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writing illness, writing time

Published 26th May, 2020 in MRP Guest Blogger

This is the last of my series with Margaret River Press online, so—if you’ve read the other blogs this month and find yourself here—thanks for making it. I feel like you deserve a bop (and if this is the first you’ve happened to click onto —you, too, deserve a bop):  
            (for your reading experience, you might consider playing this.
                                           maybe even put it on repeat?
                                               it really feels like it should be played on repeat)

I have been thinking about illness, lately—by which I mean for the last six or so years. And presently, of course, ideas of illness are necessarily immanent, pressing upon our collective imagination. Towards this topic, Susan Sontag opens her 1978 essay “Illness as Metaphor” with a tremendous flourish of prose, writing:

“Illness is the night-side of life, a more onerous citizenship. Everyone who is born holds dual citizenship, in the kingdom of the well and in the kingdom of the sick. Although we all prefer to use only the good passport, sooner or later each of us is obliged, at least for a spell, to identify ourselves as citizens of that other place.” [3]      

In critique of the cultural and literary metaphors laid over tuberculosis and cancer, Sontag clarifies that her “point is that illness is not a metaphor, and that the most truthful way of regarding illness—and the healthiest way of being ill—is one most […] resistant to metaphoric thinking.” [3] In her 1989 follow-up, AIDS and Its Metaphors, she goes on to say:

“Saying a thing is or is like something-it-is-not is a mental operation as old as philosophy and poetry, and the spawning ground of most kinds of understanding […] Of course, one cannot think without metaphors. But that does not mean there aren’t some metaphors we might well abstain from or try to retire. As, of course, all thinking is interpretation. But that does not mean it isn’t sometimes correct to be ‘against’ interpretation.” [5]

As Sontag says, illness is no metaphor to the one who is ill. But she is right to suggest that there are metaphoric gestures by which we (the sick, and the not-yet-sick) may further understand our relationship to illness, either in movement towards, or in resistance against, that metaphor. Image, or language, can be as potent and freeing as it can be misdirected and insufficient. How else to explain my fixation with Sontag’s opening flourish; its night-sides and kingdoms? For myself, having lived with HIV nearly six years (a relatively short time for those who have lived far longer, yet still—for me—considerably more than one-fifth of my time so far), I am constantly negotiating the question of how to write this phenomenon in my own body, and how it might be understood—via metaphor, via the act of writing—in and of itself. I would suggest some wrinkles here—one: that HIV/AIDS is an intensely historicised illness, and our historical and cultural understanding of it does not necessarily align with the contemporary lived experience of the illness. Two: the contemporary lived experience of this illness (at least, as I must acknowledge before I begin, in the context of privilege that my citizenship, class, and race has afforded me) is, in many ways, unseen and un-felt. To comply with antiretroviral treatment, here and now, means to never be sick and to always be sick. Likewise, one’s relationship to the illness is encouraged to be equivalently “invisible”. For those of us living with disability, invisibility can be a privilege, yes—and I do not deny that sometimes, it has been a blessing to “pass by unseen”; but in its oppressive wholeness, the invisibility of PLHIV only limits the language and images by which we might imagine ourselves, which only serves to put us further at risk of harm.  

One “symptom” of the COVID-19 pandemic, for me, has seen a reframing of this question, and a possible sense of freedom from the prevarications, ambiguities and “soft coming-outs” that have marked my relationship to writing, and living with, HIV. For me, to be PLHIV is to acknowledge that all my acts of writing, or making, exist in inescapable relationship to the act of living with HIV, even when they have proposed to be not. Nevertheless, it is still frightening to put this into writing—into the ‘certainty’ of publication, the digital archive—one, because I cannot speak with sureness to anyone’s experience of illness but my own, but also because that is the nature of the hostile environment, living with HIV. I have been trained into this invisibility. But somehow, now, it feels ever more important to own that relationship; to make visible these strategies around conceptualising illness. And—without suggesting that these attempts may help to better articulate our relationship to this present pandemic (I would be grappling with these strategies, regardless)—perhaps there is a usefulness in writing it. First, two happenings:   

Last December, I was invited by Dr Renee Newman to participate in a conference at Edith Cowan University/WAAPA called choreographies of thought, responding to prompt how things might be otherwise and the late Dr Maggi Phillips, who, in her essay “Choreographies of Thought: Dancing Time Back Into Writing”, argues:

“Thought […] is akin to an underground agent in the territories of the imagination, scratching away in the formlessness of chaos. Thinkers and artists grapple with this unregulated realm of yet-to-be-knowledge, straining to delineate incipient patterns in the flux through whatever means of articulation might be at their disposal. […] In that simple suggestion of ‘how things might be otherwise’, Foucault raises, not so much a revolutionary approach to the surface of knowledge by way of writing but… he forges an attitudinal inroad to knowledge via articulations of imaginative impossibilities (or paradox).” [285]

