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Saturday, March 15, 2014

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.

Friday, March 14, 2014

Why Should I Forget my Past?

Why should I forget my past?
burnishing 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 
with lines drawn and changing ‘the rules’

Remembering the past
as memory’s edges blur and fray with time
rounds up any softness and lessons
hardtimes ~ 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 tracing a way into the future.
Why should I forget my past?

Thursday, March 13, 2014

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

Wednesday, March 12, 2014

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. 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 newletter 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

**Headway's epilepsy and Parkinson's groups are no longer under one umbrella.
For epilepsy information in Victoria, B.C. contact: BC Epilepsy Society at:  bcepilepsy.com

Tuesday, March 11, 2014

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.

Monday, March 10, 2014

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

Sunday, March 9, 2014

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 these disorders. Nor do they support the caregiver or 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.