Hatty Nestor is a writer and researcher based between the UK and the USA. Her first book, Ethical Portraits, was published in 2021. Taken from an upcoming, currently untitled book, the following piece reflects on her diagnosis of multiple sclerosis, the catharsis of Jenny Holzer’s art, and Susan Sontag’s twilight zones of sickness and health
In Susan Sontag’s Illness as Metaphor she distinguishes between the ‘kingdom of the well’ and that of the ‘sick’, this latter space which is ‘the night-side of life’ that all of us are ‘obliged, at least for a spell, to identify ourselves as citizens of’. These kingdoms of sick and well are places we all at times find ourselves subject to – they are both geographical and metaphorical spaces. Within Sontag’s kingdoms, sickness and health are both expansive spaces which can change and be reconfigured over time. In these kingdoms, Sontag wants the reader to re-orientate their view – to understand, or indeed comprehend – what sickness and illness, in their harsh, precarious nature, can be.
This kingdom-ill-well-dwelling can separate those who are healthy through economic support, and those who – due to their health, or status – live more precariously. It can seem we all hold citizenship to Sontag’s healthy kingdom, which at first presents itself as an invitation. It is not. Citizenship is based on worth, profit, time, recognition, and functionality. If we are to acknowledge those who cannot perform these tasks within this kingdom, a clear distinction becomes apparent. As Sontag writes, ‘it is hardly possible to take up one’s residence in the kingdom of the ill unprejudiced by the lurid metaphors with which it has been landscaped’. This landscape is constructed by wealth, value and stability, which has a direct effect on the health of those who reside within it.
“In sickness and in health” may be simply a wedding proclamation, but it also has a bearing on the different realms and spaces one is permitted to reside within, or even access. To take up residence in the ‘well’ kingdom, one must have access to different forms of wealth. This kingdom could also be somewhere for those who have chronic pain or long term illness – states that are never chosen but imposed, with which you have a relationship and live alongside. In society, there are many of us who indefinitely dwell in the sick realm, with no recourse for change, and may never get to enter the ‘well’ kingdom. Sontag’s binary kingdoms – those who are sick, and those who are well – could also be used to discuss health care services, representations within art, and even care in our most vulnerable moments.
In the spring of 2015, I was diagnosed with multiple sclerosis, a long-term neurological condition of the brain and spinal cord. Prior to this news, I thought that the strange sensations I had been experiencing; of feeling as though I was submerged in water, exhausted, tingling, numbness, wasn’t what felt like a life sentence to illness, but instead something explainable and resolvable. Raging headaches, horrendous fatigue, paling skin, double, and triple vision; I felt abject, nonfunctioning, in between – a citizen of nowhere. Before the diagnosis, I had spent months being shunted back and forth between different consultants, waiting months for various appointments, scans, intrusive procedures, and was prescribed a cocktail of medications. Within that shunting I quickly realised that the NHS didn’t have much space or money, not just for me but anyone else in my position. There is nothing that can prepare you for this tactile experience of feeling like a burden while at the same time being at mercy to the very system which doesn’t have the resources to provide what you need. The isolating experience and correlation between my health and subsequent lack of wealth became increasingly apparent. Private healthcare was ‘the alternative option’ – I was told by the very doctors who were diagnosing me – if I didn’t want to continue in a strange twilight purgatory, awaiting answers as to why I had been feeling so unwell.
In the absence of a conclusion as to when I might be ‘better’ (and, without thousands of pounds to find out sooner), I started allowing myself to mourn. I began searching within art to make sense of my body, my new categorisation. As months passed, and as I met others who were chronically unwell, I found a strange sense of community, even if the healthcare system felt isolating. From the clinical clothing, to the strange informal address of the doctors, I felt as though I was in a mechanical machine, not a place which gives ‘care’ in the way in which, at the time, I needed it. I wanted to find a place to reckon with pain not just as a feeling but also as a communal language. In my grief, I wanted not a different diagnosis but an alternate narrative: one in which my illness could not be chronic, a sickness with an ending. What I have learnt is that another’s pain can arise through one’s own direct experience, too: an acceptance of my faltering body, to what it means to be seen as ‘non-normative’ medically. And also that the anguish of accepting this new identity can, at times, be harder than the physical suffering itself. It is also uncanny how finding resonance of your own experience can arise in art or literature.
Two years after my diagnosis, I visited Jenny Holzer’s exhibition Softer at Blenheim Palace to write a review for an art magazine. The exhibition struck a chord with me in a way I didn’t expect, despite its subject matter being very different from my recent diagnosis and battle with multiple sclerosis. Holzer’s text-based projections have always agitated and disturbed societal order through linguistic truisms. Her famous line, ‘Abuse of power comes as no surprise’, rings true of many societal systems of discrimination, and the phrase has even been employed by feminist organisations and the #MeToo movement. In a similar manner, Holzer’s famous public lithograph series, the Inflammatory Essays (1979–92), composed of more than 300 aphoristic texts, uses language as an embodied experience, to explore complex and controversial issues in society. Many of Holzer’s other turbulent phrases, such as ‘You are a victim of the rules you live by’ and ‘Fear is the most elegant weapon’ bear a cathartic meaning in relation to our emotional impulses – and indeed even our feelings about health – where the viewer is invited to empathise with a collective experience of violence and suffering, through the tentative application of language.
