April 21, 2008
60, Number 28
April 21, 2008
Revealing pain undoes a social fiction
Nancy Eiesland returns to her duties as associate
professor of sociology of religion at Candler School of
Theology after nine months of medical leave.
You are about to learn more about me than I should prudently tell a perfect stranger.
TMI — too much information — is how our self-help society believes we use our experience to aid others. Being a sociologist makes it possible for me to diagnose this reality, but it doesn’t make me immune to its power.
For the last 18 months, I’ve been in the fight of my life to best a drug-resistant staph infection that had invaded my spine — where I had years before had metal implanted to keep me upright.
Colleagues and acquaintances who knew my status as a person with a disability would often say, “I don’t think of you having a disability.” Of course, their misguided compliments gave me fodder for the truth-telling that they (like many) participated in the misapprehension that being capable and intelligent was incompatible with being a person with a disability.
But over time, I have realized that I was a collaborator in those stories; many people trotted out this old saw because I didn’t think of myself as a person with a disability, though I had long identified as one. I had learned to overachieve, so that my competence was unassailable and my independence was a marker of a true blue American.
As a toddler, I began the operations that were to eliminate my birth defect. But soon the one constant in my body was the register of pain.
In the effort to first quantify and then control pain, the medical world created the insidious pain faces scale. If I’m an 8 am I obliged to drum up tears to begin to approach the picture to be truly convincing? I could never fix a number to pain, nor did I do well with the multiple choice approach. I always imagine a Freddy Krueger slasher scene during which he might stop and ask me if I’d prefer to be stabbed, burned or beaten.
While a physician may need us to give pain a number and an approximate manifestation, our common work is to construct a social fiction. Social fictions are not false account; sometimes they are experienced as more real because of their co-constructed power. Our social fiction is that, in general, pain can and should be treated and undone.
Obviously, serious critical pain ought to be aggressively treated, but what about life-long pain? After my 11th surgery when I was 13, my surgeons stopped telling me that their cutting would make me pain free. Pain had become my life’s poltergeist — as noisy and mischievous as any spirit that might pop up in the random television. It was my real disability, but one that I couldn’t mention to those good folks who didn’t think of me that way.
Compassionate physicians and psychologists sought to help me control my pain. Despite my ability to do biofeedback on a dime and to compartmentalize better than the Container Store, pain never gave way to my commands.
Mostly I started taking pain medication. In my 44 years, I have tried every legal painkiller. Most of them I liked, because they helped me keep the fiction. I could name myself a person with a disability but I didn’t feel dependent, needy or idle — our society’s real markers for disability. I could use pain medication to return to doing everything that I wanted in my life; and when pain first oozed in and then exploded on the scene, these meds made it possible to keep me going when pain said “Stop.”
My stop came when dependence joined my pain, and that drug-resistant staph infection necessitated first long-term hospitalization, multiple surgeries, and then a medical leave. I was an idle, dependent cripple in pain. Nobody said, “I don’t think of you as someone with a disability.” For some, it became the only diversity that mattered, it trumped my past productivity and former independence.
However, many more Emory friends cared deeply for my family and me during this time. Professors Regina Werum, Cathy Johnson, Liz Bounds, Bobbi Patterson and Carol Newsom simply did whatever we needed to keep body and soul in reasonably close proximity to one another. They helped me to know that my life’s story wasn’t pain, and I had to take proactive steps to put pain in its place.
I will continue to be a person with a real disability as I return to Emory waist-high in the world in order to preserve what remains of my spine. I have had skilled, committed and mostly kind Emory Healthcare physicians who have worked desperately hard to get me to where I am. Doctors Juliet Kottak Mavromatis, Patricia Baumann, John G. Heller, James Roberson, Dale C. Strasser, Bruce S. Ribner, Thomas H. Dodson, and numerous others worked beyond their oaths and obligations to aid my recovery; any failure of health, will, or wit is solely my responsibility.
I am excited to return to Emory for the wealth of intellectual conversations and new students after a year of home confinement. Yet I return with less faith in vague theories of mutuality and interdependency built mostly on expectation of mutual equality, at least in the long run.
We must think more and better about how to counter the humiliation of long-term vulnerability and dependency and how to reverence physical idleness when necessity requires. These tasks are some we are taking up at Candler with Dean Jan Love’s support of disability studies in religion.
Finally, I return with pain, but for the first time in at least five years I do not come back on pain killers, mood elevators, or other pharmacological means to dull the ache. I say these things neither to inspire, invite your sympathy or disapproval, nor to chisel into your life in any way. I offer here my experience of pain to remind us that for most of us pain will be an ordinary partner in an ordinary life. The social fiction that long-term pain ought to be treated with more and better drugs is an attractive one.
But even when it is severe and unremitting, I am persuaded that pain is a better friend than is the pain killer. As my life began to reveal, one never can be sure what else within you dies when you try to kill the pain.