The third time, I record everything I want to; my pillbox labelled with days of the week, a selection of brightly coloured tablets filling each little compartment like sweeties. My memory room and all the photos that make me feel calm, the box of memories I keep in there, complete with Sarah and Gemma’s tiny first shoes on top. I talk on camera about my greatest fear – the day that I don’t recognise my daughters.
‘I’ve said to them that one day you’ll come in the room and I won’t know who you are,’ I confide to the camera. ‘I won’t know your name, but I’m sure I’ll feel that emotional connection of love that we have for each other. And for them to always recognise that even though I won’t recognise them, I still love them.’
I put the camera down. Some bits that I’m sharing, the fears deep down inside, are harder than I realised. I take a moment, a few slow breaths, and then remind myself that this film will help people to understand more about dementia. I switch it on again. I’m as honest as I can be, knowing that Jim will take the snippets he needs when the four weeks are up.
The next day I sit on the bus to work, the camera in my rucksack. I’ve got up extra early because I want to film before anyone else arrives. The office is in darkness when I get there, the last of the night still clinging to the windows. I want to record that moment when I got lost in my office, when I walked out of the door and didn’t have a clue where I was. I press ‘record’ and see the red light start flashing, but when I begin to speak, the words are lost. I go back to my desk and write a little script, something I can read as I’m walking. I start again, leaving the safety of my office, just like I had on that day, and stepping out into the corridor and, as I hear my voice, echoing down the emptiness of the hallways, I feel my heart start to thud under my blouse. As if it’s happening again. The tiny image in the viewfinder brings back that day that had twisted my insides with a fear like no other I’d ever experienced. I feel again the sense of loss within myself, a complete detachment from my own mind. It’s terrifying.
I pause in the corridor. Despite the fact I’m reading from a script, my thumping heart threatens to steal the words written in biro. I take one tentative step and then another, an almost exact carbon copy of that day. I go through two sets of doors, then into the bathroom with its safety glass, into the soft pink of the toilet cubicle, and there for a few moments I stay, just as I had on that day. I stop recording and take a breath or two, blood thumping at my temples, the camcorder in standby mode, the soft whirr of the mechanisms still turning over. I leave the cubicle, grateful for the cool air that hits me back in the corridor, of the recognition that greets me. This day is not like the last.
I hurry back to my desk and push the camcorder back into my bag, but I know for sure then the impact this film will have, and the anxiety is replaced with a feeling of empowerment. I have always been so private, so protective of sharing anything personal, and yet I know that by sharing I can change opinions, I can shift the images instilled in people’s minds of what it’s like to have dementia, like the elderly person in a bed, the same pictures that flooded my own brain when the word had been first mentioned. I can show that dementia has a beginning and a middle, as well as an end.
A few weeks later the Alzheimer’s Society sends me another email, this time asking if I will review Still Alice for them before its cinema release. Of course I say yes. It arrives special delivery and the postman hands over a white Jiffy bag and inside the DVD of Still Alice, the fictional tale of a fifty-year-old linguistics professor diagnosed with dementia. I hold the package tightly between my fingers; I know it’s not going to be an easy watch. I had already read the book three times, the advantage of having Alzheimer’s myself meaning that the plot unveiled itself surprisingly every single read, but while I’d been impressed with how accurate it was – each of my worst fears unfurling at the turn of the page – I’d been able to put down the book when it became too much. But watching it on film, seeing an animated version of the character I’d felt so much for in the book and a straight run-through of her decline, is going to be hard.
It feels safer somehow to watch it while the sun still shines through my window in the early afternoon. I slip the DVD into the player and wait for the credits to roll. In my lap I have a notepad and pen, I’ll write notes, I tell myself as the first scenes unfold. I’ll detach, I promise. Be professional, not personal. One of the first scenes is of Alice jogging around her university campus. I smile, remembering my own runs. I think of the trainers at the back of the wardrobe and a sadness swells inside, but before I know it, Alice has stopped, the world spins around her, out of control, the buildings she clearly knows so well suddenly unrecognisable. I see the blank on her face, the disorientation, and the likeness immediately takes me back to that office corridor. I can feel the pen relax inside my clammy palm, but I can’t tear my eyes away from the film.
