Just a few more steps before I really learned

Two visions,

grey,

full of terror,

flashed without warning in my mind.......

.....holding one of my sons, preparing to descend

the long flight of basement stairs

on laundry day ~

grand Mal seizure 

flinging my infant 

to the cement ~

devastation or death to my new child and my families.

                       

and then.......

.......aiding an elderly patient to the tiny ld bathroom 

at the very old Regina General Hospital,

kicking away in a grand Mal seizure

crushing frail old bones against

unforgiving ceramic tiled walls,

bringing devastation or death 

to my patient, her family, my colleagues, my employer......

                        

In those moments I knew that to respect and care for 

my family

my patients

my colleagues

and in general my community

choosing self care above all else

would care for others most effectively.

'Attention to detail' ~ a new friend and ally,

the choice that daily shapes my life.

    "When you have to make a choice and don't make it, 
that in itself is a choice"

~ William James

Author's note July 31, 2024:  'grand Mal' seizure has been updated to read 'tonic/clonic' seizure as more medically correct

Propelling me forward in my journey....

....have been family, friends, and acquaintances ~ people I have met along the way have shared valuable life lessons with me. There is only room on this page to share but a few of their stories.

In that first 10 years, my very dear and long deceased brother spoke with me about his struggles with epilepsy ~ the ever growing amount of pills, the seizures, the difficulties. He taught me the 'how not to's'.

I listened to alcoholics recovering from active alcoholism and their  genuine pride in their 'program of recovery'. Stubborn and arrogant, I followed in their recovery footsteps ~ "I'll show them! My disease can 'have a program' too."

I learned humility and that I am also powerless ~ powerless over the fact that I have epilepsy. Humility, and it's daily practice, taught me that I am responsible for each moment of my life.

After a few rough starts, my life became manageable once more.

My young sons, ever there to care for me, when their mother was not willing or able to care for herself, are adults now, knowing that I am willing and able to care for myself ~ and that I do.

For all of you, here on this planet and those gone before.......Thank you for my good health.

"It stands to reason that a change in us will be 

a force for good that will help the entire family."

  ~ How Can I Help My Children?

Author's Note: Edited January 28, 2024

Danger.....

Worked Detox 

yesterday and today ~

0700 - bright and early.

What are the rules?

To bed early

Up early

Ensure a minimum of

two to three hours awake and active before driving to work.

Fill this time with

reading (To Kill A Mockingbird on tap)

writing (30 minutes for journalling and mind mapping)

    yoga (abbreviated but necessary and welcome)

    breakfast

    shower

'Keep it low and slow' a friend reminds me.

Minimize and manage stress throughout the day

Enjoy what clients bring to my life

Appreciate smooth give and take of colleagues

To the pub tonight with colleagues

for a staff going away party

    ginger-ale

    thin crisp sweet potato fries

Why do I need rules?

There is danger of

thin ice easily broken,

crashing through my consciousness and my life

drowning

my car and driver's license,

my nursing license,

my clients and colleagues,

my after hours fun,

invading the consciousness of family and friends without respect.

“A person's best ally is someone who takes care of herself.”

~ Susan Chavez

Trains have schedules....Epilepsy does not

Riding a train requires buying a ticket. There is no ticket to buy for epilepsy, but it’s not a free ride on this train.

Trains respect the differences of the people aboard. Epilepsy does not respect:

    culture, 

    social mores, or 

    political correctness.....

Trains have engines of hardened metal ~ with finite parts that are (relatively) easy to fix. The human brain is the engine that drives our train ~ soft, a mystery to fathom and difficult (sometimes impossible) to fix.

Trains are vehicles providing a service

The human body is the vehicle for epilepsy.

I had to learn ~

to set my schedule.

learn the price of epilepsy

respect my body's limitations.

I had to learn ~

that while not fixable, 

the epilepsy I carry is manageable.

In short ~ 

I had to learn how to drive the train.

"Sometimes it is necessary to reteach a thing it's

 loveliness.....until it flowers again from within"       

~ Galway Kinnell

Author's note: Edited January 28, 2024

Nocturnal Epilepsy and the Role of Sleep

Besides idiopathic: 

no known cause

Nocturnal:

seizures occurring during sleep.

