A dementia memoir seems like a contradiction in terms, but that's what makes Wendy Mitchell's Somebody I Used to Know such a fascinating and groundbreaking book.
Mitchell is diagnosed with early onset dementia when she’s 58. Two years earlier, she begins to experience symptoms: a lingering sense of something being not quite right, but she can’t quite put her finger on it. “How are you meant to describe these things?” she asks. “My head feels fuzzy, life is a little less sharp. What use would that generic description be? It would be better not to waste my GP’s time, and yet I know there’s something, an inkling that I am functioning around average.”
She ends up in A & E one day after a bad and seemingly inexplicable fall while out running – no unforeseen dip in the path, no rogue paving stone to trip her up – but everyone is convinced it's just an accident. She's working too hard, her GP tells her, she's just getting older, she needs to take it easy. This isn't easy advice for Mitchell to hear. She's proud of how active and independent she's always been, how much energy she's always had, how busy she's kept, working full time for the NHS, bringing up her two daughters by herself, looking after her home and her garden.
Everything that everyone with dementia says is as important as the next. I’m simply lucky to have met @whartonswords and through her expertise and friendship, been given the opportunity to write about my life with and without dementia in tow. pic.twitter.com/FfPQO3D8xN
— DrDr (😊)Wendy Mitchell (@WendyPMitchell) January 15, 2018
Months go by though and “the snowdrift” that’s settled in her mind remains in place. Then she takes another tumble – “something is lost, some message between my brain and my legs fails to get through fast enough” – then another, and another in quick succession. Her blood tests come back clear, but then suddenly one of her arms stops working and she’s slurring her speech: a small stroke. She’s signed off work while she recovers. A consultation with a neurologist follows, who in turn refers Mitchell to a clinical psychologist for memory tests. These complete, she has to wait six to 12 months to take them again: actual demonstration of deteriorating cognition is the only way to definitively diagnose dementia. It’s a gruelling waiting game.
These early chapters read like something out of a horror story. We know what Mitchell's diagnosis will be, but that's not the point, the real terror is reading of the queasy confusion that creeps up on her. The fog that descends without warning that leaves her struggling to work out what's going on. The day she finds herself sitting in front of her computer screen at work completely unable to work out what she should be doing or how to do it – "something isn't clicking, I might as well be staring at a foreign language". The meeting she's in later that day during which the word "and" eludes her. The scary occasion she's driving home in her car only to inexplicably find herself unable to make a right turn.
Later, after her diagnosis and once she’s begun her work raising awareness about the condition – she’s an ambassador for the Alzheimer’s Society – travelling to conferences to give speeches, working with charities, the families of those affected, and the medical profession, people are so often amazed that she’s is there speaking for herself (eager to reclaim some agency of her own, she always describes herself as “living with dementia” rather than suffering from it).
"Well, dementia has to start somewhere," she tells a man who claims that his mother "really has dementia" after hearing Mitchell speak. This is the stage we aren't so familiar with, when we see fictional characters with Alzheimer's, we're encouraged to sympathise with family members who've "lost" parents or partners to the disease. Think of the storyline on the American show Grey's Anatomy, or Sarah Polley's film Away From Her, which was based on Alice Munro's short story, The Bear Came Over the Mountain.
________________
Read more:
Book review: 'Hotel Silence' is one person’s attempt to understand their existence
Book review: Finely crafted characters and curiosities define Jim Crace’s 'The Melody'
Book review: Turning for Home by Barney Norris filled with tender and plangent observation
________________
Still Alice – Richard Glatzer and Wash Westmoreland's film, based on Lisa Genova's novel of the same name – is probably the first, and certainly the most well-known portrait of the disease, not least because Julianne Moore won an Oscar for her performance in the title role, but Mitchell's book – written, understandably, in collaboration with Anna Wharton – goes one step further. Her urgent present tense articulation of her day-to-day struggles, set against fragmented memories of the woman she used to be, is so close to the bone that
it's chilling.
At the same time, however, it's also an amazing testament to Mitchell's tenacity, an account of how she's developed coping mechanisms to continue living as independent a life for as long as possible. "I survive now by adapting," she explains, "by focusing on what I can do." For anyone affected by the disease, Somebody I Used to Know offers solidarity and hope: "There are ways of living with dementia, that far from a full stop, the beginning of the end, it can just be a comma."