I am sitting with my mother, staring at the eye chart on the wall opposite the foot of her hospital bed. The bed is very white, both sheets and blanket. My mother is sitting up, and she too is a pale study  — from the washed out hospital gown to the drawn skin of her face. She is tapping the tip of the ballpoint pen on the page of the notepad on her lap: tap–hover–tap — the same gesture she makes when she is using the iPad to compose her end of a conversation. Then, it’s tap–hover–tap because she treats the on-screen keyboard like a typewriter, pecking out letters with her fingernails even as we’re saying ‘Mum, it doesn’t work like that. It has to feel your skin’. She prefers the pen and paper, and in any case the iPad is back in her room in Sprott House, the room to which we will soon be returning to start her dying. In the meantime, we’re waiting for them to rustle up ambulance transport. I have been left to keep her company while my sister Elizabeth arranges things at the Home, things that need arranging with some delicacy. I can’t imagine how difficult that job is in comparison to what I’m doing, sitting there. Difficult certainly with the airlock of mind in catastrophic decompression.

She’s tapping the pen on the page,  and we’re both staring at the eye chart. It’s the best thing in the room, that cascade of letters. Except for the lack of vowels. The lack of vowels is a problem, and that’s why all the tap – tapping is happening. ‘Loped,’ I say, and she nods. She’s already got that one, it’s scrawled on the page before her. She makes her annngh noise and the parts of her face still able to involve themselves in smiling do so: her eyebrows go up, and she drops her chin. That, and the thumbs-up do the work her smile once did. The thumbs up is her gold standard gesture that says a whole range of things from ‘thank you’, to ‘I’m fine, thanks’, to ‘job well done!’. But there’s no thumbs-upping now as one hand needs the pad and the other needs the pen.

She’s found a better word than loped. When I sit forward in my chair and look to see what she’s written, it’s peopled. In the time it takes the patient transport to arrive we get flopped, and all the variations on poled. But the lack of a capital A really is a bugger— a fact on which we agree by pantomime, both of us still staring at the wall opposite the foot of the bed.

I tell this story at the funeral, ten days later. It’s an unprepared eulogy, just as my eulogy for my father eleven years before was unprepared. I stood up and talked and then I sat down again. My sisters had prepared speeches: moving acts of temporary resurrection. Me, I’d been concentrating on the audiovisual presentation: the music, the dissolves, the order of the images. I wasn’t doing the verbal thing. I was still staring at the eye chart at the foot of the hospital bed. I was still gulping in the vacuum outside the mother-ship.

I often think about that interlude in the hospital room, me and mum exercising our scrabble brains on the eye chart. How there were lots of Ds, but no M, or N. Thus, no MND. There was a superfluity of Fs. If pfff was a word we’d have had that down first. But sibilants were out. They’d long since been taken from my mother by the Bulbar Palsy, taken along with the set of her face and its familiar range of expressions; along with speech, laughter, swallowing and—as one of her notebooks observes, the ability to sniff. With all that went the long stories, even if she kept up an engaged—if truncated—commentary on the everyday.

After mum was first diagnosed with MND she’d still beetle about Picton, and later Karori, with a collection of notepads in the cream cloth bag she liked to carry. She’d flip open pages and write what she needed doctors, hairdressers, speech therapists, and a passel of supermarket checkout persons to see. And it was on the pages of those notepads that she carried on her side of conversations with her chatty daughters. Most of these notepads had an all-purpose announcement on the title page: I cannot speak but I can understand you. On the notebook I took from her room the day she died it says simply: lost my voice.

Five years on from her dying, I’m working on an academic article I tend to refer to as ‘that bloody MND paper’. I’ve been working on it for four of those five years and am having a hard time wrestling it down, it being an illness narrative about illness narratives. It’s all rage and white space, and the ending eludes me. Motor Neurone Disease isn’t a great generator of illness narratives by those who are its sufferers. It kills too quickly, and with such scrupulous attention to the symptomatic destruction of so many of the elements of our social being: speech, voice, expression, the ability to eat, move about. (In which order these losses occur depends on which variety of MND). But why are there so relatively few illness narratives written by the nearest and dearest of the dying person? Perhaps because the loss of voice goes two ways, perhaps because we sitters-by-the-bedside are stunned into a kind of silence by that progressive work of demolition.

Scholars  debate what does and doesn’t count as illness narrative on the basis of length, the amount of the work devoted to an account of the illness, the narrative form (memoir, journal, sequence of poems), the who of the narrator (the ill person? Someone near to them?), but generally see them as  giving voice to the suffering body; a ‘return’ of ‘the experiencing, suffering human being from the periphery to the centre of medicine’ (Anne Hunsaker Hawkins, 1999, 13); what Arthur Frank (1995, 16) calls a ‘refusal of narrative surrender’ to medicine. For scholars of illness narrative, the trope of voice is a big thing. And I must admit that gets my goat. So too does the fact that so many illness narratives enact a restitution. The ill person is returned to themselves beyond the chaos of illness, or they’ve made themselves over for the duration of a tenuous survival. (Good for them, I say. I’m certainly not meaning to carp at persons. It’s the genre and its criticism that gets me down.) The illness narrative in general deals poorly with failure, with bad ends: deals badly with ends, full stop. For every Harold Brodsky, blazing down into death, there are a thousand triumphant returns from the purgatory of illness. Which is understandable, given the problem of time. How many of the terminally ill use the last of their time to write about the last of their time? Other than the writers, that is.

In his last book of essays Tony Judt mentally worked out each essay—down to the exact phrasing—over nights spent locked-in a body parcelled neatly for sleep. Judt had MND, although not of the Bulbar Palsy variety. He could see the final lockdown coming on those long nights— not death, but the loss of the means to communicate. The failing of the vocal muscles. The unresponsive hands. The point beyond which every line cast out would find nothing but empty air. In his essay ‘Words’ he writes that ‘talking’ always seemed ‘the point of adult existence.’ And that he’s ‘never lost that sense’ (Judt, 2010, 147). The least sunny part of me—the part still flattened by my mother’s illness—says: never say never. But that would be wrong, and stupidly untrue. Because Judt would have had eager hangers-on to his words right till the end, even if the atrophied vocal muscles sieved them mighty thin. Judt’s nearest and dearest would have understood what he was saying long after everyone else had lost the thread. As did my sisters and I, working translators of mum’s increasingly muddy speech, eager readers and interpreters of the gestures that had become her new shorthand: thumbs-up and little finger-wave.

I often think about us staring at that eye chart, finding words, on the last day before her dying. And now that I’ve been working on that bloody MND paper, I think about Alphonse Daudet at his Alpine Spa, scrutinising the progress of his fellow sufferers’ symptoms to see what he himself had in store: pain and more pain, loss of bodily control, confusion of the senses. But what the acute Daudet also saw was how stubbornly our social bodies make-do. Like the Russian ataxic who’d lost the use of his hands and had to rely upon his servant to roll his cigarettes. When the two fell into an argument—about Daudet knows not what—the servant  made the whole vibrant round of ‘furious gestures’ (Daudet/Barnes, 2002, 67) for the both of them.