Book Review: Breathing Underwater by Abbey Lee Nash

Nature walks were not exactly what 17 year old Tess wanted to do. She wanted to win at the National Swim Competition and go on to University on an athletic scholarship. Her swimming had been her life since she was a child. Every summer she was lifeguard at the local pool. She and her best friend Mac looked forward to a great summer and their swim competition. Tess, Mac and another friend Rachel were on same swim team. 

Their summer came to abrupt and very frightening halt at their swim practice. Tess had a seizure in the water and if Rachel hadn’t kept her friend’s head up, Tess would have drowned. Tess does’t remember any of that, only waking up in the hospital to a doctor telling her she probably had epilepsy. There had been no warnings that anything could have been wrong. All she could think about was the Nationals and her scholarship. She wanted to just shake it off and get back in the pool where she could feel the water and her strength. After an appointment with a neurologist, her driver’s license was held and she was told to only swim with certain restrictions. Restrictions that would point out to everyone that something was wrong with her:  A pink bathing cap, swimming on the outside lane that was usually reserved for the slowest swimmers, and a second lifeguard to make sure she was safe. She thought all of it was ridiculous, bent to everyone’s will. Instead of lifeguarding she had to work at the Sugar Shack snack bar. Her parents were of two minds. Her father, a retired football coach just wanted her to get back to training for the Nationals, her mother wanted her daughter to be careful and listen to the doctors. That is until she had a second seizure after going out jogging on her own one morning. That’s when reality was made clear to all of them.

The only benefit was the replacement lifeguard at the pool. Charlie was tall, unruly black hair, with soft green eyes and so good looking. But Tess tried to avoid him at first. But Charlie made sure that she didn’t. They struck up a friendship. Turns out he was also very kind even once he knew about this new diagnosis. He didn’t like the usual parties, went jogging early in the morning and loved pancakes. 

This book is an easy read and is written for the Young Adult readers. Abby Lee Nash was painted a charming and frightening picture of Tess’s life struggling with this life changing diagnosis, the doctor’s visits and tests. In this story, the author has provided the explanations Tess and her family needed about epilepsy, tests and restrictions.

‘I’m a swimmer. I don’t know how to be anything else.”

~ Abbey Lee Nash, Breathing Underwater

Title: Breathing Underwater

Author: Abbey Lee Nash

Copyright: 2024

Publisher: Holiday House (children’s publisher)

Format: Fiction

Type: Young Adult (YA)

ISBN: 978-0-8234-5386-3

Purple Day for Epilepsy Awareness ~ 2

Epilepsy ~ a chronic brain condition, not the purple bruise on a face, but a purple flower in bloom

taking life by the hand between seizures

unwelcome sounds 

~ rude or annoying, 

un-choreographed movements: 

  ~ convulsions that steal consciousness

    ~ momentary lapses that no one notices as odd

or behaviours that defy logic.

any or all and maybe more ~

when convulsions of any magnitude 

defy medication, surgery and care, 

the grip on living can become tenuous, 

 quality of life wilts

   sometimes lost ~

 lives given to others to manage

In the space between seizures

  Family participation is challenged and will adapt

    Education is challenged but goes on

      Employment is challenged but continues

        Community activity is challenged but develops

Health and happiness can be a daily challenge.

        

Epilepsy ~ a chronic brain condition

not the purple bruise on a face

but a purple flower in bloom.

“It appears to me to be no more divine nor more sacred than 

other diseases, but has a natural cause….like other affections.”

~  Hippocrates, 

On the Sacred Disease (written 2400 years ago)

Author’s note: 

Epilepsy is no longer considered a brain disease, but is a brain condition. There are multiple causes, including stroke, brain trauma, any neurological brain damage and one form termed Idiopathic, meaning no known cause. Presently treatments are wide ranging - many different medications used depending on the individual, brain surgery if it is deemed appropriate, life style changes: any or all of them.

Epilepsy Awareness Day/Purple Day for Epilepsy - Re-post from March 26, 2022

One an hour or more, a couple a week, maybe once every few weeks or months - who knows when?! or managed successfully with medication and/or surgery - or not.

Living on the alert

Getting up in the morning

Going to bed at night

Taking medication daily

Being aware of surroundings

How rested you are - or aren’t.

All kinds of seizures!

Little ones, big ones ~

not all falling down ones

Each one knocks a brain sideways

vibrating it for minutes, hours, days or more after the seizure has vanished.

"It's more than just having seizures."

~ Lindsey Hess

Purple Day established in 2008 by Cassidy Megan of Nova Scotia

**Some minor updates to this repost, but a seizure's still a seizure.

Epilepsy Awareness Day/Purple Day for Epilepsy

One an hour - or more

A couple a week

Maybe once every few weeks

or months - who knows when!

or managed successfully with

only medication or surgery.

