The personal issue of telling stories about illness is to give voice to the body, so that the changed body can become once again familiar in these stories. But as the language of the story seeks to make the body familiar, the body eludes language—Frank Arthur

Invisible illnesses are whispers, often so quiet they’re not heard. Why it’s taken me sixteen years since my diagnosis to dedicate this writing to disease. Why if I read this work aloud, I won’t make eye-contact with my audience. Sometimes there’s comfort in invisibility, fear in coming-out. Am I loud enough? Should I speak up? I’m trying to speak up. Tell me if you can hear this:

My bed was a boat and I was jammed in a storm that spun me so hard I didn’t know I was underwater, caught in the rushing, didn’t know when it spat me back on land that I looked like a drunk in the gutter. I’d had an injection in my thigh to help slow things down but it was the room that needed a shot; the room needed to stop. The designated vomit bowl was filled then rinsed, filled then rinsed, a repetition lasting more than seven hours.

My body is broken. An earth-quakened country. Antiques have fallen from the shelves, whole houses staked into the floor of the fault. It’s a tapestry, patterns of colours in which a single thread has come undone, but unless I point it out to you, you won’t see the thread because the tapestry’s busy and pretty and so complex. This is my warning: if you cannot see the brokenness, you cannot see me.

I needed to pee. I’d gone several hours without emptying my bladder and even in the midst of bodily disaster, these things cannot be timed. The body, even while breaking, will still try to function in practical ways, and I remember surprise. I’d forgotten my body could do anything but violently malfunction on the safety of my bed. My husband helped me up and onto the floor. I gagged with each step toward the bedroom door.

Presently the broken body is no longer raw. There are chasms, but there are also stitches trying to hold everything together. There are seams with stuffing pushing out. My body was broken, then mended, but not mended, which means broken but manageable: dodgy. I understand that word. So in this dodgy state, with some distance from the trauma of the body caught in the act of breaking, with some of the seam’s stitching still intact, I try to write about what broken means, and now the blue plastic pail:

There was a blue plastic pail brought to my room because the long hallway was a nightmare. At the other end of the hallway was a toilet. The distance from me to the toilet was the long hallway and I was broken and stunned and seamless. I remember the chaos and the horror and as I write this, I am both there and here. There was a blue plastic pail brought to my room so my broken body could piss in it and my partner helped me do this.

What I strive to capture in writing about illness is the authenticity of the moment, which I know is impossible. Hot piss and humiliation and spinning and spinning and helplessness. These words I write now are symbols and I’m trying to give them meaning. These words are quiet; I am trying to speak up. ot piHHI want to write about the point before I can imagine there will be restitution or triumph (two words I don’t understand and I don’t want to repeat). The point before there is language, so how can I begin to translate? This feels like a meaningless exercise, using structure and word-choice and musicality. I’m frustrated, too, because there is a certain amount of aggression in trying to capture what is raw and put it onto paper, but I know if it is released appropriately, it is creation (Rukeyser 1996: 25). I am trying, right now, to create.

This is also what I’m doing: calling to those underwater, caught in the rushing, the drunk in the gutter who’d been counting the screaming bats in the trees, naming each star in the Van Gogh sky before schoolchildren found him unconscious in the morning; calling to the bunyip’s tits after its babies have died and the train bridge marking their baby-graves – I’ve been on that train so I can call to the whistle and the roll and the discarded sandshoe beneath its wheels (where is the shoe’s partner? I call to each photo of missing persons). I’m calling out to invisible diseases, the eyes they have in the backs of their heads to make up for the unseeing, the poison branch catatonically sweeping the shadowed seeds because even bark shedding bark is in cahoots with the sun. I call to blisters, rotting skin and the rotting shed door and the gardening gloves that house the spider, its confusion as it wonders where to tat its final web. I call to shackles in their glinting steal, the key I have always held between the grip of my sinking teeth. And in my calling, I’m recreating my broken body, my pop-and-fizzle smoking television set plugged into the wrong voltage. But I need to ask this: who am ‘I’? And this: what is ‘broken’? Sometimes “I” is supposed to hold what is not there until it is. Then what is comes apart the closer you are to it (Rankine 2014: 71).i

The blue plastic pail sits on the kitchen floor and the mop rises tall and slanted from it. I hate cleaning the floor. Does anyone like cleaning the floor? For some reason, as soon as I feel better after a lengthy sick-episode, I feel I should domesticate. It’s the first time I’ve mopped since the last major attack. I’m reminded of the body breaking so I touch my broken body. I mourn the stuffing coming out of the seams. I am no longer mopping, but pissing.  

