Akissi Nzambi, “My bed: a safe haven and a net that keeps me trapped” (2020)
Image description: against a sky-blue background, cotton balls are laid out resembling a cloud or pillow. Below, stretched-out, translucent medical gauze is laid out in a rectangular shape, resembling both a bed and nets. Below, a caption reads, “My bed: a safe haven and a net that keeps me trapped.”
Clinical Proximities: ME/CFS and Viral Uncertainty
I am currently working on my first book manuscript, Clinical Proximities: ME/CFS and Viral Uncertainty, an ethnographic and archival dissection of the politics of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) in the US. It is the first academic monograph about ME/CFS, a neglected, but not rare, and debilitating disease.
Beginning from ME/CFS patient-activists’ “proximities” to the clinic and to one another, it argues that biomedical uncertainty seeps into everyday life, multiplying and replicating American conceptions of “chronic fatigue” that downplay the reality of disease due to entrenched cultural conceptions of labor. I present “proximity” as an alternative to totalizing frameworks of “medicalization”: ditching the trope of the dupe in favor of unraveling our messy affective and embodied relationships to diagnosis, mapping the shifting relationship between pathology and everyday life. As debility blocks the means through which debility might end, activists with ME/CFS must negotiate their clinical sidelining in bodies that are exhausted, responding to distancing through the difficult work of forging proximities to one another. ME/CFS’s incomplete incorporation into the clinic allows a real-time window into a pivotal era of American biomedicine, made all the more urgent in the aftermath of COVID-19.