A precipice [working title]
[08/08, 17:34] Bridget O’Gorman:
I’ve been finding it difficult to start.
Deep in the morning, the newborn stage of morning, I am awake. From under sporadic sleeps I have grasped that we are accompanied today by an ache which yawns from hip to hip across the sacrum. Yawning is all very well; but this yawn never ends. Everything is frozen in expansion. Over expansion? It’s different from over exertion. And I keep thinking: why can’t I get started?
[11/08, 23:13] Hannah Leighton-Boyce:
I start on my back, waking, not entirely remembering from what position. I move gently, making small adjustments to my will, tentatively bringing some awareness to my body, separate to the night. My mind is drawn to my right hip, and I enjoy these moments of not yet feeling. For the last few months everything has oriented around this hip joint. I begin to shift my weight to allow me to gently rotate to my left. Taking care to not bend, I Iie with my body rigid before shimmying towards the edge. The mattress is soft and bends with generosity, allowing me to lower my legs over the side. I gently encourage my hip to ease and bending my knees I bring my feet flat to the carpet and toward the bed. Now I am too far forward. In my mind my position resembles something almost gymnastic, but- before I slip I shimmy back so more of my weight is supported again, and I sigh with relief. Next I twist to the left, easing myself up so as to avoid actually rotating my right hip, bending only to its will. I try to rise, pausing with a forcefield of attention so as to not make its presence louder.
[12/08, 12:50] Bridget O’Gorman:
How are things today?
The body scan happens almost automatically, an unfurling, an unconscious reflex. I conduct this conversation daily, checking where the pain has lodged itself over the past few hours. Booting up, I shift my weight, buffering to the edge of the bed. On my side, it’s awkward – I resemble a plank as I rise vertically. Vertebrae shifts, snapping and locking into it’s new configuration. My bad foot floats out before me, bobbing in space – in a kind of absurd anticipation for the day ahead. My daughter wants to play a game, she imagines the bedroom floor is the sea, and we are to swim out of the room. She’s laying on her tummy, shimmying her new limbs like a doll across the carpet. I conjure some lame gesture, indicating a breaststroke and she laughs, delighted, satisfied. As we make our way to the bathroom my pain follows behind us, an anchor the shape and weight of lead.
[12/08, 15:35] Hannah Leighton-Boyce:
I’m reminded of how I used to imagine my bones like those that have been dug up dusty and pale like museum objects until the day I caught a glimpse of them reflecting back at me in the mirror of the operating theatre light, and the pink fleshy aliveness of it. The action and consequence of the tendons and bones in my hands were described to me as being ‘like rope rubbing over rough rocks’. In contrast to the description, I try to tenderly remember the distant tugging and scraping as the surgeon worked to remove the problematic section of bone, vibrating down my sleeping arm to my awake body. The first to classical music, the second to house music and the promise of an even neater line.
[13/08, 21:16] Bridget O’Gorman:
This account makes me think of authorship, who writes the story of our bodies? Who has written on us? Someone who likes house or classical music?
What might be found in your own description of how your bones felt, next to the vital, viscera version exposed to you in theatre that day? It’s easy to forget sometimes that we are fleshly, resilient. Our insides seem unknowable, even as they command our time, feed our imaginings. Perhaps this is because we have known them to be unpredictable? We are required to fill in the gaps in order to retain a sense of self?
[13/08, 21:29] Bridget O’Gorman:
Once, when I was in recovery after an emergency spinal surgery, the team came to my bedside to report how it had gone. Making a kind of shovel with his hand, the lead surgeon gestured in a digging motion through the air between us. ‘I had to scrape out a very large amount of stuff, an awful lot of stuff really’’ he said. ‘The prognosis is not what we’d hoped for’ he said. I thanked him. I refrained from telling him that I would never scoop ice cream again without thinking about how he articulated this event – and its consequences.
[13/08, 21:39] Bridget O’Gorman: Earlier, in this heatwave, I was scooping ice-cream for my daughter after dinner. I’d been on my feet for too long, the gnawing in my spine intensifying down my legs. I asked my vertebrae to give me just a couple of more minutes while I finished my task, blocking out the surgeon’s gloved hand as I dumped the last bit of ‘stuff’ into a metal bowl. My partner walked in, to find me in mid conversation with my body, holding the sideboard, folding from my hips to alleviate the overwhelming pressure and sensation. ‘Are you ok?’ He asked. I’m finding it difficult to respond, because negotiating with my pain can feel like communing with spirits: it takes focus, a certain level of attentiveness. ‘I’m fine. I’m not fine’ I respond too quickly.
[13/08, 21:44] Bridget O’Gorman: I like to imagine your bones as relics and also glistening and jewel-like under a theatre light. I like to think that we can choose our own narratives, oscillating between internal and external experience. It feels important somehow, a little like your body being awake to the sleeping parts of it. It’s all information, a bodily knowing.
