There is a dominant story of illness that goes something like this: you experience symptoms, and so you visit a medical professional. This skilled person interprets them and comes up with a diagnosis and a treatment plan. You follow the treatment plan and recover in a straight linear progression back to full health. It’s a simple story and such a powerful one that we cling to it and insist upon it, despite the fact that it’s rarely accurate. Diagnoses can be hard to come by, treatments often fail, and the graph of recovery is a line of manic peaks and troughs. Pain and illness often outstay their welcome and become chronic, until we reach the point where it’s hard to know how we feel or what the symptoms mean. At this point speculation and desperation go hand in hand, and the awful truth must be faced that this comforting story of illness and recovery is not going to work for us. We are in the fabulation wilderness, the story as broken as the sufferer, with a body that resists reading.
Maggie Nelson’s recent book charts just such an experience with chronic mouth pain, and is itself an attempt to tackle the problem of narration. ‘Each morning it is as if my mouth has survived a war,’ she writes. When the conventional route of the orofacial pain clinic can’t help her, Nelson sets off ‘into the uninsured wilds’.
I start a file on my desktop, wherein I catalog the conditions of the pain’s onset, the doctors I’ve seen, the results of their imaging, the medications and physical therapies I’ve tried, the activities that seem to make it better and worse, and so on. I bring this document to each new appointment, hoping it might offer a useful summary of a confusing physical situation, as well as confirm my status as an organised patient, eager to participate in her treatment. […] It doesn’t take me long to realize that no one wants to read this pathemata.’
Instead, a colourful circus of alternative practitioners are altogether more fixated on offering their pet cures with alarming confidence. Anyone who has been forced down this route will recognize the kind of expert who, when Nelson expresses uncertainty about taking medications without ‘a firmer diagnosis’, snaps at her ‘Do you want to go on living with the pain or do you want to treat it and have it go away?’ Or the dentist whose glib explanation seems overly practiced, causing her to ‘marvel at my inability to know if the whole thing is a hoax, how the intensity of my desire to get out of pain vies with my intelligence, which, on a good day, I consider formidable’. Nelson spends more money than she can afford and does things she doesn’t want to do, aware that, ‘It feels reckless but the pain keeps demanding an answer.’
The medics may ignore her words, but there’s a gruesome satisfaction for the reader in Nelson’s taut and fragmentary account. Seeking root causes, she cycles back to childhood where she finds an unusual flu that left her with trouble swallowing, a history of tonsillitis, and speech therapy for taking too rapidly. She quotes the damning – if at the time good-humoured – comment of a family friend: ‘Does her mouth come with an off switch?’ A visit to the orthodontist brings the diagnosis of a ‘tongue thrust’ that must be quelled by means of a metal spike glued to the back of her front teeth. It’s a potent reminder that mainstream medicine can be utterly barbaric. But it also opens up a deep chasm of shadowy significance, in which our pains and ailments seem to arise out of the confluence of old unresolved trauma and the random variations in our individual bodies. The mind and the body are so tightly intertwined that even if the illness or pain is purely biological, our response to it and our experience of recovery is inevitably bound up with complicated hopes and fears. And on top of all that, Nelson is well aware of the ‘literal and symbolic role of the mouth in the life of a writer.’ So much of who she is and what she does converges on this site of pain and trouble that readings proliferate in the absence of medical boundaries.
If what I’ve written about this slim volume so far gives the impression of a straightforward memoir, however, that’s misleading. Maggie Nelson mixes her timelines and her situations in a choppy text that bounces around between the experience of pain, her search for treatment and the Covid pandemic which ends her quest in a way that brings a kind of almost-relief. Inevitably, the pandemic has its own pains, however, in the form of a partner made alien and unsupportive by distance, and the difficulty of getting hold of vaccines for her son. By the time she’s driven him to several pharmacies in a state of enraged agitation, her son is begging for her to stop and take them home.
I tell him that even though it looks like I’m a hot mess driving all over town begging for one little orange-topped vial of Pfizer, I’m really more like the mom in the animated movie we just watched who says, I have made the metal ones pay for their crimes while wiping robot blood from her face.’
The pandemic writ large a feeling state that Nelson has been living in isolation: a fear of our bodies and all that can go wrong with them, all the unbearable suffering they can put us through without even the vaguest hope of reprieve. As she jumps about in her narrative, Nelson abandons plot in favour of a kind of thematic deployment of emotion. It’s sheer craziness that links one fragment to the next and keeps us propelled onwards, a highly particular kind of craziness that soars away from reality while turning the body into a boiling crucible of rage, despair and fear. It’s the craziness that the prospect of physical extremis causes, and which can grow to become a self-perpetuating terrorist of the mind.
There’s another element to this text but it’s one I can’t quite make my mind up about. The pain – and I presume the trials of the pandemic – that Nelson is experiencing causes her to have terrible dreams and accounts of these crop up regularly across the 70 pages. Nelson’s trick here is never to signal that they are coming, and so it’s only halfway through a fragment, when you come across a logical impossibility or something so horrific or humiliating that it can’t be true, that you realize it’s a dream. You have to hand it to Nelson – I can’t think of another writer who could find such an innovative take on ‘I woke up and discovered it was all a dream’, only it’s the reader who does the waking up here from the dream of story she’s spinning. But does it really work? Does it really add to what we’re being told? I’m not entirely sure, though it does give Nelson an opportunity to scatter the text with her trademark line in graphic intensity.
Still, it’s only a niggle in what is an innovative and original contribution to the literature of illness. If we could accept a wholly different kind of story for the travails of the body, I can’t help but wonder whether we might find much relief in the process.