Psychological Non Epileptic Seizures
Northeast Regional Epilepsy Group

It has a Name

keyKT has written this powerful poem about her struggle with her mysterious illness-psychogenic non-epileptic seizures (PNES) and the importance of finally being told what it was exactly that she has been suffering.  She has generously agreed to share with us and we thank her for that.

Friends-close friends from near and far decide it is time

No explanation needed they see it written on my face Get in the car now!

Shaking, head aching, toes tapping, foot banging

Help me! This is no show, writing now illegible words, mind screaming!

I can’t make this happen! What is happening?! What is happening?!!

Onlookers ask and ask and ask; Are they testing with their questions?!

“You ladies are enabling her,” admonishes the nurse with pinched face.

Dr. DoNoHarm, “Your head hurts? Poor you.

Do you want a Tylenol or Morphine?”

Patronizing ass, a Tylenol works just fine; I am not drug seeking.

But you sir, find yourself reported.

Knowing friends hurl darts of advocacy

and reach out to me with eyes full of love.

Lightbulbs of thoughtfulness brighten the close cubicle.

Curleycue of pink tubing decorates my hand and I watch the first sip of red

speed up the straw.

Who am I feeding?

Again it starts-Thumb wiggles. Arm tingles. Leg bends and shouts

Why???!!!!

 Over and over my thoughts are interrupted abruptly,

I am in pain!  Muscles growing and stretching, contracting and banging

in more directions than has even been intended

Again and again! Is there no relief?!

For days, black, black, black, black, black, five in all. I

I know nothing though I see and taste, smell and feel and hear

Yet I am not really here. Where am I while I am away?

My memory is an erased and washed clean blackboard.

Instead of sleep the nights are filled with pacing, fear

and repeats of muscular torment and torture.

More than two years pass by.

And now, I pick up the chalk and lift my trembling hand

to write the lesson for this  new day: Hope

PNES… Finally, it has a name!

I am comforted and comfortable

Acceptance

2 Responses to “It has a Name”

  1. Rachel says:

    Hey I really appreciate this poem. I have non-epileptic seizures and I was in the hospital last night. I believe that you poem represents the feelings I have had a times, especially the lack of empathy of the medical staff. Thanks for writing it. I believe that God can heal, I was prayed over at the christian church that i attend as way seizure free for almost four mouths. In the last two years I have had 200 seizures. I am waiting for God to fully heal me and I believe that He will!

  2. Monique says:

    I can relate to this poem, it is so true. Every word helps me to know that I
    I’m not alone.

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