[18/08, 00:35] Hannah Leighton-Boyce:
I’m coming back to my body now. When I first became ill as a teenager, I was overwhelmed and to have some autonomy over the unfolding situation, required a place of awareness and compassion that I found it very hard to locate within myself. I never even considered writing what I felt was taking control and rewriting me, it was all I could do to stay with it. Speaking about it came with added layers of complication that I wanted to be able to run from. In reality I descended the stairs on my bottom, crawled to the bath and regularly got stuck there like a beached turtle, upside down, in pain and without the strength to lift myself out. I tried to find ways to move and adjust my body that would cause the least amount of effort or pain so in that way, I knew my body well. But it was all physical, I don’t recall ever being offered emotional support, the communication around what was going wrong was about looking at its physical manifestation and finding the right medication to suppress it.
I could feel the pain held in your ‘thank you’, and the physicality of the ‘I’m fine, I’m not fine’, because what choice do you have? The way in which the surgeon chose to describe your procedure and what they discovered that day, reminded me of when a close family friend once said to me ‘you’d have been shot if you were an animal’. I don’t have the same visual or gestural reminder but those words etched themselves into a part of me that day. Both your surgeon and the family friend were trying to make light of our situations, perhaps due to their own discomfort or feeling ill equipped to communicate what they really needed or wanted to say. I often find I too lack words to adequately and honestly describe my own experience, some days it takes a lot of effort to feel, to connect to my body but the effort does- feel necessary, and reparative.
[18/08, 11:28] Bridget O’Gorman:
I remember one of the first things you told me when we started this conversation, that there are times when you find comfort in feeling your pain, that it’s like coming back to yourself again, the version of you unshrouded by chemicals. I strongly identify with this: the opportunity to navigate your pain in the most lucid moments feels not only necessary (as you’ve said, what choice do we have?) but it allows for a truer sense of self to emerge. Choosing to move or not move in a certain way in order to dial down the pain, these are our parameters which fluctuate from day to day. When we depend on pharmacy it can be difficult to grasp what’s actually real. It can feel disorientating. Architect Jos Boys calls bodies like ours ‘misfits’. We do not fit the environments we inhabit easily. Drugs ‘dial down’ the volume of pain, but also numb how problematic that can be too.
I visualise you descending the stairs on your bottom, and the lack of self-awareness of your family friend – to have said such a thing to you. Is there something about keeping this statement with you as a form of armour? Lest we forget that we do not ‘fit’ – that we are not meeting the standard hoped for: their words skirt dangerously around the concept of eugenics. Could it be useful to catalogue this, in a world which is designed in opposition, hostility even, to the body in pain? Turning this over, staying with it, we might begin to also recognise a deeper knowledge within. I feel a primal sort of anger rise up inside of me, to think of you in this position – not only dealing with the physical barriers around you, but also navigating the emotional work of others. As a ‘misfit’ I have begun to identify with these kinds of sensations, to discern the humanimal in me, which gains more pertinence through my disability (the amount of time I spend on all fours, low to the ground) along with the subsequent and relentless vulnerability that presents itself when I am around other humans.
[18/08, 11:38] Bridget O’Gorman: For some time now I’ve been trying to stay in my body, to feel my pain (to varying degrees of success). When I fall down in public, or when I have no other choice but to be around others whilst in pain, I’ve learned to cope by dissociation. I leave my body, and exist in an ‘in between’ space. The issues with this are manifold: I can push myself to even greater incapacitation by ignoring my body’s warning signals, ‘performing’ the role of the able-bodied artist/person. I also leave myself open to half baked advice, platitudes, reactionary aphorisms. Often, people seem as ill equipped as they are eager to fill the vacuum when faced with pain in another person.
[21/08, 11:06] Hannah Leighton-Boyce:
I do wonder why those words have stayed with me, I think it is in part because I never relayed this to anyone else at the time, perhaps because deep down I felt it would be dismissed as being spoken jest and my knowledge that that would hurt even more. I couldn’t reconcile the vicissitudes I felt between the person I had thought of as caring and their seemingly casual remark that I felt so sharply, erasing and final. I knew it revealed far more about them and a perspective that didn’t have the room or time to be around pain, another’s or their own.
Perhaps their words become armour after the tears. They may have given me some strength to persist and fight, sometimes necessary, and sometimes like you say, this was often to the detriment of being me, knowing me, showing up as me, by dissociating and assimilating as someone healthy.
I feel so deeply your experiences of trying to stay with your body, it’s a huge undertaking that requires such strength, tenderness, and patience. I learnt like you to separate myself from my pain or to use other pain to mask it. I can float off and exist somewhere else, not like you say to anywhere particular but separate, with just enough distance to be in both places simultaneously where pain can then exist on its own. To be around someone else’s pain or vulnerability one needs to have acknowledged that within themselves. There has to be an environment that physically, emotionally, temporarily nurtures this, leaves space for pain to dwell, and be shared.
