“Stop the car!” I demanded, “I can’t take this another minute!” We pulled over and I got out, laid on the grass and, suspecting the worst, I began to cry. I was consumed with fear to the point of hysteria. This was a new kind of pain.
Since breaking my neck in a roll-over car accident two years before, I had been dealing with a pins-and-needles sensation from the neck down, as well as sharp intermittent pain down my right arm. But this was different. Now I was also feeling severe burning from the neck down inside and out.
An MRI revealed a fluid filled cyst (a syrinx) in the center of my spinal cord. My doctor was certain it was the cause of my suddenly increase in central nerve pain. Immediately I demanded a cure. I had been able to normalize all the other pain—but this was too much!
Knowing it was a cyst, I asked my doctor, “Can’t you just drain it?”
He said no. That would further injure my spinal cord and cause more pain and paralysis. No surgery or procedure would take this away. But certainly something would provide an answer. I knew I couldn’t just live like this!
After trying many different medications and experiencing failure every time, I finally agreed to go to a program to learn how to manage my pain. I started with a huge amount of ambivalence about the whole thing. How was talking or listening to someone going to help my real pain? Truthfully, I felt a bit angry.
“Pain is an experience,” the psychologist explained to the group. “You get to decide what your pain means. Pain is an important signal warning us when we are doing harm to ourselves, but with chronic pain, the signal has outlasted the tissue damage.”
I wrestled to understand this new concept, I thought about how much fear and anger I had developed for the pain I was experiencing. Dealing with the disability was one thing, but adding pain seemed like too much to bear. I spent most of my time focusing on the fear that I would never find a cure and felt angry about the injustice of such a scenario.
Because I was at the beginning of the journey of learning to change my experience, I wondered, “How does one let go of the fear of pain?” But little by little I started letting go of my negative perspective. I gradually went from “I have pain. I must be dying!” to “I have chronic pain, but life is good. I have pain, but my life experience doesn’t have to be miserable. This is my new normal.”
A small shift in thinking changed my whole world. Accepting my pain calmed a portion of my brain called the amygdala, and this caused my pain to decrease.
It’s not completely gone. I still have burning nerve pain from the neck down, it just doesn’t have me anymore. I do my life with all kinds of pain signal “noise” going on in me from the neck down, but I have learned to ignore it by focusing on the neck up—what is good and whole and healthy with me — rather than on what is wrong with me from the neck down.
I would love to hear from you as you try this approach. What helps your experience? What is your “neck up”?