Life changes, epilepsy does not

The first ten years with epilepsy, rocky and uncertain, taught me that I really wasn't geared up for scrabbling through such a rocky terrain and really didn't want much rocky terrain to travel anyway.

The next ten years, while rocky in many other ways, not crowded and crunched by grand Mal seizures, allowed me to awaken hidden dreams for travel with my career.

Opportunity arose - Carpe diem!

My young adult sons began choosing their own paths. So, sadly, but with excitement, I separated from

    family

    roots and

    community

to take a giant leap to another country for career advancement.

Comfortable with managing my epilepsy, I had carefully packed a 3 month supply of pills, found a physician as soon as I settled, and started a wonderful and rewarding adventure. Thirty-nine years old and taking flight like a much younger adult!! What fun! The first time I had lived completely alone! Exciting goals and challenges to achieve.

******

I woke up.

Nubbly carpet met my palms - where am I?

That's odd....I felt like I had a good sleep.

Puzzled I turned my head, 

mmmm.. my tongue is sore.

I have my uniform on!

I'm late for work.....

Leaping to my feet, I drove to work.

My new boss had someone drive me home.

I have no memory of 

~ that drive home,

   ~ who drove me home,

      ~ how long I slept,

        ~ what day I returned to work.

What had I done wrong?!

Who do I turn to?

The sun so bright and the sky so beautifully blue............

Brand new friends, people I barely knew, helped me to sort it all out while I learned more about living with epilepsy.

Taking new directions in life is a good thing.

Letting go too fast of my anchors in 

friends, family, community 

created unneeded stress ~ fear ~ nervousness ~ high elation

setting me up for crisis that I may not be able to manage.

Epilepsy does not respond well to lack of planning.

So I planted my garden in the sun. 

My life grew strong.

"The horror of that moment," the King went on, 

"I shall never forget". 

“You, will though," the Queen said, 

"if you don't make a memorandum of it.”

Lewis Carroll

Author's note: Edited January 28, 2024

Hope and Wisdom...

....sit brightly on my desk, 

glittering beads and shells

spilling around them,

reminding me daily that

when I choose,

they are always mine.

Epilepsy is always with me.

I carry it gently in my brain.

Epilepsy holds not promises of 

riches, fame or good fortune.

Epilepsy's promises to me: 

loud gasping for air, 

broken teeth,

confusion.

Active epilepsy has no hope.

Active epilepsy has no wisdom.

But ~ epilepsy's value is in lessons learned

from churning turmoil 

thrown mercilessly through and around me.

Hope is mine for the taking.

Hope that today will be another seizure free day.

Wisdom is mine to learn.

Wisdom will show me how 

to make and keep promises to myself and others

I may never be rich or famous but 

wisdom and hope show me much good fortune.

My promise to myself each day is that

I will be kind to myself and those around me.

To the best of my ability,

I will not allow epilepsy to visit 

violence, injury or confusion upon me or thee.

"Do what you can, with what you have, where you are."

~ Theodore Roosevelt   

Author's note: Edited January 28, 2024   

Author's post-script: August 15, 2024

“I will not allow epilepsy to visit violence, injury or confusion…..” That’s a very bold statement! There are times when I do not have a choice. What I have learned is that the choices I make can make a difference in how often seizure activity occurs. I am fortunate to have ‘the easiest form of epilepsy to treat’ - a comment from my neurologist in another city. It still has its unpredictability. I may have a time frame for a possible seizure, and know the triggers that create the potential, but I don’t know the actual moment when a seizure may occur. Will it be when I am walking across the floor? When I have a fresh cup of coffee in my hand? When I am washing my face? I can only avoid my triggers and pay attention in the time frame that seizures occur.                                               

To maintain balance day by day......

......minute by minute requires

loving attention to the value of everything and everyone.

When a balance is tipped,

I do not sleep well.

When I do not sleep well,

the balance tips towards an unwanted grand Mal seizure.

There are many ordinary stressors in this world ~

bills that keep finding their way into the mailbox,

insufficient money to pay bills ~ and support play,

inclement weather (yes, even here in Victoria!),

time crunches at work,

extracurricular fun and games with friends.......

Then there are the really big ones ~

sudden violent loss of loved ones,

not once, but twice, three and even four and five times

with all the destruction of swirling tornados 

whipping throughout the families.

My commitment:

     to remain as seizure free as possible ~

shaken on it's foundations with each crashing blow.

How does one restore balance ~ and then maintain it ~

in stagnating pools of grief that threaten to consume?

Honouring the lives gone before by 

living each day as a testament to those loved ones,

caring for myself each day,

remembering the wisdom and courage that each life held

finding the gold in the heaviness of grief.

“I measure every Grief I meet

With narrow, probing Eyes -

I wonder if it weighs like mine -

Or has an easier size.” 

- Emily Dickinson