Living With Ghosts

My first experience with phantom pain occurred while I was in the hospital, recovering from a ghastly accident, which resulted in my dominant right arm having to be amputated. My surgeon warned that severe pain often occurs within a few days after an amputation, and some people find that the pain and delusions decrease over time, whereas others experience them for many years.

When that devil first hit during my eight weeks in the hospital, it felt like I was being relieved of my arm without anesthetic! It was the first and only time I let out a piercing shriek.

My life with the phantom comes and goes with nary a warning, often with fantasies that I still have a hand and fingers that I can move, but at other times, it comes with burning and stabbing that leaves me a whimpering mess. The accident and surgeries themselves were nothing compared to these bouts pain, which can make me rise straight up out of a sound sleep.

My husband could barely stand to watch the demon in action. Since there were no wondrous drugs to waylay the certainty of the agony, my doctor sent me to pain management specialists. Several medications ended in nothing but 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. Weather changes and fatigue were examined, both proving unlikely causes. Stimulations of the brain, and even acupuncture, fell short.

For a long time I dreaded get-togethers for fear I would embarrass us all as I grasped my hook and rocked in agony. For those first years, massive amounts of tears gushed uncontrollably through helpless floodgates. How amazing it was to spill that much water in mere seconds without sobbing aloud. My grandchildren were mystified and powerless to help. The pain would slowly ease, then I would gasp for fresh air, and smile in relief, hoping for peace for another day.

I was saved by the reality that I was still alive, anxious to fit a prosthesis, and eager to get back to the business of living. When I was about to give up on artwork, needlework, writing, and riding my ATV or snowmobile, the family jumped in to save my bacon. So 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! Strangely, I find contentment with cumbersome daily chores, because they never spawn painful episodes. The phantom prefers the quiet times.

So along with becoming skilled in using several prostheses, managing the pain 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 the soldiers who are also learning to use the latest state-of-the art limbs.

Recently, after 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. In my case, over the past 10 years, I know it has been my tenacious spirit that has helped me cope with the intolerable.

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