ENACTING THE DISEASE — a conversation with David Coventry [...] ELLIPSIS

David Coventry's new novel PERFORMANCE is informed, formed and de-formed by his experience suffering from ME, an illness of chronic systemic dysregulation that makes ‘normal’ life impossible, fractures the supposed link between the self and its biography, narrows and distorts the focus of awareness, and disestablishes comfortable conventional notions of the ongoingness of time. Dealing not much at all with the half-life of bed and sofa that is the main occupation of the chronically ill, the book is rather a multi-stranded literary performance of remembered travels, conversations, stories and encounters, seemingly Coventry’s own or those of persons close to him, burning with moments of great vividness and intensity yet also constrained by the blockages and blanks imposed on narrative by his illness, which reaches backwards through the medium of his memory to the whole of his life and beyond. Coventry’s illness is an unconsented catalyst to ways of writing freed from the performative conventions of literature and into territory where the urge to impart sense and form burns where both sense and form are impossible. The book contains much that I found compelling, thoughtful, memorable, suitably frustrating and disconcerting. It is a unique contribution to the literature of illness. — Thomas Pors Koed

THE INTERVIEW:

TPK: The epigraph of the book is from Thomas Bernhard: “Instead of committing suicide, we go to work”. Do you agree with Bernhard that we can only tolerate the intolerable by “living against the facts”? If so, what are the implications for, firstly, living with illness? And, secondly, literature?

DHHC: Sure, I think one has to believe in this to keep living and working when your body, including one’s mind, refuses to operate as it might optimally do. It’s interesting, I have been lately trying to take into account the philosophical reasonings behind the whole mind/body argument. Whilst it seems that the dominant philosophical propositions suggest that there is a clear separation between the physical brain and the mind, empirical experience convinces me otherwise. And sure, philosophy isn’t fact, but it is beyond useful for breaking down truths. And we like to get truth and fact mixed up a great deal. So, with that in mind, I feel like I live well beyond the facts. My mind is at the whimsy of my neurological disposition to function sub-optimally. My personality – this supposed separate entity – appears to change when in the throes of deep illness. The philosophy of the mind is kinda nonsense when you’re pinned so close to it.

As Elaine Scarry stated some years ago now, pain, at the level of words, is ‘language destroying’. And, beyond this, pain forges its own non-verbal lingos through the random fluctuations of the nervous system, through contortion, through absence, through disrupting presence and voicelessness.  Hence, I think the implications of illness, when placed up against language, become far more interesting than what the body’s up to. I’m probably contradicting myself.

TPK: A key passage of the book, for me at least, is as follows [pages 45—46]:

“I’ve made the decision to include in this telling the multiple episodes of travel I was asked to undertake, the jaunts and flights, legs and stopovers. I went to these places as an author, a person who doesn’t exist other than as a function, an imagined soul rearing out of texts. A person not sick but something else, another kind of societal illness. I include these episodes because they seem another world, twilit and impossible to describe. This impossibility seems a way to explicate the state I exist within, open to the tendency of language to destabilise and deform what we seek to know. The bus, the train. Flight. They seem big too, though unremarkable by normal standards. The alert sense that if something were to happen in these moments, I’d fall and fall forever. These sensations and events seem queerly linked to living. There, time passes, and countries come and go.
“I write these because it is a far more interesting exercise than describing my life on the couch, or in bed. Which, no doubt, I’ll get to. And I over-write, over-write everything just to keep my head in the game. Minimalism has me sense that there’s nothing on the page. Indeed, I don’t read anymore, just sense.”

I am interested in the implied bifurcation, or dis-integration, of a chronically ill person into the ill self “on the couch, or in bed” and the surrogate or performed self who perambulates or is perambulated through some vestigial semblance of the life expected of that person in, or by, the ‘kingdom of the well’. In your experience, what are the reasons for, or drivers of, this ‘performed’ life? What are your strategies for making this performance successful, or even possible? And what are the rewards and what are the costs of this performance?

DHHC: If you want the truth: drugs. To enable myself to step beyond my sick self and become a performative ‘author’ I have to take a fair amount of very strong pain killers. The amount that would normally knock people out. Whether they have effect on the inflammatory pathways or dull the already present inflammation in my neuro-system, I can’t tell you. But beyond the mere physical there are certainly other things at play.

In the auditorium you are the creature of the audience. They don’t know how much cognitive disarray you are in; rather, you are the ‘author’, one invented by expectations of what text presents to them and what they read of that. One can play to this cultural phenomenon, I guess.