More on this later. Then, this February, I attended the SymbioticA lecture “Bricolage: Cellular Performance of Bioengineered Automatons”, in which researcher-artists Nathan Thompson and Guy Ben-Ary spoke to the development and creation of the Perth Festival/Fremantle Arts Centre work Bricolage—articulating another wrinkle in my processing. In engineering the constant motion and inherent liveliness of cells, Thompson and Ben-Ary were determined to create a work that could be tangibly seen, which did not rely on imagination or metaphor; not shrouded with conceptual distance. The difficulty is, of course, I am no scientist. I am not a virologist, immunologist, etc. I am forced to write with far less certainty. Every time I cut my finger, or bloody my nose, I cannot see the liveliness of HIV: it always only looks like blood. It may be that I must shroud myself in layers of abstraction—degrees of removal from what is “real” and what is really happening. And yet Thompson and Ben-Ary’s obstruction remains critical to my thinking, even as I face the question within the realm of “metaphor”. How can the invisible be made seen

Transmission and diagnosis have metaphor we can (perhaps too) easily grasp onto. In AIDS and Its Metaphors, Sontag both articulates and criticises the tendency to view transmission and illness as “foreign invasion”, finding herself deeply resistant to the language of war in expression of our bodies and “becoming sick”. This is language we see replicated in our cultural understanding of the COVID-19 pandemic (we are “fighting the invisible enemy”, I read on the ABC). This may not be untrue, but Sontag rightly points out how easily the sick are associated with the sickness, writing, “patients are thought of as victims. Victims suggests innocence. And innocence, by the inexorable logic that governs all relational terms, suggests guilt.” [11] Under the strain of this metaphor, who becomes “the enemy”? Or, in further reckoning with transmission, the latent Anglican in me has often turned to Biblical referents. Equally problematic? Yes, but at least referents, one hopes, with the potential for a critical Queerness: the fabulous beheadings of Judith’s sword and Salome’s dance; Revelations’ Boschian aesthetic potential to re-make the world. Formulations of transmission are easier, though, than the continued articulation of the illness itself—returning, again, to its crucial silence. 

How are we to satisfactorily write the unseen; to write silence? Perhaps not in the illness itself, but in the hostile environment, which exists both within and without, where you are forever uncertain which is worse—to be known, or to allow yourself to pass, unknown? Do we write it in the language of apps, of Grindr, which—if not metaphor—certainly has its violent code (the language of “dirty”, “clean”)? Do I find it in the spaces between immunology appointments, where even in the rational knowledge that my viral load has remained “undetectable” for nearly six years, a creeping paranoia might write uncertainty into the language of horror, as if I were Mia Farrow in Rosemary’s Baby, sans a final scene? Or in the quotidian tragedy of a former partner and I, who—both trained in the invisible—kept our positive statuses from one another, until even the revelation that we’d been hiding in the same cage was not enough to repair the silence between us? None of these are satisfactory. All of these are symptoms—none of these write what is happening inside.    

And further to metaphor, how are we to contend with narrative—that prison, narrative. If a school leaver seroconverts via unsafe tattoo needle, and subsequently infects his girlfriend, as I uneasily recall in a story from some years ago, The West Australian will proclaim, with vile satisfaction, their lives “ruined”. When I am diagnosed, mothers and doctors will rush to tell me that this “is not the end of the world”. Do these narratives align? Or—how to continue to reconcile this illness as one of gay men only, when heterosexual sex accounts for the fastest growing rate of new transmission in Australia? We know the narratives that hold sway over us are false. And yet, even when narratives break, their trace remains. I would be hesitant to say that heterosexual men have the “same” HIV as my HIV. Because they do not. The narrative is not the same. Because—perhaps—the metaphor can never be the same.  

To write the present, we must wrestle, constantly, with history. I do not mean to turn my back to, or disrespect, the weight of the past—but my feelings towards the historicisation of this illness are complex. We have no choice but contend with this trauma, when—for instance—a colleague of mine confessed, at the onset of COVID-19, that he was suddenly beset anew by visions of the early 90s: by the death of community; by each blood test. Or my own unshakeable anxiety upon reading reports of HIV antiretrovirals being used as coronavirus treatment, wondering if and when the selfish majority might come to claim my medication like it were the last roll of toilet paper at Coles. This is a legacy we have no choice but to live inside. But must our narrative, our “metaphor”, always be located within that claustrophobic aftermath? We cannot not acknowledge the magnitude of loss inherited with this illness—how foolish and cruel, were we to forget—and yet sometimes I fear that we will allow nothing else to be written. Would diagnosis have felt so much like the death of my future were it not for all the literature, all the cultural narrative, pointing towards fatality? 