Holzer kept a low-profile at the Blenheim private view during my visit, meandering between eager press representatives and serenely walking by the palace’s lake. Whilst standing amongst large-scale moving projections On War (2017) in the palace’s facade, I asked Holzer how she extracted the voice piece testimonies and what it meant for her politically. Astutely, she replied: “I wanted one to be able to imagine a real person, and the voices are of lots of different people. But strangely, even though they are disembodied, they seem to be in the flesh. Whereas the projections have wonderful content and are transient.” In these works, the transient movement presents the illegibility of language to convey embodied experience. The different projections within the exhibition constructed a tenderness, a serene landscape of bodies lost to war. When viewing Holzer’s work, it becomes apparent that ‘health’ and ‘wealth’ are not indistinguishable, that one is dependent upon the other even in the face of conflict and loss.
At Blenheim, I stumbled upon the most chilling piece in the show, called Still Life (2017). It encompassed a collection of human bones, laid upon a large gilt-and-marble table in the palace’s opulent saloon; legs, arms, finger bones and hips lined up like fossils excavated from an archaeological site dig. In 1993, Holzer began researching the ethnic cleansing, rape, and murder of women during the Bosnian War (where rape was perceived as simply an unfortunate consequence of political turmoil), leading to the controversial work Lustmord (German for sex-murder) (1993–1994). The bones, placed brashly on the table, elicit a direct reference to the human form’s materiality while creating a sensitive, political meditation on women’s bodies lost at war, of forgotten life. Silver rings bind the bones, fragments that encapsulate three points of view from the killing: victim, perpetrator, observer. Homogenised together, the bones curated a language of their scattered origins; women, fated to die amid a ruthless conflict, to be reckoned with inside a palace. Still Life is invoked as a guide to the politics of death and mourning, and demonstrates Holzer’s ability to present the horror of war crimes as a call for mourning and empathy for those lives who remain eternally unnamed. Within this complicated space of mourning, Holzer asks: what is the importance of burying, of laying to rest, and how do we locate new ways to protest in this moment of grieving? What economies of worth, health, wealth and sickness do we experience, when allowing ourselves to feel the weight of this violence?
Despite Holzer’s work focusing on war and grief, there is also a fraught economy of sickness and wealth at play – of whose lives matter – and how we grieve them at its core. Her work unravels the complicated iterations of pain and grief, and who we might feel it for. In retrospect, Softer evoked a deep empathy within me. And in this prevailing state, I found myself prompted to open up, to feel the precariousness and the harshness of the world. Softer profoundly touches on an ongoingness of violence and sickness, resolution and mourning, economies of life and death, women and violence. It was this lack of resolution within Softer which has stayed with me, and at the time gave me a framework to understand my experience. And although there is not a direct correlation to my own illness – and I would never claim there is a similarity – there was still a complex feeling of resilience Holzer awakened within me through her art. Evocative artistic encounters are at times the place where our experience is put into context, felt in a different light.
A few years later, I had been experiencing classic symptoms of multiple sclerosis to a greater degree; numbness, tingling and extreme fatigue. By then, I had begun mourning myself, reconciled to who I now was identifying as: someone who couldn’t be as active, who lives alongside strange sensations, symptoms. I was told I was too young to be this chronically unwell, too young to be coping with this pain. Yet I had begun to understand that resolution was not the way my body was going to exist in the coming months or years, but within this suffering I was given a hidden knowledge which needed to be communicated to others. This, too, is what Holzer and Sontag ask us to do; to confront and acknowledge economies of suffering and wealth in ourselves and others. Their pursuit of catharsis, through myriad forms, reoriented the pain of others as that which it is everyone’s responsibility to behold, in the face of individual and collective suffering. For when women cease to bear the vulnerability of all human suffering, there is a sense that the unfounded pain we all share becomes everyone’s burden to bear.
During the new year, after a cold harsh winter, I began reading not about living with pain, but instead about the impending acceptance one must have when facing death. I returned again to Sontag, in whose work I had always found solace in times of grieving, in confronting difficult ethics of suffering.
When Sontag died in 2004 after being diagnosed with myelodysplastic syndrome – the precursor to leukaemia – her son, David Rieff, wrote a beautiful article in The Guardian titled Why I had to lie to my dying mother. It documents how he felt compelled to collude with his mother’s ever-dwindling fantasy of not-dying, to divert her attention from the inevitable. He wrote that what surfaced in Sontag’s final days was an inability to confront her own impending death; ‘so terrified of death that she could not bear to speak of it, my mother was also obsessed with it’. Death Kit (1967), Sontag’s second novel, for instance, blended realism and dream states (much like her last days) through the suffering of protagonist Dalton Diddy Harron; ‘Diddy, not really alive, had a life’ she wrote. Diddy embodied the paradox of the person’s non-present existence, the twilight state of death in life.
Sontag apparently even kept a skull of an unknown person on her desk. ‘Would I think about it differently if I knew whether the skull had been a man or woman?’ she wrote in 1998; questioning this item’s gender and ontological purpose. Rieff wrote, ‘the awful paradox’ of his mother’s passing, was in ‘seeing the depths of her fear and witnessing her refusal to accept what was happening to her’.
The process of bearing witness to our last moments differs greatly from the fleeting moment of death: it entails pain, suffering, and, in the case of Sontag, that the state of demise is too inconceivable to reckon with. It also can be a profound moment of clarity, serenity. Yet Rieff experienced his mother’s pain through the psychic prism of fantasy. By tenderly colluding in the denial of her waning condition, Sontag’s pain became her son’s to endure: a cathartic gesture for them both, so that the moment of final loss could be postponed until the inevitable. ‘To think only of oneself is to think of death,’ Sontag wrote in Illness as Metaphor (1978). Despite never wavering from exploring others’ pain and suffering in her writing, Sontag could not acknowledge her own mortality in her final days. Sometimes, it is easier to write about pain in others than tacitly experience our own.
Artwork Daniel Clarke
