I overhear him mention it on the phone: Fatal Familial Insomnia. The first word crashes into my mind and my feet refuse to keep moving. Of course I can’t hear the doctor’s response on the other end of the line; all I am aware of is the quiver in Sam’s hushed voice.

When Sam finally leaves for work the dying computer takes half an hour to turn on. Fortunately, when my trembling fingers have negotiated the keyboard, my search is completed in 0.28 seconds. My heart panics more and more with the first paragraph of the first entry, as Wikipedia reveals to me that there is ‘no known cure’ and ‘survival span after the onset of symptoms is 18 months’. The word ‘genetic’ swims into my vision.

But there is hope. I focus on the words ‘very rare’, blinking away water from my eyes. Only forty families worldwide have been diagnosed. Surely Sam would know. His family are all fine. His parents are alive. Brothers and sisters, even his grandparents all healthy. Despite myself, I scroll down to symptoms and read on: panic attacks, hallucinations, weight loss, and of course insomnia. None of it matters. The chances of Sam having fatal familial insomnia must be one in millions.

Sam takes deep, steady breaths, but he is not asleep. He cannot fool me. I think he must be perpetually haunted by that mundane view of our ceiling: the cream shade protecting the energy-saver light bulb – the tassels that hang from it greying with age; cobwebs gathering around the light; the hole two inches to the left where a child’s mobile once hung. We don’t sleep in the master bedroom – it is too big for us. Instead, we sleep in this secondary room where the drab flowery wall-paper fades more every day, a few strips curling forwards like heads drooping with sleep.

He shifts slightly next to me, exhaling deeply, counting sheep, cows, chickens, donkeys – a whole farmyard until the night ends. It is a relief to him when the first rays of morning seep in through the curtains, throwing patterns across the room. Only then – as he rises with the sun, hurries from the prison of our sheets – only then can I turn over in my cocoon of blankets and surrender to exhaustion.

But tonight the darkness is thick around us. The words from the computer playing in my head, jarring and repeating like a scratched CD. I glance at the bedside clock. Digital. Four numbers reveal that it is nearly two o’clock. The clock was long ago banished to my side of the bed. It was too much for him, staring at those deadpan digits. I roll over and rest my hand on his chest, pressing my head into his shoulder.
‘You’re still awake?’ he asks.
‘Let’s go for a walk.’

We dress without words, wrapping up warm because it is always cold in the middle of the night. He locks the front door behind us and we walk into the square then down towards the river.
We stroll for some time, enjoying that serene late-night peace. The street lamps above us dowse their reflections in the water. Boats, moored along the river, sleep on as we pass, undisturbed. Tarmac sprawls out in all directions, a city painted in so many shades of black: the dark clouds set against a darker sky, the towering buildings, the somnolent water.
We pause on the footbridge, and he puts an arm around me. A willow weeps into the water from the shadows beneath the bridge.

‘I heard you, you know,’ I whisper.
‘Heard me when?’
‘On the phone. Tell me what’s going on, Sam. What is this…fatal insomnia? Do you really think you have it?’
A look flares in his eyes as he fixes his gaze on the water.
I reach for him. ‘But it’s genetic. None of your family has had it. Your parents are fine, your grandparents are fine…’
‘My parents are dead.’
I cannot let go of his arm, although my hand is shaking, making his whole body tremble. We stare at each other in silence, waiting for him to explain. I have met Lorraine and John a hundred times; they are in our wedding photos; last year I cooked Christmas dinner for them. Lorraine told me how pleased she was that I’d made her son happy.
‘I’m adopted, Sally. My dad was killed in a car accident and my mum died…’ he clears his throat, ‘in strange circumstances.’
‘Strange circumstances..?’
I release him. I cast a silent prayer from the bridge and watch as it falls down – down – not even troubling the water as it sinks.
‘So…it’s likely?’
‘It’s a possibility. I’m going for tests tomorrow. It may come to nothing. Promise me that you won’t worry about this until we know for sure?’

I cannot promise him, I can only cry. He walks away so his tears do not exacerbate my own. I watch him for a moment, and he looks so thin. He is half the broad-shouldered man from our wedding photographs only a year ago. Standing there, in the dark, the list of symptoms washes over my mind and I cannot hide for a second longer the knowledge that he has suffered from every single one.

