A Pained Life: When Disaster Strikes

By Carol Levy

I am watching a TV show. A tornado hits the main character's house. Suddenly, her house and all her possessions are scattered everywhere, broken and crushed, her house virtually demolished.

I watch as she looks through the detritus, more and more frantic in an effort to find something – anything -- that wasn't broken or totally destroyed.

“How can you recover from something like that? She lost everything,” I thought to myself.

My eyes start to tear up, my stomach clutches. This feels familiar.

Then it hits me. Trigeminal neuralgia did the same thing to me.

People often try to comfort disaster victims with heartfelt, but meaningless cliches: "You have your health" or "At least you're safe.”

The same words were said to me about my pain, even the line about still having my health. Well, yes, trigeminal neuralgia only caused severe pain to my face. The rest of me was physically whole. But was I healthy? No.

“There's always a chance they'll find something to help you,” was something else I heard -- even after 14 brain surgeries, including one that was 100% experimental. I have tried all there is to try. My neurosurgeon made that very clear to me.

This all started when I was 26, just beginning life. 

I wanted to be a singer.  The year before the pain began, I was in two musicals. It was in the lowest rung of professional theater, but it was what I wanted to do. The pay was less than what it cost me for the gas I used to get to the theater, but a paycheck is a paycheck.

With all my hopes and dreams of becoming a professional singer, and two whole shows on my resume, I packed my bags and moved to New York City, like so many other young people with the same dream.

For most of the first 6 months, I had a job as a receptionist. My boss promised me time off for auditions and classes. I was living my dream, holding the hope and fantasy of success in my hand.

Then, out of the blue, the pain started. Constant, spontaneous and triggered. Just a light touch from a wisp of hair could set it off. I didn’t know when the spontaneous pain would come, and had no control over the constant pain.

Soon, it affected my left eye. Any bright light or use of my eye caused breathtaking pain. The rest of me was fine, but I was now 100% disabled by pain.

It kept me virtually housebound, going out only for groceries, doctor's appointments, and the pharmacy. I stayed in as much as I could. Either the pain was so great I couldn't go out, or the fear of it being triggered kept me its prisoner.

Most of us are fine one minute, then wham, the pain strikes.

Our pain is like a tornado. For some, it comes on suddenly like a whirling dervish. For others, like the buildup to a tornado, it slowly gathers strength before demolishing who we were, what we had, and what we wanted to be. 

The pain took so much from me. The hopes and dreams I had before the pain were turned into rubble, yet I couldn’t let them go.

After a tornado the Red Cross comes in, neighbors and churches offer help.

But I find that isn't the case when it comes to chronic pain. Instead, people tend to look away or mouth platitudes, all while pretending our lives haven't been devastated.

I have had the pain for over 40 years. I still don't accept it. I keep looking for the life I expected to have.  It's never there.

Ultimately, the TV character finds one of her treasured belongings in the wreckage of her home.  She is ecstatic and relieved.  She suddenly sees the rest of the damage as merely a chore she has to deal with.

Maybe, just maybe, one day I can do the same.

Carol Jay Levy has lived with trigeminal neuralgia, a chronic facial pain disorder, for over 40 years. She is the author of “A Pained Life, A Chronic Pain Journey.”  Carol is the moderator of the Facebook support group “Women in Pain Awareness.” Her blog “The Pained Life” can be found here.