Traversing the therapeutic cusp: the perpetual metamorphoses of time for people with cystic fibrosis

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. Using a multimodal ethnographic and autoethnographic approach, I have developed this concept through interviews, filming, text conversations, and relationships built with the CF community. My media works comprise four multimodal projects - remote portraits, a short documentary video, 'co-presence' videos, and video interviews. These are presented on my website Traversing the Therapeutic Cusp. Together, they create representation of life in the therapeutic cusp: people with CF - an invisible illness, with equally invisible, perpetually metamorphing timelines. This thesis is about my website and the media projects it contains, as well as literature and methodological approaches that have influenced my work. 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.