Notes from a rheumatoid sound body
by ED GARLAND
- View Ed Garland's Biography
Ed Garland is the author of Earwitness: A Search for Sonic Understanding in Stories, and researching sonic experience in contemporary fiction.
Notes from a Rheumatoid Sound Body
by Ed Garland
A neurophysiologist planted two cold needles in my left forearm and asked me to move my fingers. The needles were wired to a black box in an open suitcase, and this box was connected to a laptop, and we were in a dark room in a church-shaped clinic, 75 miles from my home. For several months, I'd been living in a strange new body. All of my small and large joints were weak, inflamed, and painful: the fingers, wrists, elbows, shoulders, hips, knees, ankles, toes, and jaw. My GP had ordered several tests and assessments that were all inconclusive. It hurt to move and it hurt to stay still. I could only sleep in shallow fragments. As I moved my fingers and the neurophysiologist stared at my hand, we heard, from the long strip of perforations that allow a computer's interior to complicate the air above its keyboard, sounds like slow rips of thick fabric, and firecrackers scattered five streets away. A yellow line-graph scribbled itself across the black laptop screen. We moved the needles to my other arm, and my legs, and heard the same sounds.
These sounds made me think of octopus consciousness. In his book on this subject, Other Minds, Peter Godfrey-Smith uses the phrase 'a crackle of metabolic electricity' to describe the neurological activity of the cephalopod.1 He thus alerts our mind's ears to the electrical charges that flow through the octopus's semi-autonomous arms, and the enigmatic colours and patterns that sweep across their skin. I was reading his book so that I could spend time with boneless beings. While I could not close my hands, or properly bend my knees, or reach above my head, it was soothing to read myself out of my skeleton. I asked the neurophysiologist if he could tell, by listening to the crackles, what had happened to me. I needed him to say there was something wrong and that he could fix it. He took a deep breath through his nose, and paused. 'Neurophysiologically speaking,' he said, 'you're fine.'
I'd just started a PhD, researching sonic experience in fiction. I encountered Deborah Kapchan's idea of the sound body. This idea reminds us that the world of sound is always touching us in one way or another. As Kapchan puts it, an 'intertwining of world with self' happens in the sonic dimension: 'sound affects: we feel it and it creates feeling'.2 There are many other writers who offer similar descriptions of our bodies' intertwining with sound, and it is generally presented as a life-affirming thing. But my sound body was now full of symmetrical agony. Audible events were diffracted through pain and fatigue. Sometimes the shush and fizz of waves breaking on the beach near my home in Aberystwyth felt like a rough sheet dragged across my skin.
The writer Margiad Evans, in her 1946 Autobiography and archived letters, describes thrushes whose songs 'throb like arteries'.3 Stars that 'crackled and spat'.4 And from beneath the nearby woods, 'the booming breath of life below ... like a great land organ'.5 She heard the world as a vast living body of which she was a small part. By noticing the shimmering rhythms of fire-sounds in air-filtered starlight, she affirmed the visual aspect of the sonic dimension. As she began to experience the effects of epilepsy caused by a brain tumour, she wrote 'my tiredness is like an endless noise'6. This line lived in my head as I sought a diagnosis. My fatigue was like pedalling a bike with the brakes on.
When I slowly bent and flexed my right index finger, and pressed its first knuckle against my ear, I heard leathery creaks, boots compacting powdered snow, and a mature tree's drowsy limbs. These are the sounds of granulomata -- gatherings of plasma cells, lymphocytes, and macrophages.7 They made me think of DJ Vadim. In the middle of his 1996 album U.S.S.R. Repertoire, there is a track called 'Melodies in Hinge Creek (Light my Fire)'. I hadn't heard it for many years, but here was its memory, released from my knuckle. Replaying the album on Spotify, the track's 44 seconds of squeaks and creaks are mostly high-pitched, but there are a couple of slow and quiet ones that resemble the sounds of my joints. The rest of the album has slurred voice-loops, squelchy pitched-down drums, muted crackles and gusts of static all spliced into a queasy flow, like a sonic analogy of my body's altered parameters.
