Striving to live well with chronic neuropathic pain managed by a neuromodulation technology

Abstract

Living with chronic neuropathic pain as it is managed by spinal cord stimulation (SCS), which is a type of neuromodulation technology, is an intricate and entangled matter. Relying upon ethnographical fieldwork conducted in a Dutch regional hospital in 2012, I mobilise a phenomenological framework to attend to three intertwined dimensions that constitute such an experience. An account of what it means to be living with SCS cannot dispense with previous experiences of chronic neuropathic pain and chronic neuropathic pain managed with analgesic medication. Although seemingly in the past, they actually inform one’s present and future considerations and fears. While living with chronic neuropathic pain and chronic neuropathic pain managed by medicine are characterised by disrupted bodily intentionality (“I cannot”), SCS is experienced as a “reworlding” marked by “I can.” Such achievement is however neither straightforward nor absolute. Rather, not only does it require continuous attentiveness to one’s body and bodily feel, but living well with chronic neuropathic pain managed with SCS also requires a “disentanglement work” (Oudshoorn, 2020) from potentially harmful devices and people’s gaze. “I can / I cannot” does not solely reside with one’s painful body but is also the result of disabling sociomaterial encounters entailing misfits (Garland-Thomson, 2011).