Authors: Cath Staincliffe
‘Not at first – she didn’t believe me. Then, later . . . Well, she didn’t push me.’ Sophie is a little defensive and in the note of protest is the chime of a
different truth.
‘How was your grandmother in the aftermath of your father’s death?’
‘Very sad – she couldn’t stop crying. She had to see the doctor.’
‘And you moved in with your grandparents shortly after your mother was arrested?’
‘Yes.’
‘You live with them now?’
‘Yes.’
My skin prickles as I sense him circling my girl. A sharp pin after a winkle.
‘Did your grandmother talk to you about your father’s death?’
‘Yes. She couldn’t understand it, like me. It was so fast. We never got a chance to say goodbye or anything.’ Sophie’s face flushes and crumples and she squeezes tears
away. ‘Sorry,’ she says. My own throat locks in sympathy. Oh, Neil, what have we done?
S
ome of the harshest criticism I’ve faced, on television and in the newspapers, came from disabled people. Many with life-threatening
illnesses have spoken out about the risk to human rights when carers and relatives make judgement calls on a person’s quality of life. Members of the MNDA have issued several persuasive
statements about the misleading portrayal of the disease by the pundits and the very real possibility of a dignified and peaceful death if people seek out the appropriate resources. Some of these
arguments are familiar to me. I raised them when Neil asked me the second time to help him die.
We’d gone away to Barcelona for a weekend – three nights actually – to a resort a few miles north of the city. It was almost a year after his diagnosis and we had all been
adjusting to the new situation. Neil now had ‘foot-drop’ – he was dragging his left foot, which made walking and stairs hard work. It also ruined his shoes (well, the left ones).
He used a cane, a rather stylish carved affair with a snake on the handle and a silver tip. He was still working. School had been brilliant and had offered him an early-retirement package for the
following year, along with an understanding that he might need to take long-term sick leave before then if his condition deteriorated.
We often talked about how lucky we were: we had read so many horror stories of people plunged into debt and fighting for benefits, their last months a nightmare of the battle for recognition and
support.
We had a ground-floor beachside apartment with a veranda. The place had a pool and a restaurant, a small shop and a beauty suite. There was air-conditioning and satellite TV in our room and a
super-king-size bed. The complex catered to people who expected a little extra luxury from their holiday. Neil and I were like children exclaiming over the complimentary bathrobes and
state-of-the-art wet room. Arriving, I felt the thrill of adventure – daft, perhaps, given how cocooned we were in our four-star comfort.
We walked down the few yards from our veranda to the strip of beach. The bay was fringed with palms and pines and the edge of the sand was scattered with old fronds and cones. The sea stretched
calm and vivid cerulean out to the horizon. No children to worry about but the thought of Neil, weak in the water, drifting away, shadowed my mind. He wouldn’t do that to me, I reassured
myself. He wouldn’t.
Neil grinned at me and edged forward to the shallows. I slipped off my shoes and walked after him. Underfoot the sand felt hot and gritty, finer near the shore, then the water silky cool. Neil
caught my hand and we paddled slowly along the water’s edge, his lazy foot leaving an arc in the sand with each step.
‘Good, eh?’ He’d picked the resort.
‘Perfect.’
We soon turned back – he was tired.
‘Fancy a lie-down?’ I asked.
He turned, a sparkle of interest in his eyes.
‘To sleep,’ I said, ‘and then a little lunch. And afterwards I’ll shag you stupid.’
I dozed beside him for an hour, the room densely black with the shutters closed. I showered and changed into a sun-dress and went exploring. There was a road at the rear of the complex that ran
through the resort then up to the main coast road. About half a mile along, a mini-market sold everything from lilos to cheese. I bought a selection of tapas from the deli section and some fresh
rolls, a bottle of chilled white wine, a couple of squat glasses, sparkling water. We could have eaten at the restaurant but the prospect of lunch on the veranda and falling back into bed was more
romantic.
