Dx: Diagnosis and Writing
An Interview with
Steve Finbow
artwork by Karolina Urbaniak
Image: Pawel Hubert Haraszkiewicz.
When writer Steve Finbow got in touch, sending me a link to his book Notes From the Sick Room (Repeater, 2017), I knew there would be a great deal of overlap between our interests. The book is an imagined visit to a hospital that bends the space-time continuum and houses on its wards an array of writers, artists and musicians that suffered from a range of physical illnesses or trauma: from Woolf to Chatwin, from tuberculosis to HIV/AIDS. Steve kindly agreed to an interview, where the focus was his own diagnoses and the way these have shaped his writing. We ended up discussing practicalities and physicalities as well as philosophies at the intersection of the writing body and the written body.
Steve's book Grave Desire: A Cultural History of Necrophilia has recently been republished by Infinity Land Press, in an updated edition illustrated by Karolina Urbaniak, who has generously allowed us to reproduce some of the images here.
Image: Karolina Urbaniak.
When we are diagnosed, it’s almost like having a neon sign switched on that says “body” and we become aware of it as this red pulsing thing that we had previously ignored.
Tell us about your diagnosis.
“Mr Finbow was admitted as an emergency on 13th February 2003 with an episode of vomiting. This was followed by severe epigastric pain, which radiated to the back. He was considered to have an acute abdomen. Interestingly, his amylase was not raised but his diagnosis of acute pancreatitis was upheld by the development of Grey, Turner and Cullen’s sign. Subsequent CT scan of the abdomen showed that he had 95% pancreatic necrosis possibly due to biliary sludge noted in the gall bladder. He was managed conservatively and steadily improved after a period in which he was in incipient respiratory failure. An ultrasound revealed a gallbladder with sludge. He underwent re-imaging of his pancreas, which showed bilateral small pleura effusions and 97% pancreatitis. The splenic artery showed a small pseudoaneurysm in the region of the body of the pancreas and inflammatory changes affecting the posterior wall of the stomach. We decided to proceed with a laparoscopic cholecystectomy. However, afterwards, he developed thrombophlebitis at the side of a vein flow, which was then treated with antibiotics due to positive blood culture for Staphylococcus aureus.”
You reproduce your doctor’s notes, here and in Notes from a Sick Room where you speak of these notes as “portals” of access to your body. Does one need a diagnosis, this powerful act of naming, to access the body, which experiences what it is experiences, regardless? Or doesn’t it? You also say “the body is a technology through which we experience the world” in Notes. Does a diagnosis, then, profoundly alter the way we experience the world through our bodies, perhaps exactly by giving us an access to the body – and thus also how we write these experiences?
If the body experiences what it experiences regardless of a diagnosis, then that event becomes part of the body’s holistic being, a constituent part of existence; to diagnose – to know apart from your body (as against a part of your body) – is to create a metonymical relationship to being in which the focus switches to the naming – the noumena becomes phenomena – the name of the illness is the same as the use of the word “tongue” as a substitute for language. When we are diagnosed, it’s almost like having a neon sign switched on that says “body” and we become aware of it as this red pulsing thing that we had previously ignored. In Saussurean terms, the body previous to diagnosis is a signified – a conceptual ideal form; only when the illness is named does the body become a signifier, a physical material form. The doctor’s notes become the bar between signifier and signified which allows us to understand the arbitrary nature of the body and of illness. Language – and particularly the language of naming, the act of signification – acts as a portal to the understanding of the arbitrariness of existence. In a way, the blood test, the urine test, the lumber puncture, and all subsequent hypodermic needles, cannulas, and stents are metaphors for the idea, the discarded drafts, the pen, pencil, and the keyboard of writing – in the act of which the noumena [signified] (ideal concept of the body) becomes phenomena [signifier] (the body in its stinking, leaking, painful material form).
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In what way do you feel your diagnosis is relevant to your writing?
Prior to receiving this diagnosis – and developing type-1 diabetes – I regarded my writing as more of a pastime, something I had engaged in since the age of 14. I rarely felt compelled to share my work with others or seek publication. I had had a few articles published in Sphinx – a Liverpool University magazine – and some poems in small-press publications when I lived in New York City, but the ambition remained dormant. After the devastating shock to my body – and the six-month recuperation period – I decided that I had had enough of nine-to-five work, that I would concentrate on my writing and trying to get it published. Because of diabetes. I now have to focus on what I put in my body in terms of food and drink, exercise, take insulin; these disciplines feedback into the writing process, concentrating my mind on the time and energy that I have to write and edit.
