Reflections

Only one of  thousands carrying the disorder of epilepsy, 

I am one of a fortunate number whose epilepsy management has been mostly successful. Epilepsy is an amorphous set of chronic brain disorders.

Depth and detail defined by numerous factors including: 

    types of seizures, 

    time of day, 

    patterns of seizures,

    causes of seizures,

    triggers that provoke seizures,

    severity of seizures,

    frequency of seizures,

    inherited or acquired,

    ages of onset........

Limited but complex treatments:

          medication ~ one, two or more anticonvulsants,

    or after much diagnosis, tests and trials ~ 

    brain surgery to remove scar tissue.

From pill to operating room ~ a pretty big leap! 

Then history grants us unwelcome stigma,

centuries old beliefs that seizures proved 

demonic possession

curses from the gods

witchcraft.

Our ancestors ~

hidden,

reviled,

shamed,

feared......

  

Today, those of us carrying epilepsy learn about 

triggers,

patterns, 

frequency......

Offsetting old messages of shame with 

present day living...learning that 

epilepsy is the real demon.

  

We moderate and modulate our lives

enabling our participation ~ 

as normally as possible ~ 

and enjoy life with limited intrusion.

We would like to be

moms or dads

friends and family

independent

We would like to mingle in the world.    

“I want by understanding myself, 

to  understand others.”

~ Katherine Mansfield

Author's note: Edited and revised, post script below ~ August 15, 2024

    

    This poem tells a pretty comprehensive story of epilepsy. On a daily basis, it doesn’t feel comprehensive. There will be one issue that happens ~ like my little blips or jumps in the early morning causing me to drop something. My book, my cup of tea or even a little blink of the eyes. Then life moves on, but it reminds me of the neurological nature of epilepsy. All the other details are neither here not there. I just know that I need to stand down. To rest for the next couple of hours. A pyjama morning in other words. SMWard