Or ~ within about 20 to 30 minutes after waking up

Or ~ when there was not the

right amount or good quality of sleep.

In the early days of my nursing career, 

when my sons were little guys and 

I was a 20 something mom

I decided that working night shifts 

would be a good thing (remember 

I didn't want to let my epilepsy affect my work)

And it didn't ~ I just couldn't stay awake on a night shift.

So after 6 months of trying, my doctor and I decided that 

night shifts were not a good thing for me.

Poorly managing my epilepsy for about ten years, my seizures continued.

Realization dawned:

anticonvulsant medication was not the be all and end all of this journey.

Strictness with myself ~ super strictness ~ was the action plan.

- Bed by seven in the evening

- Asleep by nine at night

- Up by five in the morning, 

- Work at seven in the morning.

A bit of overkill for a long time but it worked then ~ still works today. Evening shifts starting at three in the afternoon provided the best sleeping hours for many years.

My good fortune in my career? ~ acquiring nursing positions with only day shifts or evening shifts.

“[S]leep is the golden chain that ties health and our bodies together.”

~ Thomas Dekker

Author's note:

February 2024

The descriptions of forms of epilepsy have altered over the years as research has combed through the confusing evidence that neurological disorders presents. Nocturnal epilepsy does not have the same description as I had been given in the ’60’s. However, it is also a mainstay of my epilepsy seizure management. If I’ve been out ‘past my bedtime’ or just watch TV past midnight; or if it is  too hot, too cold……if anything disrupts my sleep, I know that the next morning I need to be very cautious. I found, by trial and error, that night shifts were not for me because of this very disruption of the circadian rhythm and taking an anti epileptic (phenobarb is a sedative) medications at bedtime. Sadly, I was unaware of this side effect of phenobarb at the time.  So whether the label hung on this form of epilepsy is Nocturnal or not, the role of sleep is a critical issue. One I ignore at my peril.

Author's note: August 29, 2024

Retired now, the concerns about shift work no longer affect me. However, maintaining a regular sleep schedule is still important. The plan is now my own and I make the choices about times of sleep - or napping if that fits the bill! And on a daily basis.

A Life Lesson on How to Live with Epilepsy...

Twisting through me in

powerful muscle spasms.

Surfacing from unconsciousness into confusion.

Apologizing and feeling wrong.

Common knowledge says: 

there is an aura before a seizure: 

seeing colours ~

smelling burnt toast ~ 

some kind of a warning giving someone time to lie down.

My warning? Something I can neither see nor smell

lasting only seconds ~ only a vague feeling.

For the first 10 years, 

wavering between 

attempting normalcy, 

taking prescribed medication and 

waiting for the next round of seizures,

I fought against learning what it was.  

Anger and frustration gripped me when told by a loved one:

'you're going to have a seizure!’

Finally straining for common sense and logic, 

I forced myself to ask:

'How can you tell if I’m going to have a seizure?!'

'Your eyes go flat.'

It took years to learn what that meant for me.

I had to learn how my body, my mind and my soul would feel.

It was not a sensation, like smell, sound or touch but

dreamy disconnection from 

everything and everyone around me.

Drifting away.

Lesson:  

Pay attention to how you feel in your gut, in your head, in your heart.

When sounds grow distant, watery - lie down, get safe.

“To become different from what we are, we 

must have some awareness of what we are.”

~ Eric Hoffer

Author's Note: Edited January 28, 2024

Author's Post Script:

February 1, 2024

I was mad. I was always mad when my husband told me what I couldn’t do! On this particular day, because I had heard this too many times before, I stopped, maybe took a deep breath, and asked. “How do you know?!” 

There is little more I can say. Importantly, when I was told my eyes go flat, it stopped me in my tracks. I didn’t know what to do with that information, even though I knew my husband was right. Yes I was angry at him for knowing, but fighting back had never helped. As matter of fact, it possibly had put me over the seizure threshold. Those few words gave me something to hang on to, even though I didn’t know how to use them. I don’t know when I finally figured it out, but I learned that when I felt as though I were being drawn back from reality, that was my sign. And probably when my focus changed.