The simple answer is, without my pancreas exploding, I would never have become a writer.
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Has the diagnosis changed your relationship to writing? To how you see yourself as a writer?
The simple answer is, without my pancreas exploding, I would never have become a writer. Before my diagnosis, I considered myself a reader who dabbled in writing. But I like to think that the writers who influenced me at that time were great stylists of literature – Gertrude Stein, Vladimir Nabokov, Raymond Carver, Joan Didion, Jayne Anne Phillips, Bruce Chatwin, Kathy Acker, Martin Amis and W. G. Sebald. And I read a hell of a lot of books by Paul Theroux as an escape mechanism. In my mind, I wanted to combine the styles of Nabokov, Amis and Sebald and create some form of creative hybrid critical theory/travel writing.
Has the diagnosis made your writing more or less personal, political, and / or public?
Since that illness and other illnesses – some related to the initial diagnosis, some not – my writing has become more personal, more focused on what subjects I am interested in and not the need to write a bestseller or a book that would get rave reviews. If it is political, it is so because of its subject matter – transgressive literature, necrophilia, illness, death, sadomasochism, pornography, plagiarism and the history of counterculture.
Image: Karolina Urbaniak.
Has the diagnosis changed the way you practice writing: your daily routines, the time spent on writing, the way you feel about doing the work of writing? Has it made you understand your approach to the work of writing in a new way?
I try to write on a daily basis, whereas, before my diagnosis, I would only write when I felt like it, which was not often. Nowadays, I feel a sense of guilt if I don’t write or edit something or, at the very least, make research notes. In the past, I used to write in the mornings and edit in the afternoons. However, since I now live by the coast, I have incorporated morning walks for exercise, and I reserve the afternoons for writing and editing. Due to the need to stabilize my blood sugars by eating at specific times throughout the day, I finish my work – even if I am in the middle of a sentence – at 18:30. This is an old trick I learned, but I cannot recall from whom – it helps prevent writer’s block the following day. It is crucial for me to maintain my glycaemic levels within the prescribed limits, otherwise, my mind becomes fatigued and confused (hypo) or tired with blurry vision (hyper). Therefore, I approach my writing with greater diligence and discipline regarding quantity, surplus and the strictness of the editing process.
Diagnosis is the clock which when it chimes sings, “What is the now? Is the now at my disposal? Am I the now?”
It seems to me that your illness has made you more aware of time, made you measure it and measure it out. If pain and disease, like Bataille says, make the individual “become time,” what does that make the diagnosis? A timetable? A clock?
Yes, the diagnosis is a kind of clock that has its own rules (like certain train timetables). I do not mean like a doomsday clock counting down to our ultimate destruction but a clock upon which – even though the seconds, minutes, and hours are uniformly spaced out and divided – the laws of time deform and mutate. In The Concept of Time, Martin Heidegger wrote, “Time is thus an unfurling whose stages stand in a relation of earlier and later to one another. Each earlier and later can be determined in terms of a now which, however, is itself arbitrary. If we approach an event with a clock, then the clock makes the event explicit, but more with respect to its unfolding in the now than with respect to the how-much of its duration. What primarily the clock does in each case is not to indicate the how-long or how-much of time in its present flowing, but to determine the specific fixing of the now. If I take out my watch, then the first thing I say is: ‘Now it is nine o’clock; thirty minutes since that occurred. In three hours it will be twelve.’ What is this now, the time now as I look at my watch? Now, as I do this; now, as the light here goes out, for instance. What is the now? Is the now at my disposal? Am I the now? Is every other person the now? Then time would indeed be I myself, and every other person would be time.” The diagnosis asks the question, “What is the now?” And the answer is that the now is arbitrary regardless of the measurable mathematical durations and divisions and what was earlier (pre-diagnosis) becomes a fantasy past in which time was measured by the Hatter’s watch – “‘What day of the month is it?’ he said, turning to Alice: he had taken his watch out of his pocket, and was looking at it uneasily, shaking it every now and then, and holding it to his ear.” Meanwhile, the future is a nebulous and even more arbitrary later. Diagnosis is the clock which when it chimes sings, “What is the now? Is the now at my disposal? Am I the now?” Some of the first things we ask after a diagnosis are, “How long will the treatment be?”, “How long will I be in hospital?” and “How long do I have?”
Image: Karolina Urbaniak.
Have you moved away from writing, perhaps into other forms of expression or other practices because of your diagnosis?
