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“A brave and illuminating journey inside the mind, heart, and life of a person with early-onset Alzheimer’s disease.”—Lisa Genova, author of Still Alice
Wendy Mitchell had a busy job with the British National Health Service, raised her two daughters alone, and spent her weekends running and climbing mountains. Then, slowly, a mist settled deep inside the mind she once knew so well, blurring the world around her. She didn’t know it then, but dementia was starting to take hold. In 2014, at age fifty-eight, she was diagnosed with young-onset Alzheimer’s.
In this groundbreaking book, Mitchell shares the heartrending story of her cognitive decline and how she has fought to stave it off. What lay ahead of her after the diagnosis was scary and unknowable, but Mitchell was determined and resourceful, and she vowed to outwit the disease for as long as she could.
As Mitchell learned to embrace her new life, she began to see her condition as a gift, a chance to experience the world with fresh eyes and to find her own way to make a difference. Even now, her sunny outlook persists: She devotes her time to educating doctors, caregivers, and other people living with dementia, helping to reduce the stigma surrounding this insidious disease.
Still living independently, Mitchell now uses Post-it notes and technology to remind her of her routines and has created a “memory room” where she displays photos—with labels—of her daughters, friends, and special places. It is a room where she feels calm and happy, especially on days when the mist descends.
A chronicle of one woman’s struggle to make sense of her shifting world and her mortality, Somebody I Used to Know offers a powerful rumination on memory, perception, and the simple pleasure of living in the moment. Philosophical, poetic, intensely personal, and ultimately hopeful, this moving memoiris both a tribute to the woman Wendy Mitchell used to be and a brave affirmation of the woman she has become.
Praise for Somebody I Used to Know “Remarkable . . . Mitchell gives such clear-eyed insight that anyone who knows a person living with dementia should read this book.”—The Times (London)
“A landmark book . . . The best reward for [Mitchell’s] courage and candour would surely be fundamental changes in the way people with dementia are treated by society.”—Financial Times
Under the Cover
An excerpt from Somebody I Used to Know
It happened again the other day. This was nothing like before. It was much, much worse. It wasn’t a word lost from the tip of my tongue; it wasn’t an absent adjective, a vanished verb. It wasn’t getting up from the sofa and padding into the kitchen in slippers, then forgetting to bring back the cup of tea I’d just poured myself. It wasn’t running upstairs for something and then reaching the top step and not for the life of me remembering what it might be.
This was totally different. This was totally blank.
And the worse thing was, just when I needed you most, you were gone.
I am running along the path by the river with an impending sense of something I can’t put my finger on. It has lingered for a few weeks now. More honestly, a few months. How can I describe it? Perhaps that in itself is why I haven’t been to the doctor’s, why I haven’t mentioned it to anyone else, not even my daughters. How are you meant to describe these things? 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. Even though I know that what I consider to be average would be above average for most people, this just isn’t me.
It was this fuzziness that had pulled me from the sofa this afternoon, that pushed my feet into my running shoes, that placed my house keys into one hand, my iPod into another. I wasn’t sure where I’d get the energy to run, but I knew I’d find it: I’d push through that initial wall, just as I had dozens of times before, and the next time I open the front door of my riverside apartment it would be with adrenalin pumping through my veins, I’d feel invigorated. That’s what a run had always done.
I glance down at my feet doing their job, finding the pace the way they always did, the rhythm, the gentle thud as I hit the concrete, and I look up again at the path, waiting for the world to sharpen into focus just as it always had. “Five hundred meters,” the robotic voice in my headphones announces, my iPod synced up to my shoes, motivation to push me through, and yet right now, it feels more like a marker of failure. I’ve done more than this. I tackled the Three Peaks Challenge last year and I can still conjure up the feeling I had when I reached the top of the first peak, Pen-y-ghent, more than 2,000 feet above sea level; it felt like I’d conquered the world. The same adrenalin I now desperately awaited had pushed blood around my body to tackle two more peaks on the same day, the wind blowing hard in my ears at the top. Life wasn’t fuzzy around the edges then; it was pin-sharp.
It’s cold and crisp and my running leggings hug my thighs, keeping the warmth of my body trapped inside. Aside from the sound of my rubber soles hitting the path, the only other sound is the swish of oars breaking the stillness of the river as the scullers practice their skills between bridges. Down one side of the river I’ll go, crossing the Millennium Bridge, back up the other side, a route I have trodden so many times before. But then, in a second, everything changes. Without warning, I’m falling. There’s no time to even put my hands out toward the concrete as it comes crashing toward me. My face hits the ground first; white pain shoots through my nose, my cheekbones; I feel a crack. Something hot and sticky bursts from within. It’s a couple of seconds before there is complete stillness. I use it to catch my breath and when I reach up to my face my hand returns to me covered in blood. That’s when the pain hits, not just physical pain, but the sting of humiliation as I look down at my legs, a tangle in front of me, and for that split second I don’t recognize them or what they’ve done to me. Or, rather, what they’ve allowed to happen. I’ve broken my nose, I’m sure of it. I stagger to my feet, blood soaking my running top, seeping into each thread of the fabric. Helpless to stop the stain spreading further across my chest, I stumble back toward home.
