Constellations

by Sinéad Gleeson

  Still, she has a small but close band of friends, and is always surrounded by family. No matter what the company, she is indefatigably herself. Wry, wise, funny. Strong and self-sufficient, she asks nothing of anyone. Class or the universally observed Catholicism of the day may have instructed her not to demand too much. Occasionally I heard her put on a posh voice, often used in deference to actual posh people.

  There is her laughter, a once-frequent shriek of delight, but it is rare these days. Laughing at a joke means you understand. There is a moment of cognisance: I see what you did there. Back at home after her stint in the dementia ward, she’s replaced books with TV. One afternoon it’s blaring a show about fishing and I ask her about a trip to Rimini she took with her best friend. There was sunburn and men chatted them up as they sipped Limoncello. When she tells this story, I picture her Hepburn-like in shades and a headscarf, driving along a cliff road. I wish I’d known her then, her younger self; so much responsibility at home but free of it for a few days on the Italian coast.

  Every week we invite her for dinner, and slowly the words start to drain out of her. Vocabulary becomes an unfamiliar tool, as if she’s handling a wrench. There was always easy conversation and discussion, but now the words become flotsam, just out of her reach, hard to snag. Lining them up is so much effort that she can sit through pasta and salads, sometimes as far as dessert, completely wordless. Her friendships, save for one or two, start to get left behind. She refuses to travel or attend family events. She stops going to Mass, and then she misses a close neighbour’s funeral. The self she knew inches away from her, and she begins to abandon her own life. I think of a line from Lolly Willowes: ‘It is best as one grows older to strip oneself of possessions, to shed oneself downward like a tree, to be almost wholly earth before one dies.’

  It is innate, this fear of unravelling. We might not see the car as we step off the kerb, or feel the bullet’s initial bite into skin, but we know something has happened. We know there will be blood. It’s the stealth of Alzheimer’s that’s so cruel. In most deaths – even a drawn-out, throat-rattling, morphine-addled demise – we remain ourselves. Medicated, intubated, but us. This illness transforms only the interior. The body becomes less a prison than an aquarium. Visitors, the people you love, looking in, regarding the body-snatched version of your mind. You, looking out, your whole worldview distorted as if by water and that thick, impermeable membrane. You now, and you as you once were, on separate sides of the glass.

  It eventually becomes clear, though we admit it with devastation, that Terry needs full-time care. My parents scour the city for a nursing home that is close to where we all live. They find a clean, comfortable place where the staff are kind and there is a garden. On the first day, when she is transferred from the hospital, she refuses to go in, screaming in front of the building, blaming my father, much to his distress. They have done so much for her, but are getting older themselves. They cannot take her on.

  In the first weeks she keeps to herself, and rarely leaves her shared room. In the other bed is a woman who is never awake. The only sound is the pump filling her pressure mattress, air spreading under her frail limbs. On the wall there is a framed photo of me at a book awards ceremony. One winter day, when the light has gone by late afternoon, she gestures to it, eyes trained on my daughter, and says: ‘Look! There’s . . .’ And even though I am there beside her, my name is a mystery. A collapsed dune, thousands of grains seeping from the hole in her memory.

  The house in the working-class area where she grew up was built in the 1930s, and the back gardens are long rectangles. As I’ve grown, so has the garden, the lawn now shaded by the height of the trees. I see her with gloves and secateurs, always planting and sowing, deadheading rotted petals. Yellow snapdragons and silken tea roses. Purple African daisies that she insists on calling ‘union flowers’ because they close their petals at sundown. In summer the air hangs with the perfume of sweet pea in pink and mauve (a word that instantly makes me think of her). And there is lavender – bushes of it – heady for only a couple of months a year. A row of plum trees sprout, their close planting like upturned ribs, with two makeshift swings on the branches. We’d push ourselves as high as we could, gripping the greasy twine, learning to tuck our legs under on the descent to build momentum. Her happiest moments were spent here, taming the overgrown honeysuckle with string, battling a relentless buddleia.

  In the summer we sit in the back garden of the nursing home, and she tells me – conspiratorially – that there’s a secret door in the wall. The first time I’m curious, but we find only a laundry room, the rumble of dryers, the smell of steam and artificial meadows. I ask about the flowers in the raised beds, but the names have long left her. Each time we pass, she insists that my father planted them (he didn’t).

  I know her tricks now. The ones she uses when she is trying to hide the fact that she and her memory are at odds. She feigns deafness sometimes – ‘What?’ – which buys her a couple of moments to process a question. Mostly, she shrugs, as if she doesn’t care, but I see the shadow pass over her face. The struggle. She never talks about what is happening, but I know that she knows. After a particularly difficult attempt at telling a story, she stops, and says with a haltingness that takes the air out of the room: ‘Sometimes . . . the words . . . I just can’t find them.’

