‘Illness,’ Susan Sontag writes in the opening pages of Illness as Metaphor, ‘is the night-side of life… Everyone who is born holds a dual citizenship, in the kingdom of the well and in the kingdom of the sick.’ Running my experience of childhood through my mind, I’m not sure I’ve ever lived in the kingdom of the well. Compulsions laced the daily drives to school which arched around the city from Lower Mitcham to North Adelaide. My compulsive counting would distract me from the aggressively cheerful 1960s British pop Dad would play over and over.
The kingdom of the sick is an old friend. And so, I imagine cities built for illness. They are not like the ones we live in: there are ramps and elevators; no fluorescent lights or radio pumping in supermarkets. Most of all, in my mind, there are no psychiatric institutions for there is no need. We do not lock people away, for their difference is not frightening. Really, we are all the same.
The social constructionist theory of illness suggests that while a person may experience impairment or disease, the experience of disability is social. If, due to severe anxiety, I have a focal seizure where the world blends and shifts so that everything appears flat, that is an impairment. When this makes me walk slowly—arms and fingers spread to prevent myself falling—and a nearby family wraps their arms around their child to keep them close, this morphs my experience into one of stigma. My impairment becomes disability.
In the 1970 book The Social Construction of Illness, Eliot Freidson writes:
[W]hen a physician diagnoses a human’s condition as illness, he [sic] changes the man’s [sic] behavior by diagnosis; a social state is added to a biophysiological state by assigning the meaning of illness to disease. It is in this sense that the physicians creates [sic] illness . . . and that illness is . . . analytically and empirically distinct from mere disease.
I was sick before, yes, but the labels around psychiatry and mental health, as per Freidson’s argument, are what made me ill. I could have continued my life stamped with seizures, and the condition would have just been part of me. It would have become part of living, indistinct and shapeless.
But now, here, I live in another place. I am distinct from my illness. It weighs me down, heavy with connotations about what a person with psychogenic non-epileptic seizures (PNES) can be. I am defined by what I am not; I do not have epilepsy. Instead, the seizures are born from the mess of my mind. I look for a solution, if there is such a thing. I take pills that leave me dead on my feet to erase it (to no avail). The psychiatrist talks of new meds: stabilisers, anti-psychotics, pills, wafers. They try to mask what is there.
But nothing works and I live in my illness.
When I first became ill with PNES, I did not recognise my own street, a leafy lane in Adelaide’s CBD. Not only was I taken outside of myself, but outside of my home too. The Penguin crime paperback-green of my fence was not mine. My hands and forearms did not resemble my own, either. I would drift in and out of living with no sense of place, or self, to tie me down.
As I walk through the city, I see it has taken on my illness. There is the corner I had my first focal seizure; the street I walked down where my feet bled and I didn’t notice the blood pooling in my shoes. Living here, it is as imbued with my experience as I am. By naming my illness, like Freidson writes, I have saturated where I live with the illness in my head.
Among the shining browns of the Victorian-era Mortlock library, a friend asks me what I am.
‘What do you call yourself? Disabled?’
I don’t know how to answer her so I give an answer that is loose, still rattling around in my head. My fingers run up and down the leather-lined desks.
‘I… I’m chronically ill.’
She seems satisfied with my answer but chronic doesn’t feel right either. I like the taste of it; serious and sharp in my mouth. But how regular must illness be to become chronic? If I have a seizure once a day, once a week, do I still fit the label? What if, travelling through Europe with Mum, I feel well for a while?
In Australia, the Disability Discrimination Act 1992 (Cth) defines disability as, amongst other standards:
a disorder, illness or disease that affects a person’s thought processes, perception of reality, emotions or judgment, or that results in disturbed behaviour;
This is where I fit but don’t feel as if I do. I’m not disabled enough, as though there can be a threshold to disability. It’s all in my head, as if that discounts me from having a disorder. I am ill, I know this. But now, where I live is starting to look like illness too.
On a windy Summer day, I wait for a bus. I try not to drive now, which leaves so much time for waiting on worn benches bolted to the ground. I see an ordinary man walk past. Blue short-sleeve button-down, tucked into cargo shorts. Straw hat covers the top of what I imagine to be a balding head.
I look down and notice his feet. His left foot, farthest away from me, wears a black sneaker. It’s unmarked and looks expensive. Inside it is a black sock that hangs on tight up to his mid-calf. On the other foot, a white canvas slide. Rather, it used to be white. It looks as though he has worn it for years; it is grey all over and nears black around his toes. His foot is dirty too, as though it cannot possibly be clean as it rests in the worn fabric.
The ordinary man is split and I can’t understand why. His foot is not injured; there are no bandages and no odd rhythm to his step. Why have one immaculate shoe, a pristine outfit and leave his right foot in such despair? For days, I cannot shake the ordinary man. Something is clearly and incomprehensibly askew.
I go to the Pitié-Salpêtrière Hospital in Paris. I’m travelling with Mum and have stolen an afternoon away from galleries and restaurants to look for answers. I walk past a grimy train station under a thick bridge with tents and couches lining a fence. I find the old building; it looks more like a landmark than a working hospital with its arches and ballooning oval roofs. This is where it all began, not with me, but other bodies. Other women who seized up in their surroundings and were locked away in the Salpêtrière to be studied by neurologist Jean Charcot, assisted by Sigmund Freud and Pierre Janet.
Next to the chapel, as large as any throughout France with its imposing walls that radiate cool air, is a park. It’s a simple park, a large rectangle dotted with trees and benches. On the edge, close to the chapel’s door, are people squatting. Their knees are spread, breasts arch out in points and they lift wooden slabs of varying weights above their heads. Their muscles are thick, their legs and arms are stocky. It takes a moment to notice they are rooted to the ground. The women are carved from trees; they are forever lifting, struggling to carry what has been given to them. I’m taken in by these representations of illness. Illness isn’t the right word—they’re patients. Earlier in the week, I went to Descartes University’s medical museum. I was unmoored by the battered cases of knives used for amputation and greying anesthesia masks with thick straps. But I am used to the medical, the tools used on the unwell. I’m not used to seeing the patients who live with the illnesses that, as Freidson said, doctors give them.
I came to the Salpêtrière for answers. I wanted a piece of who I am to suddenly fall into line, as if it could click into a puzzle and ‘solve’ what happens in my head that makes white walls grow. Some people with PNES, once they understand that the root is psychological, are cured. This hasn’t happened for me but has been a hope that hurts to live with. I had thought, deep in my mind—for I could never speak it or think it openly—that going to Salpêtrière would shake something loose. If my home had become illness, maybe somewhere new could hold a cure.
Sometimes a building is just a building.
Katerina Bryant is a writer based in South Australia. Her work has appeared in Island Magazine, The Lifted Brow and Southerly, amongst others. She is currently working on a memoir that discusses finding belonging in the history of hysteria.