Unfixable Brains: Attaining Normalcy in Daily Living with Seizures

• In Event: Well Years, Good Years, Quality Years – Calibrations and Aggregations of Daily Living: Daily Living

Abstract

Medical specialization and finicky drugs have created a distinct group of patients: the unfixables. In the past, these patients with difficult chronic conditions were discharged from clinics as unsolvable problems, but now remain under close medical care. For children living with seizures, the frequency of seizures and response to medical treatments indexes whether a seizure- and medication-free life is possible. Children, parents and clinicians oscillate between managing hope that a better future is possible and uncertainty that such a future is attainable. Based on 150 video-recorded clinic consultations, we examine how clinicians foreshadow whether epilepsy is fixable. Physicians set an outer boundary of hope for children's daily lives positioning them on a continuum of "fixability" with likely fixable as the most optimistic and likely unfixable as the most pessimistic position. We examine how clinicians and parents set measures of success for each group and negotiate a care relationship, even in the instances where the child can no longer aspire to a seizure free daily life.
This research speaks to how the clinic emerges as a site of articulating a range of neurological selves where technologies and medical knowledge differentiate people living with seizures on an axis of fixability. We examine how this neurological axis then reverberates to the possibility that the child will be unable to drive, work or live unassisted. As such, this research speaks to the STS focus on neurological personhood and how it is negotiated between health professionals and those living under the specter of neurological unfixability.

Authors

• Stefan Timmermans

• Tanya Stivers, UCLA