Living With Ghosts

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Written by: Kathe Campbellęcopyright, all rights reserved

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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, have been plagued with the certainty of it. My life with the phantoms comes and goes with nary a warning, often with fantasies allowing my hand and fingers to seemingly move. 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. Some people find that the pain and delusions decrease over time, whereas others experience them 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 and hands until the age of 63, 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 formulates the amputation and its perceived changes. The rewiring process of new circuitry connections still holds the reminents 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 rising straight up out of 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. Several medications ended in nothing but homesickness and the 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. Weather changes and fatigue were examined, both proving unlikely sources. Stimulations of the brain, and even acupuncture, fell short of my own ability to help myself in prayer and learning to write left-handed. My saving grace flourished in the reality that I was still alive, anxious to fit a prosthesis, and get back to the business of living.

For a long time I dreaded family and friend get-togethers for fear I would embarrass us all as I grasped my hook and rocked in agony. Uncontrollable massive amounts of tears gushed through helpless floodgates those first years. How amazing it was to abruptly spill that much water in mere seconds without sobbing aloud. My grandchildren were mystified and powerless to help while I rushed to a quiet place. The pain would slowly ease, 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 rheumatoid arthritis settling in. My play toys were equipped with left side handlebar throttles and a right side gizmo to fit various hooks. I continued pecking around daily on a computer, and even crocheted 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 never spawn painful episodes, for the phantoms 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 has decreased some over the last few years. 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 inside. Mindful of the moments they too suffer, I shed tears for our troops learning to use the latest state of the art limbs. How bravely our resolute heroes work to get back to their own business of living.
Recently, while spending days in our local hospital for rheumatoid therapy, I noted that the Pain Management Department was continually busy. Some of the patients were happy with results for various mental and physical afflictions. Others were as I, impatient and anxious. I know it was my own tenacious spirit that coped with the intolerable. And now that they have haunted me these ten years, I tolerate the ghosts that defy my very soul.
ę-2005 Kathe Campbell
The following note accompanied this story from Kathe: Dear Hearts........a friend writes me of sad news this morning. Her niece, 33, has taken her own life due to her inability to tolerate phantom pain after losing her leg. It's so hard to understand this phenomenon, so I'm jumping in to hopefully help with this piece published in a medical journal recently. Say a prayer for this girl, for I know the Lord is forgiving her and enfolding her new body in peace at last. Kath




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