On the other hand, perhaps there is a framework of maturity, the perspective of living within an experience, that shifts this narrative illusion. Reading Timothy Conigrave’s Holding the Man as a teenager represented a capsule of tragedy, coloured with my ignorance, my fear. But to think of it now, it is not at all about death—it is, blindingly, a book that writes life into being. Same goes for Derek Jarman’s Modern Nature, both a diary and a vital document of growth, of process. And perhaps I am drawn to Sontag’s prose because it places illness in the language of ‘citizenship’, which in literal applications is violently bound to my own history. Becoming PLHIV, for me, meant that the prospect of continued, permanent residence in Singapore (the home of my early adult years) was finished, and the scholarship study I was to take up in China would be rescinded. And although these stand as “lives” or futures lost, I must also now look at them as lives “gained”—the future repositioned by the relationship between illness and borders—just as diagnosis could also be, critically, a future “gained”. On the day of my diagnosis, my former lecturer Edith—the first person I disclosed to—said, with a clanging resonance that echoes down the years, “Well—I guess your life begins now, doesn’t it?” In the way that it might be individually possible to rail against inequitable laws restricting the residence of PLHIV and find the means to move on, it must likewise be possible to honour the historical (and ongoing) legacy of death, while disentangling our individual selves from it; while continuing to strive towards new metaphors for the invisible (potential) present. 

One strategy, I think, is alluded to above. What I can offer myself is to write illness by writing time. Phillips, in “Choreographies of Thought”, describes the way time can be organised as choreography, and I think of this every morning when I take my antiretrovirals—that I am choreographing my relationship to this illness, by virtue of repeated gesture, in the choreography of time. And strategies for writing time, I think, are relatively simple:

Day 1 …

         Day 2 …
                   Day 3 …

                             Day 4 …

                                          and on time goes. 
All we have to do is write, and so time might be understood in the writing. 

When I was diagnosed, my then-boyfriend pointed me to the introduction of the late José Esteban Muñoz’s Cruising Utopia: the Then and There of Queer Futurity, and it has followed me through creative processes and the practice of living many, many times since:

“Queerness is not yet here. Queerness is an ideality. Put another way, we are not yet queer. We may never touch queerness, but we can feel it as the warm illumination of a horizon imbued with potentiality. We have never been queer, yet queerness exists for us as an ideality that can be distilled from the past and used to imagine a future. The future is queerness’ domain. Queerness is a structuring and educated mode of desiring that allows us to see and feel beyond the quagmire of the present. The here and now is a prison house. We must strive, in the face of the here and now’s totalising rendering of reality, to think and feel a then and there. […] Queerness is essentially about the rejection of a here and now and an insistence on potentiality or concrete possibility for another world.” [1-2]

To return to Phillips, what I finally offered at choreographies of thought was, perhaps, an unfinished thought: the idea of a choreographic or poetic practice (or, indeed, a praxis of living), framed by Muñoz and in the imaginative articulation of transformation. The metaphor by which I am able to write HIV is that, in acknowledging the limitations of the present—the repetitions of medication, of memory, of residence, the hostile environment, the state of now-and-notyet sick—I may choose to reformulate the illness as one of continuous movement; of re-inscription. My cells are in endless motion; in gesture towards multiplication. Phillips’ “imaginative impossibility” is to write the idea of my cells as new each day—in the choreographic arrangement of time. I know, in literal terms, this may not be objectively true—it cannot, as in Thompson and Ben-Ary’s cellular work, solve the problem of being seen—and antiretrovirals, by design, keep illness never and always in me by virtue of suppression, a form of stasis. But, as Sontag would say, with the “inexorable logic that governs all relational terms”, stasis—to remain the same—must also carry within it the constant, im/possible potential of complete transformation; of the rejection of the “here and now”. This is how I feel able to write upon illness: by an unreachable future continuously scratching the present into fresh being; by the immanence of illness as a site that points towards a potential re-articulation of life.   
                                  (and whenever you’re ready, you can turn off Groove Armada)

Read Andrew’s first blog post, “not writing Lear: against productivity, against the hustle in crisis” here, his second post, “Lake, draft” here, or his third post, “gesture towards”, here.

Andrew is a Queer writer and performance-maker creating work between Boorloo/Perth and Singapore. He was awarded Overland’s Fair Australia Poetry Prize 2017, and his poetry, fiction and creative non-fiction can be found in numerous publications nationally and internationally, including CorditeWesterlyScumMag, Margaret River Press’ We’ll Stand in That Place and Proverse Hong Kong’s Mingled Voices series. As a performance-maker, he has twice been awarded the Blaz Award for New Writing, and makes up one half of independent theatre outfit Squid Vicious (@squidvicioustheatre). He is re-learning the flute in isolation, which he occasionally broadcasts on Instagram @spandyandrei, amongst tragic selfies and pictures of birds. 

Works cited

Muñoz, J.E. (2009). Cruising Utopia: the Then and There of Queer Futurity. New York: New York University Press.

Phillips, M (2014). ‘Choreographies of Thought: Dancing Time Back Into Writing’, Doctoral Writing in the Creative and Performing Arts, Libri Publishing. 

Sontag, S (1978). Illness as Metaphor, New York: Farrar, Straus and Giroux. 

Sontag, S (1989). AIDS and Its Metaphors, New York: Farrar, Straus and Giroux. 

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