Guest blogger: Felice Indindoli, MS-PREP 2015, MAc 2015, Tufts University School of Medicine, Pain Research, Education and Policy Program
Raring to go! That’s me. Upon entering the MS-PREP program I made quick work of getting a grant and press pass to fly out to the PainWeek Conference, 2013, in Las Vegas. It comes with my territory; jump with both feet or don’t jump (it hurts more when you leave a limb behind) and it was time to immerse myself in the goings-on in the world of pain research.
My prior ventures into pain research and theories about pain were mainly on the literary side. Great writers have said great things about the human experience of pain with full realization that cosmic irony applies; language fails us in the face of pain. From the point of view of narrative, this is a massive conundrum. A lot can be said about that, or nothing.
Off I went to PainWeek with an editor’s sense of story development. I was eager to report on the conference. And, as someone not new to the learning process, I wanted to discover just what I’d gotten myself into pursuing both research and clinical degrees in pain management.
Kid in a candy store. That was me at the conference. But, in wrangling with the mountain of new material I had to absorb, fascinating though it was, I found myself in an odd place: speechless. Looking back, it was an apt response (or lack thereof and still appropriate) in the face of so much new information. Odd how it seemed to parallel what I knew from literature about the language of pain, the metaphors and analogies all refer to the evaporation of meaning in language. Words mean nothing. Or, given a state of pain, one has no words at all.
I left the conference with my memory and laptop stuffed with information about pain research. The second year of my acupuncture program was already in session and I’d just missed a cool week of class and lab to attend the conference. As I started to unpack what I’d learned, the writing process turned swiftly from thinking about what I had learned to, “what was I thinking?” in taking on a full week of pain research. Ouch…no pun intended.
Some of the most thought provoking talks at the conference were subjects I would soon tackle in PREP classes, under the tutelage of highly experienced teachers and mentors, which proved essential to my gradual understanding of the landslide of pain information I had subjected myself to…willingly, I might add. The following topics were of particular interest:
• Learning to Unlearn: How Coaching is Changing the Pain Management Landscape
• When Does Acute Pain Become Chronic?
• The Complexity Model: A Novel Approach towards Improving the Treatment of Chronic Pain
• Glia and Chronic Pain
• Teaching the Five Pain Coping Skills
• The Mad Woman in the Attic: Pain and Personality Disorders
• Chronic Pain in Children: Are they a Population at Risk?
• Drug Diversion VS Pain Management: Finding a Balance
• Opioid-Induced Hyperalgesia: Clinical Implications for Pain Practitioners
• Rational Polypharmacy
• Interview with an anesthesiologist and researcher working on a new drug NKTR-181 (now in phase 3 trials): taking the likeability out of pain medication via slow rate of entry
• Living on the Edge: Depression, Pain, and Suicide
The above lists only a handful of the talks I attended during the week-long conference. But, hopping from bullet to bullet, this list traces my learning curve in the PREP program. Pain topics in 2013 have not fallen off the table in 2015; they remain relevant.
What did I know before I started the PREP program? As I mentioned, reading about the human experience of pain from the literary side only goes so far in the understanding of that experience from the clinical side, the pragmatics of what it means to diagnose, treat, and manage pain. What I did not know before the PREP program is that each time one approaches a patient with a pain dilemma, one immediately steps into a minefield of several other issues. The ripple effect was new to me. Pain isn’t separate from anything—it’s a cause and an effect. I began to understand this concept during the PainWeek conference and it was hugely motivating. I was also starting to see patients as an assistant and then intern in my acupuncture training—the “ah-ha!” light bulbs were going off everywhere. Almost too many to manage. For a newbie, the deep-dive into pain research, education and policy brought me to a place of near blindness. Education shines a very bright light on the unknown…you do the math.
The 12 bullets listed above weren’t just talks I attended at the conference; they represent opening lectures in my education on pain. Concepts in ethics and culture that I knew from literary references were turned, virtually overnight, into case studies on the impact society and our ability to listen to medical narrative have on the pain patient. Haruki Murakami, in his book 1Q84, says, “I can bear any pain as long as it has meaning.” For a healthcare practitioner, this is the hallmark of bearing witness: enter Social and Ethical Aspects of Pain, PREP 232, with Pam Ressler and Dr. Libby Bradshaw. This was the class in which I discovered my capstone topic (though I didn’t know it at the time). I remember admitting to Pam that my topic was messy, disorganized, big holes in the research, more questions than answers and that perhaps I shouldn’t “go there.” Her answer was, “perhaps you should.”
