On the 23^rd of May 2016, three hundred and twenty pairs of shoes were arranged in front of the State Library of Victoria. They were there to symbolise the bodies of people who, due to chronic illness, could not make their will known through a standard protest.¹ It was an exercise in representation through absence.

I thought of all the other invisible bodies, with their fists up, tucked away and out of sight. ²

The Korean-American activist Joanna Hedva, when she was unable to take part in the Black Lives Matter protests in Los Angeles in 2014, devised a framework ‘for those who were never meant to survive but did. ³ Her Sick Woman Theory is an exploration of the intersection of chronic physical and mental conditions, and the ways we normally discuss illness. Hedva has an unidentified autoimmune disease, endometriosis, as well as bipolar disorder, panic disorder, and depersonalisation. She identifies the circumstances that have created and contributed to these ailments as a history of intergenerational trauma, poverty, and inadequate access to medical care.

To be confined to your home by ongoing sickness makes you ‘culturally illegitimate and politically invisible’. ⁴ You are unable to embody your will, to put your body in a public space and protest; to stand against the indefinite detention of asylum seekers, against funding cuts to vital services and education. Not a silent majority, but silenced fragments.

Pain separates us. Unmanageable pain reduces the scope of the world we are able to focus on: to this body, this second. Major depression is like physical pain. Unable to imagine another second, much less a future.

The symptoms of my physical illness: pain, nausea, vomiting, being unable to concentrate, to eat or walk. There’s a fist-sized pool of blood on the linoleum. It doesn’t feel so different to the low points of depression.

Pain is a sensation.

*

David Foster Wallace’s fiction was the first place that I encountered a description of depression that felt real.  As he puts it:

A clinically depressed person cannot even perceive any other person or thing as independent of the universal pain that is digesting her cell by cell. Everything is part of the problem, and there is no solution. ⁵

This is from Foster Wallace’s much-lauded novel Infinite Jest, though it reads like his nonfiction. As depressive himself, he drew from personal experience. There’s a lot of him in his essays. One example is his review of a dictionary that culminates in the revelation that every piece of word-dependent communication is half communicating content and half expressing something about the author. As a reader you’re left with the impression that he wants you to know this about him, and wants you to know that he wants you to know.

His description of the sensation of depression makes it feel like an objective constant. Something legitimate and measurable. It disrupts the questioning of the legitimacy of mental illness—an attitude that can infect your own thinking. Maybe I’m not sick; maybe I’m just lazy. (Harken back to the teachers and caregivers who told me I couldn’t take time off school every month just for period pain. I was vomiting and ten years away from my endometriosis diagnosis.)

Though I treasure Infinite Jest as my first encounter with something that described what I had experienced, it sits in the tradition of linking male artists’ mental illness with their creativity. Eccentricities excused or valorised. In Heroines, Kate Zambreno centres her research on the wives and lovers of the great men of modernism. For these women—like Vivienne Eliot and Zelda Fitzgerald—their lives and writing became fodder for others’ work.

I keep on typing the same typo: not obliterate but obliterature. ⁶

Vivienne’s journals are still kept locked away—TS Eliot’s directive to ‘suppress everything suppressible.’⁷ For them, madness and illness were interwoven. The ‘colitis, fever, migraines, rashes, insomnia’, and treatment that pushed them further off-balance: ‘hallucinations from the bromides and chloral, given in huge draughts.’⁸

Pain of sickness, pain of isolation, shut up in sanatoriums, their work destroyed. They were not allowed madness and creative expression, like the (often male) writers whose depression or alcoholism or poor conduct was not made to define them, who still had agency. They were just mad.

The trauma of not being seen. ⁹

*

But how do we quantify pain?

When you go to a GP for a mental health care plan and referral, you fill out a K10 questionnaire so that they can quantify numerically how much distress you are in. On three occasions I score in the forties, of a possible fifty. I admit to suicidal ideation and am referred urgently to a bulk-billing psychologist. Results vary.

About how often did you feel that everything was an effort? About how often did you feel worthless?¹⁰

In her essay ‘The Pain Scale’, Eula Biss writes that she is ‘entertaining the idea that absolutely no pain is not possible.’¹¹ Her pain is without apparent cause or solution, her life completely disrupted. A numerical or pictorial scale—smiling face to crying face—’measures only the intensity of pain, not the duration.’¹² Hell is not frightening because it is unpleasant, ‘but because it is eternal.’¹³

My first psychologist, who I saw in secret at eighteen, was a specialist in chronic pain. The cognitive behavioural therapy techniques used for depression and pain are similar. The aim is to change your inner monologue, the language and expressions used, to change patterns of thought and action. To veer away from the certainty that because I am in pain now, I will always feel this way.

Assigning a value to my own pain has never ceased to feel like a political act. I am a citizen of a country that ranks our comfort above any other concern.¹⁴

Biss’s essay highlights the same concern that the #MillionsMissing protest at the State Library tried to: debilitating pain makes you absent from your own life.

