Energy and fun.....

...are two more qualities needed for a life event such as a diagnosis of epilepsy - or just for plain everyday living.

With energy we can work together to achieve a common goal, and while doing it have a lot of fun!

Doing both, and being together, is absolutely awesome!

Today, it was pulling a plane - 20,000 lbs of plane.

Teams of five, dressed all in purple, 

pulled this 1943 cargo jet 10 feet and were timed.

The best time was 9 seconds!

Some were dressed much wilder than others.

We  - the Purple Power Pullers - just wore funny purple pilot hats

sprouting fluorescent pink mohawk hair-do decor!

Today is Purple Day.

Purple Day, started in 2008 by 8 year old Cassidy Megan, is to raise Epilepsy Awareness for all.

It was not an initiative by one organization but by a child who, because of her own struggles with epilepsy wanted to raise awareness of this condition around the globe. 

Her idea and vision has met with astounding success.

Here in Victoria, participation by the Victoria Epilepsy & Parkinson's Society was via 

a Plane Pulling contest, 

Service dog demonstrations, 

a children's plane pull, 

hamburgers and hotdogs and more.  

It was just plain fun.

“The energy of the mind is the essence of life.”

 - Aristotle

Restoring peace and calm..

I have learned, and firmly believe, that my relationship with epilepsy asks that I find my center, my quiet place, in order to effectively manage the epilepsy that I carry.

Medication management is valuable, however I am 

responsible for 

being aware of, and then

balancing, the highs and lows of my life.

With time and with intent, a move towards 

a center of calm and wholeness is accomplished with a 

daily practice of a yoga, and mild exercise.

****

Rest and Calm

Quiet and spent I sit and think

Beneath still waters I find a link

Between my Soul, my Heart, My Brain.

All of which have felt the drain!

Ducks in gentle waters float

Overhead gulls call out their notes.

Skies of grey are broken by

reflected light from sun that’s shy

In distance far a tiny boat

like my tired self does float

Upon these gentle, quiet waters,

rest the only thing that matters.

The ducks, the gulls, the clouds, the tides

surround my boat upon all sides

And so my soul finds rest and calm

Within this bay I find my balm.

Susan Ward

Mar.2005

“Never be in a hurry; do everything quietly and in a 

calm spirit.  Do not lose your inner peace for anything 

whatsoever, even if your whole world seems upset.”

~ Saint Francis de Sales

Depression and Epilepsy ~ Two Poems

Depression and epilepsy 

    separate or together.
Researchers peer about for a link.

Post-ictal: a phase to follow a seizure ~ an altered state of consciousness lasting a few minutes or much longer ~ for me, up to a day and into the next.

Besides confusion:

Incredibly sad and wildly erratic emotions

Exhibited outwardly?

Definitely occurring inwardly.

~~~~~

The following poem was written many years from my last seizure.

Consistent with my feelings following seizures, I wonder ~  

Do I share such feelings with others?

~~~~~

Reality Check

I have crept up to the edge.

Many years of comfortable struggle,

world looking ordered and right,

listening to words

harmonious, pleasing to the ear.

Looking past facades ~

Willing individuals racing from homes

Entering society’s churning, frightening systems.

Hearing past the Musak

Words and actions out of sync

Awareness of this reality frightens me

Constrictions

Regulations

Responsibilities!!

Rose–coloured glasses slip and fall off.

Images ~ blurry, yet very real,

I feel

paralyzed 

afraid to move

right or left

forward or back

Still afraid of other’s reactions to and around me.

I want to express myself differently than the ‘system’ allows.

How do I feel safe?

How can I believe in my own life?

How can I believe in the lives of others?

I stand still slowly, 

    looking in all directions,

        try to move slowly.

Cautiously estimate my next action.

My patience with the slowness of ‘the process’ 

    wearing thin.

Seeing that I am here

all else 

    out there, 

        over there

untouched by me until

I feel courageous enough to 

touch

decide

act

move forward

No longer at the base of a chaotic storm full of destruction

Now in the Eye where all is calm

movement independent from the chaos of others.

Time to think before acting

Movement in sync with a Higher System.

Susan Ward

Nov.2006

"The soul would have no rainbow 

had the eyes no tears." 

 ~ John Vance Cheney

Author's note: August 30, 2012

Never diagnosed with depression, but working in psychiatry, I have heard about, read about and witnessed the symptoms of depression. Not just sadness, and not only sadness. Listlessness, lack of interest, apathy. Those are the ones that I can relate to in my life. Until I feel angered about something and then my energy come roaring back and I can get on with my life. Another is suicidal ideation: there has been suicide in my family. I have committed to not going there so many times if I feel that black hole looming. I speak it out loud. ‘I’m not going there!” The depression may not completely subside, but suicidal ideation has been swept off the table.

Author's note: Edited and revised August 13, 2024

Chocolate and Butter...

       

Since at least 500 B.C. dietary changes have been posited as a treatment for epilepsy. With the advent of anticonvulsant drugs, diet was discounted and disputed,

and so passed out of favour. Many centuries later, favour was restored, but reservedly so, with a Ketogenic Diet designed by physicians in the 1920's. It was not curative, but supportive. 

I'll not attempt to explain here this complex and medically monitored diet that is used mostly for children and was often found to be effective in aiding control of seizures.

Researchers with their spy glasses consider benefits for adults who carry this disorder. For many years, I have avoided many low-fat products and most no fat products. Eating regularly, moderately and with otherwise balanced meals has proved much more comfortable than low or no fat options. Has it made a difference for epilepsy management in my life? I believe it has, the only proof is in how I feel.

    

(It is good reason to eat chocolate and real butter!)

Feed sparingly and defy the physician.

~ James Howell

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