Topics on pharmacy and medicine that had been the subject of my pre-med studies, an interest in the history of medicine, and web content on parenting, were addressed in detail in Neuroanatomy and Neurochemistry of Pain, PREP 230, and Introduction to Clinical Pain Problems, PREP 234, with Dr. Dan Carr, Ewan McNichol, and Dr. Steve Scrivani. We examine the physical, the empirical while understanding that the experience and expression of pain do not survive our granular look at the specifics; in fact, they seem to evaporate. More neurons, less person. More person, less neurons. Either way, we may try to get our hands on the shadow of pain left by a scar and chase it into a corner so we might label it, manage it, or at the very least identify it with nothing to use as a benchmark or basis of comparison. We understand that Palahniuk’s words in his nightmarish Diary, “We have no scar to show for happiness,” underscore the horror inherent in grappling with pain; happiness will not be found hiding under the scar or by following the pain once its neurological pathway is established–it’s somewhere else. Where, you ask? Cue the psyche.
On matters existential and psychiatric, I would point to Shakespeare for a juicy literary explanation that undoubtedly summed up a world of hurt in verse. This resonates with other literary critics, such as Elaine Scarry in her book, The Body in Pain. She suggests, “Whatever pain achieves, it achieves in part through its unsharability, and it ensures this unsharability through its resistance to language. [She continues] “English,” writes Virginia Woolf, “which can express the thoughts of Hamlet and the tragedy of Lear has no words for the shiver or the headache.” … Physical pain does not simply resist language but actively destroys it.” For all her insight into Virginia Woolf and the human body as a political map, Scarry didn’t make patients more real to me than evaluating them in Dr. Kulich’s class, Psychological Approaches to Pain Management, PREP 238. That mangled language left in the wake of pain can be even more difficult to interpret in those patients who struggle with disorder, in and of itself, applied not only to their expression of pain but also to their thought processes and mental health. I remember the talk given at PainWeek, The Madwoman in the Attic: Pain and Personality Disorders, which borrowed its title from the landmark text written by Gilbert and Gubar, with the intention of infusing a ruthlessly unfunny topic with some sense of humor.
Of drug diversion, complexity models, and clinical trials, I can’t say I have a good literary reference. I was enlightened, however (and not without some degree of pain) by two epidemiology and biostatistics classes, Professor Mark Woodin’s Principles of Epidemiology, PH 201, and Professor Janet Forrester’s Epi-Bio: Reading Medical Literature, HCOMM 502. I can return to the PainWeek slide presentation on NKTR-181 and make sense of the visual display of the quantitative analysis. This feels like a different type of accomplishment to me, like looking under the hood of a car and knowing what to do. At the same time, one needs to be able to reverse-engineer the information; take the information, understand it scientifically, express it and then turn it back into information accessible to a lay audience, perhaps a patient. Alia Bucciarelli was instrumental in helping me further hone my writing and editorial skills by using them to address scientific and medical information in a semester-long directed study in Advanced Writing for Medicine, PREP 400. We took the research from my capstone project and turned it around for parents of adolescent girls with chronic abdominal pain. It’s not a short journey from a systematic search in PubMed, to articles on pediatric abdominal pain, to interpreting the stats and overarching epidemiological issues, to analysis and back again but writing this time 5 truly cogent bullet points for parents in need of reliable information.
For the PainWeek talks that focused on educational issues and touched on healthcare policy, I was able to lean into some literary insights on pain. The discussions about children and chronic pain research as well as the pitfalls of trying to teach adult chronic pain patients coping skills, I would later learn in Dr. Srdjan’s Nedeljkovic’s class on Public Policy, Legislative, and Forensic Issues in Pain, PREP 235, were both examples of those minefields I mentioned earlier. Children and pain research, adults and coping skills to manage reliance on medication—instant ethics dilemmas served up with a side of forensics. For literary references, there are two that I like. One is from C.S. Lewis in his book, The Problem of Pain. He says, “Pain insists upon being attended to. God whispers to us in our pleasures, speaks in our consciences, but shouts in our pains. It is his megaphone to rouse a deaf world.” What can we do, what are we supposed to do when roused in this way for the sake of children who are sick and in pain? More concerning is what happens when we do nothing. Of all of the PREP classes I took, it was in this class that I found myself dumbfounded more often than not in the face of policies that both help and hurt, the clever maneuvering of legal language that sometimes, always, or never (you chose) lives up to the actions it purports to protect or expose. But, one must understand these things in order to navigate the minefield of pain issues in a given case—it’s never just one patient, with one problem, somehow in a vacuum. For discussions about pain and education in general, I will end with my favorite literary author on pain, Alphonse Daudet. His book, In the Land of Pain, written in the late 19th Century while suffering the final stages of tertiary syphilis, is a simple yet brilliant collection of the writer’s thoughts and feelings. It brings us back to the significance of language in the study of pain. Daudet asks, “Are words actually any use to describe what pain really feels like? Words only come when everything is over, then things have calmed down. They refer only to memory, and are either powerless or untruthful.”
This is the essence of what I learned both at the PainWeek Conference and in the PREP program: the value of listening. It’s the golden rule of pain management. Learn how to do it and why. Policy or poetry? You tell me. Actually, I’ll let my patients do the talking.
Add comment October 25th, 2015