Chronic Pain - Friend or Foe?

Grandpa was an amputee. He lost his leg while working on the railroad as a young man. When "coupling" two railroad cars together, he fell and his leg was crushed between the couplers. He was hauled into the railroad station. A doctor sawed off his leg right there and then (according to what my dad said) after giving him copious amounts of alcohol.

I never knew my grandpa until I was a young adult. I went to live with him and other family members 3,000 miles from home as a young air force wife. I was pregnant at the time, and afraid of the pain of childbirth. I knew grandpa still had pain from his amputation, even in his 80s. I asked him how he could tolerate it so I might have an idea of how to prepare myself for labor. He told me he "made friends with" his pain. He said, he learned to accept his pain better when he decided to stop hating it. I thought that to be very odd. I knew amputees had something called phantom pain that could be quite intense. I admired him for his strength and fortitude.

A couple years after grandpa died I was facing major surgery for bone cancer. (Chondrosarcoma) The doctor told me he would have to amputate half my pelvis, plus my leg. This is called a hemipelvectomy. Quickly, I decided I wasn't going to let this amputation destroy me. I told myself, "If grandpa could do it, so can I!!!" Otherwise I would have been devastated.


As it turned out, I only had a portion of my pelvis amputated (internal hemipelvectomy). I didn't lose my leg after all. Nevertheless, I still have pain now almost fifty years since diagnosis. Like grandpa, I've made friends with my pain. I pay attention to the need to rest. I respect the messages I have gotten over the years that there are certain things my body cannot do, no matter how hard I push. I accept those limitations regardless of what others think. After all, I appear to have a normal body to them. I pay attention to the degree of pain I experience and when I need to medicate myself to help it be relieved, I take something for the pain. Though I prefer to not take opiates.

The pain never goes away entirely. It's always there to some degree. My friend. My shadow. My pain. Lately the pain has been intensified these last few months. It wakes me up in the middle of the night. It suddenly cripples me in the midst of walking. I can barely tolerate it. I calm myself, take a breath, unclench my teeth and I remind myself that hating it will do me no good.

Right now, I have to hang on two more weeks. I have an appointment for an epidural infusion into my spine so that my pain will (hopefully) go away. I have had this procedure many times before over the years. I have always had relief. It helps me stay off the opiates. But now, the epidurals are almost an annual occurrence. You can only have so many epidurals within a certain period of time. Waiting out the time for the treatment has been very distracting. But soon, my friend and I will part ways. I wont miss her at all. Thank you grandpa for teaching me to deal with pain in your unique way.

MY PROTECTOR

MY PROTECTOR
(1968)

Dr. Mindell, tall, slender, well-composed, did not behave like a normal orthopedic Surgeon.  The one’s I had met before were all too high and mighty to be human, to look you in the eyes as if you were an equal.  They were accustomed to everyone idolizing them and took it for granted they were Gods.  I did notice that when he made rounds, he carried a little bit of that remote untouchable aura, probably for the sake of his entourage, but when he arrived in my room, he did not stand at the farthest corner nor at the foot of my bed like other physicians.  he came right up beside me and leaned against the mattress as he taught his students about the rare condition being treated.  Rare condition or not, in the presence of Dr. Mindell, I still felt like a human being, instead of a “case”.

Even though’ he hacked away  a large part of my body over several years of surgery to save my life, I don’t necessarily think of him as my protector for the reason of his medical expertise. Just one incident clings to my memory making me grateful for his existence.

After many weeks languishing in the hospital bed, I became well enough to be placed in a wheel-chair instead of a gurney to be transported to other departments for tests or treatments. One day, after a long wait in the radiology dept.  a staff-person wheeled me in for a set of x-rays.  And when all the required pictures had been taken, I was wheeled back and parted in the long empty hallway.

 “Aren’t you taking me back to my room?” I asked.

  “No.” I was told, “Someone else will take you up shortly.”

I sat there in the cold corridor until my butt became numb and the pain in my legs screamed for release.  At which point, I unlatched the lock on the wheels and began to impel myself toward the main hallway.  My arms were weak from having been abed for so long.  The chair, at least a hundred years old, was made of wood, with a very high backrest and huge wheels.  It was very unwieldy to operate, but, struggling mightily, my determination drove me further and further away from Radiology.  It surprised me that no paid any attention to me.  Dressed only in a short backless gown with hair splayed about my head, it was obvious I was a patient making her way alone in the busy hallways.  Visitors passed me by giving wide berth.  Hospital personnel bustled by sometimes blindly brushed up against me
as they passed.

I grew resentful.  Not only had I been forgotten, left to rot in the drafty bowels of the Hospital basement, but I was for all purposes, invisible to the very people employed to watch after my health.  What if something should happen to me?  I would be ignored.  Fearful of my invisibility, I strained harder to reach my goal;  the huge main elevator that could take me up the many floors to my room. By the time I arrived, I was weak, cold and perspiring profusely.  The hospital, as ancient as my wheelchair had an old-fashioned elevator.  Every time I had been taken to it by a staffperson, they had hurriedly forced the wheelchair through the open doors racing against time to get me inside, before the doors clenched shut.

There were no safety features as there are today, no magic eye to bounce the elevator door back open should someone or something attempt to pass through while it closed.  So, when the doors opened, people traipsed in as I struggled to wheel my cumbersome chair through.  Needless to say, the doors clamped shut on me just as I pulled my arms out of the way.  I looked at the people inside, who would not meet my eyes. It didn’t occur to me that this was serious, until the floor raised up beneath me and the wheelchair tilted precariously.

Not able to move my lower body in any way to save myself, I sat there helpless, as the chair began to crunch.  The only view I had at this point was the ceiling.  My last thought was, “after being heroically saved from the bone cancer and surviving, I am going to go by way of an elevator! Oh, well!” There was nothing I could do. I just resigned myself to my fate as I awaited my demise.

Just then, Dr. Mindell scooped me up in his big arms and carried me down the hall and placed me on the nearest gurney and personally returned me to my room. I don’t know what happened to the wheelchair or the people in the elevator. At the time I was too tired and sick to even care.  I was just glad that my protector, my body guard was there to save me.

One Step at a Time

One Step at a Time by Lenor Madruga Chappel

Lenor's story of living through extremely frightening circumstances is truly mouth dropping, amazing.

Not only did she face being diagnosed with a very rare bone cancer, chondrosarcoma, but the only effective treatment for her was a full amputation (hemipelvectomy) with surgical removal of her leg and a portion of her pelvis. During a time in my life when I was faced with the same diagnosis, and so discouraged,  I was given this book by my mother. It gave me the hope to carry on to realize a mother with children could not only survive, but thrive.

Lenor's story of how she dealt with her diagnosis, her surgical experience and her positive recovery is more than inspiring.

Though the diagnosis and surgical aspects of her story sound frightening, this book is not gory. It is uplifting and positive. It teaches by example how to get inner strength through such an incredibly devastating life circumstance. Even without facing such medical possibilities, this is a book for anyone to benefit from reading.

Can be purchased at iUniverse