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 ~

the sudden lack of independence 

losing a driver’s license

being 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 the types of seizures someone has.

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 grandmother. Her isolation with it saddened me, but also resonated with me throughout many years of my 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 mother 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

When the Power is On

To admit 

what I think I’m guilty of,

even to myself,

curls me into myself and 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.

It can’t be me.

When my lights go out - 

I go out - and 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

Defining Epilepsy

Organized and lined up in parts and pieces

Place names identified, locations mapped.

Analyzed minutely in such very great detail.

Medicated with pharmaceutical preparations.

Diagnosed and labelled.

Set aside until symptoms are displayed.

Where is the soul behind this great wall of data?

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, and taste of blood,

sore joints and muscles misunderstood.

Awakening to those distraught,

my guilty tears were 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 

turning steadily round,

over moments in each day,

tires cover gravelly ground.

Our lives are the frame that we sit upon and

on any life journeys there certainly are found

unpredictable roads with smooth pavement,

potholes, 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