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Jon Sawyer Apr 7
Doing time with my spouse,
feels like climbing a mountain.
7 April 2024 - After yet another cluster of seizures on her birthday, my wife and I have about a two week period where we get our lives back on track. It's a cyclical process that is sometimes difficult, but upon reflection can bring more than one silver lining.
Datore Fargo Nov 2021
I saw butterflies,
perch,
on my toes,
last night.
They fluttered down,
from the ceiling,
calling my sole,
their home.
Onyx wings,
somehow sparkle,
in the late,
early hours,
of dawn.
I ponder,
will they,
carry me,
to my end,
this time?
Only wishes,
and the anxiety,
of being lost,
again,
this time.
I dream,
of freedom,
from reality.
It’s mocking my,
illusions,
birthing them into,
hallucinations.
My brain,
broken,
haphazardly,
glueing,
the pieces,
together.
Lost,
I’m drowning,
forgotten,
I should be,
flying.
Recently I’ve been sick, I’ve been having seizures, hallucinations. Unfortunately we haven’t figured out what is wrong with me, it’s neurological. I start medicine today so I may disappear for a while, but this poem is the closest I can get to expressing me again. I hope you enjoy.
Corbyn Dec 2019
Ambulance ride
Why did I do this?
I’m scared I will die
Losing coherence
Seizures arise
I don’t remember
Days of that time
They’re scared I won’t make it
My family cries
I had a suicide attempt a few months ago that almost ended my life. I want to write poetry to help myself process what happened. I’m going to tell my story in segments because it’s hard to write about. Thank you all for reading my work! <3
Desmond the poet Aug 2018
Those you haven’t victimized fear you.
Mighty and dreadful you seem.
Little do they know, you only seize flesh and control the mind.
You seize not the soul.
Hence be not proud.

You’ve dwelled in me for many years.
Imprisoned me to anti-epileptic drugs.
You’ve dispirited me.
You attack, seize, and control my mind.
Your attacks are but brief.

Epilepsy be not proud.
For I fear not what rescind only flesh.
I fear what abolish both soul and flesh.
Proportional to gravitational force I fell.
I’ve always find the forte to rise.

Epilepsy be not proud.
For against all odds, I’m still alive.
https://m.facebook.com/EpilepsyandCpfriends
This poem to show that for as much as I've been epileptic for 32 years I'm still alive because Epilepsy has not managed to **** me.
Desmond the poet Jun 2018
Nobody knows how it feels.
How living in fear feels.
Not knowing my next seizure.
How, where and when?
Public or private zone?

I fear the cruelty of epilepsy.
The devil you know better's than an angel you don’t?
I bet to differ.
This inevitable monster cohabite since childhood.
Anxiety haunts me even in parenthood.
Nobody knows why and how it feels except God.
Just an expression of it feels waking up in the morning not knowing when my next epileptic seizure will come.
I had just said how I
Don't want to go outside again,
(That means existing)
And then I realised
My body said no too.
At times like this I can't even get to my room.
Almost like my failure
Is flashing up in lights.

Avoidance is okay if,
It's the only thing you can physically do.
Sometimes I start to wonder
If I should say thank you.
It seems my body succumbed to all these feelings,
Helpless but breathing.
I shake and **** -
Made everyone confused,
Then I struggled to reach,
Not even able to get a drink.
What they said was seizures.

Seizures usually stop though:
It's day 34 now.
Next I wasn't able to walk,
Do you know what it feels like
For your body to just give up?
Collapsing is now regular,
Sometimes my whole body won't move
And currently as I write this,
Sitting up is a joke too.

Psychological seizures -
Last longer than usual
Yet can mimic epilepsy.
All the tests back normal,
Except from the ones which take weeks.
In my head, really?
That's basically what they said.

Now at a specialist talking therapy session,
For 'exactly what I have'
They told me:
You can't separate the mind and body.
The thing I like that they said most
Is that the physical symptoms are real,
That I'm NOT making them up.

However, I still don't appreciate when they tell me "this is good".
You see, they act like because it's not caused physiologically:
It's much easier to fix.
At the hospital: "I'm confident this will just stop
And probably won't come back."
Here I am still counting days,
I was in hospital for 3,
The 34 does not include the first week of milder ones,
One month till my exams
And actually it's just under that,
I count the minutes I can attempt to revise for.
I recognise the month I missed when I finally became productive,
Now I don't have a choice.
The teachers compliment how well I'm doing,
But they don't see me
Lying on the floor at home,
Pushing and willing my muscles to set me back up,
Whilst going
Absolutely nowhere.

