Mothers and daughters have intimate and sometimes fraught relationships. But how are these affected by illness or diagnosis of terminal disease? Helen Stevenson has written a highly individual and personal account of her experience as mother of Clara, who has Cystic Fibrosis. It is an idiosyncratic story: even the geography is unusual, featuring a move to rural southern France, memories of her own up-bringing near Doncaster, and a move back to Somerset. And it often takes an unusual pensive tone, with an allusive literary voice reflecting the writer’s background as a translator, married to an academic specialising in Petrarch. But there is much here for any mother (or relative) of a child with serious or terminal illness.

Helen often remarks on the ever-vigilant care that she felt as a mother, as Clara negotiated the narrow path above the abyss of illness. Indeed ‘mise-en-abime‘ was at one point the title for the book. This vigilance emerges in many little episodes and metaphors. ‘I feel like a seamstress who pins and tacks every seam, every hemline, and leaves the tacking in case she has to unpick it and do it again, over and over.’ The constant anxiety comes through when Clara has to be careful about environments which might harbour harmful microbes – stagnant pools, the local church with its bat droppings, a friend’s half purified swimming pool. There is the awful occasion when Clara gets on a Metro and is separated from her mother without any way of getting back in touch. That anxiety is not the same as that felt by the mother of a healthy child. Which is why the mother of a child with cancer is defensive until Helen tells her about Clara’s diagnosis, at which point ‘her face relaxed. So I knew. We were in the same camp. I wasn’t just saying I understood.’ Helen even surmises that she feels differently from normal mothers about Verity, her younger CF-free daughter – ‘I wonder whether people who have children who don’t have an illness feel about their children as I feel about Verity, a love which is, so far, without difficulty, tension or anxiety.’

This is a very rich memoir, emerging from a love of language and literature, from a curious engagement with the cultures of different countries, generations and religions, and from a deep love of music. It sings to its own rhythm, and may not be to all tastes. The memoir is a multi-cultured construction, its resonances only deepened by recurring themes. One such is the Pergolesi Stabat Mater, a deeply passionate work featuring two female voices lamenting the death of Christ at the foot of the Cross, and for which Helen played the piano accompaniment during the stay in France.

One of the advantages of a story that switches between France and England is the comparisons between each country’s health and education systems. Love Like Salt points up some of the relative merits of French and British health care for people with CF: Helen has Clara’s Paris consultant’s mobile phone number, and when Clara has an emergency appendicectomy, he is prevailed upon to give the surgeon advice from his beach holiday! (That would never happen in the UK.) In Britain the NHS gives responsibility for daily home physio to the parents and the person with CF, whereas in France there is provision for regular treatment with physiotherapists. The account includes a description of the never-ending precautions to keep Clara’s lungs free of secretions, and of infection: physiotherapy, percussion, autogenic drainage, and so on. But although this is a daily routine taking hours, and necessitates regular visits to the local physiotherapist, it forms a tiny proportion of the story. At one point Clara’s parents go to a specialist hospital in Paris for a seminar on the best physiotherapy techniques, and note that the respiratory physiotherapist taking the seminar has a quick cigarette before the afternoon session, reeking of the nicotine that the participating parents have all given up for their children’s sake.

French early years schooling seems to lack the English primary system’s need to test everything that moves. But Stevenson observes that at primary school the French do not value literature and the creative arts – although Clara has many chances to develop these at home. What finally forces a move for the family is the French need for uniformity, as Stevenson sees it. The French schoolteachers and parents apparently regard the children’s bullying of Clara in her final year of primary education as normal and OK. Stevenson laments the inability of the French teachers to see Clara as an individual with her own needs, in words that could also apply to many professionals in the health sector (and which might serve as a manifesto for the value of ‘illness narratives’). ‘For coping with Clara’s special medical needs they had a protocol. It was caring by numbers. But I never felt that any one of her five teachers ever understood or even tried to imagine what having the illness might mean, how it might feel on the inside to have it, physically, emotionally, socially.’

This beautiful memoir moved me to both tears and laughter. I would recommend it for any mother or family member of a child with a long-term medical condition.

Stevenson H (2016) Love Like Salt: a memoir, London, Virago Press

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