The clock tower gazes down at us as we return to the empty square, and a plastic bag dances across the cobbles like the wind’s improvised glove puppet.
‘I’ll be there in a minute,’ he calls to me as I open the door, so I leave him outside and take the stairs on my own.
The clock reveals that it is a few minutes before four, and I feel cheated that only one of the digits has changed. How easily time – eighteen months’ worth of time – can slip by without you noticing.
I look down at him from our window. He is sitting on the wall with his back to me, swinging his legs back and forth against the brickwork despondently, waiting for the colours of sunrise to leak onto the horizon, colours that I very rarely see. His festering despair is juxtaposed against the hope of a new day.
I change and he still doesn’t come back into the house. My thoughts are drawn to the chest of drawers by the bed. I tease the bottom drawer open, but when the front door bangs I seal it shut again and slip into bed. I am already drifting off when he slides in at my side.

The bed is cold. His trainers are gone from their place by the door. It is only six. I go straight to the bottom drawer and take the little box to the bathroom, my hands shaking with every step. The plus sign on the pregnancy test repels all positive thoughts from my head. I stare at that tiny mathematical symbol that changes everything. Maybe my tears will wash away the vertical line and leave me with a minus. I am still staring at it as the front door slams, as I listen to every one of Sam’s twenty footsteps up the stairs.
‘Honey?’ he calls out.
‘Just a minute.’
The pregnancy test takes a dive head-first into the bin and I sweep through the door and into his arms.
‘Did you sleep okay in the end, honey?’ he asks, stroking my hair.
I nod into his shoulder, trying to hide my red eyes, but he holds me away from him.
He squeezes my shoulder. ‘Wait for me for breakfast? I’m just going in the shower.’
I nod as he passes me and shuts the bathroom door. I listen to him moving around inside, praying that I never hear the metal clang as the bin springs open. When the shower is muted by the soft pellets of water raining onto his body I leave him there. Taking the phone off its stand in the kitchen, I book my own doctor’s appointment.

A young woman approaches me, pushing a pram with tiring steps. I turn and greet her, fussing over the baby. It smiles serenely in its sleep, one hand clutching at an embroidered comforter. The mother looks weary, but glows with that air of satisfaction a parent always exudes as strangers admire their child. My hand automatically floats to my stomach. The baby locks eyes with me and starts to howl, transposing my anguish.
In the doorway to the doctor’s surgery a skeletal young man in an oversized suit holds the door open for me. My heart jars when I realise he is my husband.
‘What are you doing here, sweetheart?’
‘Your tests…what did they say?’
‘I have to wait for the results. Are you all right?’
I nod. ‘Just a stomach complaint.’
‘You didn’t tell me you were unwell.’
‘It didn’t seem important.’
‘I’ll come in with you, give you a lift back home.’
‘No!’ my haste takes him by surprise. ‘I mean, don’t worry, you get back to work. I’ll be fine. I need to pop into town after anyway.’
He hovers, uncertainly.
‘Go back to work, Sam, please.’
He nods and squeezes my hand, and when he watches me into the waiting room rubbing my stomach he only thinks it’s because I am in pain.

The doctor confirms my worst fears. Two days before when I bought the pregnancy test I felt like a sparrow was fluttering in my stomach. I had suppressed the urge to ring my mum and tell all my friends, and to see the look on Sam’s face when I told him he was going to be a father. I wanted to be absolutely certain before I told the world. And now the doctor, her face glowing with the thought of new life, burns me with her ‘congratulations’ and her platitudes. When she sees that her own joy is not reflected back at her, I feel like a world-champion clipping the last hurdle and falling to the ground.
‘There are people you can go to if you don’t want to keep the baby,’ she says very quietly, glancing around the room.
I have made her feel uncomfortable.
‘I need to go.’
She nods and I feel her eyes following me from the room, her sympathy leaving a trail of ash all the way from her desk to the door.

