Radical Bodily Doubt

A year ago, I was woken up at 1am by a phone call. The transplant coordinator said: ‘how would you feel about coming in for a possible match?’ By 3am my partner and I were at the hospital. At 7am it was confirmed: the surgery was going ahead.

When I woke up four days later, everything has changed. My body had new lungs in it and my immune system was highly suppressed to avoid rejection. The major surgery left me confused and in complete shock. My body unravelled in ways hitherto unbeknown to me. My recovery was hard and long, with significant complications. I spent many months in hospital, and later at home, recovering. The harsh medical complexities and their effects profoundly changed not only the boundaries, but the very texture, of my bodily experience.

Some days, I didn’t care. Other days I was too confused to understand my predicament. On still others my broken body lamented this undertaking, which seemed endless and futile. The toll on my agency, thought, self-familiarity and self-regard was so total as to force a rebirth of sorts. The restitution narratives of recovery as 'getting better’, ‘returning to how things were before’ or ‘bouncing back’ seemed naive, formulaic and barren: entirely oblivious to the painful reality of a body in total disarray. The anticipated and hotly desired ‘return’ revealed itself as no return at all. As Heraclitus said: you cannot step into the same river twice; both the water and the person are different each time.

Whilst navigating the rocky and uneven terrain of recovery during protracted months of constant, yet varied, suffering I tried over and over to reconnect with this body, which became a focal point of dread, humiliation and distrust. Nothing worked, and nothing could be expected to work without careful medical management. The easy, casual way in which we usually inhabit our body in health was destroyed by an artifice of surgery, medication, treatment protocols, and a restrictive bodily regime.

Extreme bodily trauma requires a renewed encounter with one’s self-presentation and one’s awkwardly distant, functionally dubious and existentially treacherous body. It cannot be trusted but one cannot help but put one’s trust in this flimsy excuse for the grounded, fleshly presence of the past. How else could I proceed?

This led me to go beyond the notion of ‘bodily doubt’ described in chapter four of my 2016 book, Phenomenology of Illness. Bodily doubt is the feeling of doubt in one’s body, that is not simply a cognitive or intellectual doubt, but a feeling of doubt experienced at a bodily level. It is a bodily feeling mirroring intellectual doubt: a feeling of hesitation and doubt, revealing that our sense of bodily certainty and trust are epistemically ungrounded. Bodily doubt is composed of: i. loss of trust; ii. loss of continuity; and iii. loss of faith in one's body.

I now propose a new notion: Radical bodily doubt, described in a short new paper in The Lancet. This is an extreme form of doubt experienced in liminal bodily states, such as end of life or major trauma, necessitating intensive hospital care. Primarily, it is not a state in which certainty about a particular bodily function, such as balance, vision, or digestion is lost, but a complete collapse of all certainty, continuity and faith in one’s body and its ability to persist. It is a breakdown, not of one or some bodily functions (characterising bodily doubt), but a collapse of all tacit beliefs previously held secure by one's bodily certainty.

We need to develop linguistic and other communicative modes to describe radical bodily doubt, and to incorporate liminal bodily experiences into familiar modes of speaking and orienting ourselves towards our bodies. The unspoken experiences of those who are very ill, incapacitated, uncapable of speech or even unconscious must be brought into commonly available ways of speaking about illness. As Lucienne Spencer argues, our account of testimonial injustice ought to include a wider range of expressions, including non-verbal ones. We must develop more varied ways to understand and describe our embodied existence when broken or whole, in situations that are familiar or uncanny, and in when selfhood is stable or disrupted to the point of implosion.

I thank my donor and their family; we remain anonymous to each other, but I am grateful for their altruism and kindness to strangers at a time of great distress.

Havi Carel is Professor of Philosophy at the University of Bristol. She currently leads a Wellcome Discovery Award, EPIC, on epistemic injustice in health care. She has previously published on the embodied experience of illness, epistemic injustice in healthcare, vulnerability, wellbeing within illness, transformative experience, death, and on the experience of respiratory illness in the Lancet, BMJ, Journal of Medicine and Philosophy, Journal of Medical Ethics, Journal of Applied Philosophy, and in edited collections.