NeuroTalk Support Groups - An Ode to Trigeminal Neuralgia

We who live with trigeminal neuralgia
Soldiers in a war.
Fighting an invisible enemy.
What is the fighting for?

Trigeminal neuralgia,
“the suicide disease”
The worst pain known to man,
Help us, find a cure fast please.

A knife, a lightning bolt
A slash across the face
It comes out of the blue and
Boom - facial pain is now your fate.

Nothing shows where the horror hit,
It lasts for such a short time,
It’s hard to believe such a pain exists
Yet somehow it becomes mine.

Any touch to the pained zone
An invitation to the nerve
A breeze, a wisp of hair
Its hard to stop the moans.

Then to finish it off,
for some the pain is constant,
No one can imagine the horror
Of the beast that walks in our conscious.

For me it’s been 12 brain surgeries,
And not one sibling came
They decided I was a fraud
Maybe because they couldn't see the pain.

Dr. Jewell Osterhom,
the first one to enter my brain
cut out a bunch of vessels
he found that were to blame.

The next surgeon, Peter Jannetta,
He paralyzed my face
When he did his self named surgery,
putting a Teflon pad in place.

The scar tissue left by him
Made all other options dim
Other surgeons tried to fix it
But the benefits were none or slim.

Even when I felt better
The better was quickly gone
The benefit more from staying in -
or good weather all but gone.

The pain always came back.
Vengeance was its goal
Everything I had or wanted
The pain and Dr. Jannetta stole.

Finally Dr. Barolat offered
Something I found unpalatable
But finally being choiceless
the choice was to be malleable.

I let him put inside me
some implants and a battery
None of them were lovely,
but the benefits from them godly.

Trigeminal neuralgia,
the suicide disease.
It makes us make choices
None of them serene.

For those of us who have found solace
In drugs, operations or ‘things’
There can be no finer feeling
Then when the monster is freed.

This ode I write to tell you
The good, the bad, the need
In hopes that it can help
those who suffer from this beast.

Even when things go wrong
The hope can still be there.
For you never know whats waiting
Right beyond the air.

Trigeminal neuralgia
A name that rhymes with nothing
An ogre that besets us
Our fight not one of bluffing.

I salute all of the sufferers
I know the abomination
The fight to be rid of this pain
A courage, a struggle brazen.

Here’s to you, all of my fellow fighters. against trigeminal neuralgia and all chronic pain