Strolling back, I soaked up the little details of being in a different country. The whitewashed walls draped with honeysuckle and splashes of bougainvillaea, the lizard that scurried away at the
edge of the road where rough concrete met dust, and water pipes emerged from the scrub. Tall, striped grasses hung with snails. The smell of hot resin from the pine trees and the tang of rosemary
and thyme baking in the heat. The sky was unbroken blue and some sort of larks dipped and spun above the fields, mirroring the cadence of their song.
While Neil showered, I laid out our little feast. Olives with herbs, chunks of chorizo and cheese, a pot of green salad, saffron chicken.
We ate and drank, the wine still achingly cold, with an appley taste and a slight fizz. We gazed at the sea, gazed at each other.
When the food was gone, I went inside and brought out our books. I stood beside Neil and passed him his
Homage to Catalonia
. He squinted up at me, the sun high and bright. He ran his hand
up between my legs, stroked me. I took a shivery breath. His face darkened with excitement and I bent and kissed him roughly before returning to my chair. While he read, I scanned the bay, followed
a little motor-boat and its silver wake, observed an elderly couple with faces like dried fruit, who walked down from one of the other rooms to the beach and watched the insects, hornets and
butterflies dance around the potted plants along the walkway.
I took the last of our wine inside and Neil followed. The shutters were adjustable (only the best) so I fiddled with the rods until they admitted little slits of sunlight, enough for us to see
what we were doing.
We kissed. I unbuttoned his shirt, slipped it off his shoulders. Bent and pulled down his shorts, helped him step out. His balance was delicate, and simple things like undressing were harder for
him now.
‘Lie down.’
He stretched out on the length of the bed: still slim, his skin smooth, his penis erect. I undressed myself, savouring his eyes on me. Making love was easier with me on top. I kissed him and
stroked his arms and his chest, his belly and his thighs before guiding him inside me. I rode him slowly at first, relishing the languorous movements, the way my own body responded, swelling and
quickening. He played with my breasts and my nipples. Our breathing became harsher, ragged. He called to me, dirty entreaties, words he knew would arouse me more, then placed his hand so that as I
thrust up and down the pad of his thumb pressed against my clitoris. Panting and moist with sweat, the tension of sexual excitement washed through me, growing and retreating, ocean pulses that
gathered depth and speed until I came, sighing loud with sweet relief and setting him off too.
We spent the afternoon lazing on the beach, on loungers under a big blue parasol that flapped in the breeze. Time and again, as I rubbed oil on his back, as we waded into the cool water, as we
considered where to eat that evening, the realization that this might be our last holiday together swept over me. Like gusts of wind knocking everything about. Hating myself for the maudlin
sentimentality, I struggled to live in the moment. To savour the pleasures we were sharing, not to look ahead. To focus on the details: the scent of coconut from the sun cream mingled with the kick
of brine, the particular colour of aquamarine at the end of the bay, the fine dark hairs on Neil’s knuckles, the crisp texture and honey taste of melon bought from the beach vendor, the feel
of grit between my toes and the thready whine of a motor-boat on the horizon. But Cassandra had my soul and her talons gripped my head and held my eyes wide, one bony claw pointing to the future.
The prospect of death stuffed my ears and nose and throat with dread. Perhaps, I thought, the holiday had been a mistake: stripped of our routines, there was too much time to think.
Neil knew me so well that he likely guessed at my melancholy. We’d had a couple of sessions with a counsellor who worked with terminal patients and their families. The general guidance was
not to try to deny or hide the gamut of emotions: the savage embrace of anger and fear and guilt were normal and to be accepted. Neil seemed calm. Why couldn’t I smell his fear? If our roles
had been reversed I imagined I’d have been noisy, needy, bitchy. Making the most of my remaining time by having tantrums. But he seemed to find a stoicism within, a steady centre for much of
the time. A legacy, perhaps, of his childhood faith – the sweet resignation to God’s will, the certainty of an afterlife of love and grace. Even though he didn’t believe it, or so
he told me, might it still be a comfort to him? He had been angry at times, once the initial shock had worn off, turning to me one evening after brushing his teeth, face trembling, eyes ablaze,
telling me, ‘I’m so fucking pissed off, so fucking—’ before he broke, a sob deep in his throat. (The books said crying more, or laughing more, was a symptom some people
experienced, probably to do with changes in the frontal lobe so that these responses were ratcheted up. I don’t think that happened to Neil: his crying was always correctly proportioned to
the situation.) His anger seemed to seep away over the next couple of weeks. When I asked him about it, his answer startled me: ‘I’m desolate, there’s no room for anything else,
but there’s moments of, I don’t know, euphoria, too.’
