

And it comes right in on time

Well it eases me and it pleases me

And it satisfies my mind

Here it comes right in time, the ferry to the Isle of Mull. Bringing a brand new day into my life. And when I step on that ferry, I know it is taking me home, to where I’m meant to be, maybe where I’ve always been.

As I stand on the upper deck in the misty rain, all the past abuse, hurt and confusion is blown off me. Washing me clean. Then, literally all the dark clouds roll away and the sun comes shining through. And I can see across the way. The gulls are hovering over the deck railing, their raucous calls seem to say, “Come on, come on. This is the right way!”

Everything seems so clear for the first time in my life. I am doing what I need to do; I am going where I need to be. I am showing up for MY life. My life, not someone else’s version of what they think my life should be. I’m writing my script now. Clean slate writing. It’s an adventure. Just show up and see what happens. How will I fit in here working at the Isle of Mull Hotel? Quite well. Will I make friends? Lifetime.

It feels good to be awake and not sleepwalking through life. There is a rhythm to the ferry’s engines. They are playing my tune. My spine is aligning to the pulse in the heart of the ferry.

I stand straighter, ready to meet what may come my way during my three months on Mull. I have had a two-week sojourn in Scotland as I traveled around looking for a job. And it feels like every step along the way has been guided to get md where a job would be waiting for me. The Scots are a mystical people and they appear when you need them the most to help you along your way. They never failed me. And then there were the crows that were always there, cawing when some synchronicity was about to happen.

The ferry is nearing the dock in Craignure where the manageress of the hotel is meeting me to introduce me to the staff and get me settled in my quarters. Outside my window is a rhododendron bush as tall as a house. I will keep a jar of its lush purple blossoms in my room for as long as they bloom in May, the first step to making this room my own.

On this brand new day I’m 49 years old and for the first time in my life I don’t feel like I need to be somewhere else. My gypsy soul has found its home.

Rebekah for The Poplar Grove Muse

She Would Wear Red

SHE WOULD WEAR RED

She would wear red; he had always loved her in red…

She thoughtfully studied her naked reflection in the mirror. Objectively, she confirmed that the hours she had spent in the gym had paid off. Her tall slender body had the taut stomach and firm muscles of a much younger woman.  Pushing the curtain of sleek auburn hair behind her ear, she considered her face. Pale but for the spots burning high on her cheeks, she was a lovely woman. Her skin was smooth. Her deep-set eyes were wide and still a deep blue. She would admit to the laugh lines that were appearing in their corners and the profound sadness that was not normally there.

 Red…definitely red, she thought. She would wear red for him, this one last time.

She stood, elbows akimbo, fisted hands planted firmly on her hips as she surveyed the room. It was awash in a sea of scarlet. It had taken most of the morning but she had finally selected each crimson piece of the outfit she would wear that afternoon.

“ I promise Hon, It will only be for a few days.  I’ll be back in time for our anniversary,” he had said.  

She watched her hand, as it smoothed the scarlet tint onto her cheeks, onto her pale lips, noticing each time the mirror caught the light shards that winked off of her diamond.

  

“Make reservations at our special place and wear that red dress I like so much.” He had said. You know how much I love you in red.”  

She chose a simple suit that hugged her curves and plunged at the neckline.  In her cleavage nestled a teardrop shaped ruby pendent. The ruby pulsed as she breathed and her spiked heel’s staccato sounded in counterpoint as she crossed the room and stared into the mirror. What she saw pleased her.

He was at Morgan’s Rest. One of the last antebellum homes left after the war. The aged red brick was dark against the stark white of the columns. The imposing double doors loomed before her. With an unsteady hand, she pushed the door open and stepped over the threshold. The only sound, her heels tapping as she moved across the marble foyer.   The banister felt cold under her hand as she climbed the curving staircase to the second floor.  

There was a deep stillness in this place; the thick carpet muffled even her footsteps, as she walked delicately down the hall.  Listening, she heard faint music coming from one of the rooms. She walked to the door and taking in a deep breath, turned the doorknob and entered the room.  Here, the windows where draped in heavy curtains. None of the afternoon light penetrated the shadows. The room’s only illumination came from the soft light of two trumpet shaped lamps and the fireplace’s dying embers.

She saw where he lay.  His eyes closed, appearing to be in deep sleep.  She fought back the tears that threatened and walked to where he rested.  Resisting an urge to brush a lock of hair from his forehead, she gazed down at his dear face.  Slowly reaching into her crimson bag she felt for the small revolver.  Grasping the gun she drew it from her purse and gently placed the barrel on the spot of his forehead where the stray lock of hair lay.

At the touch, his eyelids flew open, realization flooding into them. He spoke her name as she squeezed the trigger. The gunshot reverberated in the small room, making her ears ring.  The warm blood spewed out, splashing bright red across the burgundy duvet and the figure that moments ago lay cuddled at his side. She was as exquisite as she knew she would be, her rumpled blond hair swirled around her naked breasts and her soft doe eyes were rapt on the high-heeled figure watching her. 

With one swift movement the scarlet clad arm raised the gun and pulled the trigger, one last time.

THE END

“Your shopping cart is empty.”

“Your shopping cart is empty.”

That was because she had removed five pairs of shoes and a pair of lace-up boots, one item at a time from her shopping cart.  This was like window shopping used to be—but better.  She looked through hundreds of pairs of shoes on the Zappos site and she picked out the most outlandish ones that would suit the imaginary person she was pretending to be that day.

Today she was someone almost like herself, but just a little more daring and a decade or two younger.  Lace up snow boots from Converse All Stars and some summer sandals that sparkled gold and some that were platform clogs.  She remembered that in the mid-70's her cousin Charlotte twisted her ankle falling off her platform shoes.  Hah!  She had had a pair of platforms that she loved back then.  When she wore them, she was nearly 6 feet tall.  But she could not move fast in them.  They created a kind of self-inflicted handicap.

These days when she saw young women teetering along on 5-inch heels, she thought to herself, “You damned idiot!  When you are 60, your back is so going to regret those shoes!”  The other day when she was with her grandchildren at Wonderlab, she saw a little girl who was maybe 8 or 9 years old dressed like a sexy adult.  She was clomping around on high heeled boots.  They made the little girl’s butt stick out and pulled her whole spine out of whack and made her have to almost run to keep from pitching forward off her shoes.  She wondered where that child’s parents were and if she could call CPS on them.  She asked her husband, “Why don’t they just bind her feet?  Christ, those shoes are damaging that child’s feet and back!  What the hell is wrong with people?”  Her husband didn’t bother answering.

This memory made her so bummed that she exited the Zappos site.  Wacky shoes seemed stupid now and the game was ruined.  At least for today.

Veda for the Poplar Grove Muse