Really, the most testing moments come when I play music live. More often than not I end up lying down on the stage unable to move in stupefying pain. That’s not part of the performance, but rather its artefact. Hence, the result can be quite embarrassing. And then in days or weeks that follow I’m unseen and having a pretty rotten time of it (I have just—finally—got out of bed after three awful weeks after playing a show in Auckland; nobody who saw me on that stage knows this). But, as I say to people who ask why I do it to myself, the same thing could happen just by going to the letterbox, or – ironically – to the doctor or physio. My life is kind of an experiment, really. I push it quite hard, because: Why not? I have no idea whether I’ve addressed your question.

TPK: To what extent is the written life, or the performed life later sought through writing, a compensation for the inability to live a life beyond the couch and the bed, or even to foresee the possibility of a life beyond the couch and the bed? Is the over-writing you speak of an over-compensation, or is it just a way of reaching towards something that will never anyway be reached?

DHHC: Ah, over-writing is just the easiest way for me to write. It’s the way my brain creates sentences and sense. It tends to have the effect of making me feel/seem alive rather than dead. And I often feel, after a week or four of lying in bed without interaction or contact without the outside world, quite strange, unconnected and — in fascinating ways — quite near death. So, it’s very much a means for me to create the absent world. And, as long as I have been a writer, this has been the case. Any style of writing when it comes to this disease is an under-compensation; nothing could make up for the life lost.

TPK: Writing allows a writer to maximise their experience in a way that that experience in ‘real life’ doesn’t allow, especially for the ill — by editing out the blank times and incapacities. A novel is — all novels are — a compilation of optimal moments, slip-stitched in time to create an artefact usually far smoother than the life which brought it forth. ME is notable for its written-off days, weeks, months, years, and for the inconsistency, or inconstancy, of the sufferer’s capacities, both mental and physical. Was there a temptation when writing this novel to misrepresent the disease, and how did you ensure that this was resisted successfully?

DHHC: Ha! I think any attempt to represent the disease is by nature an act of misrepresentation.

During the writing process I gradually intuited that if I let the language flow naturally, that the broken nature of my language/narrative capacity and output would actually be a pretty naturalistic representation of the illness. I got lost so often writing Performance because of my incredibly broken memory. It was often quite terrifying. I would sometimes have moments of terrible worry that I wasn’t representing the dead-in-bed part of my life enough, but in the end I was quite happy with the balance and explanations I gave to the reader.

I very much used what was at hand. I had travelled to Austria in 2016 and met Bernhard’s brother (the first part of the book written). My brother had recently told me the whole story of his time in the Kaikoura with my father; I had recently been to Waiheke where I met the singer from Mayhem; I had recently completely mucked-up the hiring of painters for the house; my friend had recently donated her kidney to her mother and I’d recently been to Italy and Berlin (but not, obviously in 2027) and to Croome Court. These could each of been thoroughly different stories—but had I used moments from other parts of my life the novel’s the yield, I believe, would have been exactly the same. It was all about turning them into mechanisms to tell my illness narrative.

TPK: You deliberately avoid describing your “life on the couch, or in bed” — which is the main occupation, after all, of the chronically ill. Such a life is a minimalist life, close at times to non-existence, and yet you reject minimalism in your writing because it approaches this non-existence — “nothing on the page”. How do you so successfully convey the experience of a minimalising illness through a maximalist literary approach — what you modestly term “over-writing”?

DHHC: That’s a very good question and the answer could be as vast and complex as you wish. But simply it’s a case of going back to what I said earlier about the maximalist being my default language form. It’s easy for me to write in that form. For better or worse I’m not a minimalist writer. It would have been much harder for me physically to attempt it in a minimalist mode. It would also have been a completely different book. If, in my old age, I develop the skills of a minimalist perhaps I’ll write another novel that will thrillingly never leave the bed.

Thank you for saying I successfully pull this off in the maximalist form. I think just being very aware of my skills and weaknesses and letting the best part of them come to the fore in a way that elucidates the minimalizing effects. I think if the book does succeed it does so because of its awareness of language’s propensity to cloud, blur and make strange the reader’s expectations of the real. It was, in some ways, the easiest of the books I’ve written so far. Except for one part. That was hard.

TPK: Marguerite Duras spoke of despair as “the unknown one carries within oneself: writing is what is attained. It’s that or nothing. One can speak of a writing sickness.” And you write of the author as “a person not sick but something else, another kind of societal illness.” In writing, and perhaps especially in writing about illness, wherein lies the illness, and whose illness is it?

