Idiopathic..

Now there's a word!

'Idiopathic': the answer. 

'What was the cause?': the question. 

Idiopathic means: no known cause.

Wonderful!

In the midst of nurses training, 

research in my text books verified my dismay ~ 

sure enough ~ no known cause.

Over the years I have wondered:

chicken pox when I was a baby?

a violent headache when I was 5?

the car accident when I was 15?

hormones?

did it run in the family?

Was it any or all of them?

Was it something totally unrelated to any of them?

Have I ever answered the question?

Nope.  

Did I have to learn to live with it?

Yup.

Was there a 

'How to Live with Epilepsy and Have a Successful Life Manual '?

Nope.

Just live your life like every one else does - but mind those annoying seizures!

“Nothing is troublesome that we do willingly.”  

~ Thomas Jefferson

There were stairs to climb.....

Water colour by Jason Ward

Nursing school  
Marriage

Motherhood

Epilepsy

This is the order they arrived in, all crammed in the span of four years.

But... no pressure! Just deal with it.

Diagnosis made.

Prescriptions: two medications.

No time in this life for the seizures that would follow 

unexpected

unannounced.

From infancy onward, my children witnessed my violent seizures.

My very young son brought me my medications.

My husband worried.

My whole family worried.

Close friends were pulled into the fray.

Stubbornly, I shouted to those that cared for me ~ "I'm NOT going to have a seizure!"

Fear of the seizures is not in my memory,

Only embarrassment when waking up 

on the floor,

or on the couch 

with family or friends over me

asking if I was all right

Epilepsy in the form that I have ~ tonic/clonic seizures (what used to be called grand mal) are terrifying because they involve 

unconsciousness

violent convulsing tremors, and 

loud stertorous breathing, 

skin colour dark and dusky as powerful neck muscles cut my airway off.

“It was during the night when she had a seizure 

facedown on the pillow,....she passed on that way. 

That’s a very, very small percentage. It’s more important

 to let people know that epilepsy is not fatal.” 

~ John O’Hurley

It must begin with Gratitude..

Thank you so very much. 

Until this wrong  - that's right - this very morning.

I had not considered exactly who I was grateful to at the beginning of this journey with this neurological condition of epilepsy.

My very first thought was my incredible gratitude to Gary Ward, who, as my very young husband, was beside me when that first grand Mal seizure shook our lives so horrifically. We were 19 and 21, new parents of a darling baby boy. That seizure, and other seizures that were to follow, destroyed or fragmented many family events, social events and memories.

Gary, I never felt shame from you, or that you were embarrassed by me, about the epilepsy that has been my constant companion and has rocked our lives so very badly. You worried about your small family ~ this I know. You did not like your situation in so many ways.

And yet... I felt no shame. This disease still carries a huge stigma in society ~ you gave me the enormous gift of normalcy ~ one of the stalwarts of my life.

“Praise the bridge that carried you over.”

~ George Colman

Addendum re: terminology

  grand Mal seizures are now tonic/clonic or  Generalized Tonic-Clonic (G.T.C.)

Author's note:  Edited January 28, 2024

Courage...

...strolled Detox halls tonight disguised in ordinary clothing, accompanied by quiet conversation and laughter.

“The test we must set for ourselves is not to march alone

but to march in such a way that others will wish to join us.”

~ Hubert Humphrey

Sorting hundreds of pictures..

How many families and friends have flown through my life,

landing and nesting in boxes, albums and envelopes.

Moments in time 

frozen on glossy paper

Squares black and white - surface crackled with age

Colour photos - some yellowed, some bright.

Digital electronic images on computer and CD's

Hairstyles and attire shift with each generation

Weddings and birthdays - the growth of us all

Relationships come and gone.

Picnics and parties

Pets - kitties and dogs

Sorting through family lives past

Bitter sweet glimpses of treasured loved ones gone before 

The only snapshot of today

This little bit of poetry.

“A good snapshot keeps a moment from running away.”

~ Eudora Welty

Rocky steps carved....

.....crookedly in the hill,

a path trod carefully 

amid bird song and sunshine.

“Be present for all things and 

thankful for all things.”

~ Maya Angelou

To Crescendoes, rhythm and chocolate cake..

Early morning dawned 

bright and clear.

Calm and ordered, 

an ordinary day,

Michael Enright kept me company after breakfast

over CBC's radio waves.

After lunch the rhythm of the day shifted.

After a pleasant walk through Beacon Hill Park to the opera house, 

a friend and I joined a large throng of Sunday afternoon opera goers.

We all gathered in a small gallery,flanked on one side with tall windows. 

Context for the opera we later enthusiastically enjoyed was presented with alacrity and humour.

A fascinating introductory historical lecture from Carmen's inception, complete with short piano selections from the play.

One hour later, re-seated and five rows from the orchestra pit at the front of the stage, we chatted, contributing to the conversation that murmured and rippled around us.

In counterpoint, the orchestra tuned and flexed their musical muscles preparing for their supporting role.

Lights dimmed, conversation hushed,

Gold fringed red velvet curtain raised on a busy square

For the next two hours Bizet's initially unheralded story of 

Carmen unfolded with amazing musical support

and soaring voices of tenors and sopranos - arias and choruses - 

themes of love, jealousy and tragedy

The final curtain came down with the violent death of Carmen, 

the beautiful and mercurial heroine.

There was no alternative but end the afternoon with

discussion, fish and chips, coffee and chocolate cake!

“The afternoon knows what the morning never suspected.”

~ Swedish Proverb

I raced this evening...

...to catch the sun being devoured by clouds billowing white and gray

back lit by gold-leaf light 

throwing peach rose tints on distant clouds quickly shifting, changing before my eyes.

Fierce wind whipped my hair, my coat thin and useless against cold blasts.

Up on the bluff, surf and wind played in violent harmony.

A lone white and gray gull held steadily aloft in a wind tunnel playground, suspended in a powerful stretching updraft

wings spread, catching the strongest and best drift of cold moist sea air.

And over the roiling sea, curved brackets of silk
barely weighted down by tiny bodies - man or woman - too small to tell.

When the winds are wild, the playground is open

for those that dare!

"Kites rise highest against the wind - not with it."

~ Winston Churchill