Epilepsy is Invisible

Epilepsy, 

chronic 

neurological

invisible

not really there?

as long as it is controlled

Should we hide from the public eye ~ 

just in case.....

Epilepsy

caused by anything 

that affects brain function including

scar tissue

head trauma

altered brain chemistry 

idiopathic: no known cause!  

no known cause 

no known cure

the individual?

vulnerable, powerless and alone.  

Cures - nothing 

broad based

standard

across the board.

Conventional medication the only solution?

‘you’ll have to learn to live with it.’??

but only part of a solution

many of us with epilepsy 

do learn to live with it

as do our families.

Living with epilepsy means

knowing ~

what kind of seizures 

how predictable they are - or not

who will be there to help us with 

recovery from seizures ~

letting us know 

where we are

what happened

when it happened

what spaces in time to live seizure free?

an hour?  

a day? 

a couple of weeks? 

More? 

Less?

so the control epilepsy holds

is a small as possible.

Living with epilepsy means

medication once or many times a day

one or more medications

surgery

recovering from surgery

so the control epilepsy holds 

in our lives is minimized.

And in all this, 

we wish to share and participate with

family, 

friends, 

employment, 

community

“Men think epilepsy divine, merely because they do not understand it...

We will one day understand what causes it, and then cease to call it 

divine.  And so it is with everything in the universe.”

~ Hippocrates

BC Epilepsy Society

Phone: (604) 875-6704

Phone: (778) 533-0790 (Victoria Office)

No longer active: 

Victoria Epilepsy and Parkinson’s Society

Author's note: Edited July 27, 2024

Storyteller ~ 2

Storyteller

Sitting ‘neath a willow tree, Storyteller by her side

a curly headed little girl said 

‘Please, tell your stories to me, I have a list of five.’

The storyteller took the list, laid it on his lap.

Picking up the list, he rubbed his chin and, 
pushing back his cap, 
out loud he read the short, sweet list

Pain

Hope

Love

Joy

Laughter

A smile came out upon his face, furrows creased his brow.

Storyteller said to the child ‘Each one can have their place,

but all of these are in one story and all in each one’s life. 

For each of these will scattered be, throughout good luck or strife.’

Each one’s story will be different for how the story’s writ.

It’s how each player plays their role ~ with wisdom, fight or grit.

“We cannot change the cards we are dealt, just how we play the hand.”

~ Randy Pausch, The Last Lecture

A Letter to Sonia

Sonia was slight of physical stature, maybe only about 5’ 2”. In her late thirties, she looked older in her eyes and inside her skin. She often spoke of the need for gratitude. She talked about her pay cheque from the Thrift Store she was managing. Holding up her tiny hands, spreading them apart about six inches, she said - ‘When I get my cheque on payday and see the amount on it, it is so, very, very tiny! I know that I could make much more money where I have come from - and I did.’ She went on to say that she would not trade her sobriety to have that kind of money again, and was grateful for that tiny cheque.

This is my Letter to Sonia ~

Hi Sonia,

It’s been a long, long time since we’ve spoken.  However, you have often been in my thoughts as I go about my work at Detox. How any of you with active addictions, especially those who work the streets, survived as long as you did in such a violent world, continues to amaze me.  Anyway Sonia, this letter is to ask for your wisdom to help those clients that are living the painful life that you knew all too well; walking on the very dangerous paths that you walked.

There are so many beautiful people with good hearts squeezed far too tightly by the lives that they live, behaviour that is unacceptable and frightening. You know that they literally fight to stay alive - not just fighting active addiction, but demons of so much more than the lure of chemicals long after the party is over.  There are so many broken bodies, hearts and minds that need help to pick up the pieces that are strewn around them.  You were one of those people. You became, with much hard work, clean and sober for several years until your early death. For the short time I knew you, I watched you grow comfortable in sobriety and with a sober world that had been so foreign to you.

More of your wisdom that I recall is your unbending belief that we are each responsible for our own behaviour - and if any behaviour was because of intoxication, then an individual was still responsible for the results of picking up that drink or drug of the next round.

I know that you were devout in your beliefs, and that if there’s an AA convention near you, you will be there.  Many people from all areas of my life, some mutual acquaintances of ours, may be there as well.

Please pass on my good wishes to each of them for their daily un-sugarcoated wisdom

Blessings and thank you for your wisdom,

Susan

“He is a wise man who does not grieve for the things 

which he has not, but rejoices for those which he has.”

~ Epictetus

Sandman Sleepy Eyes

I need to go to bed, though

the clock disagrees.

It ticks and it tocks, 

yet insists it's not too late.

I need to go to sleep

How can I tell?

My eyes are gritty ~

In storybook childspeak ~ the Sandman’s here.

I need to go to bed and fall asleep

but there’s no one to tell me I should.

I could stay up as long as I want to. So there.

But ~ the Sandman really has arrived.

“There are no facts, only interpretations.”

~ Friedrich Nietzsche

I Long to Get out In the Garden

I long to get out in the garden

to plant a row of beans,

plan where hills of potatoes should go

in front of a trellis of peas?

I long to get out in the garden,

with a fork, a spade and a rake

Toss out the weeds, put in the seeds

in rows that my hoe will make.

I long to get out in the garden

with sun shining hot on my face

or a thunder roll from billowed clouds

bringing rain and lightning through space.

I long to get out in the garden,

my hands in rich black soil.

At the end of the day in the garden,

I’m satisfied with all of my toil.

“Gardening is about enjoying the smell of things growing 

in the soil, getting dirty without feeling guilty, and generally 

taking time to soak up a little peace and serenity.”

~ Lindley Karstens, noproblemgarden.com

A Normal Cycle

Normal - a very good feeling.

That’s how I feel today

Listening to interviews with young women who finally feel normal in their lives today.

This normalcy came at a high price ~

years of undiagnosed psychiatric disorders,

struggles finding ‘the right medicine’,

active addiction,

difficulties with mental health care systems ~ 'we don't have the right program for your daughter'.

well intentioned opinions ~ ‘it’s only teenage problems’

self-mutilation

families fragmented in their ability to advocate for their loved one.

For one girl ~ 'at first, it was difficult to deal with feeling normal',

so used to riding the roller coaster of emotional ups and downs.

I am so pleased that I feel normal today - 

but a week of setting myself aside from the world

seems so miniscule beside the devastation of

untreated, 

unrecognized mental illness.

Normal, for me, is feeling like I’m home and healthy again.

I’ve been in my own home this last week,

but my health had taken a short holiday.

“Normal is nothing more than a cycle on a washing machine.”

~ Whoopi Goldberg

Is It Spring Yet?

crisp afternoon sunshine

familiar aroma of manure

tender green spikes of incognito bulbs peek above nature's drifts of rotting brown/black leaves

white snowdrops, the bravest blooms, step shyly forward in colder, less sheltered soils.

bright orange calendula against warming bricks, throw down their colourful challenge.

“Spring is sooner recognized by plant than by men,”

~ Chinese Proverb