Living on the alert

Getting up in the morning

Going to bed at night

Taking medication daily

Being aware of surroundings

How rested you are - or aren’t.

All kinds of seizures!

Little ones, big ones ~

not all falling down ones

Each one knocks a brain sideways

vibrating it for minutes, hours, days or more

after the seizure has vanished.

“It’s more than just having seizures.”

~ Lindsey Hess

 Purple Day established in 2008 by Cassidy Megan of Nova Scotia

Many Shades

Epilepsy ripples through humanity. A pretty basic statement. How then do I fit that into my own story? I am but one of many with epilepsy and our stories are all different. Not only the details but the type of epilepsy we each own. The extent of how our daily lives are affected. The only commonality we each have is that epilepsy is an electrical brain disorder with many causes, and some diagnoses have no known cause. My epilepsy is the ‘no known cause’ kind. My story then is an answer to the question: What besides medication can I do to support my control of some of my life? Simple: Stress management, take my medications as ordered, realize and dampen triggers to my seizures and regular sleep hygiene. My story with epilepsy management is much greater than the disorder or just taking medications. Some people's stories may be similar to my own. The stories of others are much more detailed and frightening than mine. Unmanageable and atypical seizures, multiple medications, inability for regular or meaningful employment, surgical treatments, drastic mood changes, suicidal ideation, marital problems and learning disabilities. Too much drama? Scary? For those that live with it, it definitely is.

Today - March 26th, is an annual day for Epilepsy Awareness. Each province and state has an Epilepsy Organization. The Canadian Epilepsy Alliance is Canada’s national organization for epilepsy information.

“The human spirit is stronger than anything that can happen to it.”

~ George C. Scott

Resource:  https://www.canadianepilepsyalliance.org

Essay on the Chronic Brain Disorder of Epilepsy

As I edited, revised and entered on my laptop numerous writings about my experience with epilepsy, I came across this Essay. Once finished with revisions I realized that it had never been one of my blog posts. There were certain things missing that are on all my post copies, but I checked anyway. So today, I’m sharing this with you. I think my original goal was to go more in depth about this uninvited guest. As I wrote it several years ago but never completed it, I may not have achieved my original goal. (I did learn today that epilepsy is a brain disorder not a disease.)

Epilepsy – idiopathic epilepsy no less! As a 19 year old and a new mom in nurses training this could not have been a worse piece of news. My oldest brother had epilepsy. But me? I had watched his first seizure, a full tonic-clonic seizure, one Christmas morning a very long time ago. It was really quite frightening in its sudden violence. I didn’t know that, in just a few more years, it would be me that frightened others.

How has that impacted my life? In the long run? Very favourably. My good fortune has been that I have not experienced a severely brittle form of epilepsy. However, the first ten years of my life with this uninvited guest were frightening and confusing to me and my family resulting in many anxious confrontations over whether or not I had taken my pills. My husband left for work many days worried that his children had been left in the care of someone who did not appear responsible for her own care. Our children were in the middle of our confrontations. It took me many years to get past my stubbornness and recognize that if I didn’t take care of myself, my children were potentially in danger when in my care.

Epilepsy, a chronic neurological brain disorder, is caused by a variety of things including scar tissue and altered brain chemistry. A more confusing form is epilepsy known as idiopathic, meaning no known cause! Where there is no known cause, there is is no known cure, leaving me in an entirely vulnerable position. I felt powerless and alone. Conventional medication seemed the only solution, and was the only part of a solution that I recall being presented to me.

A solution did present itself when listening to those successfully active in Twelve Step programs practiced by those with addictions. Addictions you say! The recovery principles embodied in the Twelve Step programs are a set of guidelines that ultimately promote healthy living, just as a diabetic diet is a healthy diet for any human being!

Should I still go to my doctor then? Of course. If, like me, you require a level of pharmacotherapy for seizure control, a physician is the appropriate therapist. As that therapist, his/her job is to prescribe, provide education about the medication and encourage you to follow the directions given you. Those directions may in fact recommend lifestyle changes.There may also be health changes of any kind, including one's epilepsy status, that require further medical management by a physician.

“The question is not how to get cured, but how to live.”

~ Joseph Conrad

Every Day

Every day I comb my hair, I wash my face, I take my pills…. Dilantin: little white capsules with an orange band

Once upon a time taking pills every day was an annoyance 

~ after I had finally decided to make it part of my life

After annoyance passed taking my pills was like combing my hair, washing my face ~ I brushed aside memories of 

the flatness before a seizure

the confusion after a seizure

the shame of having a seizure because

of forgetting to take little white capsules with the orange band.

of forgetting that triggers for a seizure are all around me

of believing that seizures won’t happen again

today those memories are as distant as my annoyance at taking

the little white capsules with the orange band every single day

Epilepsy is a part of me.

“Self-care is how you take your power back.”

