KT 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
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