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Story ID:3735
Written by:Kathe M. Campbell (bio, contact, other stories)
Story type:Diary/Journal Entry
Location:Broken Tree Ranch Montana USA
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Living With Ghosts
by Kathe Campbell

How strange to contemplate phantom as something that appears only in the mind, while pain is so real. Despite its ghostly connotation, phantom pain is as real as it gets. I should know, for as an amputee, I, like millions, am plagued with the certainty of it. For decades, doctors believed this post-amputation phenomenon was a psychological problem, but experts now recognize the physical cause for this pain -- that it actually originates in the brain. My life with the phantoms comes and goes with nary a warning, often with fantasies allowing my hand and fingers to seemingly move. Creepy! Other times, the burning and stabbing leaves me a whimpering mess, dreading the thought of it's random daily onsets.

My first experience with phantom pain occurred in the hospital while recovering from a ghastly accident. I mourned the loss of my dominant right arm as though someone near and dear had brutally succumbed. My surgeon warned that great pain often occurs within a few days after amputation, that some people find the pain and delusions decrease over time, others experiencing torturous bouts for many years. I wondered how the pain would haunt me -- how intense it would be -- how long it would last. I only know that when that devil hit during eight weeks in the hospital, it felt like being relieved of my arm while wide awake. It was the first and only time I let out a piercing shriek.

There seems to be great debate as to what causes phantom stump pain. I had two productive arms until the age of 65, and still experience urges to reach out and grasp objects with an elusive hand and fingers. I may never overcome this weird illusion as my brain still formulates the amputation and its perceived changes. The rewiring process of new circuitry connections still holds the remnants of my arm hostage. If there's any merit to the torments, they have taught me great tolerance for pain of any sort. The accident and surgeries themselves were nothing compared to bouts of the excruciating writhe straight up in my bed from a sound sleep.

My husband could barely stand to watch the demons in action. Since there are no wondrous drugs to waylay the certainty of the agony, my doctor sent me to pain management specialists. Treatments based on theory drug along for weeks and were dismal failures. Several medications ended in nothing but homesickness, thoughts that God had abandoned me, and a need to have my things and loved ones around me.

Antidepressants came next, then electro nerve therapy along with a host of further medications. I felt like a walking drug store and had trouble tolerating spin-offs. I determined to keep my psyche intact rather than cavorting around as a mindless zombie. Then weather changes and fatigue were examined, both proving unlikely sources.

Spinal cord stimulation was offered, an electrical stimulator implanted under the skin and an electrode placed next to the spinal cord. The nerve pathways in the spinal cord are stimulated by electrical current. This interferes with the impulses travelling towards the brain and lessens the pain felt in the phantom limb to leave only a tingling sensation in the arm. Rather than trying out electrical gadgets via spinal surgery again, I preferred holding onto hope the pain would lessen in time.

Stimulations of the brain, and even acupuncture fell short of my own ability to help myself in prayer and practice writing left-handed via crossword puzzles. For if you've never been a praying person, phantom pain will send you to the Lord quickly. I figured if all this pain originates in the brain, maybe I should keep it busy enough to crowd out the ghosts. My ever present angels flourished in the reality that I was still alive, anxious to fit a prosthesis, and get back to the business of living. Yes, my angels, for I firmly believe they are still present today in all that I tackle in life.

For a long time I dreaded family and friend get-togethers for fear I would embarrass us all, for without warning, I grasped my hook and rocked in agony. Uncontrollable and massive amounts of tears gushed through helpless floodgates those first years. How strange it was to abruptly spill that much water in mere seconds without sobbing aloud. My grandchildren were mystified and powerless to help while I periodically fled to a quiet place where they stroked my head and sobbed. The pain slowly eased, allowing me to hang tough, then the gasping for fresh air and smiles of relief for hopefully another day.

Whereas I had nearly given up on artwork, needlework, writing, and riding my ATV or snowmobile, the family jumped in to save my bacon. I persevered left-handed despite the awful news that rheumatoid arthritis had settled in. My play toys were equipped with left side handlebar throttles and a right side gizmo to fit various prosthetics. I continued pecking around daily on a computer, and even took hook in hook to crochet sweaters for grandchildren. Haltering the critters is still arduous, but I gradually manage, if they'd just stand still! Contentment with cumbersome daily chores are contests that rarely spawn painful episodes, for the phantoms mostly prefer the quiet times. Along with skillful use of several prostheses, managing the burden has been the greatest challenge of my life.

There's no doubt about it, the severity and frequency of my phantom pain is decreasing. Moreover, I have learned to handle the demon within. Most of the time nary a soul would even recognize the twinges and sharp surges going on up and down what's left of an arm. And I delight in telling all who will listen that my angels of mercy abide with this poor wretch daily, goading, encouraging, fluttering sweet wings upon incessant and unfixable miseries.

Recently, while spending days in our local hospital for rheumatoid therapy, I noted that the Pain Management Department was continually busy. Just like the Pain Management and Orthotics Departments in our veterans hospitals today, for every time I see our amputees struggling with prosthetics on TV, I bawl like a baby. How bravely our heroes work to get back to their own business of living.

Some patients are happy with results of pain management for various mental and physical afflictions. Others are as I, impatient and anxious. I know it is my own tenacious spirit and deep faith in all the things the good Lord has bestowed upon me that helps me cope with the intolerable. Now that they have haunted me these ten years, I tolerate the ghosts that defy my very soul.

Shorter version published in http://www.medhunters.com/authors/campbellKathe.html
Proudly, Living With Ghosts has been used as a coping tool for other amputees.