  We rarely ask people their stories, the small moments and big joys of their lives. Their regrets. We don’t until it’s too late. Until we are sipping whiskey from the wrong size glass at someone’s wake. She is still here and I don’t know how to ask, Did you ever fall in love? It’s too big a question now, too impertinent to pose when her brain struggles with, ‘Do you want me to turn the TV down?’

  My daughter makes signs for Terry’s door. One declares her the best auntie in the world. They’re a statement of ownership – a flag staked on a mountaintop – but their main function, on this small, straight corridor of bleached floors, is that she can tell which room is hers. There are lots of optional activities – art, crafts and social events – but she refuses to get involved. She used to paint, and on the sitting-room wall of my childhood I remember a framed seascape. When she retired, I bought her new brushes, fat tubes of oils and small canvases, hoping she’d take up art again. My father found them in a wardrobe, unopened, while packing up some of her things to move her to the home.

  When I see her now there is still a flicker of recognition, but it dims a little more every time. One weekend I arrive to her laughing with another patient. Arms linked, we walk back to her bedroom and I ask about the new pal. There is nothing on her face to say she is being evasive. Instead, she has already forgotten the moment of them laughing, and cannot tell me her name. This annihilation of moments that have literally just happened is new.

  This is not the worst it could be. Others tell me stories: friends caring for parents, their collective faces carry the same resignation. The woman who keeps being found at bus stops because she’s going to visit her siblings – who all live in England; a mother who hits her adult daughter because she thinks she’s her husband’s new girlfriend; a man who has never been to war talking about life in the trenches. Terry’s manifestation is quiet withdrawal, repetition, a feeling that something is not quite right.

  By spring, her body starts to draw level with her mind in terms of deterioration. There is double incontinence, her appetite diminishes. A cup of tea dangles at a dangerous angle in her freckled hand. The sentences become even more half-formed, the lexical equivalent of a ghost estate. She walks me to the door, and I see the stoop, the tilting of her frame, the slack arm. A nurse notices too, and later they call to say she’s in hospital after a mini stroke. But she is awake and here and still trying to shuffle words into the right order. Her kind face, once full of hundreds of stories, now only wants to sleep.

  One of us is in a boat, the other on the land. She is so still these days, so quiet, that it must be her up there on the clifftop looking down. I am the traveller depa
rting, tilting on the riptide. The house and garden, once so full of her, are quiet, rose petals falling, plums still clotting on the branches every autumn. She lives two kilometres away from her old life, almost a straight line from the house. She is in her eightieth year in a quiet room, unseeing the news, unreading the books on her bedside locker, but still smiling whenever someone she thinks she knows walks in.

  In April, there is another mini stroke, a declaration of what’s to come: more seizures, rocketing blood pressure, the total evaporation of speech. Her life pinballs between nursing home and hospital. She begins to refuse food. I offer her yoghurt and creamed rice on a spoon, and she seals her mouth into a tight line. A hospice nurse arrives to insert a morphine pump, talking quietly about phases of death, about ‘active’ dying. And there it is. We know now that she will leave us in a handful of days.

  In her room the staff set up a mini altar: a white statue of the Virgin Mary, holy water and candles (electric, for safety). To secularise this, I add a book and flowers from her garden, London pride and African daisies. It’s too early for lavender, so I bring essential oil instead, dropping it onto her pillow, mixing it with hand cream to rub into the ridges of her veins.

  Over the weekend her breathing becomes apnoeic, deeply drawn from the well of her lungs. A juddering sound, then nothing for up to twenty-five seconds. I stare at her unrising chest, watching the pulse in her neck, a weakening beacon under the skin. The nurses say she can still hear, so I read her The Clocks by Agatha Christie. Staff appear occasionally, making checks, offering tea. Her height was one source of her self-deprecation – ‘Good goods in small parcels,’ she’d say – and now she looks even tinier, lost under the sheets.

  Death has a particular smell. A finality and staleness. It resembles an unaired house, or the space under the stairs. Her room has never felt so small. There is so much waiting. Time is static, but creeping on, measured by her worsening breath. By Sunday, after midnight, it is loud, an amplified snore. This battling with her own body is hard to watch. My father and I sit by the fake candles. More morphine to ease her distress. The beacon in her neck slows, her skin starts to cool. Leaving the home on that last night, I kiss her hands. You were so important, I tell her. You were so loved.

  Terry dies in the early hours of 1 May. It is also known as May Day or Beltane, sometimes called Lá Buidhe Bealtaine, ‘the bright yellow day’. On May Day, yellow flowers celebrate the start of summer because they resemble fire, and are placed on the doors and windowsills of homes for good luck. On Terry’s coffin we place yellow lilies alongside paintbrushes, books, and a framed black-and-white photo of her and her best friend in a sixties mini dress and sunglasses. A time when her life still had so much possibility, her mind carefree, hungry to know about the world. Beltane is halfway between spring equinox and summer solstice. In the calendar, it is the opposite festival to Samhain, symbolic of endings, of dark months and the harvest; while Halloween overlaps the worlds of the living and the dead. Dementia left Terry halfway between her recent self and the person we had always known and loved.

