Standing still slowly..#2

Riding a flat bottomed boat,

a clear space around me,

I steer a steady course 

on the broad blue river.

Dark rich silt, 

fertilized by ancestors, 

settles to the bottom. 

Limitations bestowed 

by Epilepsy ~ 

as low tree covered shores, 

shape the course of the broad river.

Ancient trees silently line the shores

~ no thought to the river's flow

Has soil been worn away by life?

or strengthened by the steady flow?

Has either happened?

River and trees know not of each other

but their roots support one another ~

A relationship of chance.

My relationship with epilepsy has taught me much.

No matter how deep and strong the currents

of family, friends, career or community run,

I need develop and maintain a healthy relationship

with the river that carries me.

If mistakes and missteps made in this life

have sadly affected that relationship

I pay the price, and 

one or more of you does as well.

If wants and desires pushed me

beyond my limits, 

you and I pay the price.

As this Epilepsy Awareness month 

began with Gratitude

So it will end with Gratitude.

Gratitude for all of you 

    who have roused me from my seizures,

    mending my soul and my body,

    caring for me and accepting me 

as I carry this unusual gift of Epilepsy.

Thank you to all.

“Thanksgiving comes to us out of the prehistoric dimness, universal 

to all ages and all faiths. At whatever straws we must grasp, 

there is always a time for gratitude and new beginnings.”

- J. Robert Moskin

Author's note:  

    Edited Nov. 12, 2023

    Revised August 15, 2024

The elephant in the room...

In the beginning

Elephant was silent....waiting

Rogue elephant: a convulsion

grand Mal seizure

tonic/clonic seizure

petit Mal seizure

absence seizure.

Pretty big hints that Elephant needed 

talking about

taming

accepted as part of me.

As years have passed

Elephant and I have come to an understanding.

Elephant is to be treated with genuine

kindness and respect

Elephant will remain a silent partner in my life,

as long as I feed, water and nurture myself.

Aging or illness may cause our relationship to change.

      

I am not silent with 

family

friends

colleagues.

about Elephant

for it is they - all of you - 

that will have to deal with the rogue Elephant

Elephant is my responsibility

and I do understand.

   

“We decided that it was not good asking ‘what is the 

meaning of life’, because life isn't an answer, life 

is the question, and you, yourself are the answer.”

 Ursula K. LeGuin

Entering a new phase....

Over coffee this afternoon, discussion turned to my blog posts.

Oh, all right, I turned the discussion to my blog posts.

What do I write about today?

Only three more to go!

'Have you considered 

epilepsy and aging?'

I admitted that the thought 

had crossed my mind

but passed on through.

(I haven't really wanted to discuss the 'A' word ~ 

it's getting a little bit too close to home!)

So I did some research.

It seems neurologists are saying that 

our body's ability 

to metabolize medications or 

our long term seizure control 

can alter as we age.

Well, duh!  I knew that ~ as a nurse I provided 

many people with that rationale.

So....I will 

    maintain my routine

    take medications regularly

    faithfully continue yoga and exercise practice

    maintain dental hygiene

    minimize exposure to stressors

    practice acceptance and detachment when things get a bit tense

    make regular visits to my physician

    maintain healthy sleep routines

“Silently one by one in the infinite meadows of heaven,

blossomed the lovely stars, the forget-me-nots of angels.”

~ Henry Wadsworth Longfellow

A darker side of epilepsy

SUDEP:

Sudden 

Unexpected

Death in

Epilepsy

Local involvement 

with the local epilepsy society

brought me unwelcome awareness.

Going blithely along my way,

unaware of SUDEP and then,

finding out about it was rather unsettling.

Another one for the researchers ~

SUDEP's 'exact mechanism' is unknown.

    

Giant phrases like ~

insufficient brainstem serotonergic activity or

peri-ictal cardio-respiratory dysfunction ~ 

both prime suspects in this unsolved case.

In general if epilepsy is 

more severe

less controlled

the risk is greater.

I have lived my live to honour my mother,

who died far too young and far too tragically.

I didn't know that as I was changing 

the way I lived my life ~ epilepsy management ~

that it would truly save my own.

Once more I am grateful ~

this time for today, and 

the many days I have behind me.

SUDEP is most often unwitnessed.

I think of my gentle brother who died alone.

Would he still be alive today if...?

     

“I've never sung anything 

I wasn't ready to sing.” 

- Claudia Schmidt

On the road again...

...just four days before the end of this journey. I have attempted to show you the surrounding landscape as I travel with epilepsy, my ever present, and not entirely welcome, companion.

When the destination is reached on the evening of March 31st, you will go your way, I and my travel companion will continue our journey. My road, and the roads of my fellows with this condition will have a few different potholes in it than those of yours, but they often are merely potholes, and not necessarily caverns to be lost in. Very unfortunately, there are times when such potholes do create devastating and life changing events for some of my fellow travellers.

The sky is most often blue, somedays cloudy, some days clear and open. There may or may not be days full of stormy weather. Making sure I am behind the wheel driving my life allows epilepsy to be only a passenger, rather than a wild, untrained driver (dare I say teenager?).

I only ask that this passenger be as silent and unobtrusive as possible.

I visit my doctor to ensure correct medication. I go to the lab to get blood tests to ensure a 'therapeutic' dose of my medication is present within me. I balance work and play to the best of my ability. And laughter - the best medicine - underscores it all.

“The road of life twists and turns and no two directions are ever 

the same.  Yet our lessons come from the journey, not the destination.”

 ~ Don Williams, Jr.

Author's note: Edited with an amendment below - July 28, 2024

Amendment to the last paragraph of this essay: In my recent visits to my family practitioner and to my neurologist, both lab tests and EEG's have been declined due to my lack of witnessed seizure activity. This only enhanced my questions about the veracity of the initial diagnosis of epilepsy. That being said, I have had significant breakthrough seizures at 10 (still on 2 medications) and 11 years (on no medications) seizure free time that have convinced me otherwise.