A few scenes on, Alice is delivering a speech; she stumbles over a word, shrugging off the problem in the same way I had. I’m staring at the screen, watching scenes unfold in front of me as if they are plucked from my own life. I don’t move; it feels as if the very breath has been stolen from me, as if breathing is nothing more than an inconvenience, a distraction from what has captivated me so much. I don’t realise I’ve been holding my breath until I hear a long, deep sigh. It’s the end of the school day and I can hear chatter outside my windows, the beep of the pedestrian crossing as parents ferry their children home, but my eyes stay fixed on the screen.
The image of a butterfly folder grabs my attention. In it, Alice has put instructions on how to take her own life when she goes over the edge into someone she doesn’t know. But her pitiful dilemma unfolds on screen: how do you know when you’re standing on the edge waiting to fall? We all like to think we’ll know, that we can rely on the conscious mind we use to make decisions to remind us, but one of my greatest fears is played out on screen like a moment from the future fast forwarded to meet me right here as Alice desperately tries to carry out the instructions her healthier self has left her, but the cruelty of time has already taken her beyond that point of no return.
During another scene a few moments on, when the disease has made its march and her younger daughter has become an unfamiliar face, my breath comes in short wisps and my head feels too light for my shoulders. I’ve read about this moment. I’ve attempted to conjure up images too painful to linger on, but here is the hurt being played out in front of me. My eyes are fixed on Alice, the way she looks at her daughter, the glazed stare in her eyes; Julianne Moore has got it just right. It’s only then that I step out of the film, reminding myself that Moore is playing this woman, but how has she got it so right? Her character is looking directly at her daughter and yet it’s clear she doesn’t see her.
By the time the film ends, as the credits roll and the player dispatches the DVD from the machine, the notebook is still lying open in my lap, the pen in my hand, not a single word written down.
I need a cup of tea. I get up from my chair, my body stiff, my mind rolling a series of images, all sensation given way to a nothing numbness. I stare out of the window, watch the birds hopping around my garden on tiny slender legs until my brain returns to me. I know I need to watch it again, so I push the DVD back into the machine, and sit down with notepad and pen.
As I rewatch the opening scenes, an intelligent, affluent woman celebrating her birthday with her family, I write: It captures the reality that Alzheimer’s shows no bias of age, sex, intelligence, wealth or ethnicity when selecting those to challenge with the disease. But a few scenes on, Alice’s eyes hold my attention again – is this what Gemma and Sarah see when they look at me on a bad day? And my mind flashes forward, images crash into my brain of days when I constantly wander around with that blankness written large on my face, when those are the eyes my girls know, when they’ve forgotten about these eyes that see them back. Suddenly, I feel panicked. I don’t want my daughters to ever be my carers; I want to be their mum … I want to be their mu
m. The scenes whizz by in the film and I snap myself back into concentrating. Under the last sentence I write four words: powerful, shocking, raw, inevitability. Then before I know it, the player has ejected the DVD again. I look up at the windows at the end of my second attempt. Traffic rumbles by and it’s still light, for now.
I make another cup of tea and try again. What is so fascinating for me about this film is the way it captures the true picture of the disease from the pre-diagnosis stage and the slow, barely noticeable decline. I remember the questions without answers that accompany those endless days – searching and fearing the explanations in equal measure. The film shows how memory is stripped away so indiscriminately, and that no amount of love we feel for someone can protect against the theft of our recognition of them. But the emotion must remain, even when there’s a space where their name should be. Surely that much love can’t just disappear? It must stay trapped inside instead. I make a note on my pad to tell the girls this, to make sure they know. Has that thought occurred to me before?