My great Granny is way more capable than me.
Do you understand how embarrassing and berating it is,
When the paramedics come for the second time within a week or two,
Just to tell you quite simply:
"There is nothing medically wrong with you"?
"You're breathing is perfect,
Oxygen 100%"
"Does she have social anxiety"
-One of the first things that he said.
Can you guess how many anxiety attacks I've had?
Enough to be sure I'd recognise them by now.
"I wasn't anxious" I told them,
Desperate to be heard,
But as soon as they know about your mental health,
Nothing ever matters.

It's true that you take independence for granted,
Until it's taken away from you.
I don't think I've ever wanted to leave the house so much,
Than when I physically couldn't exit for
Just about a month.
I don't like burdening my family and friends,
It doesn't matter how they assure me
Either way I'm still dependently relying on them.

Although this does have one benefit
And some of it does make sense;
There are things I haven't been wanting to do,
By this it means that I can't do them.
Putting this open and honestly:
It's a potential get out of jail free card.
This way not doing it wouldn't be my fault,
Because I am physically unable.
That makes sense that it's psychological.
Another thing I tried to disprove it with was that,
"I've been better lately"
Which yesterday I finally got that explained,
The symptoms come on when you're relaxed,
As they are finally given the chance.
My body's saying no,
And sometimes I partly agree.

What doesn't help me is the:
"Therapy is how we treat this"
"It's good you don't have a physical cause."
Right, yeah, okay then.
So look me in the eye again
And tell me that it's fine.
Tell me how I recover from this debilitating illness
By doing what I've been doing for two years,
If that was going to work surely it would have been prevented?
People with a physical diagnosis receive physical help.
But what about me,
Do I just fall through the system's gap?
What happens when I can't walk,
When I fall off my bed from lying flat?
If I had a broken leg they'd give me crutches,
I get an "it will go away soon but it's impossible for us to say when".

If there's anything you take away from this,
Then it should be that:
One. It isn't just in my head.
Two. I am not in control of what's happening.
Three. It may be a conversion disorder but it's no less real.
Four. The last point states the fact that it causes PHYSICAL symptoms.

If I want to tell the whole truth then I have:
Non-Epileptic Attack Disorder,
A movement disorder causing seizures often looking like epileptic fits.
The truth I will give (probably) most people:
I have seizures which are not caused by epilepsy,
Which makes me shake and collapse
And if I'm feeling generous I might add another symptom on,
Because the longer this has lasted,
The more there are that come.
Desmond the poet Apr 2018
Every morning is a chance at a new day.
It’s never a bad life but a bad day.
Appreciate every seizure-free day. great feeling of rising post every fall.

Life's perkier focusing on what truly matters.
Each day may not be seizure-free,
There’s but, something good everyday.

I don’t live once.
Instead I die once.
I live every day.
I’ve been broken.
I’ve been hurt.
I’m however still alive.

https://www.facebook.com/EpilepsyandCpfriends/
As usual I share my experience living with epilepsy. This poem is about focusing on the positive because I'VE learnt a lot from living with this chronic condition.
Desmond the poet Sep 2017
by Desmond Makatu,

Your visits are unpredictable.
like a ghost, you're invisible.
The attacks are inevitable.
You come like a thief at night.
You seize me day and night.

"Epilepsy: an inevitable thief"

Cruelty unrestricted to age.
Victimising even toddlers.
Unrestricted to ethnic groups.
My life has time gaps.
Gaps, like discrete graphs.
Cracks depict thin line between life and death.
Grace bridges the gaps and life prevails over death.
Seizures still haunt me like a demonic wrath.

"Epilepsy: an inevitable thief"

Attacks are brief, bruises lasts forever.
You offer questions only God can answer.
Quest for answers is like probing for cure of Cancer.
Death seemed to be the answer but God thought otherwise.

First seizure shook like multiple earthquakes.
Followed by a pool of darkness.
woke up confused, crowd's ****** expressions said a thousand words.
Migraines raided my head, exposed to enormous pressure.
Officially baptised by wrath of seizures.

"Epilepsy: an inevitable thief"

You're a physical and psychological culprit.
Like a Yoyo, you take me into a roller-coaster of emotions.
Aftermaths of your theft are etched in my mind as if they’re on stones.
Behind my “poker face” lies devastating pains than physicals seen by the  crowd.

"Epilepsy: an inevitable thief"

Watch video on YouTube. https://youtu.be/VggXerYLOHY
Being epileptic for, I thought I should express how I feel about the condition.
Desmond the poet Apr 2018
I fall faster than gravitational acceleration.
Body jerks, vibrate like an earthquake.
Body and mind go separate ways.
Physical overcomes mental strength.

Muscles gain strength.
I can kick like an Ostrich.
Dare not to touch me.
Only I can reunite my body and mind.

The reunion results in confusion.
I get electrically shocked by migraines.
The joy of the reunion is short-lived.
I ask myself all the “Whys” in the world.
Only God knows why.

https://www.facebook.com/EpilepsyandCpfriends/
Poems about what I go through in the midst of an epileptic seizure.
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