DHHC: Yes, I was kind of making a joke about the whole death of the author thing. That the author doesn’t exist except in the mind of the critic/reader. I feel like this is exasperated by the demand for writers to be public property, that phenomenon like writers festivals and interviews and such forth create — rather ironically — further distance from the text and, I guess, the author themselves. I mean, surely spending four years working fulltime on a book is enough, but it doesn’t seem to be. That’s the societal illness; the demand for the author to be present. And it’s also not a complaint; I enjoy not being a sick person for forty minutes, being others’ inventions and ideas of self.

TPK: “The page resists pain so earnestly,” you write. “Pain is what occurs in spelling mistakes and bad grammar.” Is it necessary to ‘break’ language or to ‘break’ form in order to convey pain — and the other experiences of illness?

DHHC: Form and language are always ‘broken’, always resisting the completion of fact or truth statements, of pure narrative — possibly it’s our attempts to correct this issue in that could be theorised as the actual breaking of form? So maybe I was just allowing language to be language? But yes, I wanted the reader to experience the pain of it all as they tried to understand that which can’t be understood via a text that can’t be fully understood in a logical sense, only in an artistic/literary manner.

I focused on my own experience as a casualty of ME to enact (rather than merely represent) the disease, making available the experience of the illness to the reader in a way ‘real-life’ presentations of the illness — like we might find in something like Jennifer Brea’s documentary, Unrest — don’t really achieve. I was really grateful for her film, but soon after its opening she kinda reverts to a reliance on interview and discussion. Thereby deploying an expository aesthetic that diminishes the affective realm of the participatory experience. So that way her film ends up seeking authority through the objective gaze of the now engaged third-person perspective, thereby presenting the illness from the perspective of the exterior, creating a narrative that presents as reliable and authoritative, narrated from a position of distanced social immunity from the illness. In doing so, it portrays the disease as a known construct. Which it isn’t. So, I felt it important to go after the third person and chuck them in the thick of literary pain.

TPK: “The bus, the train. Flight. They seem big,” you write. Incomprehensibly big, I would imagine, to someone for whom even the smallest action is frequently unachievable. To what extent do you think ME could be considered as an illness of scale — scales of effort, of size, of focus, of time, and of meaning, perhaps? If we are stuck for endless periods on the couch under the tyranny of the small, or expending all our energy on what we could term quotidian microtasking, how does this change the way we think of the world of action, achievement and busyness that lies outside and beyond us?

DHHC: Yeah, my partner’s life outside of ours is incomprehensible to me. I don’t know how she does all she does. I love sport (always have) and I watch a player rush to celebrate a try or a catch and I’m like: Please don’t!  I want everyone to remain still beyond their prescribed tasks of pushing in a scrum or running into bowl. I guess I’m just shocked at how much energy the world has. But then again, I have achieved everything of note that I have achieved in life with this disease—so observe me shrugging.

TPK: Large swathes of the book are written as conversation. Does this spring as a compensation — or a compensatory impulse, rather — to the isolation and quiet of illness? Is writing conversation a way of overcoming or of circumventing some of the limitations placed on writing — on literary production, so to call it — by a disease like ME, which seems to entail problems with initiation, shape, consistency and persistence, conversation perhaps somehow even enabling text to write itself, to use the energy of remembered or imagined conversations to move forward: one thing and then another thing and then another thing…? Do you think that illness has changed the way you write conversation, or the function of conversation within your fiction?

DHHC: I basically just write what’s easy for me. Dialogue is very, very easy for me to compose and it writes itself. Not a lot deep thought goes into the moment of writing, that all comes later when going back over it. Editing is the real moment of composition. In all reality, I have learnt all facets of writing while with the illness. My Publishing life is shorter than my ME life.

TPK: Many of the events, situations and characters in the novel appear to be borrowed from your so-called ‘real life’, but they seem to have been altered by entering into fiction. Obviously, we don’t need to consider mapping any of the particulars of these changes, but what is the relationship between personal biography or ‘real life’ and the fictive reality of this novel? How has illness changed the relationship for you between ‘real life’ and fiction — both with regards to your writing of fiction and your attempts at ‘real life’?

DHHC: I think there’s always a tension between our lived and imagined lives. I think I just amplified the poles of this phenomena to stretch this to breaking point. I guess the most fun I had with this is with the Deborah character, and what I end up doing on the last page. That’s probably the most satisfying thing I have pulled off in a book to date. And, therefore, real-life.

