My reflections on the pain perspective.
I have a master. This master is kind to me as long as I obey.
Yet, when I move beyond the confines my master has set for me, there is hell to pay.
He uses instruments of torture to put me back within my boundaries.
He pounds nails into the vertebrae of my spine and coats my feet with honey, setting bees upon them.
Tonight, I lifted a basket of clothes, and he knocked me to my knees.
I asked for forgiveness while lying in a fetal position on the floor. Will I ever be free?--Debbie Walker
I wrote the above passage when I began to journal about my experiences with chronic pain.
I first met the Pain Master about 15 years ago, and he still tries to visit me every day, but I forbid him entry. He lashes at me with his whip — I stay just out of range. I often cower in fear, thinking he will break and enter. Other times, I stand firm and laugh.
My journey with chronic pain has been an insidious one. I have run from him, fought with him, and sometimes embraced him. You notice I use the pronoun him. He doesn’t belong to me, but he has been a constant companion for many years and still is.
He first parked on my doorstep in 2004 when I was experiencing sharp pain while climbing the stairs at my place of employment. Over time, I could not perform my duties, and the agency terminated me.
When I visited my doctor, he wrote my first prescription for an opioid.
I never abused my medication; however, I became aware of the dark world of opioid abuse.
My teenage son informed me I was not to tell anyone about my pain medication because of the threat of armed robbery, my purse stolen, or being subjected to methods of trickery.
Somehow, the word got around, and an individual approached me and asked if I wanted to sell my pills. It horrified me, and my fears drastically increased after that encounter.
I realized these fears in 2010 while visiting my father in the nursing home. I wheeled my dad down the hallway to get his meds, and upon returning to his room, my purse was lying on the floor. My pain meds were nowhere in sight.
By law, you cannot replace an opioid prescription even if it is lost or stolen. Thank God, the time for a new RX was close at hand.
But I faced the reality I would go through opioid withdrawals.
Now, I understand why people rob, steal, connive, threaten, terrorize, and attempt to kill to avoid withdrawals. This, in no way, excuses the behavior, and the reasoning behind these actions is reprehensible.
That being said, opioid withdrawal is an experience, unlike anything a person can imagine. I hear it is worse than heroin withdrawals. I’ve never used heroin, and my only conception of it was from TV and the movies.
The ordeal altered my perception of reality.
The pain began as cramps in my stomach and progressed around to my back. I felt like someone had taken a sledgehammer and was hitting me at regular intervals — with my breath in and my breath out. I began to rock, back and forth.
Moaning developed into periodic screams. Time and motion disappeared. I felt I was standing outside myself, staring down at the writhing body on the bed. My mind was slipping away. The pain was surreal, and this nightmare continued for three days and nights.
I emerged on the other side, however, determined to remain aware of my actions and environment. I took measures to ensure my meds were secure. I remembered my grandmother utilizing her third pocket as she called it and made a deposit confident of its safekeeping.
As time went on, the osteoarthritis, sciatica, and neuropathy increased to the point the doctor prescribed me the same pain meds that cancer patients were receiving.
Eventually, I went from a cane to a walker to a wheelchair to bedridden.
My doctor informed me my spine is riddled with arthritis, and no surgery will help. He looked at me and said, “You will be on pain meds until you die.”
I descended into the abyss of depression. Food became a source of comfort. Therefore, I found solace in eating. My husband prepared my meals, and I gained 100 pounds over seven years.
Friends dropped away, social interactions became non-existent, and I fell into nothing.
Then, I realized I had to take some responsibility in my efforts to manage the pain.
Journaling evolved as one coping mechanization, and I buried myself in books. Books became my friends. I read articles and searched the Internet for meditation practices.
I happened on one method called lectio devina (breath prayers) which is an ancient practice of praying traced back to the 4th century A.D. This technique is a way to meditate using the breath and body while speaking Scriptures out loud. Unlike yoga that attempts to empty the mind, breath prayers fill the mind and the spirit.
Despite all my efforts, in 2016, I asked my pain management doctor if there was anything else available to combat pain because I wanted to die.
He informed me of an implanted medical device called a spinal cord stimulator that zaps the offending nerves and offers pain relief. I had the surgery to implant the device about the size of a pacemaker, with leads comprising thin wires running through my spinal cord.
After two anxious months of recovery, in January 2017, I rose from my bed to stand for over two minutes at a time. (I still need a cane to walk, but I am upright!) The next step was to wean me off the high-powered pain meds and my doctor slowly decreased the medication over one year.
Then, the pharmaceutical companies (Big Pharma) dropped a bombshell: they were discontinuing my pain meds because of the opioid crisis.
They did this out of fear of being sued without regard to the people who legitimately needed them.
I believe Big Pharma needs to be held accountable with the offending suspects receiving prison time. Instead of putting profits into research and development, they chose money over lives.
Subsequently, the doctor moved me from pain pills to pain strips.
This medication works by changing the way the brain responds to pain. These strips are a Schedule III drug and can be addictive.
Besides, I get other procedures such as steroid shots in my back, and nerve ablation (this procedure destroys nerve tissue and interrupts pain signals).
New advances in the medical field of stem cell technology are offering therapy for pain in the spine.
Minimally invasive injections of stem cells from your own body can heal it from the inside out.
However, insurance companies do not cover the procedure, and the cost can be upwards of $25,000. This reality diminishes any hope of help for me and others like me who are not financially independent.
Recent breakthroughs in neuroscience suggest that chronic pain reduction is achievable by retraining your brain.
They posit that pain occurs in some areas of the brain as opposed to the body.
Cognitive processes such as learning and biofeedback can train the brain to heal itself through increased neuroplasticity resulting in a dramatic reduction of pain.
All the methods I use to reduce my chronic pain set me on a path to research and write about my experiences. My response to Mr. Pain has changed. My relationship with him over the past decades includes medication intertwined with meditation, prayer, procedures, and support.
Despite all this, I often wonder why I must suffer. Sometimes, I feel hopeless. However, together, we can prepare ourselves to counteract that old master in new ways. We may not see it in our lifetimes, but perhaps we can offer hope to those who come after.