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Saturday, March 24, 2012

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

Friday, March 23, 2012

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

Thursday, March 22, 2012

Depression and Epilepsy

Depression and epilepsy may be 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,
I see willing individuals racing from micro-systems of homes
Entering society’s churning, frightening macro 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’ will allow me.
How do I do that and feel safe?
How do I do that and be effective in and believe in 
my own life?
How do I do that and be effective in and believe in
the lives of others?
I stand still slowly, looking in all directions,
try to move slowly.
Cautiously estimating my next action.

My patience with the slowness of ‘the process’ wearing thin.

Seeing that I am here
all else is out there, over there
untouched by me until
I feel courageous enough to 
touch
decide
act
move forward

No longer living at the base of a storm where all is chaos and destruction
Now in the Eye where all is calm
movement no longer dependent on the chaos of others.
New 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

Wednesday, March 21, 2012

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,
favor was restored, but reservedly so, with
The Ketogenic Diet 
designed by physicians in the 1920's
not curative,
but supportive.

I'll not attempt to explain here
this complex and medically monitored diet.
Used mostly for children, The Ketogenic Diet is
often 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, 
most no fat products.
Eating regularly, 
moderately and with 
otherwise balanced meals
has been much more comfortable.
Has it made a difference for epilepsy management in my life?
I believe it has ~ but have no proof ~ but how I feel.
    
(It is good reason to eat chocolate and real butter!)

Feed sparingly and defy the physician.
~ James Howell

Tuesday, March 20, 2012

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: an amorphous set of
chronic brain disorders.

Depth and detail defined by 
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!

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