One of the aftereffects of the original diagnosis – type-1 diabetes – means, however under control that disease may be, I suffer from diabetic retinopathy, macular oedema, cataracts and I am a glaucoma suspect. These pathologies are being treated but my eyesight has worsened. Two years ago, I decided to concentrate on writing about art as I found it easier to research than poring over reading material with tiny fonts. By doing this, I rekindled my earlier love of painting, drawing and discovered how much I love photography (something that has never interested me in the past). I have been experimenting with those media and using AI to create artworks and photography for inclusion in the books.
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Has your diagnosis changed your writing stylistically, or made you understand your stylistic choices in a different light?
A few years ago, while living in Hokkaido, Japan, I wrote a short story ‘Mrs. Nakamoto Takes a Vacation’, which I planned to enter for a short-story competition. I planned to spend a few days editing the draft. Then I caught mononucleosis (I have a compromised immune system) and ended up in a coma. This was around Christmastime and the competition submission cut-off date was 31st December. I have some strange stories about my time in a coma in that hospital but, after a few days, I regained consciousness. Even though ill and exhausted, I needed to edit the story. When I re-read it, it was as though I could see all the excess fat of the sentences and so I blue-pencilled most of the adverbs, adjectives, streamlined the dialogue. It sounds contradictory but I did not have the energy to labour rewriting it, so I dissected it, I gave it a syntax-ectomy. It came second in the competition and was later published in Asia Literary Review and helped get me an agent. That would never have happened if I hadn’t been in a coma. In 2013, my appendix burst and I developed septicaemia, I recovered after a full-scale laparotomy and I have a hideous scar from my pubic bone to my xiphoid process – this became the inspiration to write Notes from the Sick Room – Johnny Bull’s artistic rendering of the wound appears on the cover.
Image: Repeater Books
Has your diagnosis motivated your writing to move in new directions?
If it has done anything, it has moved my focus from fiction to non-fiction or - more honestly – a hybrid of the two, the slipstream – writers like Sebald, Bruce Chatwin, Teju Cole, David Shields, Chris Kraus, Geoff Dyer, Emmanuel Carrère, Alberto Manguel, Deborah Levy, Frederick Reuss – a conflation and complication of literature and history, of truth and manipulation, of acceptance and denial – the illness(es) forced me to confront the facts about my body, my life, and urged me into an interest in what it is to be human and the history of that strange and unknowable situation and then how to respond to and express that exploration. I am not saying fiction does not or cannot do this. I am saying that I would rather know things and experiment with that knowledge than imagine them and expect other people to understand that imagining.
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Writing is always an act of becoming – once I have become, the writing is over, I am spent.
I am interested in how this distinction between fiction and non-fiction fits in with one of the central suggestions of Notes, that illness is a becoming in the Deleuzian sense, parallel to Deleuze’s idea of writing as becoming. If illness is transformative, if recovery is a re-becoming, then is writing about it part of this process of becoming, in a way that fiction would not be?
According to The Deleuze Dictionary, “Becoming is the pure movement evident in changes between particular events. This is not to say that becoming represents a phase between two states, or a range of terms or states through which something might pass on its journey to another state. Rather than a product, final or interim, becoming is the very dynamism of change, situated between heterogeneous terms and tending towards no particular goal or end- state.” So, to re-examine some key concepts – becoming is the bar between the signified and the signifier, the point of nuclear fusion between noumena and phenomena, the impossibility of the now-point between earlier and later, the eternal dynamism of becoming between past and future. I have started to think that the distinction between fiction and non-fiction is just as arbitrary, that we are composed of just as many stories as we are of atoms and that the relationship between our actual selves and the stories we tell of ourselves is just that – a composition. Importantly, the word becoming is a gerund in which the action of the verb transforms into a perpetual-motion noun. Writing is always an act of becoming – once I have become, the writing is over, I am spent. Recuperation means “to get again” or “to hold, contain” and it is a period in which we try to get again (recover / re-member) the effects of the illness, to get again a sense of our selves now forever changed, and writing about that is an attempt to hold and contain our thoughts about the trauma in a constant becoming. Whether this is more attainable through nonfiction or fiction, I am not sure – I found it in writing nonfiction, believing fiction to be an act of further removal rather than a means of recovery.
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If writing means holding on to the becoming of illness, did it form any part in your recovery?
While in hospital after the initial diagnosis, I kept a journal, something I had never done before. When I had recovered, I stopped. After a few months, I read the entries, surprised by what I had undergone – some of my thoughts on pain, illness, dying – and these helped me understand the seriousness of the illness, how close to death I had come and how I needed to change my life – these notes shocked me into an analysis of what Michel Foucault terms “The care of the self”.
