Sitting in my home in Maryland in late 2001, I started to experience pain in my chest and back. Initially it was a mild, intermittent sensation that was located in a band around my body where I recently had surgery to remove a tumor from inside my spinal cord.
One of the lasting aftereffects of my surgery was that I had lost all sensation from the nipple line of my chest to my toes. The pain I was feeling was in the boundary area between where I had sensation and where I had none. At first I ignored the issue, but over several weeks, the pain increased in severity, duration, and frequency. I called the surgeon for an appointment to find out what was causing my pain.
When I sat down with the doctor, he was not surprised by my situation. He told me that often when people have surgery to their spinal cord or have a spinal cord injury, one of the issues they may experience is neuropathic pain. Neuropathic pain, also known as nerve pain, is a type of chronic pain that can occur when the nerves have been damaged or injured. The doctor apologized for not informing me of this potential side effect of the surgery.
The question was, what do I do now? There were few options. I could try narcotics to dull the pain, and there were other medications I could try to lessen the effects. He said we would just have to experiment and see what would work best for me.
As a recovering alcoholic who lived thirty years self-medicating my physical and emotional pain, narcotics were out of the question. I knew firsthand what it was like to dull my mind with alcohol and drugs. I’d lived that life and didn’t wish to return. I asked if there were any other medications I could use. We settled on a strong pain medication recommended as a first-line agent to treat neuropathic pain. I started at the minimum dosage, twice a day.
As time passed, into the summer and fall of 2002, I found my pain increasing, as well as my dosage of the drug. In late fall, I was at the maximum dosage a person can safely take daily. My pain was still present, the severity and duration were increasing, and the side effects of the medication were beginning to have an effect on my mental and emotional functions. I have always been an avid reader, but I was finding my ability to concentrate was very limited. I was starting to withdraw from my family and friends. I was finding any reason possible to avoid activities that included interaction with other people. I was lying and making excuses for my behavior. I was short-tempered with my wife and young son. I had become an irritable and disagreeable person. Doctors were supplementing my dosage with other medications that had their own side effects, all of which were making me even more unpleasant to be around. Deep inside, I knew there had to be a better way.
One day in early 2003, I was talking with my Alcoholics Anonymous (AA) sponsor about what was going on in my life. A few days earlier, my wife had commented that I was acting much like I did when I was drinking and she didn’t like seeing those days returning. I explained this to my sponsor, and we both came to the realization that I could try the Twelve Steps of AA as a tool to work with pain. After all, people were using the Twelve Steps for eating disorders, narcotics, gambling, and a host of other obsessions. So I set out to adapt the Steps, focusing on chronic pain.
Step One: “We admitted we were powerless over pain—that our lives had become unmanageable.” That was absolutely the case with me. I was totally powerless over my pain. I had tried for many months to manipulate my pain, to eradicate my pain, to alter my pain. I tried drugs, yoga, acupuncture, everything I could think of or had heard about, but I was still in pain and at its mercy. It was easy for me to accept that whatever I tried didn’t work and that my pain won out. I was totally powerless.
My life was a shambles. I was at odds with my wife, my son, and the world at large. Everything about my life was starting to unravel. Was my life unmanageable? Undeniably, yes.
I immersed myself in Step One for a few weeks to let it set in. Over the course of this short time, I realized that my relationship with my pain was changing. It was no longer adversarial.
I went on to Step Two: “Came to believe that a Power greater than ourselves could restore us to sanity.” That was easy for me. After working the Steps in AA, I had a Higher Power that had relieved me from alcohol and drug abuse. I knew this could happen again.
So I moved on to Step Three: “Made a decision to turn our will and our lives over to the care of God, as we understood Him.” I did this one easily, and the tension in my life soon diminished.
As I was working through the Steps as applied to pain, I realized my life and attitude were improving. Was my pain lessening? I didn’t believe so, but the stranglehold it had on my life was diminishing. Once I got to Step Eleven—“Sought through prayer and meditation to improve our conscious contact with God as we understood Him, praying only for knowledge of His will for us and the power to carry that out”—my life and my state of mind began to shift. When I started utilizing meditation to get through the truly tough pain moments or days, I found I was becoming myself again.
Now I needed to practice Step Twelve and give my recovery away to others. In June 2004, I was speaking at an AA meeting in Baltimore. I spoke about how I was using the Steps of AA for living with my chronic pain. I spoke of the serenity and peace I was experiencing from staying true to the Twelve-Step path with another obsession. After the meeting, a man spoke with me about how he, too, was using the Twelve Steps to deal with his pain. We went to have coffee, which resulted in the two of us holding our first Chronic Pain Anonymous (CPA) meeting, right there and then.
We located a church to schedule weekly meetings. We contacted AA to get approval to use the Twelve Steps and other AA material. We set up a website to attract other people, and that is how we began this journey. Over the course of a few years, we found many in our CPA fellowship didn’t have pain as their primary issue but lived with chronic illness. To accommodate their inclusion, we added the words “chronic illness” to our Steps and all our literature.
The CPA fellowship has helped me to live a life where I can once again contribute to myself, my family, and others. I pray they can do the same for you.