TPK: Was the work originally conceived as a novel — before writing began — or did it originate as a number of disparate pieces or tendencies that at some point coalesced into a novel? If this was the case, when was this point, and how did this change what had come before? What input — helpful or otherwise — did you have from other people as to the eventual form and scope of the novel?

DHHC: Always a novel. I’m a novelist. Never anything else. I honestly don’t really remember what effect others’ ideas had on the book. There were great conversations, but what ways they affected the form or scope is completely missing. I just know I’m always trying to do way more than what is possible with the mind I had coming into the writing of the book. I think it’s vital that every author pushes their writing intelligence beyond their known capacity every time they start something new. Otherwise, what’s the point?

TPK: Is the convention of plot something that is anathema to someone with ME — either in their own life or in a novel? Do you think that the granularity of experience for the sufferer of ME can be a gift as well as a problem for literary production? Do you feel that illness has liberated you from some of the more stifling novelistic conventions? If so, what remains?

DHHC: What remains? I reckon 99% of the literary act remains open to the writer when you remove story as the main driver (or, at least I think so). In truth, plot's not something I know a lot about, so it was a relief to have a project where I could sideline it to an extent and still have a viable text. It’s a strange thing, but I couldn’t tell you the plot of any of my favourite novels as it’s not something that pushes me forward as a reader or a writer. I find the main weakness of my first two books is the fact I felt I needed to have plot to hold up what I find important in fiction. I guess it’s through the process of writing more and more books that one learns what a book needs and doesn’t for oneself to be satisfied. But to again contradict myself, I still had to use things such as plot to keep the reader engaged, it's just that the story lines don't resolve as they might normally do. I had to do other things with the measures of form to make the book 'real'. As you say, plot (one's own and that of the world around you) really is impossible to hold onto with this disease.

TPK: How would you describe the form of the book? How does this relate to your experience of illness?

DHHC: Oh, the form of the book is that of a novel about ME/CFS. Very simple.

TPK: You describe very well what you call the “literary terror” resulting from Thomas Bernhard’s use of “inversion, repetition, perfection, correction and eventual destruction,” for instance in Correction, the book which revealed to me — in an indelible moment of literary terror — that thinking will lead inevitably to self-destruction. What literary strategies did you use to ensure that the reader experienced the book as you intended it to be experienced, and that they were sufficiently disconcerted by it to gain some understanding of the experience of illness — if I am not making a presumption of your intention?

DHHC: I just let the language be as natural as possible. Literary fiction naturally disrupts the ‘real’, so in letting these disruptions occur freely and resisting the urge to correct or circumvent you have the novel’s apparent experiment. In many ways I find the book far less experimental than my earlier books because of this. But it obviously doesn’t read like that. I think the lesson we can take from Bernhard is that our destruction is inevitable, so we may as well make it beautiful.  

TPK: If it hadn’t been for his lung disease, Thomas Bernhard might have been a singer and not a writer, so for us — at least those of us who prefer reading a novel to listening to lieder — Bernhard’s illness was a literary catalyst — in fact he described his illness as one of the “mainsprings of his existence.” What do you think might be different in your life, and in your literary life, if it weren’t for your illness?

DHHC: Ah, it’s a cruel question. I have had the conversation with a number of people over the years about this. I have a funny feeling having this illness, one that makes forming even basic sentences really difficult, has made me push myself beyond my self’s self. Writing is impossibly hard to start with, so maybe that barrier evaporates because of life’s immense difficulty.

TPK: In your consideration of your ADHD, you describe your tendency to “drive dangerously fast, because to drive fast meant [you] were forced to concentrate, and without that concentration [you] felt [you] were a danger on the road.” Does this have a corollary in your approach to the production of literature? What problems or benefits does ADHD bring to the production of literature?

DHHC: The effect of hyper-focus. One of the oddities of ADHD is the capacity to focus on and attain flow with an activity that you find engaging (most things aren’t engaging in anyway or form). If I don’t find it engaging, it’s impossible. I find listening to people speak very, very hard. I find receiving instruction extremely difficult. I kinda have to be inventing whatever it is in front of me from scratch in order to learn it or follow it (which might be an answer to your earlier question about fiction vs reality in the book). I had no idea that I write scenes, chapters, humans incredibly quickly until I did my masters. I couldn’t figure out why it took my classmates forever to write a single chapter. The idea of it drove me mad. But flow, but hyper-focus — that initial part of writing is made extremely easy by ADHD. However, the part I feel is the real writing, the carving, understanding, considering, re-conceptualising and re-writing — that takes me a very long time. And it doesn’t begin until I have 100,000 words sitting there.