Sam tells me that when I am asleep next to him I am like an anchor resting in the harbour’s depths. He teases me because I always have good dreams, and he claims he can tell by the little smile on my face. I haven’t told him about my most recent dreams. They usually take place on a maternity ward. Sometimes I give birth to a normal baby and then it opens its eyes and they are like black pits. Other times they won’t even let me see it.
I wake up over and over again. When I roll over to face Sam he is always feigning sleep. I have never seen him sleep. He is the cruise-ship on the water’s surface, all the lights are off but deep down in the ship’s stomach the engine is still whirring, the captain and his crew forever manning their posts.
One time I actually wake screaming; the air around the bed reverberates, echoing my horror back at me. Sam pins me down, touching my cheek, his concerned face only increasing my pain. I clutch at my sides, struggling unintentionally under his embrace.
‘Sally, it’s okay, you’re awake now. The nightmare is over.’
I look up at him and I feel the first tears escape. If only I could wake up from the nightmare.
I nestle into him. ‘Will you call in sick tomorrow?’
‘I don’t think I can. I’ve got a really important meeting after lunch.’
‘Just for the morning then?’
‘Sal…’
‘Please.’
He continues to stroke my hair distractedly. He is juggling work schedules in his head.
‘I know it’s selfish, Sam, but please can we just spend the morning together? And then I can drive you in after lunch?’
‘Okay. I’ll check with the boss, but it should be all right.’
He kisses the nape of my neck, drawing me even closer.
‘Now go back to sleep, sweetheart.’
It is hard to drift off with the thrumming heart of an insomniac beating against my back, but an anchor cast into the sea cannot resist gravity.

I take his hand and lead him across the square.
‘Where are we going, Sal?’
‘It’s a surprise.’
He is struggling to keep up with me so I slow my pace. His favourite restaurant is only five minutes from our house. Marco welcomes us, ushering us to our table in the window. The boyish smile plays across Sam’s lips as he holds the chair out for me.
‘But it’s not a special occasion.’
‘Why does that matter?’ I grin at him. ‘What are you going to order? Let me guess, a speciale pizza?’
‘I might do. I haven’t decided yet. But I bet you’re already craving spaghetti carbonara.’
I will order the carbonara, I always do, but what I am craving is a whole other matter. When Marco returns we decline his offer of wine and settle for juice.
‘He’ll have the pizza speciale please,’ I tell Marco.
‘And she’ll have the spaghetti carbonara,’ Sam’s overenthusiastic Italian accent makes Marco wince and roll his eyes at me.
I play with the ring on my finger, twisting it round, letting the diamond catch the sunlight.
‘I’m going to the bathroom, Sam. I’ll just be a minute.’
I splash water on my face, re-apply the faded mascara. The ring continues to sparkle. I check the appointment card in my bag: two o’clock. The last time I cried in these toilets was the night Sam proposed.
Sam is still smiling when I return to the table. He looks so tired but his smile almost manages to scatter the shadows on his face.
‘Are you sure you can’t take the rest of the day off? Just a little bit longer? When’s your meeting?’
‘I can’t. It’s at two o’clock. I’m sorry, Sally. Any other day…’
My heart shudders at the mention of that time. The appointment card feels heavy in my bag. I wish I could tell him, but maybe it is fate that he has to go into work.

We pop back home after lunch, and he apologises again.
‘Where are my car keys?’ he asks. Two o’clock is drawing near us.
I take them from the spot he always leaves them. ‘I’ll drive you.’
‘No, really, it’s fine. I don’t mind. You’ll have to pick me up later if you drive me now. I don’t want to take too much out of your day.’
I sigh. I cannot argue anymore. ‘Are you sure you’re okay to drive?’
He gives me the same answer he always does and kisses me goodbye.

It feels like months pass as I sit in the waiting room. Two o’clock has passed by. Sam must be sitting in his meeting, making that important decision. I swear when I arrived there were more leaves on the bare trees; those that remain look duller and less alive. I rub the base of my stomach and wish he was here. I wish he knew. When my phone coughs into life it startles everyone in this tense little room. Anxious female faces all stare at me as I fumble with the phone lock.
‘Hello?’
‘Sally, it’s Lorraine.’
Lorraine never rings me.
‘What’s wrong? What’s happened?’
‘It’s Sam. He crashed his car. They’ve taken him to hospital.’
‘Is he okay?’
The silence prickles the hairs on the back of my neck. ‘Just come quickly.’

He has never looked so peaceful. Sleep suits him. It suits him so much the doctors say he might never wake. All he has ever wanted is sleep and now he has it why would he ever let it go?

