Things begin, as so often, with a fall. A hard fall, while out running along the River Ouse in York, hard enough that Wendy Mitchell has to go to A&E; hard enough that when she goes back later to find the flagstone that caused it, the blood from where her face hit the pavement serves as a bright marker. Yet there is no obvious hazard.
Then, another day, another fall. And another. The year before, she had completed the three peaks challenge; now she finds she must give up running. Then, after a couple of unsafe incidents on the road, driving. Parts of herself crumbling, or, one day, when she looks up from her desk at work and finds she has no idea what she’s doing there, dropping so fast it’s like “ripping a plaster away”. When she finally gets an official diagnosis it’s as though she already knows: early-onset Alzheimer’s. She is 58.
This revelatory book, written with the journalist Anna Wharton, is a recording of Mitchell’s disappearance, as it happens. She is clear that the onset of the disease signals, for her, an existential rupture. There was a self before, and now that self has ceased to exist. “You”, her current self calls her previous self. “I remember the frantic pace, the speed with which you tackled things” – fell-walking, DIY, especially after the father of her two daughters left.
She used to earn a wage as a cleaner, then, when the girls were older, as an NHS receptionist, working to become an all-competent leader of a team rostering nursing shifts in a busy hospital. That previous self seems, understandably from this specific vantage point, almost superhuman. A different story begins to leak out, however: loneliness, industriously hidden sadness, a stroke from stress and overwork. But “memory was your thing”, also independence, resourcefulness, pluck. A fighting spirit.
And these last, in fact, remain. Mitchell fights against everything about her disease, every step of the way, the very recording of its progress being one method (she keeps a blog, which provided the basis for the interviews that Wharton then used to stitch this account together). Writing and remembering to use her brain holds Alzheimer’s at bay for another hour, another week, another day. As, she believes, does her singleness: Mitchell is good on the double-edged sword of having dementia when one has a partner – about the guilt and the dependence, which, she thinks, hastens the progress of the disease.
She rails against the system, by which she feels abandoned, first because “there is no follow-up after diagnosis. There is nothing they can do”; second because, when she tells her managers what is happening, expecting them to attempt flexibility, to trust her and work with her, they offer only early retirement. This is one of the baldest and thus weakest points in an otherwise textured book; I found it hard to believe that someone who worked in the NHS for 20 years could be so dismissive of it, wondering if something had been left out, or tweaked, for polemical effect.
Much more interesting is her fierce alertness to others’ perceptions and preconceptions, understanding them because she herself once shared them: that dementia patients are very old, helpless, blank. Cancelled, in a way, as people. Like any progressive disease, dementia is a continuum, she tells once-friendly neighbours who cross the street to avoid her; it is also fitful – there are bad days, and good ones. And there is still a person in there, forgetful, yes, confused, often, but just as in need of validation and love and conversation and laughter as anyone else. She attacks the fear – which is of nightmares made real: words going missing in public meetings, being invisible. Whole familiar cities made alien. Sounds like gunshots ripping through her head. “I lost yesterday. I don’t know what happened to it.” This, a report from the other side, is one of the most valuable things about the book – a detailing of what the disease actually feels like, a demystification.
She arms herself with practical ingenuities: dementia bingo; iPads pinging to remind her to take pills, to eat. A bright pink bike, not because she especially likes pink, but because it would be harder to forget. Novels become impossible to read, so she reaches for short stories and poems. Each time she congratulates herself for staying a step ahead, but at her worst moments she wonders: “Wasn’t I going to see the world? What happened to all the time I thought I had?” And who is “I”, anyway? Pre-dementia Wendy? Today Wendy, who is different from tomorrow Wendy? For the reader, there is also the ventriloquised, ghostwritten “I”, complicating matters further.
But the “I” fights for others too, for people with dementia everywhere – travelling up and down the country to talk to conferences, to researchers. She fights for positive language, asking student nurses what words spring to mind when they hear the term “dementia”: “demented, senile, burden, sufferer, old age, living death”. What about, for instance, replacing the passive “suffering” with the active “living with”? – things might feel more possible, there might be at least an illusion of agency.
She learns, quickly, the “harsh lessons” Alzheimer’s teaches: a conscious tomorrow may not exist; live, then, as well as possible, in today. It is striking how much of self, she discovers, is located in language. Speaking becomes difficult, but she can still write as fast as ever, WhatsApping, blogging, emailing, until one day that stutters too. It comes back, but there is no mistaking the existential vertigo: “I have become used to looking up in familiar surroundings and not knowing where I am, but this was something else. I was lost inside. Screaming to get out. It was terrifying.”
Talk, then. Talk as much as possible, while it is still possible. Talk to loved ones, explain what needs to happen, about care, about resuscitation, about death. Make choices now to make theirs, already hard, a little easier later. Brave the mutual dance of fear and reassurance. But what she can least bear is losing the future she thought she and her daughters had together. And so she redoubles her efforts, writing herself notes and instructions that collect in drifts on the floor, on her cupboards, on her walls, fragments shored against the coming ruin.
Aida Edemariam’s The Wife’s Tale is published this month by 4th Estate.
• Somebody I Used to Know is published by Bloomsbury. Save £5 on our book of the month. To order a copy for £11.99 (RRP £16.99) go to bookshop.theguardian.com or call 0330 333 6846. Free UK p&p over £10, online orders only. Phone orders min p&p of £1.99.