Pessimist: I’m compiling anecdotes on the effects of mental illness on lifespan. Comorbidity: people who are mentally ill are more likely to be physically unhealthy, and vice versa. People with chronic pain are particularly at risk for substance dependence and abuse. (The two years excised from my memory that comes back to me in others’ stories: I was not there.)

When you can’t get out of bed, communicating feels urgent. Keeping a record of the experience. Otherwise, how can I be sure it happened at all? The body does not remember pain. I can’t describe accurately the state of my mental health at any time except right now. It’s like imagining being full when you’re hungry, or cold when you’re hot.

Mail remains unopened. Thoughts are rarely followed to their conclusions. Sitting still becomes unbearable after one hour. Nausea sets in.¹⁵

This body, this second. Collapsed present.

*

The author of The Empathy Exams, Leslie Jamison, explores why women writers feel they have to talk about their wounds. She articulates a concern that ‘wound-dwelling’ fetishizes pain and makes it impossible to move on. Romantic novels with their damaged, consumptive heroines are a formative example of pain-writing: the frailty of women is made a desirable trait, because it makes them dependent.¹⁶

She gives two examples of pain reaching from interior to exterior. The first is what is in the mind becoming visible in the body; for her, it’s a history of eating disorders and self-harm. But this is not good communication; ‘we want our wounds to speak for themselves . . . we usually end up having to speak for them.’¹⁷ The other way that pain moves from inside to outside is when we talk about it.

Pain only reaches beyond itself when its damage shifts from private to public, from solipsistic to collective.¹⁸

When Jamison questioned other writers on their attitudes to writing about pain, one confessed that her greatest fear was that her work would be read as ‘transcriptions of private suffering, and in this self-​concern would also register as somehow “feminine.”’¹⁹

The pain of feeling, the pain of caring, the pain of doubting, the pain of parting, the pain of paying.²⁰

*

The pain of parting: Helen Macdonald’s H is for Hawk is an account of the year following the unexpected death of her father. She is diagnosed with depression. Grief is normal, but at some juncture her failure to cope becomes pathological. (Depression does not occur in isolation.) On impulse she decides to train a goshawk.

I was in ruins. Some deep part of me was trying to rebuild itself…the hawk was everything I wanted to be: solitary, self-possessed, free from grief, and numb to the hurts of human life.²¹

Like T.H. White before her, whose book The Goshawk Macdonald read as a child, she enters into a period of isolation from family, work, and friends. She identifies more with the goshawk and the hunt than with people, and things start to fall apart. Her job contract ends; she has to live in a friend’s home. She is unable to imagine a future.

My heart is salt. Everything is stuck in an eternal present.²²

Macdonald is an experienced falconer, and does not inflict the harm on her goshawk that White did. White’s hawk bore the brunt of his ignorance and cruelty—he so badly needed for it to be the model of power that he couldn’t be himself. When the hawk is isolated to go into moult, Macdonald realises that the time she’s spent focusing on her hawk has transmuted her grief into something else. It’s no longer unbearable.

Human hands are for holding other hands. Human arms are for holding other humans close. They’re not for breaking the necks of rabbits, pulling loops of viscera out onto leaf-litter.²³

Writing like Macdonald’s is valuable, and not just because the prose is beautiful.  She makes us witness to a process of change in pain. The universality of grief reaches out from her very specific experience.

Maggie Nelson’s The Argonauts, most often feted for its depiction of queer love and families, makes other observations of love. Love invites the possibility of loss: Nelson parallels the birth of her son with the death of her partner’s mother from cancer, and writes on a life-threatening illness her son contracted. Having a child meant that she could have lost a child. Loss is normal. Pain is normal.

*

I don’t believe that every death at the end of a struggle with mental illness is preventable, but they are not inevitable. In Australia, a third of deaths in 15 to 24-year-olds and a quarter of deaths in the 25 to 34-year-old bracket are from suicide.²⁴ It would be remiss to not mention that the rates of suicide for First Nations Australians are nearly double this; more evidence that mental illness is contextual, not individual. ²⁵

‘We Are All Very Anxious’, a piece on the different kinds of anxiety and their relationship with different stages of capitalism identifies external stressors’ impact on individuals.²⁶It documents the increasing prevalence of anxiety and other mental illnesses in combination with workplaces that are focused on surveillance and micromanagement. The example it gives is call centre work. Cold-calling is both boring and stressful. Further shifts are dependent upon your performance. When I worked in a call centre I started to have panic attacks more frequently. The feeling that the whole world would be better if my job did not exist extrapolated out to: if I did not exist.

Additionally, current discussions on stress shift responsibility from employers’ policies, the precarity of work and economic distress to the individual’s own inadequate practice of mindfulness or self-care. The worker is responsible for maximising their own productivity in ways that cost management or employers nothing.

As with Hedva’s writing, ‘We Are All Very Anxious’ suggests that an important aspect of dealing with mental illness is working against isolation and recognising human value outside of the ability to generate capital.

