Reason when there
is an accident ~
whether a trip and fall or
the crunch of metal against metal ~ flies out the window and makes no sense.
We can only speculate
and try to make sense of a chaotic situation,
smooths the wrinkles in the timeline. Epilepsy’s seizure activity is the chaos.
Sleep smooths out the wrinkles
while the time line is on pause.
“In all chaos there is a cosmos, in all disorder a secret order..”
~ Carl Jung, psychiatrist
(1875 ~ 1961)
Schedules are not pretty
lines, boxes,
spread sheets and graphs.
They are handy,
but don’t fit into real life.
Two events that occur at
the same time on the same day -
how do I choose?
Will someone be offended
when I cancel one of the duplicates?
When it comes to
seizure activity for any reason,
schedules dissolve instantly
Epilepsy hasn’t read the memo
about ‘a most convenient time’
So we plan, we avoid risks,
we take our meds,
we shape our lives and
never stop believing
in our own strength.
“The key is not to prioritize what’s on your schedule,
but to schedule your priorities.”
~ Stephen Covey, author
(1932 ~ 2012)
Epilepsy walks with me
using the same feet that
carry the rest of my body.
To understand that was not easy.
Epilepsy was in my brain.
Take a pill and seizures will
stop being unpredictable.
Slowly, awkwardly, I learned
that life with epilepsy had
to become a relationship.
A relationship of respect.
Not mutual, but very much
my own responsibility
To understand that was not easy.
Epilepsy is in my brain,
without its own intelligence.
So I am its gate keeper.
“This is your life. You are responsible for it.
You will not live forever. Don’t wait.”
~ Natalie Goldberg
Invisible responses are my own
when no one is around to see
the sudden jerk of my arm,
the blink on and off of consciousness
the drift in a cotton space
that weighs me down
for an hour or a day
with no reason that is visible.
The reason is epilepsy ~
~ tucked neatly inside my brain.
“One bears things because there is no alternative.”
~ C.J.Sansom, Sovereign
 |
| September 2020, Wascana Park |
Conscious or not…..
Health and happiness…
Out on a limb…
Invisible responses…
Coming to terms….
Epilepsy walks…
Schedules are not…
“We don’t get to choose what is true.
We only get to choose what we do about it.”
~ Kami Garci, Beautiful Darkness
Epilepsy has been my friend for 60 years. Not so friendly in the first 10 years, but as I learned more about myself, this condition and the medications that I was taking I found strategies that were respectful of the effects of epilepsy. Being a loner, an introvert, I learned I am just someone who feels more comfortable in small groups. I learned to say no to many things, or always knew when it was time to get quiet. I have not tried to chase epilepsy out of my brain - not possible. I’ve read literature about surgical removal of epilepsy and found that it is more complex than just having surgery. Suffice it to say it’s not like fixing a broken arm or leg.
Today is Purple Day for Epilepsy Awareness. I need to be aware of, and respect, the possibility of seizure activity every day. Now we are quite comfortable with each other. However I know that as the 60 years since diagnosis becomes 61 and onwards, who knows whether our comfort level will change. After all my joints have gotten fussier over the years, why not my brain?
“Start by doing what’s necessary; then do what’ possible;
and suddenly you are doing the impossible.”
~ Francis of Assisi
*Author’s note: 1 in 26 is the most recent statistic about the incidence of individuals with epilepsy.
Epilepsy just a part ~
The order of my life
can shift
with each day but
an order I maintain.
No one can see
my early mornings,
the precious gap in time
friend seizure may show in ~
a blink of my consciousness,
a jerk of my leg,
or the fling of my arm.
I’m grateful that is all
I need worry about ~
others have daily or hourly seizure activity
much more violent and unusual than mine.
Odd behaviours, learning and memory are part
of the repertoire in this strange disease of the brain.
**Brain health is important:
One in 26 people will be diagnosed
with epilepsy in their lifetime.
“Epilepsy won’t stop you; you just need to find a way to work with it.
~ University of Aberdeen,
(From Epilepsy Scotland)
It confuses me when the order of things goes awry. Today sluggishness changed things
without asking me.
Not even a notification,
a whistle or a beep ~
no manners whatsoever.
..the strange work of epilepsy,
or is it long term medication,
or could it be the effects of age, or…. already exhausted,
I slip back into a snooze
all my good intentions for this day
pushed aside by whatever the answer is.
“There is always the question why
and there is always life,
which doesn’t need an answer.”
~ Dejan Stojanović,
poet, essayist, philosopher
Mabel is only five years old. A lovely, happy, chatty child with soft curls whose mother and father love her dearly. It’s the late 1920’s. World War I has passed and World War II is not yet upon England. Mabel’s father, Edward Hamilton, a decorated war hero has been decommissioned with an honourable discharge. When he meets Eleanor, a secretary in the War Office, Edward was there to receive his discharge papers. He leaves her a note as he was leaving inviting her to tea ~ ‘strictly professional’. An idyllic life is to follow. Edward, already involved in England’s Eugenics Society, enlists Eleanor in his research. She comes to believe in it’s precepts ~ “The aim of the eugenics moment is to improve the human population by increasing reproduction of the most desirable characteristics in human beings and suppressing reproduction of the least desirable - for example, inheritable disease, mental retardation, and so forth. - Edward Hamilton.”
One of those so-called inheritable diseases was epilepsy. Louise Fein has written epilepsy as one more character in this story, making an appearance only nine times. Suddenly and for few pages. In each appearance, it tells us that only his control matters. He describes seizures both inside and outside the brain. This character tells us: “……,whatever harm I do, you do far worse.”
The novel opens with Eleanor driving their trap pulled by their pony Dilly to meet her sister Rose at the train. As they come to a stop, Mabel has her first seizure. In an attempt to deny the seriousness of that day, and the reality of her condition, it goes undiagnosed for some time. However, it grows increasingly worse. The story takes a frightening turn. To avoid exposure for Edward’s ‘good name’ in the eugenics movement, and all the research he has done, they turn to a neurologist who recommends hospitalization and ultimately institutionalization. Not uncommon at that time, there were no apparent alternatives, at least in England. Rose, Eleanor’s sister, brings news of an alternative treatment developed at the Mayo Clinic in the U.S. Edward and the neurologist treating Mabel both refuse to even read the information Eleanor has located and researched.
For Mabel, this darling five year old child, she couldn’t know that she would be trapped in the dreadful scheme of care where she was hidden. Or that both her parents had other secrets that bound them. Secrets that are revealed to change their beliefs about eugenics. She also wouldn't know that in the end she would get the care needed from a very unlikely quarter. What she did know was that her parents loved her very much.
Louise Fein has written this novel because of her own trials with her young daughter. She has carefully researched the eugenics movement and the important and historical figures who were pivotal in its formation. Other of her characters in the story both supported and sometimes excused certain behaviours. All were bound by society mores of the time.
Epilepsy has been my own unwanted guest for many, many years. As I read this important story of Mabel and her parents Eleanor and Edward Hamilton, I was in turn infuriated and finally very grateful that I, and many others, have not suffered the same indignities.
“Oh yes, you humans think yourselves above the animals,
with your clever brains and fancy morals;
but really, it’s your inhumanity that sets you apart”
~ Louise Fein, The Hidden Child
Title: The Hidden Child
Author: Louise Fein
Copyright: 2021
Publisher: P.S.™- a trademark of Harper Collins Publishers
Type: Novel
Format: Hardcover
ISBN: 978-0-06-311924-6 (hardcover library edition)
ISBN: 978-0-06-309093-4 (paperback)
ISBN: 978-0-06-320543-7 (international edition)
