Psychological Non Epileptic Seizures
Northeast Regional Epilepsy Group

Psychogenic non-epileptic seizures (PNES) warrior shares a poem with us

PNES remissionInstructions: Read this poem and then read what the author Christine Mauriello explains about how this poem came to be and how she has dealt with her mental health issues over the years.  When I first read this poem I was struck with how clearly it expresses the pain so many people with mental illness feel as well as how tragic it is that this pain is too often not heard.

She is now seizure-free and has some important thoughts about it at the bottom of this post.  She also administers a very active and interesting YouTube channel that you might want to visit after reading this.

Please Hear What I’m Not Saying

 

You hear what she says, and there is nothing to that

A pin can drop, you can hear that but what does it say

She says everything is fine and she needs nothing of anyone

But please do not believe her

 

She says that her world is fine

She says that things couldn’t be better and leaves it at that

Please see inside, please look where no one will

Look past her various masks and lies and hear what she’s not saying

 

There is a desperate child inside, a child who screams through the nights

This child can only cry when alone, alone she feels safe

Please see that child, hold her and tell her everything will be all right

She will wipe away the tears and say she’s okay

But please don’t believe her

 

She lies to herself as well as the world

The pain inside, the pain she hides, slowly poisons her, she is dying

Can’t you see, it’s slowly killing her

 

Please, please hear what I’m not saying

Christine Malick (Mauriello )

“I wrote this poem in high school, what seems like a million years ago… a cry for help hidden among other entries submitted for a poetry competition.  Writing poetry and journaling was the only thing that alleviated even a little of the intense emotional pain that I carried.  I truly believed that the burning flames in hell could alone equal my pain, and I feared hell was close. I submitted my plea, along with the last bits of hope that remained.  I prayed that someone would read my thinly veiled S.O.S. and rescue me, but instead it was chosen to be published in a compilation book for the National Library of Poetry.  My hope was gone.  All I got in return was a book that immortalized my once private pain, and confirmation that no one cared.  I felt confused and betrayed.

A couple years after graduation I had reached that point of desperation again – this time I changed my approach.  The word psychopathology means the study of the suffering soul – that sounded about right, so I jumped into the trenches of cognitive behavioral therapy.  There was a lot of healing and recovery over the next decade with different therapies, yet I still ended up with PNES – obviously something was missed.  Once again I mustered all my strength, grabbed my shovel and started excavating my weary soul.  Therapy wasn’t available to me this time around, and ultimately I’m grateful.  All the previous years in therapy had taught me where to begin… it was in the patterns of my life. I applied a new concept that I had learned from warriors of recovery – I learned how to find my part within the pattern so I could overcome the challenges they presented.  I also learned how to make an amends and retire a resentment/hurt.  Now a year and a half into my recovery I have given meaning to PNES by using my journey to help others via YouTube (https://www.youtube.com/channel/UC4PEnDX9wY6XsrNVG8G7QDA) and Facebook, thanks to another principle of recovery, you can’t keep it if you don’t give it away.”

6 Responses to “Psychogenic non-epileptic seizures (PNES) warrior shares a poem with us”

  1. Dawn says:

    Thank-you Christine.

  2. Kate says:

    Christine, I appreciate your words so much. Writing for me, even scribbling and doodling has been a way of expressing my feelings. Some feelings that even I couldn’t identify until reading what I had written.
    It is through acceptance of who I am and what is inside me, including PNES that I have begun to heal.
    Thank you for sharing your feelings, your thoughts, your words.

    • Christine says:

      Thank you!♡ Acceptance is magical, Katie and chronicling your journey is one of the best practices you can keep up. It acts as a time-line as well as a place to keep the various internal inventories that help recovery progress. Also good for reflection and insight for those discouraging days when you feel like you’ve made no progress in a while. A marble notebook was the best investment I could never have expected.

  3. Dear Lorna,

    I would like to introduce myself my name is jessica and i work within mental health in the UK for our National Health Service. An area of my work and passion is working with patients with NEAD. Not only is this my passion, i have also suffered with episodes of NEAD throughout my life, which i always termed bodily distress, body reactive stress and dissociation.
    I have just read the poem by Christine Malick and would like the opportunity to share mine as it reflects the difficulties of trauma on the mind body level which i am sure many people on your blog will relate to:)
    If you would care to read through my poem it would be most valued

    http://heartsick.org.uk/2016/01/04/heartsick-2

  4. Stephanie says:

    That poem resonated with me.
    I was diagnosed with PNES about a week ago.. I have been having these seizures for about six years now. I am now off all of my epileptic medication because it’s useless in treating PNES. But I’m completely overwhelmed and lost as to how I am supposed to receive any healing or treatment. I’ve been to therapy periodically throughout my life but this feels like a task too great to even comprehend.

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