Comfortably Independent

I’ve been reading more blogs tonight at Epilepsy.com.  So many 

folks out there that have so many different manifestations of this 

condition!  Some concerns that many express are

- sudden lack of independence 

- losing a driver’s license

- confined to home and neighbourhood, 

- employment concerns or a lack of upward 

movement in employment, 

- learning disabilities, especially for the young, 

        despite normal or higher intelligence.

- being confronted by different attitudes that 

        shift based on types of seizures

I am so fortunate.  At different times, I have shared degrees of all of these concerns, but presently am comfortably independent, employed in a job I love and am able to learn effectively.  Any negative or judgmental attitudes of others, while they may be annoying, are in fact their attitudes.  I am more often presented with questions about my epilepsy or discussion about beliefs about epilepsy.

“Here is the rule to remember in the future 

when anything tempts you to be bitter:

not, ‘This is a misfortune’ but 

‘To bear this worthily is good fortune.’”

~ Marcus Aurelius

Respect for Health

I was just reading someone else’s blog about her experience with epilepsy. She said that she had only talked about her epilepsy with two other people besides her doctor - her mother and her grandmother. 

Her isolation with it saddened me, but also resonated with me throughout my many years with epilepsy.

In a brief narrative, the author had outlined her fears - 

    fear of epilepsy itself

    fear of a medical system that may not pay for her condition

    fear of the dementia that can come with her form of epilepsy 

    fear of other side effects from the medication she was taking

    fear of how her children would handle seeing their mom have a seizure.

She had been seizure free for three years at that writing in 2008.

I wonder how she and her family have fared since then.

I am grateful for the healthy respect that I developed for not just epilepsy, but my general health. As a nurse, it has usually been easy for me to teach others about health care but not so easy to look in the mirror and teach myself. As a mother, although it took many years to learn what behaviours to change, it was suddenly easy to begin paying attention to my personal health care.

“Respect your efforts, respect yourself.  Self-respect leads to discipline.

When you have both firmly under your belt, that’s real power.

~ Clint Eastwood

Author's note: edited July 25, 2024

When the Power is On

To admit 

what I think I’m guilty of,

even to myself,

curls me into myself

sends me away from healthy thought and action.

To admit 

what I think I should be ashamed of,

especially to myself,

ties me in knots
sends me away 

from healing behaviour.

~~~~~

Powerless ~

but only in active epilepsy.

when my lights go out - 

I go out ~

I am powerless over everything.

~~~~~

When my lights are on

I have the power 

to learn 

to be present.

aware of my self,

my surroundings,

clear about who I am and 

who I am capable of being.

I am only powerless over the fact of epilepsy.

“What we actually learn, from any given set of circumstances, determines 

whether we become increasingly powerless or more powerful.”

~ Blaine Lee

Author's note:  edited July 25, 2024

Defining Epilepsy

Organized

lined up in parts and pieces

Place names identified, 

locations mapped.

Analyzed minutely

Medicated 

Diagnosed

labelled.

Set aside until 

symptoms are displayed.

Where is the soul?

There is one, you know.

“Soul is to be found in the vicinity of taboo.”

~Thomas Moore, Care of the Soul: 

Guide for Cultivating Depth and Sacredness in Everyday Life

Awakening ~ 1

Written words 

cannot describe

seizures that grow 

from deep inside

Sudden dark 

taste of blood,

sore joints

muscles misunderstood.

Awakening to the distraught,

my guilty tears overwrought.

Written words 

cannot describe

shameful feelings 

deep inside.

“The worst guilt is to accept an unearned guilt.”

~ Ayn Rand

Riding with Stress

Life stressors like bicycle wheels, turn steadily round, over moments in each day, tires over gravel.

Our lives, the frame we sit on.

Any life journeys have unpredictable roads ~ smoothed, potholed, sharp rocks, or soft mounds.

Daily, we practice skills to survive

until balance in resting and riding is sound.

If we do all the work, it can help us avoid

active epilepsy’s often unpredictable wounds.

“It is not the strongest or the most intelligent who will survive

but those who can best manage change.”

~ Charles Darwin

Wayward Words

I’m at my desk, the page is bare.

No reason nor rhyme for words to appear.

I’ve asked them all: ‘Come out and play’

They’ve said to me: 'Some other day.’

Epilepsy sits and never leaves

but words have flown upon the breeze!

“Our words have wings, but fly not where we would.”

~ George Eliot