The Elusive Dolorimeter: Trials and Tribulations in Measuring Phantom Limb Pain

• In Event: Injury and Invisibility: Empiricism and Anti-Empiricism in Knowing Damage and Regeneration - II

Abstract

Phantom limb pain (PLP) refers to the painful sensation an estimated 80% of amputees perceive as arising from their missing limb (Ephraim et.al. 2005). As its name suggests, PLP conjures up the surreal, ghostly, invisible, “not there.” The phantom’s persistent immaterialism speaks to pain’s immaterialism—both defying and demanding representation as a site of biomedical intervention. This paper takes PLP, and the experimental development of a technology designed to treat it, as springboards to critically consider a transformation: from deeply subjective experiences of pain into quantitative data. Drawing upon ethnographic fieldwork, I examine a multi-sited clinical trial based in Gothenburg, Sweden using machine learning, virtual reality, and neuromuscular activation to treat PLP. I analyze the many tools—from questionnaires to fMRI brain images—scientists enlist to transform pain’s unwieldy language into data. Pivoting from the myopic and dead-ending representational question—what is pain? — I argue for another line of inquiry: What gets left out, in attempts to measure what we call pain? And what gets created in the void it leaves? The “datafication” of PLP offers ripe territory to consider not only how we measure subjective sensory experience, but what effects this objectification has on our experiences with pain. In other words, what might happen to our theorization and understanding of pain(s) if we ask not what pain is but what the measurement of pain does? I also reflexively examine the affordances of ethnography in pain studies, while critically tending to the unique forms of “data” it also creates.

Author

• Alexandra Middleton, Princeton University