I’m reminded of the image of your daughter swimming across the carpet and the space of imagination and improvisation that exists in parallel with the physical world as a child. Floating in water, swimming, is also where I am able to experience degrees of freedom in my movement. Floating creates that suspended space where I can be fully relaxed and (mis)fit with my body.
[25/08, 12:39] Bridget O’Gorman:
Like most kids, my toddler likes to reinvent the world as an obstacle course: the floor is lava, bodies of water divide us across pavements, our front step is a cliff face. I guess she’s learning her world, learning herself, in relation to it. I do this too with much less enthusiasm, my body aches for the parts of it that have been removed: on a bad day the slightest incline feels close to mountainous.
[25/08, 12:54] Bridget O’Gorman: On the anniversary of one of my surgeries recently I attempted a level of self care and signed up for a zero gravity float. It was the strangest sensation, I thought it should have felt more cathartic; yet with all sensory inputs reduced, floating in Epsom salts felt like a battle. I realised then that I use distraction as a vehicle for existing outside of myself, to straddle multiple spaces, to detract from pain. Confinement in a plastic pod reminded me of lying inside the MRI machine I must use more regularly than I would like – submitting to a stranger reading my insides – and all of the associated feelings of emergency or uncertainty those occasions signal. And despite the support of the saline under my hips, my spine was screaming that day, and in the darkness and the silence I struggled to ignore the sound of it: I had nothing else to drown it out.
[25/08, 13:11] Bridget O’Gorman: I think that what you say about leaving space for pain ‘to dwell’ is key. Like any trauma, it doesn’t go away, perhaps making room for it to exist can allow us to not feel consumed by it? Covering up pain in the hope that we can pass, so that we are not pathologised, or categorised as ‘other’ has only ever brought me towards further injury. I am both grateful for and still terrible at the notion of adopting the slowness of a ‘misfit’ in an effort to help this situation. In a way it means opening the vulnerability out to others: work colleagues, family members etc, who are not always equipped or provided with the structures they need to accept it. This kind of sharing can allow for the possibility of self realisation, but it also involves exposing your ‘misfit’ reality.
[01/09, 19:47] Hannah Leighton-Boyce:
I’m cautious today, I’ve been thinking about placement, (op)position, (dis)location, and (re)location of my attention, my bones, my joints. I’m feeling the after effects of having done more physical work over the last few days so I am taking things slowly, but I think in a way similar to how you describe, it’s often in a necessary state of detachment rather than attentive slowness.
I find it really hard to fully adopt a pace which is attuned to my body’s needs rather than the demands that situations require. I’m consciously making adjustments at the moment to remind myself to centre my body’s needs, and the when, how, and why I make work. It is a necessary unlearning, well over half my lifetime. As part of this, I think I’m going through a grieving process, not so much the having or living with a condition, I can’t really imagine life without it, it’s more the extent to which I have had to negate my body, my experience, in trying to cope.
I often experience an electric shock sensation or referred pain when I read about or see another person’s pain. Your experience in the floatation tank sounds frightening. To feel trapped in a space of outside sensory deprivation which by its nature amplifies your inner senses sounds really hard. I’ve not experienced a flotation tank myself but depending on the day, I imagine I would feel relief from feeling suspended or held like this, it’s the becoming upright that is difficult, particularly at the moment.
I was thinking about the need to cope and how it creates a position of opposition within oneself, through its roots in its late 14c., definition, “to quarrel” [with yourself] or it development in the 18c., to [somehow be able to] “handle (successfully), or [to just] deal with” it. I think perhaps, the distraction you describe is a little like this too, and like medication, both create noise that drowns out or numb not only pain but sensation?
[01/09, 20:07] Bridget O’Gorman: That’s so interesting: the etymology of the word to cope being found in to quarrel. I’ve only recently begun my experience of this kind of conversation (compared with your knowledge of growing up through your most formative years and into adulthood in this exchange). Often when I try to describe the circumstance, I find myself comparing life with chronic pain (for me, at least) akin to residing with a continuously cantankerous spouse.
[01/09, 20:08] Bridget O’Gorman: In that my conversations with myself often resemble a bickering with one who knows me well and vice versa
[01/09, 20:23] Bridget O’Gorman: But I also can’t stop thinking of your earlier description of your body being rewritten by your condition, without consent, because we are interminably altered by our pain. I think that is why the writing is useful, whilst our experiences are subjective, we might find space here to map them, to make sense of them, from our own actualities or embodied perspectives. To study the palimpsest of who or what it is we are becoming. I too feel sensations in my body when I hear, see or read about another’s pain. Perhaps your response speaks more to what is unearthed when we pay attention to the disabled experience around empathy? My experience in the float wasn’t horrible, it wasn’t easy either: in this hollow form I was obliged to listen to what my body was saying (and not what everyone else was saying). In a way, this process also obliges us to listen.
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