Commanding Communication

A Fate Worse than Death

“It’s not the one time blood, sweat and tears
of the climb to the mountain top,
It’s the ground level walk of agony
From the persistent pebble in your shoe
Day after day that doesn’t goes away.”
... Anonymous

“A fate worse than death” describes any misfortune that would make life unlivable, especially rape or loss of virginity. The phrase was formally a euphemism for rape that expressed in Edward Gibbon's Decline and Fall of the Roman Empire, 1781:

    "The matrons and virgins of Rome were exposed to injuries more dreadful, in the apprehension of chastity, than death itself."

The chronic pain caused by trigeminal neuralgia was, for me, a “fate worse than death.”

The pain on the right side of my face hurt so bad that I couldn’t catch my breath, much less pray. It hit me with full force one sunny January afternoon  in 2007 as I walked down the driveway in front of my home in the Oakland Hills of the San Francisco Bay area. I thought it was a stroke as I fell to my knees screaming. I was alone at home. It was the beginning of a two-and-a-half-year journey I would have to take alone as I learned to live with the rare disease that affects only four out of every 100,000 people. I couldn’t explain how bad it was nor why I suddenly couldn’t talk or chew food for hours at a time. I lost and gained weight from poor nutrition, fell into a relentless depression and eventually, I lost my job. I was only 58.



Trigeminal neuralgia is a condition in which inflammation of the trigeminal nerve causes excruciating pain and muscle spasms in the face. "The pain was sharp, as if someone was taking an ice pick and jamming it up my teeth, or having an electric wire inside my cheek,” I told my county psychiatrist whom I was seeing for medication for treatment of bipolar disorder I was diagnosed with 20 years earlier. “It sounds like trigeminal neuralgia,” he said gravely. You’ll need to see a neurologist to be sure.” The diagnosis was confirmed by a neurologist two weeks later and I was prescribed an anti-convulsant medication to manage the pain as best as possible. The side effects of the medication included chronic fatigue and difficulty concentrating. I couldn’t remember simple directions or to even lock the door to my house, much to the chagrin of my housemate.

During a pain period, attacks can occur hundreds of times a day. The interval between attacks can range from minutes to months or even years, and pain is completely absent during these times. Recurrences of the pain are almost always in the same area of the face, but tend to spread.

The trigeminal nerve is the fifth and largest of the brain's twelve nerves, carrying both motor and sensory messages from the face to the brain. The most common cause of trigeminal neuralgia is idiopathic -- that is, unknown. However, the current theory is that disease or irritation of the nerve increases the firing of sensory impulses, so much so that trigger points for pain develop on the face and in the mouth as a result of this overload. Trigeminal neuralgia also can be activated by such conditions as multiple sclerosis, tumors and abnormal blood vessels. Stress is less often a contributing factor.

TN usually develops after the age of 50, more commonly in females, although there have been cases with patients being as young as three years of age.

"People have called trigeminal neuralgia  the 'suicide disease.’ “Suicide is not chosen; it happens when pain exceeds resources for coping with pain.”  "It was worse than labor pain,” one woman said and a man who also had bone cancer said the TN pain was the worse of the two.

It hurt to eat and drink. It was difficult to smile. It affected everything I did. Worse of all, it isolated me and caused long periods of severe clinical depression that was not responsive to several anti-depressants I was prescribed by a psychiatrist who finally concluded the depression was pain-related.