Caution ~ Normalcy Encouraged

Stay out of the bath!

You’ll drown instead of getting clean!

(And you might without caution)

Don’t ride that bike!

You’ll have a seizure and fall into traffic!

(And it can happen without caution)

Stop trying to be normal!

Definitely dangerous for you!

(And it can be without caution)

Not today ~ all cautions in place

Blue water glints and glimmers

Shouts and splashes bounce and echo

Swim and play in watery company

Seizure control ~ stable

Confidence about control and management,

learning about epilepsy

not just any old epilepsy but

individual epilepsy

Cautions and encourages

water sports and hiking

cycling and anything else possible

Safety keys unlock doors

that stigma keeps tightly locked

against normal participation in life.

Why Should I Forget my Past?

Why should I forget my past?
burnished necklaces of joys and fun
banning traumas, tragedy or sorrow
tipping memory like a teeter totter
perched on only one seat 
whether grounded or riding high in the air

Why should I forget my past?
epilepsy of others ~ 

shoved in a closet
hidden in a drawer
swept under the rug
kept up in the attic or 

down a dank basement.

Why should I forget my past?
miss learning from the fancies and foibles of others
seizures happening in the thick of long days
that could have been shortened 
by limits drawn and a change to ‘the rules’

Remembering the past
as memory’s edges blur and fray with time
rounds up any softness and lessons
hard times ~ and lessons ~
to create my present self 
to suggest excited cautions for the future.

To leave everything behind would be 
like coming undressed into the bright light of today
without a road map to trace a way into the future.
Why should I forget my past?

Inside Outside

Inside

neurons fire

synapses open and close,

routinely, regularly

except when they don’t

Inside,

when they don’t ~

neurons fire 

synapses open and close

no evident routine or pattern

electronics short circuit and spark

Outside

an unmannerly twitch or shout

a body flung brutally on the floor

breathing harsh and loud

false or foul words chatter without thought

Inside

where is the world 

who are you

swimming in electronic haze

fear and anxiety bubbling and brewing

Inside

slowly all is calm

neurons fire

synapses open and close

electronics restored to regularity

Outside,

violence calms and sleeps

breathing deep and regular

words struggle to make sense

tears and crying plead forgiveness

Seizure Response Dogs

Seizures of any sort are often unwitnessed, leaving the individual vulnerable to their surroundings and any dangers inherent both in seizure activity and in the environment. Waking up to find oneself alone and confused extends that period of vulnerability.

A companion, a seizure response dog, has become the answer to many who either live independently and/or live active lives in the community. Seizure response dogs are trained to alert the individual at the onset of a seizure and to alert others for assistance.

The Lions Foundation of Canada at www.dogguides.com/seizure.html. offers a service for obtaining and training dogs for this purpose. These dogs are ‘working’ dogs. Just as service dogs for the blind accompany the individual throughout their life, so do seizure response dogs accompany an individual with epilepsy through life. Application can be made at the above link to determine acceptability for this program. An individual needs to have at least three seizures per month as one of the requirements.

Go to Headway at www.vepc.bc.ca to read the Brainwave, their newsletter for information about Headway's epilepsy support programs in Victoria and to learn more about Seizure Response Dogs. You can also go to the link above regarding dog guides for more detailed information.

“Dogs are not our whole life, but they make our lives whole.”

~ Roger Caras

For epilepsy information in Victoria, B.C. contact: BC Epilepsy Society at:  bcepilepsy.com

**Headway's epilepsy and Parkinson's groups are no longer under one umbrella.

Book Review - Americanah by Chimamanda Ngozi Adichi

There is much life outside of epilepsy - in books, movies, walks in the park, family and friends. Here is an aside into just one of those areas. The monthly book club read Americah for a lovely afternoon discussion with friends. Here is my review of Americanah by Chimamanda Ngozi Adichie ~

Beginning in Princeton, New Jersey Ifemelu, a young Nigerian woman, tells us her story. She has taken a short trip to Trenton to have her hair braided before her return to Nigeri. (Hair did play a central role throughout this story.) Her story takes us in flashback and memory to Nigeria where she was raised and educated. She and her first love, Obinze, fell in love and ‘had a plan’ to continue their education abroad and remain together. They and their friends only had an adolescent view and glossy knowledge of America from television and books. The upheavals politically and culturally in their own country split the young couple apart. They believed the separation would probably be short lived, maintaining connections via email and telephone. Ifemelu traveled to America and later, Obinze to London. Their plan slowly but surely unravels as they experience lives as not only immigrants, but as ‘black’ immigrants. Adichie describes the differences of culture, race and class that must be faced through Ifemelu's eyes and heart. Ifemelu’s 13 year journey is the longest as she follows her Aunty Uju to America where she struggles, almost impossibly, to obtain work and to go to school. Relationships and the race issues that accompany them in America are developed, sometimes with great impatience but mostly from an ‘observer’ point of view. While in America, Ifemelu developed a blog entitled Understanding America for the Non-American Black. In her blog posts, definitions, opinions and observations were sprinkled with seriousness, humour and touches of sarcasm. Ifemelu also had a relationship with energetic Curt, blond and white; with serious and good Blaine, black and American. 