The situation feels hopeless and inescapable, but it isn’t. It feels this way because of effects of precarity—constant over-stress, the contraction of time into an eternal present, the vulnerability of each separated individual.²⁷

We should identify its causes as being the ‘colonialism, genocide, slavery, legal exclusion, and everyday segregation and isolation that haunt(s) all of our lives.’²⁸  It’s the construction of ‘wellness as the default’ that allows us to see ‘illness as temporary’. And if illness is temporary, we ‘conceive of care and support in the same way’; as conditional. ²⁹ Conditional care is what killed Reza Barati and Faysal Ahmed.

‘This is not normal’, I keep thinking. A thought invariably followed by a doubt, ‘Is this normal?’³⁰

*

When my mother is diagnosed with cancer it makes everything seem absurd.

The radiation machines in the Sydney hospital she is treated in are named after different beaches. Tamarama. Bondi. There’s a girl in a school uniform in the waiting room. She’s minutely braiding her hair in front of her face.

While I’m in town for my mum’s treatment I see a friend who lost his dad to cancer. He hugs me for a long, long time and there aren’t words for how much it means.

So why try to write about pain at all? Language is reductive and inadequate; we can never perfectly describe what we mean to. Maggie Nelson challenges this idea: by writing around what we can’t express, we can still write the unsayable. ‘It is idle to fault a net for having too many holes.’³¹

I don’t want to dwell in wounds, but not acknowledging them is to discuss life shallowly. There is space to be made for sickness, and for care, and for the bodies we cannot see.

 

Alex Gerrans is a writer from Brisbane. She mainly writes about women, the body and illness. Her work has featured in publications including Voiceworks, Overland online, and The Lifted Brow Review of Books.

1. Rowley, Sylvia. ‘Rethinking Chronic Fatigue Syndrome.’ 6 8 2016. The Saturday Paper. 16 8 2016
2. Hedva, Johanna. ‘Sick Woman Theory.’ 7 10 2015. Mask Magazine.
3. Hedva, Johanna. ‘Sick Woman Theory.’ 7 10 2015. Mask Magazine.
4. Hedva, Johanna. ‘Sick Woman Theory.’ 7 10 2015. Mask Magazine.
5. Wallace, David Foster. Infinite Jest. Back Bay Books, 2006.
6. Zambreno, Kate. Heroines. South Pasadena: Semiotext(e), 2012.
7. Zambreno, Kate. Heroines. South Pasadena: Semiotext(e), 2012.
8. Zambreno, Kate. Heroines. South Pasadena: Semiotext(e), 2012.
9. Hedva, Johanna. ‘Sick Woman Theory.’ 7 10 2015. Mask Magazine.
10. BeyondBlue. ‘Anxiety and Depression Checklist: K10. BeyondBlue.
11. Biss, Eula. ‘The Pain Scale.’ Harper’s Magazine 310 (2005): 25-26, 28-30.
12. Biss, Eula. ‘The Pain Scale.’ Harper’s Magazine 310 (2005): 25-26, 28-30.
13. Biss, Eula. ‘The Pain Scale.’ Harper’s Magazine 310 (2005): 25-26, 28-30.
14. Biss, Eula. ‘The Pain Scale.’ Harper’s Magazine 310 (2005)
15. Biss, Eula. ‘The Pain Scale.’ Harper’s Magazine 310 (2005)
16. Jamison, Leslie, The Empathy Exams. Graywolf Press, 2014
17. Jamison, Leslie, The Empathy Exams. Graywolf Press, 2014
18. Jamison, Leslie, The Empathy Exams. Graywolf Press, 2014
19. Jamison, Leslie, The Empathy Exams. Graywolf Press, 2014
20. Jamison, Leslie, The Empathy Exams. Graywolf Press, 2014
21. Macdonald, Helen. H is for Hawk. Grove Press, 2015.
22. Macdonald, Helen. H is for Hawk. Grove Press, 2015.
23. Macdonald, Helen. H is for Hawk. Grove Press, 2015.
24. Mindframe. Facts and statistics about suicide in Australia. 28 September 2016.
25. Department of Health. Aboriginal and Torres Strait Islander suicide: origins, trends and incidence. 1 Jan 2013. 15 October 2016
26. Institute for Precarious Consciousness. ‘We Are All Very Anxious: Six Theses on Anxiety and Why It is Effectively Preventing Militancy, and One Possible Strategy for Overcoming It.’ 4 4 2014. We Are Plan C. 29 8 2016
27. Institute for Precarious Consciousness. ‘We Are All Very Anxious: Six Theses on Anxiety and Why It is Effectively Preventing Militancy, and One Possible Strategy for Overcoming It.’ 4 4 2014. We Are Plan C. 29 8 2016
28. Ann Cvetkovich in Hedva, 2015
29. Hedva, Johanna. ‘Sick Woman Theory.’ 7 10 2015. Mask Magazine.
30. Biss, Eula. ‘The Pain Scale.’ Harper’s Magazine 310 (2005)
31. Nelson, Maggie. The Argonauts. Graywolf Press, 2016.