Image: Karolina Urbaniak.
So, is it perhaps the case that writing about the illness is necessary to make the illness transformative, and that the diagnostic notes are a kind of linguistic initiator of or necessary condition for this process? Are doctors, then, gatekeepers of this linguistic approach to illness?
Writing transformed my way of thinking about my diagnosis and my illness. The doctor’s notes acted as a kind of initial abstract to the longer thesis – keywords from which to elaborate. But I am not advocating the primacy of writing as a way to understand the transformative powers of illness but it is the means I use to try to interpret events.
Yes, of course, naming is part of categorisation, which, in turn, is a form of control, a way to inaugurate some kind of power over the individual and the disease/illness. Naming is part of the hierarchy of control; however some words/terms are still taboo when we go on to explain the diagnosis to friends, relatives and loved ones – cancer, AIDS, syphilis, hepatitis B, even genital warts (condyloma acuminata) – where there is an impossibility of naming it. However, if writers such as Fritz Angst, Chrsitopher Hitchens and Hervé Guibert write about their illness, they are transgressing the hierophantic language and rites of the medical profession. Foucault – “The art of language was a way of ‘making a sign’ – of simultaneously signifying something and arranging signs around that thing; an art of naming, therefore, and then, by means of a reduplication both demonstrative and decorative, of capturing that name, of enclosing and concealing it, of designating it in turn by other names that were the deferred presence of the first name, its secondary sign, its figuration, its rhetorical panoply.” In other words, control and the preservation of the hierarchy of signs. By writing about illness, by naming it as a subject worthy of literature, I take a hammer to the façade of the medical institutions.
Illness is redemption. Redemption from the base, the selfish, the vulgar and a remembrance and restoration of what it means to live and think like humans.
Has writing allowed you to work through a diagnosis, or formed part of recovery, or perhaps it has not, and how do you feel about it? Has writing been a way to come to terms with or understating a diagnosis, or to question, reframe or work against it?
To paraphrase Alain Badiou’s introductory sentence to Gilles Châtelet’s To Live and Think Like Pigs, after my diagnosis, I had to learn a controlled violence, a restrained yet biting sarcasm, to understand how to be discontent with the world and with oneself in the world, and, even more so, engender the courage to hold fast, to be solitary, in the face of contemporary abjection and develop the rage to live amid a “terrible melancholy: the melancholy of seeing that we are solicited (and increasingly so) to live – and to think – like pigs.” Illness and the recovery from that trauma changed me irrevocably. It tempered my instinct to react with violence to the slightest provocation – be that verbal retaliation or physical confrontation. I had to learn to control the fight response. My arrogance and selfishness knew no bounds. Where I had lied to others, I had to be honest but honest without conceit. Where I manipulated people because of the needs of my ego, I had to retreat and listen. Rather than control, I had to contemplate. More so, where I had lied to myself – about who I was, where I came from – I had to deliberate and assess the origins of that self, the reasons why I neglected the truth, why I denied honesty, why I had constructed a persona so shockingly and brazenly false. I had to recreate who I am and destroy who I was. Illness taught me to be honest with myself, not through weakness but through the strength to admit weakness, the fortitude to look beyond the shallow and the surface and the conspicuous consumption of things that outwardly built and sustained a simulated persona. Illness forced me to accept the truth of being, the importance of the care of the self. If I could not lie to myself, I could not lie to others. If I had to care for myself, I had to care for others. I had to learn not to live like a pig or, more accurately a porcupine – a stachelschwein in German – a “sting pig” – a human being constantly stung by what they consider the faults of others, constantly retaliating with their own stinging (stinking) ego and hubris. Both creativity and illness speak of transformation, metamorphosis, of the page and the canvas and of the body and so the mind. Friedrich Nietzsche claims, “A third thing is the absurd sensitivity of the skin to little stings, a kind of helplessness in the face of every little thing. This seems to me to result from the immense squandering of all one’s defensive energies which every creative deed, every deed that derives from one’s own-most, innermost depths has as its precondition.” The body weakens as it creates, becomes vulnerable to infection, helpless in the face of the world but then immunizes itself against this through an understanding of the font of creativity. Or, as Nietzsche states, “And how could I bear to be human if the human being were not also a composer-poet and riddle-guesser and the redeemer of coincidence? / To redeem that which has passed away and to re-create all ‘It was’ into a ‘Thus I willed it!’ – that alone should I call redemption.” Illness is redemption. Redemption from the base, the selfish, the vulgar and a remembrance and restoration of what it means to live and think like humans.