TPK: Tell us about the black pages in the book. How do these relate to literary antecedents such as the black pages in Tristram Shandy? Is a black page blank or is it the opposite of blank? How does a completely black page differ from a completely white page?

DHHC: Originally my cousin Rachel Thornton’s art work acted as dividers for the sections. They worked wonderfully and were the ‘other voice’ I request for the book during an early chapter. Unfortunately it was too expensive to publish the book like that, which was a huge disappointment. When rethinking it I requested black pages as the other voice. They should definitely be experienced as part of the text, be ‘read’. There are white pages in the book; you could look at the black pages as an inversion of what those wordless pages represent (a pause in thought/action/capacity). Such a reading could suggest the pain of action, of absolute presence, the deafening noise of the total everything that I experience when deeply sick. I don’t think they are passive in any way.

TPK: Tell us about your doctoral thesis, and about its relationship to this book.

DHHC: Oh, it was super fun. Here’s the abstract, cos I am just too tired to re-think it for you:

This creative writing hybrid thesis offers a literary response to the lived experience of the Myalgic Encephalomyelitis (ME) sufferer. It consists of two parts: first, an introduction to the key themes and theoretical notions; second, Performance, a novel combining aspects of memoir, creative non-fiction and fiction. The first section establishes ME as a disease with a naming problem. It goes on to ask, by examining three filmmakers (Angela Schanelec, Todd Haynes and Alexander Sokurov) dealing with sickness and death, how these artists compose the affect of illness. Furthermore, I ask what, through the manipulation of their narratives’ affects, is the yield of these artworks in regard to the knowability of illness? I conclude that within illness discourses, as within the body, there exists a capacity for a response matching that of the autoimmune. This response is an attack on the discursive foundations of cultural immunity that traditional illness discourses are designed to protect. Through the manipulation of their narratives’ affects, the filmmakers describe how established narrative devices mimic the autoimmunization process. Instead of attacking an organism, these attack ‘the self and the self’s self-referentiality… produced in the discourse of immunity’. Performance builds on this concept, elucidating and enacting the disease experience for the reader through its portrayal of a literary autoimmune response.
The project aims to give expression to the illness through form and narrative manipulation, charging and expanding the narrative space of previous understandings of the sufferer. The creative work carries criticality through its positing of key questions. Namely: in what manner might literary form be transformed to compensate for the contours of a disease without an adequate medical definition, name, or even agreed-upon pathology? Is there a mechanism inherent in narrative that replicates the unknowability of ME and at the same time allows experiential insight into the disease, hitherto unavailable in literature surrounding the illness? As a work representational of disability composed whilst in the throes of the self-same disability, this thesis claims hybridity as a legitimate research approach. And although this thesis is not directly addressed to the considerable literature around pain studies, disability studies and body studies, its concerns intersect with those fields. It is, via what Dr Oliver Sacks describes as the ‘paradox of disease’, a piece of research unwritable from the other side of the illness. It aims to counter the assumption that the sickness is unknowable by substantiating the experience of ME through fiction and non-fiction. The presentation of repeating fictional elements in the same space as non-fiction creates a dissonance comparable with the lived experience of ME and the autoimmune response. Indeed, as the disease constantly misleads and misdirects the sufferer, consciousness is disrupted to the point that memory and fiction often seem fused in a horror of mental uncertainty. This thesis seeks a narrative form that performs similar effects to those achieved in the films analysed here whilst maintaining a readability that facilitates a beneficial understanding of ME as a contribution towards the canon of literary offerings on illness.

TPK: What examples of illness literature would you recommend?

DHHC: Lying: A Metaphorical Memoir by Lauren Slater. It’s a great book. Does a slightly similar thing to what I have attempted, and I used a line of hers near the end of novel. But I haven’t read many books because, you know, I can’t really read.

This interview was conducted in July 2024.

David Coventry is the author of the novels The Invisible Mile (2015), Dance Prone (2020), and Performance (2024). He is published in Aotearoa by Te Herenga Waka Univeristy Press.
Thomas Pors Koed is the author of, most recently, Some Things Wrong (2023).

Author photograph by Jecht Taylor.