  Author Sylvia Townsend Warner also died on 1 May, thirty-nine years earlier. In creating Lolly Willowes, Townsend Warner gave literature one of its most famous female characters. A woman who obliterated the idea of what a woman alone could be, a woman who revelled in her independence and found solace in nature. And a character who demands the question of all of us: what constitutes a self-determined life, a life well lived? The way Terry lived hers – being vital, real and exactly who she was – impacted hugely on my brothers and me. We were not related to her by blood – and that’s a longer, complicated story – but felt she was in our DNA. Her skin was ours, our hearts were hers.

  Days as dark as when she died – numb ones full of shock – are rare. There was another some years back, when I was in hospital with a lung clot. My husband had just left after hours of waiting and Terry was there when the really bad news came. A completely unexpected diagnosis of aggressive leukaemia. We stared at each other, baffled, distraught. It was the only time I ever saw her cry. ‘What’ll I do without you?’ she said, finally. And this is what I have been asking myself since that May Monday.

  It is finally summer, and every bloom in Terry’s garden is thriving in the sun. On what would have been her eightieth birthday, we spread her ashes. Greyness falling on the open petals, on rose thorns, on the daisies and clover that have encroached since she stopped tending the lawn, and on the purple spears of lavender swaying in the breeze.

  A Non-Letter to My Daughter

  (named for a warrior queen)

  I write this to you, daughter,

  Place these words in your hands,

  To help you understand

  The way the world will be

  Because you are a girl.

  That chemistry and biology

  Have colluded

  In your cells.

  That to some

  your being is a reason

  to chasten,

  your body a warning

  A tocsin

  How X, or double X, marks the spot.

  The target for what you cannot

  Do, or say or be.

  See, I write this to you, daughter,

  But I could write this

  To my son

  But as Joe Jackson sang

  It’s different for girls.

  Your girlness, that unfairness

  Is an ongoing thing – that the world

  When it tilts and spins – will push you away

  And you’ll be weighed up on the way you look

  Your size and your face

  The space you take up

  And if you put out or put up with things

  Don’t feel you have to smile

  just because

  Someone tells you to.

  To cheer up love,

  To hey I’m talking to you,

  To hey, stuck-up bitch.

  Don’t change if you don’t want to

  But change is a leap into the light

  Chrysalis, hit and miss

  I realise that don’t is not a word

  we should direct at girls.

  Your lungs were the last part

  of you to work

  when you were born too early,

  but you sing, and you sing and you sing.

  And if someone scorns the notes that you bend,

  the songs that you send out into the world

  Sing louder. Be bold.

  Don’t hold in your porcelain belly,

  skin smooth as an egg,

  like the ones you make me boil,

  and only eat the yellow from.

  Hold on to your good friends,

  Those bright boys and girls,

  Who light up when your name is mentioned,

  Don’t try to make that girl like you

  Don’t fret when you are excluded

  Jettison bad cargo

  Folk who talk out of the side of their mouth,

  Those who go out of their way to avoid your good news,

  who flash facsimile smiles when the world smiles on you,

  The people who are too afraid to try to do

  what you will one day do.

  Be a wanderer, a nomad

  A rover, a roamer

  Sail all the seas,

  Be guided by stars

  Climb trees, talk to birds,

  Sow seeds wherever you go

  Leave footprints in every city

  Kiss and be kissed.

  Find your sisters,

  From other mothers

  Your Amazons and witches

  Believe in gods and monsters

  If you want to

  Swim in lakes and rivers

  In slivers of reeds

  The green hum of water

  In your ears.

  Embrace heights,

  Climb higher

  Cliffs and bridges are not to be feared

  Your mountain breath

&nb
sp; Can withstand it all

  Grow flowers and wander

  Amid pollen and petals

  Never settle for what you don’t want or love

  Weigh the world up,

  like a bag of water

  Try to guess the weight of the life you want.

  Your peacock swoon

  And tiger spine

  Oh, your sea glass eyes

  Don’t be afraid,

  Don’t be fearful.

  They are not the same thing.

  Don’t worry about what will happen next.

  Assume there is goodness all around

  unless there is not,

  and even then, be the goodness.

  Constellations key

  Acknowledgements

  A book is not the work of one person and I am grateful to various people who helped Constellations on its way.

  I am lucky to have not one, but two editors at Picador: the brilliant Paul Baggaley, a champion from the moment he read it, and Kishani Widyaratna for her fierce intelligence and the care and attention she gave this book.