Ten months after the onset of my symptoms, I undressed for a rheumatologist. Those ten months were 438,300 minutes in which there was no location, position, or activity that didn't cause pain. I was seeing a counsellor in the hope I could unearth a psychosomatic cause, having read Suzanne O'Sullivan's book It's All in Your Head and begun to think that maybe my condition was a sort of weapons-grade emotional quirk. The rheumatologist squeezed my knuckles and asked me to move my limbs. I showed him how my fingers only close halfway and made a nervous joke, which I imagine he hears all the time, that I'm no use in a fight. I was still buttoning up my shirt when I sat back down opposite him at his desk and he said, in a casual tone without a pause: 'well you've got rheumatoid arthritis'. Hearing that phrase instantly released me from a debilitating uncertainty, and I felt a strange elation, like I'd won a lottery in which the top prize was a chronic illness.
Most people seem to imagine, reasonably enough, that all arthritis equates to osteoarthritis, which happens when a particular joint, abraded by life, begins to hurt. When I say 'rheumatoid arthritis' to somebody, the familiar noun 'arthritis' sweeps away the preceding, peculiar adjective 'rheumatoid', which defines the autoimmune origins of the joint pain. Almost nobody asks 'what's that?', and a few people say 'oh, my dad has that in his shoulder', which means he has some other, non-rheumatoid kind of arthritis. I could correct people by saying something like 'actually I have a systemic autoimmune error that is itself the cause, not the result, of damage to and inflammation of the joints, as well as a fatigue that arises in slow waves,' but really -- and I might be letting the side down here -- I can almost never be bothered.
When the radio plays a song I don't like, I could cross the room to turn it off. Or I could save myself some toe and ankle and knee and hip and finger and wrist and shoulder and elbow pain by letting the song play on. Acceptance is a key component of chronic pain management.8 If I can accept these pains then surely I can accept a couple of songs, instead of amplifying the negative powers of music by lamenting. The category of music, like the category of pain, is a judgment of contextualised sensations.9 The band called Bombay Bicycle Club, like rheumatoid arthritis, is a frightening mistake, but it doesn't have to ruin your afternoon whenever you become aware of its presence in your body. Certain songs, though, like certain pains, are so alive with their particular formal characteristics that it's impossible to hear through them to their general physical basis.
The Conservative party have been in charge of the UK for over five million minutes. The current Prime Minister is a man called Alexander Boris de Pfeffel Johnson. To hear this man speak is to be reminded of a passage from James Kelman's novel How Late it Was, How Late, in which the narrator notices, in his Glaswegian accent, 'all these fucking stupit voices that make ye think of double-helpings of fucking raspberry fucking trifle [... ] with lumps of fresh dairy cream'.10 The narrator's materially specific words evoke the lubrication of the vocal folds and the gelatinous resonance that characterise the stereotypical Conservative voice. The roots of a chronic healthcare crisis run through those voices that cheered in the House of Commons when, in 2017, all but one of the Conservative MPs voted against a pay rise for NHS nurses.11 But Conservative voices are not always loud and gooey. For example, the poet Sean Bonney describes Iain Duncan Smith as 'that talking claw'.12 As Secretary of State for Work and Pensions from 2010 to 2016, Smith introduced 'reforms' to state benefits that seriously harmed and in many cases killed the people they were supposed to support. A subsequent investigation by the UN found that Smith's administration, supported by the Liberal Democrats in what was then a coalition government, constituted a 'grave and systematic violation of disabled people's rights'.13 He received a knighthood in 2020. His favourite rapper is Eminem.14 14 million people voted to intertwine themselves with these voices, and Johnson won the 2019 election with the biggest Conservative majority since 1987.
