By Carol Levy, Columnist
Nineteen years ago this November a major portion of my trigeminal neuralgia pain spontaneously disappeared.
Unfortunately, it is not the part that keeps me disabled (the eye usage and eye movement pain), but it was the worst of the pain – constant, spontaneous and the most feared. Pain that was triggered by the slightest touch; even the wisp of one hair brushing against the affected part of my face.
Every day since that wonderful moment in time I am thankful. I can stand under a shower. I can walk in the breeze. I can do all of the things that previously necessitated fear and constant surveillance.
Is it going to rain? Is there a breeze? Am I standing too close to someone and they can touch my face and trigger the pain?
Thousands of worries pummeled me, my attention focused on only one goal: to not be in a situation where the pain could be triggered by someone or something.
It is wonderful that the worry is gone. It is freeing that the conditions no longer exist.
And yet the fear repeatedly rears its ugly head.
Pain is insidious.
We know the enemy that we feel each day, every time we have to use the part of our body that creates and causes the pain.
The harm it secretly causes is not so easy to know. It is often quiet, a monster stealthily and underhandedly stalking us.
It wends its way thought our mind and brain, creating troughs of sensation memory, reminders of fear and worry. What set it off before might set it off again. What will set it off now?
It is easy to go there, even when we don't want to. It is not so easy to figure out how to reduce what fills it, much less empty it out.
Even after nearly two decades, I am repeatedly surprised by these fears. A breeze comes up and I freeze in place, someone brushes by me and I wince, gritting my teeth in anticipation of the pain.
And then. Whoosh. Oh, right. I don't have it anymore. I no longer need to be afraid.
It is a part of the effect of chronic pain that is rarely talked about. Researchers and lay people talk about the psychological implications or the emotional causes of chronic pain. They truly do not understand the long term effects of the pain on the parts of us that are hidden, maybe even from ourselves.
It does not have to be a spontaneous remission. It may be that a small portion of the pain is gone or maybe you find that you can do something you thought you physically could not, but now realize you can.
And yet the warning signal goes off in your head: Danger! Danger! Pain coming!
Stopping the alarm is hard to do. I know that for sure.
But looking inside ourselves -- searching, finding and destroying, if we can, that little voice that says, “Uh oh, pain ahead.”
Silencing that false alarm can go a long way towards removing one more obstacle in our search for a freer way of living with pain.
Carol Jay Levy has lived with trigeminal neuralgia, a chronic facial pain disorder, for over 30 years. She is the author of “A Pained Life, A Chronic Pain Journey.”
The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represent the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.