MA Thesis:
Traversing the Therapeutic Cusp: The Perpetual Metamorphoses of Time for People with Cystic Fibrosis

Abstract

The current population of adults with cystic fibrosis (CF) is the first to survive into adulthood, as well as the last to grow up thinking that they wouldn’t. This thesis names the current, unprecedented and unrepeatable era in the timeline of CF: The Therapeutic Cusp. Through multimodal ethnography and autoethnography, the thesis and the accompanying research creation website define, and document and portray life within, the therapeutic cusp. Video interviews, documentary film, photos, and quotes on the website create representation of people with CF – an invisible illness, with equally invisible, perpetually metamorphosing timelines.

Genetic modulators are the latest medical advance in CF treatments, and treat the cause rather than the symptoms of CF. They have drastically changed the shape of the therapeutic cusp. New generations of people with CF are treated as early as in the womb, and may never experience CF symptoms. Side effects of genetic modulators are still being discovered, but are vastly considered preferable to the progression of CF without them.

Paralleling the medical advances that have allowed continual lifespan extension, treatment and remote communication technologies have immensely improved the reality of living with CF. These technology driven aspects of the therapeutic cusp allow greater communication within the obligatorily remote CF community, increased access to work, education, and the outside world in general during hospital inpatient stays, and easily portable daily treatment options. My thesis documents and theorizes ways in which the pandemic propelled remote communication and access to such a level that previously unrecognized societal access barriers for people with CF are now reduced or even removed, reshaping the social aspects of the therapeutic cusp.

Keywords: Therapeutic cusp; cystic fibrosis; Trikafta; crip time; multimodal ethnography; research creation.

Meta Vaughan is working to improve the emotional impact of chronic illnesses, especially cystic fibrosis. Through multimodal media production and writing, Meta aims to create positive representation, and raise awareness of known emotional responses, including medical PTSD, survivors guilt, procedural anxiety, and the human right to contribute to society.