Everyone remembers that feeling of losing a precious possession, an item of sentimental value. If you’re old enough, it’s happened many times throughout your life, and if you’re a toddler it’s the most traumatic thing that’s ever occurred. For those of us with Alzheimer’s this is our everyday, yet it’s not items that disappear, but our most precious memories, the stories that make up who we are. But we don’t lose our emotions, so the love must just be locked away behind those sad, glazed eyes.
I watch the film over again one more time. I write in my notes how impressed I am by how refreshingly real Alice’s decline is, how her story is portrayed with sensitivity, avoiding clichés. It is a powerful insight into dementia, the reality of the disease, the reality of the effects it has on the individual and those around them. It is a shockingly accurate reflection of my own experience. And that hurts and heartens me equally.
By the time the player ejects the DVD for a third time, the night is black, the screen goes blank. I sit alone in the dark.
Another email, another request, another ‘yes’ mailed back to the Alzheimer’s Society, but this time much more enthusiastically than any before, because it was an invitation inviting me to attend the premiere of Still Alice in London. I’ve travelled down on my own, getting here early so that I know where I need to be in good time, outwitting the panic that always threatens to descend with dementia. I find the Curzon cinema, but the doors are locked and bolted and beyond them is darkness. It is hours yet until the stars will start to arrive, but at least I know where I need to be. Instead I wander the streets of Mayfair in the smart camel coat I’ve bought especially, my Dementia Friends forget-me-not badge pinned proudly to the lapel.
I find a café nearby and sit down for a cup of tea, watching people come and go; the businessmen flitting in and out between meetings, the tourists clutching maps of the city, friends shopping for the day, making space between the tables and chairs for their huge bags with designer names stamped on the front. Sometimes it still feels incredible to find myself here, alone in a café in London, far from my office up in Yorkshire, the intensely private person in me buried under the avalanche of a disease that is so perversely opening up new opportunities to me every single day, new experiences that I grab with both hands because it has also granted me the gift of having a better sense of how short life is. I sip my tea and smile, at odds with my diseased brain and yet strangely thankful for it. Can something so terrible as the diagnosis of a progressive illness really be seen as a good thing?
I turn my attention instead to my itinerary for the day. First I’ll be meeting Christopher and his wife Veronica, who also took part in the filming for the Victoria Derbyshire programme. I’m going to be meeting Angie, a dementia support worker, and Gillian, who she supports. I know from my experiences at the WOW Festival and York Minds and Voices that meeting others with dementia always makes me feel safe, so I’m confident they’ll help keep the nerves at bay before we meet Julianne herself. I hadn’t even heard of her before I was told about this film, but Sarah had been so excited, telling me she’s a big Hollywood star and one of her favourite actresses, and so inside my rucksack are two copies of the novel, which I’ve promised to get signed for my daughters.
Finally, the hands roll around the café’s clock face and it’s time to head back to the cinema. Another new experience, another lonely walk into a room. It’s impossible to ignore the butterflies bunched inside my coat. When I arrive at the cinema, the area has been transformed; it’s not quiet like it was a few hours ago. Instead, railings prevent anyone from getting into the cinema, paparazzi and their ladders are a few feet deep, spilling into the road, and beyond them there’s a flash of red at their feet – the carpet for the stars. I stand watching for a few moments as the panic I’d been so desperate to avoid this morning starts to gather. How will I get in? I pull my phone from my bag and dial the number of the contact I’ve been given.
‘There are reporters and cameramen everywhere,’ I say. ‘I don’t know how to get in.’
A reassuring voice from the other end of the phone tells me to stay where I am, they’ll come and find me, and a few moments later there’s a smiling face, a hand waving from the crowd.
‘This way, Wendy!’
