Wednesday, April 24, 2013

Graceful Negligence

As a young person, I spent a lot of time in abandoned buildings poking around. I considered driving off to see collapsing barns and old houses an afternoon well spent.  I still do.  I am curious to see what happens when structures are left untouched, when organic change reclaims them.  I love the comingling dialogue between human and nature.  I am drawn to images of vitality that speak through the process of change and decay.  This poem is a work in progress exploring the potential of leaving things untouched in order to understand how life works.

Graceful Negligence

Living amid the wonder of
architectural errors
in houses built on shifting
I smile.

With time the kitchen
drifts into a small
one I can roll a marble down.

I love this,
unexplained negligence,
the what if
time passes and….

Of course the times goes,
who would have thought
any different?                                          

But what if…
what if
We had the patience to allow
graceful negligence to
settle in,
And the heart
to bear witness?

Imagine feral patterns
reclaiming their orgin,
imprinting our memory-
star seeds of
unmeddled affairs.

Allison Distler

Monday, April 22, 2013

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.


Monday, April 15, 2013

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


Sunday, April 7, 2013

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

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
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