In her 1926 essay ‘On Being Ill’, Virginia Woolf reflects on the poverty of language when articulating illness: ‘let a sufferer try to describe a pain in his head to a doctor and language at once runs dry’. [p. 34] There is nothing ready for the ill in the way of language. The stories and descriptions that we present to start our diagnostic journeys are overtaken by an influx of medical discourse and we cease being the primary storyteller of our own body. My body’s disintegration could be read as an eighteenth-century epistolary novel through exchanges of notes and hypotheses between my consultants and GPs. At least that is when the hospital remembers to send me a copy, otherwise I am left in silence once again. But there are limits to medical language that heightens the ruptures we feel from our symptoms. 

To have an organ that is atrophying means to lose that subconscious sense of wholeness that comes with being healthy. Instead, I have to face up to the fact that my whole is depleting. I am not, nor will I ever be, fully myself. This personal sense of our bodies and the life that bubbles beneath the surface is not something that has historically mapped well into medical language. Across the healthcare encounter there is a common linear narrative that traces an illness from its symptoms and causes, through its treatments, and concluding with recovery. When viewed through this purely medical framework, there is an incompleteness to my own narrative: there is no apparent medical cause for my chronic pancreatitis and there is no cure for it either. In Brilliant Imperfections, Eli Clare frames this need for a cure in the healthcare narrative as something that relies ‘on a belief that what existed before is superior to what exists currently’. [Eli Clare, Brilliant Imperfections, p. 15] But for those of us whose state of being has always been one of pain or for those whose organs cannot be restored, this vision of restoring a superior earlier version of our bodies is one of pure imagination. As we delve into this ideal of what our bodies should be like, we reach the limits of medical reasoning and language. The entry on chronic pancreatitis on the NHS A-Z does not end with a cure, instead ending with ‘Complications’ and ‘Support’. In a stretch to find some form of recovery narrative, it concludes that my emotional and psychological health may be affected when faced with this diagnosis of a chronic illness, but that there ‘are medicines that can help with stress, anxiety and depression’. If the chronic illness itself cannot be cured, its tangential consequences can still be treated. But much of this stress and anxiety is ultimately linked to the viewing of my chronic illness through the linear narrative of recovery and cure.

What lies underneath the suggestions of stress, anxiety and depression is that illness brings with it an alternative sense of being that disrupts what we have known about our lives. Illness (particularly chronic illness) dislocates you and its hazed horizons are blurry and seemingly endless. This is often marked in territorial terms, most famously by Susan Sontag in Illness as Metaphor as the ‘kingdom of the sick’ that is ‘the night-side of life’. Sontag goes on to argue that the ‘healthiest way to being ill’ is to resist metaphor, though the abundance of various ill territories in works about illness and diagnosis highlight the difficulty in communicating the experience of illness in any literal sense. Woolf writes of the ‘undiscovered countries’ and the ‘waste and deserts’ that are brought to light in illness [p. 32]. Elaine Scarry in her seminal work, The Body in Pain, argues that reading about another’s pain is as if we encounter ‘the remote character of some deep subterranean fact, belonging to an invisible geography’. [Scarry, p. 3] Oliver Sacks, reflecting on his use of the term ‘Clinical Tales’, notes that in the wake of a diagnosis: ‘a world is lost or broken or unmade, reduced to bits and pieces, to chaos’. [Sacks, ‘Clinical Tales, Literature and Medicine, 5 (1986) p. 18]

This is perhaps why Dungeness feels so familiar when I arrive. A headland on the south-eastern coast of England, it is a place of otherness that seems to know that process of unmaking the world as you know it. It dislocates you when you meet it. A place of contradictions, it is the home of a nuclear power station and a designated nature conservation site. Time moves differently here, with the skies changing in a momentary gust. There is no distinction between sky and sea with the horizon disappearing into a grey haze. Its expanse of shingle resists boundaries and is a place where you can, perhaps for the first time, look around you in a non-linear way. It reflects the contradictory experience of being ill and queer. We often look back to move forward and we find company in solitude. We look and listen in ways that others do not when finding our place in the world. When you feel separated from the usual standards of society, you find yourself suspended in a hinterland.

But this suspension brings a certain freedom: you do not have to exist in a linear way, you can look in all directions to ground and configure yourself. In unmaking our world, illness presents a strange dichotomy. I am at once estranged from myself, and yet more aware of my body than I have ever been. In finding a vocabulary to express this new awareness of my body, there is a reformation of my sense of self that feels entirely familiar to me. The self-reckoning that accompanied my developing queer desires meant that I have perhaps been more prepared for the disruptions of illness than most. Desire shares many similarities with illness. The solitudes of illness have the capacity for much creative connection that mirrors the solitary experience of making sense of my queer identity and desires. Both have the capacity to remove us from time itself, or are at least governed by a different time. They have an element of the unknowable, where worlds shift and chaos ensues after they arrive. They both hold much in their unknowable dimensions and can give us insights into other aspects of our lives, especially our bodies and what we hold within them. 