The organisation called Versus Arthritis declares that it is 'mounting a loud and visible opposition to arthritis'. On their website, capital letters -- typography's top volume -- scream at the visitor to 'ADD YOUR VOICE' and 'CONTINUE TO CHALLENGE' and 'GET INVOLVED' and 'GET HELP'. Alongside these words are several large photographs of people who have straightened their arms and turned a palm towards the camera, like they are directing traffic to stop. These stop signals are aimed at you, the person viewing the website. Hoping for reassurance and information, you discover visual hostility. The text commands you to do something, while the images demand that you cease. The semantic dissonance produces a headache. The name and style of Versus Arthritis, whose informative leaflets and flyers are piled up in the waiting areas of NHS rheumatology departments, suggest I should oppose the arthritis at the same time as I accept it as a lifelong condition. I would prefer to care for the arthritis -- to discover its needs and try to meet them. Opposition would be better directed towards the talking claws and jellied throats that profit from the destruction of public healthcare.
Mary Lowenthal Felstiner, writing 20 years ago in the Journal of Feminist Studies, asked if the 'slow repetitive course' of arthritis in all its forms is 'always muffled by more glamorous frailties or more clamorous crises of health'.15 I like the single-letter change that transforms 'glamor' to 'clamor' and thus amplifies the potential abrasiveness of cultural allure. The rheumatoid sound body needs attention and consideration, but the clamorous activity required by the performance of loud opposition can be exhausting. Increasing a sound's amplitude and vigour is no guarantee that its intended recipients will act upon its meaning, and the Conservative ear is especially uninterested in the sounds of other people's pain. However, there are still benefits to this kind of opposition. As Ellen Clifford puts it, 'an attitude of resistance to that system provides a way to form connections with others, make sense of the world and regain a more positive sense of self'.16
The website of the National Rheumatoid Arthritis Society has informative videos about what a person can expect from their disease and its treatment. The action in the videos is slow, the piano soundtrack is bland, and the presenter takes long pauses between sentences. At first, these audiovisual features seemed awkward. But there is also a sonic model for self-care here: instead of clamour or glamour, there are frequent audible rests, and a total absence of the demand to be productive.
On a Sunday morning sat by the window with my feet up on a stool, my left ankle clicked for the first time in over a year. This sound is both heard and felt as a shot of relief: it is evidence that my medicine has an effect. Methotrexate and Sulfasalazine reduce inflammation by generally suppressing the immune system. The reduction in inflammation means there is enough room within the joint to allow for the movements that lead to the rapid formation of small cavities that are the probable cause of the clicking sound.17 I have regained the body's version of tape-hiss or vinyl crackle -- the audibility of my material basis.
While the medicine brought some improvement, after six months of treatment there had been no further progress. My pains and restrictions remained, and my white cell count was decreasing. On the 8th of January 2019, I phoned the hospital's central appointments line, because I hadn't received the letter I'd expected, that would inform me of an appointment within a few weeks. The hold music is either recorded or synthesized classical acoustic guitar with swirling scratches of distortion. Every ten seconds, a recorded voice informs me of my position in the queue, and the number denoting my position is given by a different recorded voice spliced into the flow of the first, between the words 'number' and 'in the queue'. The first voice is an interruption and the second is an interruption of an interruption.
Nested interruptions are one of the sonic signatures of administrative delay. At railway stations, for example, the automated announcement of a delayed train interrupts the general ambience. But this announcement is a general-purpose template that leaves spaces for the train's destination and the number of minutes by which it is delayed. These spaces are filled by different voices that are audibly outside the flow of the template. To gather all the information about the delay requires you to listen to three different sound recordings in a sequence such as 1-2-3-2-1. My phone calls to book GP appointments, regular blood tests, to check that the pharmacy have my prescription, and to the hospital followed this pattern, where 1 is the hold music, 2 is the delay announcement, and 3 is my position in the queue. On the phone to the hospital, the nested interruption collects most of the audible signatures of the rheumatoid sound body, recalling Felstiner's 'slow repetitive course,' Evans' 'endless noise', Godfrey-Smith's 'crackles', DJ Vadim's staticky splices, and the clicks and pops of joints when I am taken off hold and speak to a woman who checks my details on the system. Alarmingly, she couldn't see that I had any appointments at all. 'So when will I be able to see the rheumatologist again?' I asked. 'Well, she's having a bit of a backlog at the moment,' she said. 'How long's the backlog?' 'A year.' Her flat and fast delivery of these last two syllables indicated that such a backlog is nothing unusual. But those two syllables caused a jolt of adrenaline and a hollowed-out feeling to spread through my body from my stomach. They compressed the emotional freight of a plausible future -- 365 potential days in which there would be no improvement -- into a half-second. I can't remember how the phone call ended, but the next day, the expected letter arrived, which told me of the appointment in a couple of weeks, that the woman on the phone assured me did not exist.