I follow her along the red carpet, my brogues unsuited to a walkway more used to celebrity heels, and now we’re inside, away from the chaos outside. I breathe a sigh of relief and follow the young woman to meet the others. We meet inside the journalists’ area and there’s a buzz as reporters and TV presenters flit around us, rehearsing lines or deep in research notes preparing for their own meetings with the big star. I sit down with my new friends, also invited here by the Alzheimer’s Society, mostly watching everything that’s going on around us, commenting every few moments about how exciting it all is. I sip at my tea, clinging on to the sense of normality my cuppa offers me, the smile growing on my face as I become used to the surroundings. There’s too much going on to decipher any conversation, so those of us with dementia are happy to sit quietly, just watching, having no expectation of conversation or filling in the blanks between us. And then at the windows we see a flash of light bulbs.
‘This must be Julianne,’ someone says, and I feel a flip inside.
She sweeps into the room in a beautiful black snakeskin-patterned dress, and is immediately descended on by reporters. While she does various interviews, I’m taken away to do my own for Radio 4’s Today programme. When I return, the room has started to empty, the journalists, happy with the quotes they’ve got, have left to watch the film, and we have Julianne to ourselves. She is so refreshingly normal and unpretentious, chatting to each of us as though she’s known us forever, remembering our names, making us feel special. She tells us many stories about the research she’s done for the role, and we laugh and nod, knowing that a moment later all the anecdotes will be lost.
‘You have the advantage over us,’ I say. ‘Because you’ll remember our meeting, whereas we’ll all forget.’
We laugh.
‘Do you think I got the role right, Wendy?’ Julianne asks.
‘One thing you got spot on was the eyes,’ I tell her. ‘Your eyes told me you had dementia.’
And she smiled, happy to hear that.
‘How do you live your life?’ she asks.
‘I live for the moment. I don’t plan any more. I just enjoy each day as it comes.’
And as Julianne nods, for a moment I have that strange feeling again, as if Alzheimer’s is a gift, as if we could all learn something from the harsh lessons it teaches.
She doesn’t rush us and happily signs everything we’ve brought along, then she asks for a group photo as well as pictures with each of us individually. She says goodbye to each of us, remembering our names again, and then she’s whisked away, back to her people.
That evening, at home, I watch a Channel 4 interview with Julianne Moore, and the reporter mentions my name to her. Her eyes light up and a smile s
preads across her entire face.
‘I’ve met Wendy!’ she beams. ‘Wendy is great! Wendy said that she used to plan a year in advance. She doesn’t do that now – she plans the next week, she thinks about what’s happening now and she’s grateful for the present, and [that] she’s alive. And, in a sense, that’s how we all need to live our lives, really holding on to what we have, because that’s the only thing we truly know about.’
There it is again, that sense of what Alzheimer’s can give, not just take away.
A few days later, I wake in the morning to see emails and texts. Julianne Moore has won a leading actress BAFTA for her role in Still Alice. Not only that, but she mentioned me in her acceptance speech. It all feels quite surreal, a Hollywood star talking about me in front of the whole world. I cross the room, pick up the copy of the novel that Julianne signed for me and open the title page.
To Wendy, so happy to know you, with love and thanks, Julianne.
Two months later I am pacing some different London streets, walking back and forth between my hotel and the BBC studios to make sure that tomorrow morning I know where I’m going and what landmarks to look out for. I walk the route twice and return to my hotel with a sandwich and a drink before it gets dark. This big city feels unnerving and disorientating after hours, when the lights go down and others brighten up, when buildings are a ghostly shadow of their daylight selves. I prefer then to watch it from behind the safety of my hotel window. I am here to watch the camcorder recordings that I put together for the Victoria Derbyshire programme. They were originally meant to coincide with the release of Still Alice, but it needed to be put back a few weeks. After watching the recordings, we’ll be interviewed in the studios, but the most exciting thing for me is the opportunity to meet Keith Oliver at last. It was, after all, his video on YouTube of life with dementia that had made me see this disease so differently, had made me believe there is a life after diagnosis, and what we were doing tomorrow will be living proof of that.
Somebody I Used to Know Page 11