Image: Karolina Urbaniak.
In a sense having an illness is a form of identity – I am English, I am diabetic, I am an atheist, I am an asthmatic, I have (dirty) blonde hair and green eyes, I have high blood pressure.
I am reminded here of your quote from Hitchens about how disease makes you realise you don’t have a body, but you are a body – and that the redemption you speak of comes precisely from acknowledging this. However, I am also thinking of Foucault’s consideration of Galen and the “increased medical involvement in the cultivation of the self” – if ever there was a quote apt for our times where a diagnosis, for good and ill, is increasingly an “identity.” Can you say more about this, in relation to yourself, but also the idea of pathology as a form of narcissism, that you propose in your book.
In a sense having an illness is a form of identity – I am English, I am diabetic, I am an atheist, I am an asthmatic, I have (dirty) blonde hair and green eyes, I have high blood pressure. The “increased medical involvement in the cultivation of the self” manifests itself in the medical record as autobiography (rap sheet). And that involvement (interference) means strictures on what I can eat, drink, how much exercise I need to take, the forms of insurance open to me, even my applications for loans, pensions, mortgages, etc. My narcissism becomes evident when I say that I am diabetic and immediately say “type-1” because I do not want people to think that I do not eat healthily (I do) or exercise (I do). I have even considered starting a petition to rename type-3 diabetes to make it distinct from type-1. When I see old friends now, instead of boasting about how many illegal drugs we’ve consumed, we joke about how many prescription drugs we need to take. The false extension of life through medication is the ultimate form of narcissism. Foucault again, “The body the adult has to care for, when he is concerned about himself, is no longer the young body that needed shaping by gymnastics; it is a fragile, threatened body, undermined by petty miseries.” In Bodies That Matter, Judith Butler explains these connections, “In the essay on narcissism, then, Freud first considers organic disease as that which ‘withdraws libido from love objects, [and] lavishes libido on itself’. As the first in what will become a string of examples, he cites a line of poetry from Wilhelm Busch’s Balduin Bablamin on the erotics of the toothache: ‘concentrated is his soul... in his molar’s aching hole’.” An awareness that you are a body is an awareness that you are a sexual body – even when dead, the rigor of the dartos muscle in the scrotum may lead to post-mortem ejaculation of semen, or the description of withdrawal-sickness from William S. Burroughs’s Junky, “I lay on the narrow wood bench, twisting from one side to the other. My body was raw, twitching, tumescent, the junk-frozen flesh in agonizing thaw. I turned over on my stomach and one leg slipped off the bench. I pitched forward and the rounded edge of the bench, polished smooth by the friction of cloth, slid along my crotch. There was a sudden rush of blood to my genitals at the slippery contact. Sparks exploded behind my eyes; my legs twitched – the orgasm of a hanged man when the neck snaps.” Illness makes us acutely aware that we are selfish replicating machines continually staring into a mirror playing back our own desires on a continual narcissistic loop.
Image: Karolina Urbaniak
About Steve Finbow
Steve Finbow’s non-fiction includes Allen Ginsberg: Critical Lives (Reaktion), Grave Desire: A Cultural History of Necrophilia (Zer0 Books) republished in an updated and illustrated edition in 2024 by Infinity Land Press, Notes from the Sick Room (Repeater), Death Mort Tod – with Karolina Urbaniak (Infinity Land Press), The Mindshaft (Amphetamine Sulphate), Polaroid Haiku – with Jukka Siikala (Infinity Land Press), The Life of the Artist Niccolò di Mescolano (Alberegno Press). Sanbashi – a biography of the postwar Japanese photographer Toru Nakagami – will be published in 2024. He is currently working on a metafiction about the Führerbunker.
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About Karolina Urbaniak
Karolina Ursula Urbaniak is a multi-media artist and co-founder of Infinity Land Press. Her practice transcends traditional boundaries, blending digital innovation with tangible artistic expression. With a portfolio that spans photography, video art, sound design and sculpture, Urbaniak is renowned for creating works that engage audiences on a profound level.
Urbaniak draws inspiration from literary prose, folklore, true crime and nonfiction, exploring themes of human destructiveness, the poetics of madness, violence and creativity, limit experience, sexual transgression, and all that lies beyond the pleasure principle.
Her work has been featured in numerous publications and shown at festivals worldwide. She lives and works in London.
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