Poems by those living with Trigeminal Neuralgia and Facial Pain Disorders

Tears from our hearts

Hope is  by Kristen Case
Hope is a slippery little bugger it likes to squirm out of my grasp the tighter I think I'm holding on. Just when I think I'm getting close when I think it's there, firmly in my hand, just a wriggle away and it's gone again, back in the depths where I can't see a thing,  where I only feel it in wisps and shadows, brushing against my legs.
Hope it's that thing out of the corner of my eye that when I turn to look directly it's always gone again,  and I wonder if I imagined all along.  I think I've got it, there it is I have it, I think I do. I hope to have hope to hope for something.  I do. Then it's gone.  Again.

Why doesn't she smile anymore? by Kimberly Marin
Happy and healthy. Not a care in the world. She found joy in simple things nd it showed in her eyes and smile. She gave life to babies and nurtured the sick. There wasn't a furry one she passed without a caress. Fast forward a few years. At first it seemed like random pain. Until it happened so often she could no longer talk without a cringe from within. Weeks months then one year passed. It became constant and erased the the smile. People pass her by now and say "Smile it's not that bad". Inwardly she crumbles and wishes she could shout. You see it is that bad and even worse. The physical pain is horrendous. The emotional pain just as bad.
Not the one you used to be. You try and try. Exhausted from trying to seem normal. Living a lie. Just wanting to talk ,laugh, and smile without the horror. Just to feel normal again for a while Trigeminal Neuralgia you will not win. I will fight you until the end.

By Lori Bowen
I close my eyes and I see your glowing green hand go throw my chest up my throat and to my face. I feel you peeling the layers off inside. I see your other hand tearing my scalp, I feel you drilling my skull. I feel you tearing my brain apart picking at the pieces. I see another with a bottle I see how easy the bottle of little pills will slide down my throat. I see that bottle as my savior. A way to escape your prying hands to escape the pain.

We dedicated to TNnME
We face the greatest pain. We live with agony and fear.
We let doctors stick needles in our heads. We feel hot pokers in our ears.
We have surgeons put in Teflon pillows, take out veins and cut our nerves. We have Gamma Radiation shot into our brains..
We are test subjects; guinea pigs. We won't shut up.
We won't back down until we have a cure.
We are Trigeminal Neuralgia Awareness Fighters. We are strong.
We are TNnME. Love, June Toland-Stephens

FEAR
Sitting here trapped inside during the cold, life has become a poker game and I'm forced to fold. I once enjoyed days that it would rain, now I fear them cause I know it means pain. Food that has to be chewed is a thing of the past, now replaced with a lifetime of feeling like I'm on a fast. Come give Momma hugs & Kisses goodnight, are now be careful baby not to tight. I was once pretty with long hair & make-up, now it takes my all just to get-up. I hide my pain and my tears, but I can't hide my fear.

TN Poem by Cathy McClelland Lawing

You came one day and knocked me to my knees... I cried oh stop, please stop, oh please.. The doctors passed me one to another. The drugs they gave, my brain did smother. The surgery worked for just a short while it gave me back my beautiful smile then the breeze did blow and back you came.. Trigeminal Neuralgia I curse your name...You took away my smile, my life...I can not even be a good wife..no kisses, no touches, at times can't even talk.. the wind outside prevents a peaceful walk.. I want the world to know what you do.. I want them to know what we go through.. You have the name of "suicide disease" Can't we stop this, stop this please!! The doctors, the drugs are all the same.. some days I am lucky to remember my name. what was I doing, what was I supposed to do next, some days I do feel like I am hexed. The pain it comes like lightening bolts. My forehead, my eyes, my nose, my chin it jolts. I cry out, though I try to be strong.. it strikes me down, oh this is wrong. It had to be told the stories of those afflicted.. we had to let you know this pain existed.. Lets join together against this "suicide disease".. we can stop this, stop this please!!!

In BED:
We wake up in the Morning and we wonder what lays ahead. Will it be the same old face pain that we all dread? Or a day that gives us the hope we sure need...
the hope that one day we can be pain freed!! As I yawn and stretch I wonder what lays ahead see it isn't even simple just laying in our beds!! For the days of NO PAIN are sometimes just as bad! As the fear of what's to come can make us damn SAD! But we try to get on with a life with severe Pain and together we fight as a world without Pain is our AIM!! Rosemary Grant © 2013

Please Hold My Hand Son, Poem by Debbie Murphy

I'm lying here, trying to rest.
These medications I have are they doing their best?
Suddenly from nowhere, it strikes like lightening.
Please hold my hand son. Can you stop this pain I am fighting?
Don't wipe my tears your touch is too much.
Finally . . . the attack is slowing and I can handle your touch.
Please forgive me my boy! What was I thinking?
You are so young to see your mommy so shrinking.
I'm sorry my sweet son to do this to you today.
You are so full of love to want to care for me this way.
Suddenly from nowhere it strikes like lightening.
Please hold my hand my son. Can you stop this pain I am fighting?

Oct. 7th is ONE DAY out of 365. Poem by Amy H. O'Donnell

We have come together, united we make a stand! Pain on our faces! Teal ribbons in our hands! Today is the day and we want the world to see! We are the TN Warriors!
We need research for a CURE desperately...
There are 365 days in a year and we are asking for one! One to finally get the attention for the Agony, the Torture, the Humiliations this illness has, in our lives, done!!!
Hear Our Voices! See Our Tears... This is the life we are dealt and we have suffered with it for too many years!
We have lost so much and there is so much more at stake!
Acknowledge us... Prayers, Kindness, Donations, Research do whatever it will take...
Just help us get started towards a CURE for goodness sake!
Too many of us give up along the way! There's only so much right now that can be done to take even some of our pain away...BUT...
Trigeminal Neuralgia attacks like lightning shooting, burning, stabbing, and numbing through the face. It can last for minutes, hours, even days depending on the case! And that is just some of the symptoms of Our TN filled lives that is here to stay!
So I ask again... Hear us, See us today! But wear a Teal Ribbon if that will help you remember us for even one more day!! I write because it hurts to speak....Please keep us in your thoughts for another week!!!
In a month or so.. Will Our Pleas on this day be remembered as a day on the way to a CURE? Or will we be forgotten while we lie in Agony as another TN Attack takes hold!? W.H.O. will listen???

My name is MARINA, I'm a TN warrior, and a survivor too.
Take a pill
They said it will take away
That awful pain
Little did I know
That one pill
One day, turned into a handful
Some doctors look at u with pity ,in their eyes
While some look at u as if the pain u describe
Is nothing but a lie
Those that don't feel my pain
They don't know what it's like
To feel like a part of u have died
U see I'm here,
i do exist
Somedays only by name
But mostly known as
That Poor O'L Soul
One day I we'll be free
Of this demon that has control over me
TRIGEMINAL NEURALGIA has not won this war yet
I'll fight this fight if it's the last thing I do
And hold my head up high
And show these doctors and
TN monster a thing or two
Thank you written on a bad night of pain. Hope you enjoy it.

Remission
A six month reprieve, one can hardly believe.
A life given back, no vicious attack.
To talk, to eat, to enjoy life complete.
A conversation so sweet, no risk do I seek.
To touch, to embrace, alas not the face.
The fear it endures, through motives most pure.
The spears they lie dormant, portending the torment.
A smile, a ride in the air, such joy, so fair.
The sun and the wind, no cares to tend.
Intermission from pain, but what lurks the same.
An end comes unbidden, a single shock so riven.
A grisly bastion, the end of remission.
By Mark Molter