Ode to Epilepsy

Another day, a stretch, a yawn,
The rain of no concern
As I open up the curtains,
Peaceful and taciturn.Normality is my morning:
Let the dog out for a pee;
Check the emails and my facebook;
Make me some Yorkshire Tea.

Plenty to look forward to –
Yoga, run and sing.
Maybe a coffee with a friend,
But what of my offspring?

Son 1 wakes up weird and groggy
Nothing brings a smile.
Not even puppy Rua
Can entice him to walk a mile.

Quietly I try to probe,
“Seizure free today?”.
A shoulder lift, a grunt and frown
Is all that he can ‘say’.

This gives a definitive answer –
The night, long and rough.
What does the day have in store?
When is enough, enough……

Nine years of epilepsy,
Asthma, 20, ouch.
Ingredients for a recipe
Of hours on the couch.

Let’s go do ‘such and such’?
Is a question often asked.
Limited and governed
Means days and weeks flow passed.

The list of drugs and pills is long
That help to be seizure free.
Side effects gargantuan:
Reality the absentee.

Seizures used to be violent,
Broken bones the norm,
Treatments having toned them down
Now Zombie the current form.

This young man’s world is limited
Ever bound by the unknown,
Answers not yet present,
NO options being out thrown.

Healthy diet is easy (ish),
Exercise is not.
Hard to tell is this the right day?
As every day he’s ‘shot’.

As a child he had a thirst
For knowledge and for word.
Now most days, for Son 1
Are slurred and blurred.

Despite his situation
Very present is his cheek.
His quirk just getting him to the end of
Each day of every week.

Son 2, another scenario:
Epilepsy just as real
For so many different reasons.
A bit of a raw deal!

Some types of light a trigger,
Shopping no fun, we have found.
If the exit isn’t close enough,
He just drops to the ground.

Positivity he has heaps of
On a superficial level,
But underneath so vulnerable
Daily fighting with a devil.

Strong, insecure,
Happy or down,
Hungry or full?
But never a frown.

Med free he transitioned
Well over a year ago.
Seizures still present,
Side effects now no show!

He lives an hour away,
Sometimes a worry for this mum.
He keeps life full, which pleases me
And home he loves to come.

He loves to give, he lives to share
His knowledge and his skill.
Generous to a fault,
But every day Uphill.

Son 2 zig-zags on
With Epilepsy rife,
And all the other factors
That it brings to his life.

Neither are employable;
Jobs they cannot get.
But surely there are employers
With an empathy Nett?

Benefits are all very well,
Even for budgeters it would seem
That after necessary expenses
You could end up cold and lean.

How are you supposed to live
With a condition you did not wish?
No answer, no money, no joy, no hope
With ‘baked beans’ every dish.

I feel blessed I have security
And calm within my mind.
Crossed wires for Son 1 and 2 –
Epilepsy can be unkind.

I have clarity, and lucid thoughts,
No fear of noise or light,
No drug induced depression or
Strange bruises in the night.

Peoples’ opinions vary,
‘Lazy louts!’ say the mean.
I quickly learnt to bite my tongue
For fear of words unclean.

Every sufferer is different,
NO judgement is the key.
Be present and supportive
In whatever way may be.

Each and every day does vary
For good, or for bad:
Unpredictable, unknowing,
Angry, and even mad.

The shock is even Specialists,
The best that you can find,
State that even they know ‘nothing’
Of this complex human mind.

I cannot let the ‘what ifs’ plague
As a cot case I would be.
A peaceful mind and heart
So essential don’t you see?

I need to be the best I can
For both of these young men,
And maybe one day we will go
Again to see Big Ben.

(A mother)

Last modified: August 29th, 2016 by EWCT | Posted in: Your Stories