Marion Coutts is a visual artist, working in sculpture, photography, film and video. She met and married Tom Lubbock, an art historian and critic and collagist; they were together for 14 years and had one child. In September 2008, when their son was 18 months old, Lubbock was diagnosed with a grade four brain tumour, sited in the area for speech and language. For two years after the diagnosis, by dint of unimaginable effort, he kept up his output of journalism: two pieces of writing a week for the Independent. His intelligence and ability to conceptualise weren't lost, even while language progressively eluded him; the possibility strains our commonplace ideas of how thought and language are wrapped up together. Even after October 2010, when Lubbock "could not write or read in any regular sense", Coutts says he "could comprehend text on a mysterious level, often after the fact". Their little boy, Ev, was acquiring language skills all the time his father was losing them: the juxtaposition made the familiar magic of child development especially poignant and astonishing. Tom Lubbock died in January 2011, days after his 53rd birthday.
Out of that story – I was going to say sad story, but sad won't do, it isn't enough and it isn't all of it – comes a miraculous pair of books. Lubbock wrote a memoir, Until Further Notice, I Am Alive, published in 2012: the first section of this was adapted from a diary he kept until he couldn't any longer, and the last section, as Coutts says in her introduction to it, was "understood, spoken aloud, and pulled together through question and answer, verbal challenges, inspired guesswork, and frustration". And now Coutts has published The Iceberg, her own record of the time between her husband's diagnosis and his death.
I don't know how she wrote it, she doesn't explain. The precision in her recall of particular moments and intimations surely couldn't have been reconstructed entirely after the event; presumably she kept some kind of notebook record and built her memories around this when she had time, after he died. Time, in both memoirs, turns out to be of the essence. In Until Further Notice, Lubbock is fascinated by how our experience of time – the present moment, the future, the interval between these – is altered by the onset of terminal illness: "it seems that any margin of indefinite future is enough to count as a prospect, as something."
Coutts's book is structured in sections, marking the major stages of the illness; the sections are then broken up into numbered parts. Section four, his death and funeral, hardly fills a page; we know nothing about afterwards except that she has filled it with writing this book. The book's form, fragmented and yet sequential and cumulative, is expressive in itself. The externally imposed shape of the illness, its facts and events – its sections – lead through the various crises to the inevitable ending. Inside that shape, flowing through and around it, there's the subjective experience: switchback, extraordinary, terrible ("I have never cried like this. The fatigue of it is seismic").
The book is a stunning record of the sheer labour that illness brings; and illness combined with motherhood, too. There is no time. There's never enough sleep. Sometimes Coutts simply lists the impossible contents of one day: chores, childminding, assisting, nursing, organising – then at the end of it helping her husband find his words (he worked at night). Friends are wonderful, but naturally they defer to her. She has to learn to drive and we hardly notice it, the achievement is buried in all the rest of the work. She isn't selfless – how could she be, this creative artist and complex individual, accustomed to her autonomy, to ambition and plans for a different future? She and Tom used to joke that she was a useless nurse. She shouts at Ev, she loses it, she cries, she snaps a toothbrush in half in sheer rage; someone from an agency offers her aromatherapy at a bad moment and she curses them. Once she was ambitious, and full of desire for her work; the "visual world of objects and things" had "an edge for her" over the rest. Now that's over. She pays a visit to her abandoned studio; when she remembers how she used to feel about her work, it seems "unfathomably remote and dangerous". One morning she just breaks down in the middle of the fight to get Ev to nursery, and sits with him on the front doorstep out in the street – a strange interval of peace.
And there are intervals of peace. There's more than that, much more: sometimes their life is blissful. After a phone call to Tom in hospital – he can only say, Yes! Yes! – she goes "to bed wrapped in pleasure". Somehow, miraculously, they find that there is happiness on the far side of diagnosis. They are still themselves, they can love what they used to love. One of the great salving insights of this book and Lubbock's memoir is that the illness and dying are part of the story of their lives, which it's possible to imagine and enact in their own language – and that's true even as Tom's language is taken away. "I had thought that death was a separate, foreign state," Coutts writes. "It is, but it follows the contours of our own terrain." In Trinity Hospice, where they spend the last weeks of Tom's life, their room is filled with family and friends, Ev's toys, things to eat and a lamp from home. The walls are covered in photographs of life and art. Coutts appliques "Tom, Me & Ev" on a red plaid blanket.
But there's no romancing. Tom can't swallow food any longer. Ev cries to see his dad, then when he's at the hospice cries to go home; his mother is "scissored". The account of the hour of death itself is intimate and unflinching, magnificent. Coutts has found her way, in writing, back to her work again, building a bridge out of life into art. She chooses her words with such beautiful scrupulousness, never twisting or turning the knife of her story to exact our pity or admiration; her thought is like sensation, her descriptions of feeling are often like notes for a visual work. She makes oblique reference all the time to her other art: at one point she imagines designing a costume to wear, to express how "warped, unrecognisable" she feels. Coping is like "a cave underground deep in rock, hung across its roof with accretions of dripping salts. I am cavernous and hard as mineral. The cave holds a pool of dark water that has not seen light. The water is very cold; it is undrinkable and its size is unmapped." On a different day, life is "Bergman: European, shot flat without affect but deeply charged". Her book is a homage to an exceptional man; it's also the work of an exceptional woman artist, writing from the inside about the things women have always done: nursing, nurturing, loving.
• To order The Iceberg for £11.99 with free UK p&p call Guardian book service on 0330 333 6846 or go to guardianbookshop.co.uk.