My doctor’s office is just around the corner, and so I decide to walk there and see the nurse. The shock is settling into my bones now, and by the time I stand in front of her, my hands are shaking. My knees are doing the same, and I’m hoping that she hasn’t noticed.
She sends me straight to Emergency and on the walk there, I’m still trying to work out what went wrong, whether it was anything to do with that sense of something I couldn’t put my finger on when I set off. Was that it? Was that what I was waiting for? A fall while I was running? But somehow it feels bigger than that. I wait in Emergency, the blood drying brown on my running top, tissues speckled scarlet scrunched tight inside my palm, telling myself that this is a one-off, and then finally I’m called in to see the nurse who will patch me up.
“Well, there’s nothing broken,” she says. “You’re lucky. How did it happen?”
“I’m not sure,” I say. “I was out running.”
“Ah, the perils of running,” she laughs. “I know them well!”
We share the joke, rolling our eyes, but it’s there again, that sense of something more. I’m already planning to go back along the route on my way home, to find the wonky paving slab that has left me with two black eyes, yet thankfully, no broken bones. I’m grateful that I’m on annual vacation, that I don’t need to walk into the office tomorrow with black and purple patterns stretched across my face.
An hour later I’m standing in front of the place where I fell. It’s easily recognizable from the spatter of red where my face hit the pavement. I search all around, but there is no dip in the pavement, no loose slab, nothing to trip over. So what was it, then? The fog in my head makes it hard to decipher—there’s nothing, no clues—but this has never happened before. I return home and lie back into the sofa cushions, battered and bruised, back where I was before, looking out at the River Ouse as the sky darkens above it and the mystery deepens beneath. I’m tired now, more tired than before. It hurts to close my eyes, but this time I let the lethargy cover me like a blanket, and for the first time, I don’t attempt to fight it.
It’s a few days later, and I book an appointment with my General Practitioner, the tiredness dragging me there rather than anything else. My lack of energy: that’s how it started.
I sit in front of him. “I just . . . I just feel slower than usual,” I say, and he studies me for a second or two.
I’ve been entertaining silly thoughts. One that passed through quickly was a brain tumor. I study the doctor’s face to see if he’s thinking the same, but he gives away no clues. Instead, his shoulders slump away from his ears and he attempts an expression of something like empathy.
“You’re fit, you exercise, you eat well, you don’t smoke and at fifty-six, you’re relatively young,” he says. “But there comes a time when we all have to admit to ourselves that we’re just slowing down.”
He sits back in his chair then and folds his arms, waiting for it to sink in.
“You work hard, Wendy,” he sighs. “Maybe take some time off.”
I want to tell him that I have done, that right now I’m in the middle of annual leave and the idea of taking any more than that is preposterous to someone like me. I’m the person at work who knows the system for rostering nursing shifts inside out. I’m the one my colleagues nickname “the guru” because my recall is so sharp, because I can problem-solve in a second, reminding anyone who asks who works night shifts, who needs which day off. They can’t possibly manage without me. But he’s tidying papers on his desk and I sense this is the end of the appointment.
“Age.” He shrugs when he turns back and finds me staring at him.
I leave his office. I know I should be feeling relieved. My doctor isn’t worried, it seems, and normally I would distract myself with work, throwing myself back into the job I love, yet I go home to an empty flat. I don’t tell my daughters Gemma or Sarah about the fall. I tell myself the doctor is right, that it is nothing but age, but more months go by and the snowdrift that seems to have settled in my mind remains, along with the lack of energy and the same feeling I just can’t put my finger on. There are other things too; a forgetfulness. I go on other runs and I always get to the same spot, the place where I fell, and check the pavement every time, searching for signs of why, but deep down I know it was me.
And then it happens again. I’m out running, crossing a road, convinced that I can get ahead of the car that’s about to turn left across my path. I see it coming and suddenly decide to dodge it, but something is lost, some message between my brain and my legs fails to get through fast enough, and instead I stumble, falling flat onto the pavement again, this time thankfully bruising nothing more than my ego.
There are three of those falls in quick succession. The last time I land badly on my hand, and that afternoon, when I put my runnning shoes away, something tells me it’s for the last time. My brain and legs aren’t talking to each other; the communication is lost. I go back to the doctor and there a nurse pulls blood from my veins into vials and sends them off.
“Everything is clear,” my GP tells me when I go back for the results, and again he mentions my age. I sit in front of him, unsure how to explain that everything is getting slower, that on bad days my mind can’t instantly recall names and faces and places like it used to. Perhaps he is right and it is age, but I leave the office again with that impending sense of something I can’t put my finger on, a sense that the doctor is missing something and yet I can’t form enough thoughts to give him a clue as to what.
