Illness has often been described as a landscape of sorts. In Virginia Woolf’s essay “On Being Ill” she writes of “undiscovered countries” and the terrible “wastes and deserts of the soul” brought to light by “a slight attack of influenza.” Charles Lamb’s "The Convalescent" and William Hazlitt’s "The Sick-Chamber" respectively (and gloomily) deem illness “a prison” and a dull place where “the folding-doors of the imagination” remain closed. In Hilary Mantel’s "Meeting the Devil," a mesmerizing description of the author’s hallucinatory time recovering in hospital from major surgery, she recounts her first night “flighted by morphine… [thinking] that my bed had grown as wide as the world.”
Meanwhile, Alan Garner’s powerful essay ‘The Edge of the Ceiling’ dwells on his touch-and-go experience of three serious illnesses as a young child. Confined to his bed during each bout of illness, the younger Garner escapes his own painful physical limits by willing himself out of his body and floating up into the childhood bedroom ceiling above him. To him, it is a fully realized terrain containing “a forest… with hills, and clouds, and a road to the horizon.” Garner’s imagined landscape—remembered vividly by the adult writer—offers temporary reprieve to a boy with endless time and nothing to do but endure his own sickness. Memories exist of another geography too: that of the plaster in his parents’ ceiling, forming itself into the ominous shape of “a plump little old woman with a circular face.” Each time the young Garner witnesses this face he becomes keenly aware of his mortality, his illness taking him close to the edge. Each time though, he rallied. “I was too angry to die,” Garner remembers uneasily.
All of these writers delineate their own version of what Susan Sontag refers to in Illness as Metaphor as the division between “kingdom of the well” and the “kingdom of the sick.” The latter, “the night-side of life,” is one, Sontag writes, that all of us are “obliged, at least for a spell, to identify ourselves as citizens of.” In the kingdom of the sick, illness is experienced as a wide and unpredictable vista: both expanding far beyond and hemmed in by the edges of a bed, forming a space in which time, reality, and sensation all waver. It is a kingdom, however, that requires careful consideration. Sontag’s book is primarily concerned with how clichés and “metaphoric thinking” cloud our understanding of illness as it actually is.
*** I have thought a lot about these essays in recent months, compelled by their various attempts to relate the odd, horizontal experience of sickness. For as long as people have been getting ill, they have been trying to put the experience of illness into words. Woolf mawkishly complains of a paucity of language in which to do so; Mantel, in direct riposte, lists a “vocabulary of singing aches, of spasms, of strictures, and aches,” tartly concluding that “no one’s pain is so special that the devil’s dictionary of anguish has not anticipated it.” At a time when illness feels acutely present in all our lives, there may be solace found in reading accounts of those who have previously risen to the tricky business of articulating serious pain and discomfort.
In a way, there is some consolation in reading these accounts—if only to appreciate the vivid singularity of each experience. Perspectives change. Bodies become alien. Death and other forms of uncertainty linger close at hand.
But something in them feels strangely distant too. Many of these essays read as definitive journeys with return tickets. In them the author ventures into the kingdom of the sick, is stuck there for a while, and then leaves again, perhaps bearing a new memento or two: insight; a scar; fresh gratitude for being able to stand upright. This journey requires the fixed certainty of a “normal” world to return to. It is this “well” world that stands ready to welcome these adventurers back when they recover. Even for those like Mantel, who concludes that “needing more surgery, I am not sure what kind of story I’m in,” the story is still one in which that well world continues to whir as usual outside the sick room, waiting for her.
It is difficult to find present parallels with these narratives. Right now, illness is not just an individualized experience but a mass occurrence. One that makes it so much harder to draw any clear divisions between the well and sick. Some of the sick are symptomless, carrying around a virus that leaves them unharmed but can potentially kill others who cross their path. Various symptoms are still unclear or have only recently been added to official guidance. Over the past few months, fear and grief have become entwined with so many aspects of daily life: fear of becoming ill or watching loved ones become ill; grief at what has happened, and continues to happen, to countless individuals and families, perhaps including our own.
