Epilepsy Adjustments

Pharmaceuticals ~
Tools to trade unruly movement
for some predictability

A Momentary Lapse

Epilepsy shocks

with undulating rhythm.

Brain control jagged.

Right vs Left

Left handed when newly awake
Right handed in two hours time

Right arm and right hand may jump and release.
Left hand as back up prevents accidents!

Epilepsy’s effects but a flip away 
when brain shifts from sleep unto wake

Right handed ease for the rest of the day
Next day's dawning, left hand picks up the slack

Never the Whole Story

A sentence
A paragraph
A page
but never the whole story

One seizure
Two seizures
Status Epilepticus
but never the whole story

A day
A week
A month or a  year
but never the whole story

We see how a story unfolds
when stories are lived side by side
Only when all the story’s been told
might we know beginning, middle and end.

So How Are We Different?

Life with chronic disease

life with minor cuts and bruises 

from regular, day to day bumps, trips or falls.

Even with a condition well controlled,

we still have ordinary trips, fallls or bumps.

Some folks - too many - have conditions so brittle that very little in their life is ordinary.

Stop signs, caution signs and yield signs decorating walls, floors and ceilings

are clothes we wear inside and outside of our homes.

But what makes us different?

Regular discussion and planning, sometimes daily, depends on

• control and management
• doctors’ appoinments, emergency rooms, 
• wary of time frames, noise and light levels
• in general, rule changes to societal norms

But are we really that different?

Inside our hearts and minds,

desires and hopes, dreams and wishes, goals and aspirations.

For some, all of these things can be pursued and often won.

For the individual with brittle epilepsy, 

heavily treated with medication or surgery,

hopes, dreams and aspirations become

shunted or shattered, dulled and many times forgotten

in the work for daily life.

But don't similarities trump differences?

Each soul touched lightly or heavily

by the calamities of epilepsy

still need shelter and food,

love, belonging, and self actualization.

Abram Maslow’s Hierarchy of Needs does not identify health conditions!

So how are we different?

Only in expression of our basic neurology

our brain function

gifts that cannot be re-gifted but

must be accepted,

along with ordinary bumps and bruises, trips and falls.

I Was Going to Speak

I was going to speak tonight
to read aloud to strangers
read aloud a poem penned about past memories of epilepsy

I wondered
what will these strangers think
when they hear the word ‘epilepsy’

will fear bubble beneath polite surfaces, stirring violent images?
will curiosity ripple about what this condition is about?
will sympathy push meaning aside?
will the narrow laser of judgment excise humanity from my soul?
will understanding accept without knowing?

Fortunately most of these things didn’t happen
only one other person was present 
My poem was read with no reaction
Are all these questions phantom worries floating inside my head?
Are they realities for some?

Understanding goes two ways
it’s not all about me......
my own acceptance of how others feel is as important

What's in A Name? ~ 1

Hi! 

Let me introduce myself. 

My name is Epilepsy

I live around the corner

down the street

across the city

throughout the province and the nation

with cousins around the planet!

Oh ~ no that’s wrong.

Epilepsy is not my name.

My name is Susan Marlene

this is what I learned about my name:

From Writer’s Group March  7, 2014

‘Two given names which each sound rather bland, have history from Hebrew times. Susan, from Middle Egyptian means Lotus flower. It’s meaning continues with the definition ‘cheery, joyful and bright!’ (The ‘bright’ part has been excluded for today.)

Marlene, reminiscent of Marlene Dietrich, in my mind has always been smoky and bluesy. But not to be. Marlene, purports to be a combination name ~ ‘Mar’ from Mary or Maria; ‘lene’ from Magdalene. Marlene is also said to mean ‘star of the sea’ and in Hebrew ‘high tower’. My reference from www.sheknows.com also says that individuals with the name Marlene enjoy change, adventure and excitement. (Marlenes can also be untidy.)’

So all in all, my names are not at all bland!
Exotic, interesting and really quite grand.

Epilepsy is merely a diagnosis.

My name is Susan ~ what's yours?