It is a first-person project, a hybrid between photography and performance that speaks to the body with the body. The starting point is the transformation that a rare disease performs on my immanent. At the center, the body is a stage, a medium, a mobile horizon, as a visible testimony of the invisibility of pain. The work is based on the concept of photography as a vital experience. The visual tool allows me to explore the relationships between disease and the body, between the inexorable and the transcendent, and the private and the political. The reproduced reality takes its cue from my experience to be re-staged. People, actors who stage concepts, events, or moods. Water, is a fundamental respite, since only in the absence of gravity can I move again without pain. My body, a bulwark of freedom, is the protagonist of its staging. The work is composed in chapters; the first is Naiade, a photographic project/book in the form of a diary published in 2019, in which snapshots and documentary vision (the first viscerally intimate and narrative, the second cold and descriptive) collaborate, accompanying me in the discovery of the disease. In this second chapter I no longer use photography as a therapeutic and acceptance tool, but as a simple means: I want my body to become a narrative tool. The project’s title refers to a principle coined by Prof. Theodore Woodward (University of Maryland), who instructed his graduate students: When you hear hoofbeats behind you, think of a horse, don’t expect to see a zebra”. Zebra, in medical parlance, means arriving at a surprisingly rare medical diagnosis when a more common explanation is usually more likely. This principle has been repeated to me over and over again by my doctors, but in this case, I am their zebra.
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