Obinze’s plans were halted post 9/11 when he was denied entry to the United States. Going against his upbringing he attempted, illegally and ultimately unsuccessfully, to enter the U.K to advance his university education. In his short time there, he also was exposed to a very different world than where he was raised.  Returning to Nigeria, he became a well respected and wealthy real estate developer. He married contentedly but not satisfactorily. 

Adichie's book traversed much territory besides country to country. Immigration, race, and repatriation intermingled with family and cultural mores and expectations. When the story seemed to grow long, Ifemelu's repatriation to Nigeria renewed the story taking the reader back to the beginning of the story. To find each other again, Ifemelu and Obinze reached through and over all of these obstacles.  All in all, a very good read.

Title: Americanah

Author: Chimamanda Ngozi Adichie

Copyright: 2013

Publisher: Alfred A. Knopf

Type:Hardcover

Format: Novel

ISBN - 978-0-307-27108-1

ISBN - 978-0-307-27108-2

Repost from March 31, 2012 - "The Elephant in the Room"

In the beginning

Elephant was silent....waiting

Rogue elephant ~ a convulsion

grandmal or tonic/clonic seizure

petit mal or absence seizure.

Pretty big hints that Elephant needed 

talking about

taming

accepted as part of me.

As years have passed

Elephant and I have come to an understanding.

Elephant is to be treated with genuine

kindness and respect

Elephant will remain a silent partner in my life,

as long as I feed, water and nurture myself.

Aging or illness may cause our relationship to change.

      

I am not silent with 

family

friends

colleagues.

about Elephant

for it is they - all of you - 

that will have to deal with the rogue Elephant

Elephant is my responsibility

and I do understand.

   

“We decided that it was not good asking ‘what is the 

meaning of life’, because life isn't an answer, life 

is the question, and you, yourself are the answer.”

 Ursula K. LeGuin

Which Condition Needs Attention? Epilepsy or Behavioural Disorders ~ a Discussion

Now here’s a difficult task. Writing about the potential mood shifts that may come with seizure disorders. Aren’t these totally separate issues? I heard a while ago, and cannot remember where or whom told it to me, that the focal point of bipolar disorder (previously known as manic depression) and epilepsy are in the same place in the brain. Depression is also apparently a not uncommon trait for those of us with epilepsy.

The difficult part of this task? Not having a completely reputable research base for this piece of information which has now taken the form of rumour. So I’ll talk about myself. I have experienced mood swings and waves of what could be depression. Neither have debilitated me, although I can get a bit cranky from time to time, with some pretty dramatic pity parties.

So I went to my friend, Google, for my research assistant.

At Medscape (emedicine.medscape.com under neurology), I found a huge list of  neurological mechanisms that suggest a relationship between epilepsy and behavioural disorders. (Not quite my idea of neurobehavioural disorders, but my other research assistant, Wikipedia, provided more definition. Included were disorders like Obsessive Compulsive Disorder, Attention Deficit Disorder, Depression and so many more.) PubMed at www.ncbi.nlm.nih.gob has an abstract entitled “Bipolar disorder and epilepsy: a bidirectonal relation? Neurobiological underpinnings, current hypotheses and future research directions.”

Here is my concern. Neurobehavioural or psychiatric disorders carry their own stigma. In general, society often has a ‘pull up your socks’ attitude for psychiatric disorders. Or with the dual stigma of epilepsy/psychiatric disorders, the attitude may often be sympathy accompanied by a shake of the head - hopelessness. Neither of these responses aid the individual with one or both of these disorders. Nor do they support the caregiver or put any support system in place. (Both conditions can be accompanied by complete denial of their existence until symptoms like the various forms of seizures or unpredictable and erratic moods occur.)

Seizure disorders, especially those dramatic tonic-clonic seizures, unquestionably assume and demand that medication is needed with little if any requirement for behavioural or coping skills; behavioural conditions may merely be tut-tutted or seen as an irritant. 

My personal opinion, is that effective behavioural and/or coping skills are required for any disorder and, as for any disorder, medication may be required.

My hope is that as health care progresses, our society will look at both sides of this process of recovery as much more stabilizing and empowering to all involved.