Illness, as trauma, ruptures concepts of space and time, thus linearity is not representative of the narrative I tell myself, nor of the one I am trying to tell you. Can you hear me okay? Do I need to articulate? Can you see the tapestry’s wayward thread?

Often the narrative begins in the middle, and sometimes stays there, pissing into the blue plastic pail with the soapy suds, the abject urine now made clean (it will never be clean). The non-linearity of trauma is the stuffing pushing from the seams of the broken body as much as it is my illness oozing out.

Another question: how do bodies break?

  1. With force. (Even dormancy has a lion’s strength, its potency admirable.)
  2. Under shadow. (Unless it’s through high wattage. Whether we can see a body breaking or not, it breaks inexplicably.)
  3. Catastrophically. (Even if one cell at a time.)
  4. While sleeping. (Unless the body is awake – the body is always awake.)
  5. Through a loss of language.

I’m trying to look more closely at my body and the language I have lost so that I can step away from my body, so that I can then learn to live within my body. If I can listen to my body and find its language – not re-remember and transcribe – but live within the language of it now, in present tense, I can piss it out onto the page, the blue plastic pail in a jealous rage.

The dog’s been itching, needs the medicinal shampoo he hasn’t had for months because of the winter’s cold. I pour warm water into the blue plastic pail and carry it to the lawn, where one child holds Tom’s collar and the other two pet him. I pour the water onto my dog and lather on the soap. His tail is tucked inside his hind legs but he likes this, really; you can tell by the way he’s raising his nose that he likes all of our hands on his wet fur. When we’re done, I pour the rest of the water over him, slowly, rinsing the soap from his black fur. He knocks the pail over in his rush to run circles around our yard. It makes me dizzy to watch him, but I love it, because I love him. We all do. And then he rolls around in the grass, grunting like joy, and I put the blue plastic pail back where it belongs: next to the laundry room sink.

Invisible Illnesses

In ‘The Broken Body’ I introduce myself as someone living in the ‘remission society’, a term coined by Arthur Frank in The Wounded Storyteller. I’m considering invisible illnesses and how my own creates identity; lacking (as in ‘absence of normal health’) makes me whole. I’m considering how trauma makes me whole, too, and I’m insisting it is that which has been broken from my body during the trauma that must be made visible, through words. When I tell my story, when others witness my story, I am contributing to my own lived experience of illness, making sense of the whole.

The writing is a mixture of present and past tense, and it is the combination of the two that make me whole as well: the trauma and the settling. I call it a lyric essay, place it in the category of creative non-fiction, because of fragmentation and because of poetry. Like Susan Sontag, I believe illness narratives feed off metaphor, but unlike Sontag, I celebrate it.

In writing about my illness in the present tense, metaphor is heavy. Metaphor is poetry. The present tense chunks depend on a poetic susceptibility – a prose poem style with an analytical basis. The past tense sections are fragmented, representing the fragmentation of serious illness’ disruption and of how we recall trauma. They’re essentially memory working in snippets mimicking what Frank calls the chaos narrative – a sped-up pace, a lot of ‘ands’, a lack of punctuation, etcetera.

Inserted organically in the work are theoretical citations, also contributing to the poetic sensibility, placing flow at a level of high importance, stressing the cited words as poetry in and of themselves.

Wholeness is what I’m working toward in this essay and in all of my illness narratives, and just as language has put the ‘I’ of the piece in a place of completeness, so has language put the blue plastic pail into its rightful place: next to the laundry room sink.

 

References

Frank, Arthur W. (1995). The Wounded Storyteller: Body, Illness, and Ethics. The University of Chicago Press: Chicago and London.

Rukeyser, Muriel (1996). The Life of Poetry. Massachusetts: Paris Press.

Rankine, Claudia (2014). Citizen: An American Lyric. Minneapolis, Minnesota: Graywolf Press 2014.