51: Living with Ghosts

51: Living with Ghosts

From Chicken Soup for the Soul: Tough Times, Tough People

Living with Ghosts

It is far harder to kill a phantom than a reality.

~Virginia Woolf

How strange to call something “phantom” when it is so real. Despite its ghostly name, phantom pain is as real as it gets for an amputee. I have been plagued with the certainty of it these last ten years. For decades, doctors believed this post-amputation phenomenon was a psychological problem, but experts now recognize a physical cause for this pain—that it actually originates in the brain. At seventy-six, the phantoms still come and go with nary a warning, often with fantasies in which my hand and fingers move. Other times, the burning and stabbing leave me a whimpering mess, dreading the random daily onslaughts.

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 a few days following amputation, that some people find the pain and delusions decrease over time, and others experience 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 was the only time I allowed myself a piercing shriek.

I may never overcome the weird illusions as my brain still grapples with the amputation. If there’s any merit to the torment, it has taught me great tolerance for pain of any sort. The accident and surgeries themselves were nothing compared to the bouts of excruciating pain that make me sit straight up in my bed from a sound sleep.

Since there are no wondrous drugs to soothe the agony, my doctor sent me to pain management specialists. Treatments dragged along for weeks and were dismal failures. Several medications yielded 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 drugstore. I determined to keep my psyche intact rather than blundering around as a mindless zombie. Weather changes and fatigue were examined too, both proving unlikely sources of pain.

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 would be stimulated by electrical current, interfering with the impulses travelling towards the brain and lessening the pain in the phantom limb, leaving only a tingling sensation in the arm. Rather than trying out electrical gadgets via spinal surgery, I preferred holding onto hope the pain would lessen in time.

Stimulations of the brain, and even acupuncture, fell short versus my own ability to help myself by praying and by left-handed practice with crossword puzzles. For if all this pain originates in the brain, I resolved, maybe I should keep it busy enough to crowd out the ghosts. 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, for without warning, I would grasp my hook and rock in agony. Uncontrollable tears gushed from me those first few years. How strange it was to spill that much water in mere seconds without sobbing aloud. My grandchildren were mystified and powerless to help.

Whereas I had nearly given up on artwork, needlework, 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 hooks. I continued pecking around daily on a computer, and even took hook in hook to crochet ski caps for grandchildren. Daily chores rarely spawn painful episodes, for the phantoms mostly prefer the quiet times. Along with skillful use of prosthetics, managing the burden has been the greatest challenge of my life.

There’s no doubt about it, the severity and frequency of my phantoms 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 up and down what’s left of my arm. 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 like me—impatient and anxious. I know it is my own tenacious spirit and deep faith in all the things the good Lord has bestowed that allows me to cope with the intolerable. Now that they have haunted me these ten years, I tolerate the ghosts that defy my very soul.

~Kathe Campbell

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