I love watching the rise and fall of his chest. He has been sleeping for three days solid. It is like he’s finding all those lost nights, paying back his sleep debt. But every day he sleeps now apparently makes it less likely he’ll wake. And now I am the one awake at his side, stroking his hand and scrutinising the heart monitor as it becomes the only sign of life. Sometimes Lorraine sits with us too, but she doesn’t like me to see her cry.
‘I didn’t know he was adopted,’ I tell her during one of our late-night sentinels.
‘Really? He was very young when his…mother died, I don’t think he remembers her much.’
‘I know he thinks of you and Rob as his real parents. He hasn’t told me anything about his…biological family. Why…why did she die?’
‘They don’t know. They never found a reason. They said she sort of just faded away after her husband died.’
We both look down at Sam. He twitches as if he is listening, but maybe it’s just wishful thinking.
‘Did he tell you about the insomnia? He thinks it’s a fatal genetic condition.’
Lorraine stares at me. ‘He thinks he has what she had?’
I nod. ‘They’ve done tests. He was waiting for the results.’
‘So even if he wakes…?’
Neither of us can speak the end of her sentence.

On the fourth day Sam starts to slip through the cracks. It begins with the almost indistinguishable paling of his skin. And when I touch his fingers, it is like holding an icicle. I wrap my hands around his to try and rub the warmth back into them. Then his head rolls back slightly, and I grip his fingers tighter but it doesn’t help. He flat-lines. And so does my heart.
Nurses flock into the room like vultures to carrion. They bring the smell of death as they cluster around Sam’s bed, squeezing me out of the circle. The beeping sound drives a pin through my skull, and I crumple on a chair in the corner, my hands pressed firmly over my ears. I hear nothing but the sound of Sam dying.

The nurses gradually peel away until there is only one and a doctor left. The doctor looms over me, trying to tell me something. He gently takes my arms away from my head, and bends to speak to me.
‘I’m very sorry. We couldn’t save him. He wouldn’t have felt any pain. We’ll let you have a bit of time with him.’
He waits for me to respond, but finally gives up and ushers the remaining nurse from the room.

Lorraine enters with two coffees. She lets out a shriek and runs to Sam’s side. Throwing herself over his stomach she starts to howl. I wish I could comfort her but I cannot move. I just stare into the coffee puddle on the floor.
It doesn’t seem real. Sam doesn’t sleep. It must be a dream. I have only ever seen Sam sleep when I am dreaming.
It feels like only moments have passed, but it must be longer because a nurse returns, gently moving us aside so she can pull the sheet over Sam’s head and it seems that’s it. He’s gone.

Our bed is even bigger and emptier than usual. I feel like I am drowning in all the extra space. I lie on Sam’s side of the bed, clutching his blankets against my stomach. There is something haunting about the gloomy ceiling staring back at me, and sometimes it seems like it is closing in. Lorraine suggested she stayed the night. I wanted to be alone. She said she’d be back in the morning, if ever morning comes.

I reach over to my side for the clock and put it on Sam’s bedside table in front of me, staring into its face. It is three o’clock. Even on a bad night I am usually asleep by now, leaving Sam alone with his inescapable vigil. I want to feel the rise and fall of his chest next to me; I want to snuggle up in his arms. He is just away on business, or wandering about the house in the dark; he’ll come back. If not tonight then tomorrow or the night after. He will come back. He has to.
The envelope is leaning against the bedside lamp. Sam’s doctor rang earlier and I collected it. It is still sealed. The little piece of paper inside could dictate my future if I let it. I don’t want to let it. What if I open it and the results are positive? I won’t be able to have the baby, Sam’s baby, the only part of Sam I have left. The beautiful little boy or girl who will have Sam’s little nose and his gorgeous curly hair, and hopefully, one day, his smile, but not his insomnia. If I open the envelope and there is a chance Sam’s child could die of insomnia then I would have to say goodbye all over again. I can’t do it. I don’t want to know. I stare at the envelope, wishing Sam was here to help me decide.
I get out of bed and snatch the envelope. I balance it in my hands, wondering if there is any difference in the weight of a negative or positive result. I remember when our exam results came at the end of our final year, and I was too scared to open mine so Sam did it for me.

I don’t have to open it. Taking the stairs, I find myself in Sam’s study. The leather of his chair feels cold against my bare skin. The shredder is sitting on one side of his desk. It whirs to life when I flick the switch. I take just one quick breath, and then feed the envelope into the shredder’s sharp teeth. It swallows hungrily.
I press my hands against my stomach. ‘You’re going to be all right little one. Your daddy has cleared the sleep debt.’
I climb back up the stairs and curl up in the double bed. In moments, I fall effortlessly into a deep and dreamless sleep.

About Sarah Dutton

Sarah is an English Literature and Creative Writing graduate with a strong interest in all things to do with literature. She spends all her free time writing stories and working on larger projects. She is about to start a Masters in Publishing at Oxford Brookes University, with the hopes of one day becoming an editor.

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