Introduction: 

Field notes: observations recorded in the course of field based (aka real-world) research into specific phenomena, which form evidence that can add meaning and context to those phenomena. Field notes can include descriptive, factual information, and the observer’s reflections about the recorded observations. They can also include visual information such as sketches, diagrams, maps or photographs.

Lived experience: knowledge acquired through direct, first-hand experience.

The land of the sick: Susan Sontag wrote in Illness as Metaphor (1978), ‘Everyone who is born holds dual citizenship, in the kingdom of the well and in the kingdom of the sick’. Having lived in the land of the sick for six years now, I know it’s a wild place: a frontier territory, with no defined borders; no government, although much inefficient, impersonal, inflexible bureaucracy; and while it has its own laws, they’re not founded on any societal constructs, but on the non-negotiable physical realities of the body-mind. For the well, this land can seem a very long way away, or even mythical; most have little idea what life is like here. But it’s right next door: the distance of one blocked blood vessel or one microscopic virus away. No one chooses to travel here, but all of us do at some times of our life; and many of us end up living here permanently.

It’s a harsh, cruel land in most ways, with a brutal climate, although there are beautiful aspects: maybe most of all the community who settle here. But this is inhospitable, trackless country, with rough terrain; tortuous to travel through; and many of us have to travel it largely alone, to be our own experts, find our own ways – often with only sketchy maps, if any. There are whole archipelagos of islands isolated by seas that are almost always tempestuous. 

Communications and connections from here to the land of the well are patchy at best: even sending messages back is hit and miss, with much lost in the static of misunderstanding. And most of us living here long-term can never travel back to the land of the well, even for a holiday: we all have more-than-full-time work, no evenings or weekends off, no vacation time. At minimum, we’re all unpaid carers for our own severely sick selves; our unrelenting job is the invisible 24/7, 365 days a year labour of managing illness, and dealing with its powerful, frightening, unpredictable storms.