*

To sit and listen to my body in solitude was one of the main reasons for coming to Prospect Cottage. Following this centuries old tradition, I have sat, I have listened, and I have cried at the cottage. Jarman’s work has been so compelling to me because he pushes his viewers and readers to see the world in new ways. In Jarman’s world the past and the present work in anachronistic ways, where there is a living relationship between the past, present, and future. His works are multilayered, with a deeply personal collage-like approach to showing how history can inform our present by finding queer forebears to his own experience of queerness and illness. 

Prospect Cottage encouraged me to look at my own life and deteriorating body in the same way. The silence of the cottage amplifies the rattling shake of the twenty-four tablets I take each day as I swallowed them in groups of four. It allows me to indulge in my body’s call for pauses, to sit in its fog and map out its interiors according to the histories that have helped me form a sense of who I am as a queer and chronically ill person. A cough after eating lunch was another taunt from my body. The strained digestion of food forced the air to be pushed from my lungs in coughs brought on by acid seeping up from my stomach. I held onto the door handle to the sitting room and paused to catch my breath. I forced air deep into my lungs through my nose to calm the panic, bringing the comforting smell of the cottage’s wooden floors and furniture with it. The untitled landscapes and AIDS paintings that line the sitting room walls drifted in and out of focus as tears gathered in my eyes. As I regained my breath I sunk into the sofa as the silence of Dungeness was broken by my sobbing. The soft cushions enveloped me, the cottage reaching out to protect me as if it knew that I was crying in a mixture of resentment and grief for a body that was. A reflection inward to face up to the upset that still dwells inside me as I realise that I am afraid of my own body. I live life in a suspended tension, unsure whether the developing pain in the left side of my abdomen is going to seep deeper, grab hold of my diaphragm and revert me back to my teenage years sobbing in my bedroom. It taunts me constantly, threatening to bring me down in an instant.

Is it possible to relive a life of pain in a weekend? My body’s clicks, groans, and gurgles echoed through each room. In response, the gentle roar of the wind came in from the sea, allowing the cottage and garden to speak back to my body with thuds and rustles. A whirring Crookes radiometer kept me company as the sun came through the side windows of the sunroom, amplified by the yellow of the window frames. I felt impossibly warm in contrast to the February gales outside, though my hands persistently held the Dungeness cold. They became pink and capillaried after just an hour at Jarman’s desk in the front of the house, forcing a retreat into the back away from the sea. This chill made it hard to write, my hands seizing and rebelling against the acts that help me make sense of myself. It was as if my body refused my attempts to understand it more and reveal its story. It is more comfortable staying unseen and unknown in the margins. But in the shingled desert of Dungeness, Prospect Cottage granted me the opportunity to meet my body in its preferred state of solitude and to trace the history of its failings.

I have discovered most about myself and my body when I have been alone rather than in company. This is perhaps not a surprise to anyone who knows me well: an often painfully shy introvert who is more likely to be listening to a conversation than participating in it. But there is something more at play here. Illness brought about various separations from the regular rhythms of life. In a darkened bedroom when I should have been playing with friends. In sickrooms when I should have been well. In midnight bathtubs when I should have been sleeping. You might assume that these have been lonely experiences, but I have not been alone. They have been punctuated by voices of the past that have attempted to communicate the expansiveness of such solitudes in their own language. Much like the shingled expanse of Dungeness, these solitary spaces have all been physical manifestations of the boundless quality that my illness has unlocked. 

My withdrawals from society, while punctuated with pain, have been sociable even if not entirely social. From bedrooms to archives, art studios to bathtubs, and London’s bustling streets to the crashing waves on Britain’s coastlines, solitary spaces have been a communion with different voices. From the transgressive sexuality of Christopher Marlowe’s poems and the shadows of Caravaggio’s portraits to John Donne’s and Walt Whitman’s solitary connectivity, and from eighteenth-century poetry about the body’s life-giving streams to Virginia Woolf’s depictions of waves, literary and queer history has inhabited my present through voices that have conjured deeply personal languages to present their own narratives of illness, desires, losses and healing. This is another dichotomy of illness and of solitude itself: our experiences of both are singular but collective. While many have made the case for our inability to share our pains through language, this does not mean that we don’t try. And hearing other’s attempts at making sense of their own pains, illness, and desires helps us make sense of our own and to fully inhabit our bodies and lives. These other voices have shown me that the isolation that is a part of being ill and queer is also an experience of shared connective solitudes.