~ Lalah, Delia

Firestorm in Two Parts

Dense, abundant greenery spreads roots deep, in soil tossed, turned and packed by ancestors and ages,

massive oaks and scrubbly brush intertwined with edges of tiny flowers and frail wild orchids, ferns pluming into 

underbrush, nestled proudly beside the fallen, along paths made by 

communities of animals and man

all growing up to the sun that forever

spreads through blue skies, filters of thinning clouds,

banks of thickening, billowing dark clouds

white streaks hinting at electric storms to come with wild winds, 

slashing rain unable to quench wild fires that leap and burn.

                             ~~~~~

Epilepsy, unchecked and unnoticed, 

brings it’s own firestorm with little warning

electric misfires deep in soft brain jelly.

Hot spots never extinguished

merely dimmed down, dumbed down

by medication and meditation

by sleeping and waking 

by stepping forward and settling back

with time that grows ever longer

Epilepsy burrows under 

the giant ancestors, the tiniest flowers,

the most gracious ferns

to erupt in a firestorm of sparks, flames, and

destruction ~ Epilepsy spreads like wildfire, 

but only if fuel is there to burn ~ Where is the fuel?

What is the fuel? Could only I find what fuelled my epilepsy?

Was that seed of destruction my fault?

Were the seizures that boomed and cracked my fault?

NO! 

Merely an extra special responsibility

mine to mold, to develop and to refine

in firm kindness and genuine respect of

my life with this unwelcome guest.

Epilepsy is the seed that spreads weeds unless

my health and my ego is taught how to behave

Even so there are some whose epilepsy 

is more unruly

more unpredictable

more fiery with hot spots so hot

and hard to handle despite keeping 

faith with the rigours of health and happiness.

 ~ I have grown unfamiliar with

unpredictability every day.

Now I only know my epilepsy as 

dimmed down and dumbed down

so I can live and can love without fear.

“I can hear your whisper and distant mutter. 

I can smell your damp on the breeze and 

in the sky I see the halo of your violence. 

Storm I know you are coming.”

~ Robert Fanney, author

Author's note: Edited July 19, 2024

                        August 06, 2024 - Previously titled Firestorm - #3

In Praise of Limits

Praising limits?
Really?
Yes.
Praising a life well lived ~
But limited
Only by my imagination
Limits set by epilepsy
Or not by epilepsy but 
Limits set by my chosen management of epilepsy
A condition that, for me, is not actually very severe
‘Easily treated’ my neurologist tells me
And it is
It is not fragile or brittle 
But it is there.
Not just in my head but in my brain.
Not just an idea but a reality
I could live outside of the limits
And it would be a gamble
Would I enjoy my day or
Would my day be blurred and forgotten
Because of a seizure (fancy name: tonic/clonic)
A seizure that occurred because 
I wanted to push limits in the wrong direction.

“Once you see the boundaries of your environment, 

they are no longer the boundaries of your environment.

~ Marshall McLuhan

Choices

Choices

“Regarding the invitation to your party on this Saturday evening, I will be unable to attend.”
Eileen had written and re-written this reply, never satisfied with how she had worded her denial of a party that was sure to be a lot of fun.
She had epilepsy; a late night and an early morning didn’t always go together - fun or no fun.
Potential for having a seizure was all too present when Eileen pushed the envelope too far and definitely was not respectful to her host - or to herself for that matter.
Eventually, there would be a seizure, and a big one at that, which really dampened a good time.
Choices about these minor details didn’t come up often, but often enough, making Eileen’s world narrow ~ but only about parties.
There was so much more to her life than missing one party, so she made her choice and mailed off the RSVP.

“It’s not our talents that make us safe or dangerous, it’s our choices.”

~ Josephine Angelini, Dreamless

Firestorm - 2

Firestorm
A hint of frayed nerves
Spot fires flare, build
Sparking through chaos
Beginning to flare, build
Ready to jump fire breaks
Firestorm
Reaching it’s peak
Slowly losing it’s burn
Til rest comes.

“It’s true. The storms won’t last for ever. The nasty weather will never last. 

There is always that light at the end of the tunnel.”

Diana Rose Morcilla

Goodness Grows

Grape hyacinths grow 

in innocent clusters
Spring harbingers 

of warming soil and sun

Epilepsy sits quietly, innocently ~ clustering and seizing to slam and fall suddenly with little warning.

Grape hyacinths pop up 

in lawns and fields 
Epilepsy crashes and jerks 

unexpectedly through families

Fragrant auras of a grape hyacinths

are delicate and sweet.
An aura for a seizure blossoms 

into fear and anxiety.

Grape hyacinths ~

lovely and gentle.
Those with epilepsy each 

have their own goodness.

“I smiled back and I thought how incredible that was, 

that they would find the time to smile. There was goodness 

in the world still, even if you couldn’t always see it.”

 ~ Jenny Valentine, Broken Soup