Lennard J. Davis warns us that 'by narrativizing an impairment, one tends to sentimentalize it'.18 I have attempted to avoid sentimentality by keeping these notes in a fragmented form, without smooth transitions between one idea and another. Maybe the ideal essay is the written performance of a focus maintained, and these notes, in contrast, are the written performance of a focus scattered. Many of the tracks on the DJ Vadim album are under two minutes long: sonic abstractions of brevity, to which I have formed a sentimental attachment.
The Imraldi auto-injector pen clicks when I press the tip of the needle into the flesh below my navel. I feel a biting sensation while I watch the pen's thin window turn yellow to indicate the syringe has emptied. After two seconds, I hear another click, the kind you can imitate by pressing your tongue to the roof of your mouth and snapping it away. Then I wait another ten seconds before taking the pen off my skin. In this way, every other Wednesday, I subcutaneously absorb 40mg of adalimumab: a click to begin, a click to end, and in between, the stab of the needle. I enjoy the pain of the injection, both because I can control it and because the medicine this pain delivers has diminished the intensity of all the other pains. I might still need to rest, but I can walk almost as far and as often as I'd like now, and because of this transformation, I love to hear those two clicks every two weeks. In my newly-calm state, I am more relaxed about my tinnitus -- the quivering ringing sounds that have been a permanent presence in both of my ears for several years. The process of accepting these sounds, partly acquired through listening to loud music through cheap earphones, now seems like it was a kind of training exercise in the subsequent acceptance of rheumatoid arthritis.
In the pages of an anti-vaccine 'truth paper', I saw an advert for a burglar alarm next to an advert offering training as a sound therapist.19 The two adverts presented the two sonic poles of the paper's paranoia: our homes are at risk of invasion by thieves, while our bodies are at risk of invasion by 5G radiation and Bill Gates' evil microchips. Sound, it seems, might protect us against both of those things. Inside the paper was an article on 'health sovereignty'. The article had two columns of text either side of a collection of photographs: a huge pile of colourful fruit and veg, someone doing yoga in a park, someone doing yoga on a beach at sunset, and someone throwing a TV out of a window. The text wants us to 'free' ourselves from 'external noise' and declares: 'I do not listen to complete strangers about what is best for my body, mind, and soul'. The sonic parameters of health sovereignty, unsurprisingly, are an auditory xenophobia. I heard these same parameters quite often in the early days of my illness, sometimes from acquaintances and sometimes on YouTube videos called things like 'My Rheumatoid Arthritis Journey', in which 'mainstream medicine' is 'unnatural' and therefore bad, and only the self knows what is best for the self. In contrast, the sound body, with its emphasis on 'intertwinement', reminds us that we are all unavoidably involved in each other's lives. I listen to complete strangers all the time, like the ones who research, design, produce, recommend, and deliver my bi-weekly injections of adalimumab, a complex and 'unnatural' molecule that reduces the amount of an immune system protein called Tumour Necrosis Factor, which of course sounds like a heavy metal band. Every time I hear the clicks of my injector pen, I think to myself: these complete strangers are some of the most caring people I don't know.
In November 2019, at the first Aural Diversity conference in Leicester, Jay Afrisando presented ' The Real Laptop Music :))'. On a screen in a small auditorium, we watched two hands interact with a laptop, and listened to sounds recorded by the laptop's built-in microphone -- we heard it hear itself. My wife, Helena, and I held an inflated balloon between our fingertips, which made some of the sounds both audible and tactile. Afrisando's piece revealed a source of sounds I'd always experienced but never explicitly defined to myself: the plastic bodies of electronic devices. The artwork's smiling title acknowledges that this sound-source tends to go unheard in the world of electronic music. The fingers on the screen make only non-functional actions -- they do not type, or click the keypad, but tap the laptop's body and scrabble across its keys. These actions are edited into rapid sequences: an electronic intensification of the laptop's acoustic timbres. The soft shocks of sound in the balloon crystallised the idea of aural diversity: how 'everybody hears differently [... ] yet the world of music and sound design is built on an assumption that everybody hears the same'.
