Historians with Pain
Surely it is a truism of our profession: the overwhelming majority of the people we study are dead. In general, when we embark on a research project we do not have to ask permission from the committee on campus that oversees medical or scientific research on the living. But for the past five years I have been involved as a traditional historian in a project that brings our skills into uncharted terrain, the study of children today living with chronic pain. Let me try to explain what happens to our skills if a project involves only the living, and everyone of them is a child dealing with serious pain. These are children and families who have been seen by multiple doctors and their pain condition judged so intractable as to need the attention of a pain clinic. Clearly, you might say, when I describe historians involved with living subjects, I am referring to what is commonly described as the work of the oral historian. This is true, but I am also suggesting here that the distinction between "ordinary" historians and oral historians may mask the fundamental similarities of all historical work. Certain life experiences, such as, in particular, working with human beings in pain, may also enable us to hone our skills as narrators of the past, and as its interpreters.
The Interdisciplinary Pain Project at UCLA, as far as we know, is unique and the first of its kind anywhere. Funded by the National Institute of Mental Health, it draws on multidisciplinary skills found among medical and linguistic anthropologists, medical sociologists, oral historians, and a new breed of medical doctors and psychologists who see chronic pain not as psychosomatic, nor as a symptom of something else that is wrong, but by virtue of its intractability, the pain itself becomes the disease that must now be treated. Historians of science and medicine have known for some time that the experience and expression of pain has deeply cultural variations and specifics. Back in the late 1990s I tackled the old problem of why the first users of nitrous oxide—Humphrey Davy, Thomas Beddoes, and their friends, the Romantic poets William Wordsworth, Robert Southey, and Samuel Taylor Coleridge—inhaled what we call laughing gas systematically for pleasure, but never applied it to pain. Did they not care about pain, as some historians claimed, or had it just become accepted and naturalized in ways that we would find intolerable? Predictably, the answers proved to be much more complex than the question. In fact they had come to believe the gas to be dangerous, but more important, Davy's laboratory notes show that the impure gas he was using induced unpleasant, even painful, sensations. The old adage that pain—in a society where opium and alcohol were about its only palliatives—just did not matter to a hardened age, clearly needed refinement.
What has this got to do with children today in Los Angeles living with chronic pain, and with the historian's craft more broadly? Whether in 1800 or today, pain beats out its temporality as surely as does the heart. Its debilitating effects measure life's passage while compelling a child to invent a new self-narrative about past and future totally at variance with the secular narratives we have come to expect in the historical time of youth, in any contemporary era, in any culture. When one is in chronic pain, the future becomes dim, best left without fantasy, or possibly to be dreaded. The past becomes a story about when the pain began, when it got worse, how bad it is today. While the posture of postmodernity may have conditioned us not to think of time and history as progressive, nothing in modern philosophy equips the historian to imagine youthful time, new time, as a declination, a passage not to maturity but to debilitation, the inability to cope with school, even with family and friends. Pain may be culturally expressed flamboyantly, stoically, bravely; it may be hidden, but it is always real. When present chronically in the young, it forces the invention of new narratives. Put another way, if the human condition had decreed youthful pain as the norm for the day-to-day life as lived, then it is doubtful that the modern Western narrative of historical time we currently possess—a place of great hardship but where progressive development is possible—would ever have made its appearance in our consciousness.
The project upon which we have embarked tries to understand how our subjects in pain construct the narrative of their lives, and, if aided by their time in the clinic, the narrative of their lives with less pain or without pain.1 To be sure, our methods require oral history, interviews before, during, and after treatment. But our goal is not simply the descriptive recording of a life's events, or even the bearing of witness to past events (as the Shoah Project about the Holocaust so eloquently sought to chronicle). Such projects are often associated with the use of oral history. But we are trying to take oral history in new directions, to reconstruct how narrativity itself is shaped in these conditions, under chronic pain—under duress, as it were. We are trying to recapture the stories that youthful subjects themselves tell about themselves, but also about the world. We want to understand historical consciousness as it takes shape, but in conditions distinct from "the normal," different from what most of humanity in its youth would experience. Perhaps it is not accidental that one of our most important advisers is Michael Nutkiewicz, for a time the chief oral historian of the Shoah Foundation, who was also trained in traditional history at UCLA.
One of our other goals is also to try to understand better the working of the pediatric pain clinic, one of only about 20 in the United States. Measured quantitatively ("describe your pain on a scale of 1 to 10, 1 being the least"), it has a high success rate. Qualitatively, we want to know why, how is it that children who generally are seen for about six months at the clinic tend to achieve a greater "self-efficacy"—to use the technical term employed by the grant we have received from the NIMH—and how that change figures in a new self-narrative. Note that the clinic is also a very complex setting, employing unusually long intake interviews of the child and family, conducted by two doctors (which we capture on video), as well as traditional pharmacology, yoga, bio-feedback, acupuncture, and psychotherapy—in short what is least invasive, but also works. We want to suggest that historical analysis—and the analytic methods of our colleagues in anthropology and sociology—may be able to evaluate this complex treatment model more fully than the structured quantitative techniques usually employed in clinical research. We are also using quantitative evaluation, based on written questionnaires completed by each child and parent, to support and also to challenge our hypotheses.
Our historical analysis begins with the child and family, once they consent to the study and the campus committee approves our intervention. They are interviewed before they are even seen by the doctors. We build up a set of narratives, spoken by the child and parent in response to the historian's questions, at the filmed intake interview, and at a series of follow-up interviews. All the interviews with all the children are "coded"; that is, we try to discern patterns in these narrations by labeling terms, expressions, values, beliefs, hopes, and fears that may be recurrent—not just in the interviews of one child but conceivably of all the children. In effect, with the aid of modern technology, we are attempting to do to these texts what can now be done to primary sources in databases like ARTFL (which makes possible a word search through thousands of early modern French texts, for example). The codes and patterns emerge from the stories of the children and parents; the historian's questions open up topics and encourage expression, but make no attempt to structure the interview to fit any template. As the researchers compare codes and patterns across interviews, a set of themes emerges and it becomes possible to make tentative generalizations, as one would in working with any set of historical texts. The coded narratives become our primary sources. The historian's skills have more applications than our traditional graduate education might suggest, and historians working with chronic pain may be able to shed light on its debilitating effects on the self. With that light may come just a little more hope.
—Margaret Jacob is professor of history at the University of California at Los Angeles.
See also K. A. Krall, L. Ayres, A. M. Gallo, L. H Zoeller., and B. J. Breitmayer, "Learning from stories: Parents' accounts of the pathway to diagnosis," Pediatric Nursing 21 (1995), 411–15;
C. Mattingly, "The concept of therapeutic ‘emplotment,'" Social Science and Medicine 38 (1994), 811–22;
S. A. Sartain, C. L. Clarke, and R. Heyman, "Hearing the voices of children with chronic illness," Journal of Advanced Nursing 32 (2000), 913–21;
L. K. Zeltzer, J. P. Bush, E. Chen, and A. Riveral, "A psychobiologic approach to pediatric pain: Part I. History, physiology, and assessment strategies," Current Problems in Pediatric Pain 27 (1997), 225–53.
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