I remember the frantic pace, the speed with which you tackled things. I secretly admired that, even though I never would have said it. You drove everywhere, up and down the country all the time for work. On holidays you’d walk for miles across fells in the Lake District, right into the middle of nowhere, never minding if you got lost, because if you did, you had your wits about you—you would see distant landmarks, familiar sights, and simply follow your nose. I couldn’t do that. Not now.
We wouldn’t get on now, you and I. Too much time has passed. We are friends who have lost touch, who now lead parallel lives. We like different things. You love the hustle and bustle of a busy city, whereas some days I lose hours just looking out of a window at the view. Just looking. Just still. And silent. But you always liked to be doing things, always wanted to be busy. You were never any good at just sitting. I have a lovely view where I live now. It’s in a village not far from Beverley, East Yorkshire. Actually, you might remember—it’s where Gemma lived. You fell in love with it too when we first came to visit, pointing out all the pretty red-brick cottages that line the street. You loved the friendly atmosphere, the fact everyone you met said hello whether they knew you or not. I do remember some things, like her showing you around the house, giving the guided tour, room to room, up and down stairs. You dutifully followed, excited too. Only she would have recognized that glint in your eye, that longing inside to roll your sleeves up and get stuck in, to open cans of paint and start decorating there and then. Nothing fazed you.
I am sitting in another hospital waiting room, with an overnight bag at my side purely as a precaution, or at least that’s what I’ve told my eldest daughter, Sarah, because I don’t want her to worry. It had been the GP’s idea to call one of my daughters when he handed me the referral letter, telling me to head straight to casualty. When I had phoned Sarah I’d promised there was nothing to panic about, that they would just need to check me over, that it would be nothing, although I’m not sure which one of us I was trying to convince. The sensation of a head half-filled with cotton wool has continued for months—since the last fall—and this weekend it has been much, much worse. A fatigue that I couldn’t fathom. My fork slipping from my hand, clattering onto my plate into my dinner. When I got to work on Monday, my colleague noticed how my words slurred from my mouth, and she’d sent me home. It was clear that this was something much more serious than simply burning the candle at both ends. And now I’m here, sitting side by side with Sarah on the hard plastic hospital benches, looking out at the scene unfolding in front of us.
Sarah is still in the throes of her nursing training and her newly acquired medical eye roams over each patient as the pair of us observe other bodies in the room; the crude slings, the blood-soaked tea towels grabbed hurriedly, toddlers impatient to wait their turn, and the mothers trying hard to disguise their worry from them. The referral letter in my hand feels damp beneath my touch. When I’d shown it to the nurse who assessed me on arrival, I’d been surprised that she’d recognized my name as a patient, that the GP had already phoned ahead. Despite the fact that I knew the drill, that I work in hospitals, I didn’t expect it to be happening to me.
They want to keep me in for monitoring. They’re not sure what’s to blame for the slurring, or at least even if they are, they haven’t said. I’m sent back to the plastic chairs while I wait for a bed, and it’s then that I convince Sarah not to wait with me.
“It could be hours yet,” I tell her. “There’s no point in us both sitting here.”
I see the doubt in her eyes, but she finally gathers up her coat and bag, and I promise to call her as soon as there is any news.
I was right to make her leave because it is hours later that they find me a bed. Darkness hangs outside at the windows as I’m led up to the ward. I lie on top of the sheets, still in the work clothes I’d dressed myself in that morning. All around me, nurses flit back and forth, never enough time between beds and patients, time flying on their shift, where for me it drags painfully. Ironically, I hate hospitals. I know I make a terrible patient. There’s an electronic roster on the screen I can just make out from my bed and the nurses who buzz around have no idea that I can read from it just how understaffed they are, that I know whose feet are tired from the day shift, who’s just arrived for the night. There’s nothing to do but stare at the screen between checks until a nurse arrives to assess me more thoroughly.
“How long has your speech been affected?” she asks.
“I didn’t know it was until this morning,” I tell her, as she takes a pen from her pocket.
“Can you pull me toward you?” she says, taking my weaker left arm in hers. I sense in her eyes that my arm is refusing to obey a simple test.
“OK, now push me away,” she says. The same again; she scribbles something on my notes, then leaves my bedside. I’m lucky tonight. They’ve put me into a side room, nothing to watch except different shades of blue as nurses hurry between beds outside. I slip into my pajamas, but I don’t sleep, the strange sounds from the machines I’m wired up to providing an unfamiliar soundtrack. Each time I feel my body relax, attempting to sink further into an unyielding mattress, an alarm goes off as my heart rate dips, a nurse rushes in and checks the screen, but I don’t panic. I have a low resting heart rate; I’m fit and healthy. Aren’t I?
Wendy Mitchell was diagnosed with Alzheimer’s disease in July 2014 at the age of fifty-eight. She continued to work as an administrator for the British National Health Service until March 2015, when she retired to live “happily alone.” She now writes a popular blog about the experience of living with early-onset dementia called “Which me am I today?” She has been profiled on BBC news, and for two awareness-raising videos, one for the Alzheimer’s Society in the UK and one by Women & Home magazine. The single mother of two adult daughters, she lives in Yorkshire, England.