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 have been plagued with the certainty of it. 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. 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 leave me a whimpering mess, dreading the thought of its random daily onsets.
My first experience with phantom pain occurred in the hospital while recovering from a ghastly accident.
The spring day had begun when I told my ailing husband I was going out to beef up the stallion's fence, for a moose or elk had knocked it galley-west during the night. Smart Ass was our 800 lb. jackass who, along with three others on our place, had recently earned the much coveted "National Donkey and Mule Hall of Fame" award.
Mid-morning I drove my ATV to the west pasture, and unlocked the jack's gate. Smart Ass came over for a rub between his ears, then left to savor new sprouts of grass. Then in an unthinkable flash the stallion had me brutally pinned on the ground with only my head and right arm exposed. I attempted to free the other arm while he ferociously gnawed my forearm, but his 800 pounds had me trapped.
With heart pounding and all the strength I could muster, I freed my left arm, bellowed in the beast's ear and wrapped a shaky hand around his nostrils to stifle his air. He didn't like that and quickly got up, but not before rendering severe damage to my shoulder and neck with his hoof. Then, as suddenly as it all began, this much treasured jackass walked away without a bye or leave.
It could have only been a band of angels who delivered a cooling breeze, and helped me safely out the gate. Holding the grisly remnants of my arm close, a feeling of utter relief swept over me knowing there was a fence between me and the beast. Mercifully, shock overtook the fury of the morning, for I felt no pain and began cajoling myself into thinking I could steer an even course across the yard. With head reeling and knees buckling, I staggered onto our deck, opened the storm door, and collapsed.
I faintly recall beseeching the orthopedist on call not to take my arm off. If family hadn't intervened, the surgeon would have amputated at the elbow. I didn't improve, for the doctor refused me blood stating it was tainted. Unbelievable and, of course, untrue. Also about this time our oldest daughter requested a by-pass to harvest a healthy vein from my leg to detour the crush. The common procedure was vehemently declined.
The next day my fingers were losing their color, and the family insisted on a second opinion. The doctor rejected that idea as well, arrogantly maintaining he was the best there is. The war was on!
One of my nurses called my daughter at home with names of several arm and hand surgeons, encouraging her to have me transferred. My angel was on top of the crisis and made arrangements to have me airlifted to Deaconess Medical Center. Of course, there had to be one incredible last straw. The local doctor refused the airlift, even though the Deaconess surgeon felt every hour was crucial for a successful outcome. Our son turned his SUV into an ambulance while the rest of my angels comforted me on the ghastly four hour journey.
We arrived at Deaconess amid a gala open house for their board and patrons celebrating a beautiful new addition. Stares of disbelief followed our little entourage as my angels rolled my bedraggled remains through the lobby in a stained hospital gown, ratty old blanket, and bare feet. If my life wasn't hanging by a thread, I would have surely died of humiliation.
The hand and arm surgeon arrived immediately, examined my arm, and ordered x-rays and plasma. The children asked about a by-pass and he looked stunned. "Of course," he replied, "that's what I do for a living!" He patted their hands reassuringly and rushed off to study x-rays. After I was stabilized the by-pass was performed. We all had expectations for a miracle, even though some of my fingers had begun to turn black.
Each day, while losing one finger at a time, I assessed my options feeling that three, or even two fingers, would serve me well, but it wasn't to be. My family stood vigil as my arm was at last amputated several inches above the wrist. I think we all knew it was inevitable. Excessive delays caused by the egotistical and inept doctor on call had closed the window of opportunity forever.
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, 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 felt like being relieved of my arm while wide awake. It was the first and only time I let out a piercing shriek.
My husband could barely stand to watch the demons in action. Since there are no wondrous drugs to waylay 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. 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, 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 of my own ability to help myself in prayer and left-handed practice writing in 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. 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, 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, then the gasping for fresh air and smiles of relief for hopefully another day.
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. Haltering the critters is still arduous, but I gradually manage, if they'd just stand still! Cumbersome daily chores are contests that 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.
I may never overcome the weird illusions as my brain still formulates the amputation and its perceived changes, for the rewiring process 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 an excruciating writhe straight up in my bed from a sound sleep.
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 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 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.