Later in the conference, I presented a paper on Margiad Evans' sonic awareness. Just before I began, I found myself unable to muster the dexterity and pain-tolerance necessary to clip a microphone to my shirt, and felt lucky that Helena was there to do it for me. My paper did not mention the rheumatoid sound body, because I did not have the words for it then. But it was slowly taking shape. The sounds that alerted me to bodily interrelationships also reminded me that the rheumatoid sound body is not mine alone. Although I 'have' this condition, my wife and family also 'have' that part of it that can only be seen, heard, and felt from outside my body. It is a shared intertwining, and I would much rather follow it from within than be forced to witness it from a distance.
- Godfrey-Smith, Peter. Other Minds: The Octopus and the Evolution of Intelligent Life. William Collins, 2018, p. 95. ↩
- Kapchan, Deborah. "body." Keywords in Sound, edited by David Novak and Matt Sakakeeny, Duke University Press, 2015, pp. 33-44 (p. 40). ↩
- Evans, Margiad. Autobiography. Arthur Baker, 1974, p.5. ↩
- Autobiography, p. 10. ↩
- Autobiography, p. 37. ↩
- Evans, Margiad. Letter to Gwyn Jones. 25 January 1942. Box 1, Folder 1. NLWFACS870 Margiad Evans papers. National Library of Wales, Aberystwyth. December 2018. ↩
- A Dictionary of Immunology, edited by W.J. Herbert and P.C. Wilkinson, Blackwell Scientific Publications, 1971, p. 156. ↩
- Walton, David. A Practical Guide to Chronic Pain Management. Icon, 2019, pp 39-40. ↩
- A Practical Guide to Chronic Pain Management, p. 40. ↩
- Kelman, James. How Late it Was, How Late. Minerva, 1995, p. 113. Thanks to Alex Hubbard for alerting me to this book. ↩
- Cairns, Craig. "WATCH: Tory MPs cheer after blocking pay rise for NHS nurses." The National, 17th March 2017, www.thenational.scot/news/18339251.watch-tory-mps-cheer-blocking-pay-rise-nhs-nurses. Accessed: 15th May 2020. ↩
- Bonney, Sean. "from Letter Against the Firmament." The Penguin Book of The Prose Poem, edited by Jeremy Noel-Tod, Penguin, 2019, p. 20. ↩
- Pring, John. "Anger over 'utter hypocrisy' of Iain Duncan Smith knighthood." Disability News Service, 2nd January 2020, www.disabilitynewsservice.com/anger-over-utter-hypocrisy-of-iain-duncan-smith-knighthood. Accessed: 15th May 2020. ↩
- Nsubuga, Jimmy. "Iain Duncan Smith raps Eminem lyrics to diss Diane Abbott." Metro, 8th May 2017, https://metro.co.uk/2017/05/08/iain-duncan-smith-raps-eminem-lyrics-to-diss-diane-abbott-6623318/. Accessed: 18th September 2020. ↩
- Felstiner, Mary Lowenthal. "Casing My Joints: A Private and Public Story of Arthritis." Feminist Studies, vol. 26, no.2, Summer 2000, p. 274. ↩
- Clifford, Ellen. The War on Disabled People: Capitalism, Welfare, and the Making of a Human Catastrophe. Zed Books, 2020 p. 267. ↩
- Kawchuk, Gregory N, et al. "Real-Time Visualization of Joint Cavitation." PLOS ONE, April 15th 2015. Accessed: May 15th 2020. ↩
- Davis, Lennard J. Enforcing Normalcy: Disability, Deafness, and the Body. Verso, 1995, p. 3. ↩
- THE LIGHT Truthpaper. November 2020. ↩