There’s no real normality awaiting the recovered either. Despite the move towards easing out of lockdown, much of what we previously took for granted remains just as uncertain. With so many usual aspects of life still currently turned upside down—touch, crowds, workplaces, education, restaurants, travel, forward planning, proximity to strangers, groups gathering for parties, weddings, funerals, festivals—it’s not just the terrain of illness that has transformed, but everything else beyond it.
None of this is necessarily unique to coronavirus, even if this pandemic feels uniquely bewildering in scale. Nor is it entirely unexplored territory for writers. For every description of illness with a beginning, middle and ending, there is another that refuses narrative closure. In recent years a spate of medical memoirs—Porochista Khakpour’s Sick, Sinéad Gleeson’s Constellations, and Anne Boyer’s The Undying among them—have signalled a shift towards approaching illness not from the safe, removed vantage point of the well, but as something more complicated, that extends into quotidian life.
Khakpour’s memoir, which dwells on her diagnosis of late-stage Lyme disease, traces the ongoing challenges of chronic illness. In the epilogue she pithily compares “The Book I Sold” —a narrative promised to her publishers about the personal triumph of a woman who “got herself better”—with the actuality of accepting that “illness will be with you as long as life is with you.” Gleeson’s essay collection, too, focuses on the lifelong ramifications of ill health, including a major hip operation in her teens and a diagnosis of leukemia at the age of 28. Early on she describes herself as “an accumulation… of sleepless nights and hospital days,” writing about these experiences not as a wholly distant vista but something that continues to inform numerous aspects of who she is now.
Boyer’s The Undying is especially bracing. At once sprawling and tightly focused, her book ostensibly figures as an account of her diagnosis and treatment of triple-negative breast cancer. But Boyer is not interested in standard—or solitary—narrative paths. Instead she writes of her illness not just an individually experienced phenomena, but as something located within a specific nexus of capitalism, gender, language, medical history, the US healthcare system, and the lineage of those who have died before her. Echoing Sontag’s desire to investigate the “punitive or sentimental fantasies” surrounding sickness, Boyer rails against a culture in which “the narrative spoils” go to “victors”: she writes critically about our celebrations of those who have “beaten” breast cancer and can “tell a story of ‘surviving” via individual self-management—the narrative [one] of the atomized individual done right.”
Boyer argues instead for sickness as something that exists in the social body, collectively produced and widely experienced— with our ability to treat and respond to it mediated largely by money. Here the world does not ebb away during illness but remains firmly present, dictating difficult decisions over work, and access to treatment; who lives and dies, and to whom who care falls. The echoes found in current conversations are stark, especially when she lists some of the main systems medicine interlocks with: “family race work gender education.”
*** Relentlessly probing and politically excoriating, Boyer still offers something hopeful among her fragmented reflections: a practical kind of solidarity. “Everyone who is not sick now has been sick or will be sick soon,” Boyer writes: “This is why I tried to write down pain’s leaky democracies, the shared vistas of the terribly felt.” In illuminating those vistas she connects her experience to a constellation of others, creating what Lauren Berlant deems a “commons of suffering”: attentive to the singularity of each unwell experience, but also refusing the idea of illness as something wholly lonely, or held solely in any one individual body.
Perhaps both types of writing have their uses right now. Purely personal accounts give language—whatever Woolf might say—to the weird, woozy semi-reality of fevers, pain, exhaustion, nausea, and more. They accurately and sometimes startlingly capture passage into the realm of the unwell, and reflect on their findings.
But one needs those like Boyer too, reminding us not just of the precariousness of these passages, but the way illness has always existed both individually and collectively: intensely personal, expansively wide-ranging, existing within the context of numerous communities and systems. At a point when all usual definitions of normality and sickness are still up in the air, this recognition doesn’t provide much concrete comfort—but it perhaps offers another way of approaching the uncertain landscape we now find ourselves living in.