‘Euphoria?’ The guy’s dying and he’s getting high on it?
‘Everything’s so intense, and still so ordinary.’ He smiled, shaking his head a little because it sounded weird. ‘It’s amazing.’
‘But desolate?’
‘Oh, yes.’
Any illusion I had that our Barcelona trip was going to be an escape from real life shattered on the second night as we sat on our patio after dinner. My skin had that taut sensation from the
sun and the salt, I was tired from the heat and the sea air and the wine and surprised that Neil hadn’t already flaked out. Our books lay on the table. I was too sleepy to read and he’d
set his down when he topped up his glass.
‘It’s beautiful,’ I murmured, staring out at the inky night, the sea’s dark pierced by half a dozen fishing-boat lamps, the sky by thousands of stars flickering magnesium
white.
‘Can you see Orion?’
I laughed. Neil had taught me some of the constellations, the Greek heroes flung into the night sky for eternity.
‘Yes. And there’s Cassiopeia.’
‘Deborah,’ he said quietly, ‘I want to choose the time.’
My skin contracted. There was the sensation of a blunt blow to my stomach, a blur of rage in the back of my skull. How dare he ruin all this with his unreasonable requests? ‘I
don’t—’
‘Listen.’
I sighed and turned to look at him.
‘It’s going to happen, we know that. I don’t want to wait until I’m choking—’
‘It doesn’t have to come—’
‘Just listen,’ he interrupted. ‘I want a good death. For me that means choosing when.’
He paused, inviting me to respond.
‘I won’t stop you.’
‘But will you help me?’
I didn’t speak. A flutter of black swooped past near the roof – a bat. I studied my nails, the ridges and grooves, the cuticles ragged. My mind tangled. ‘You might not need any
help,’ I fudged. ‘Look, there are organizations, aren’t there, people who go to Switzerland . . .?’
‘I don’t want to go to Switzerland. I want to be at home, with you. I want you there with me, Deborah.’ His voice shook with emotion.
A thousand questions skittered in my mind: how would you do it, what would we say, what would I have to do?
I stared up at the stars. They were cold and brilliant. My eyes watered, making each prick of light a pinwheel, the jet sky now full of silver dandelions.
‘We can manage the disease,’ I tried. ‘The association, there are so many things we can do, you won’t be in pain, you won’t choke . . .’ My words were running
on like panic, filling the hiatus.
‘Deborah?’
‘I’ll be there,’ I said slowly.
‘And you’ll help?’
What could I say? No, I’d rather you did it, actually, all by yourself, so my conscience will be clear. Now I’ll just pop down to the shore and wash my hands of you.
‘I don’t think I can.’
‘When you had Adam,’ he said, ‘you wanted to be at home. I thought you were mad.’
‘Your mother didn’t help.’ Veronica was a nurse and firmly toed the line that first babies are best born in hospital. She’d tried to talk us out of it even though Dr
Frame and the community midwives were completely at ease with the idea.
‘Maybe not,’ he said, ‘but I trusted you, I went along with it. It was fine, Sophie too, even with the cord, but you chose.’
‘It’s not the same,’ I protested. ‘In fact, it’s the opposite. I wanted home births to avoid intervention, if possible. I wanted it to be as natural as possible.
What you’re talking about is
not
letting nature take its course. It’s interfering.’ I could feel my tears rising.
‘I want it on my terms.’
‘No. I want to keep you here as long as possible, not help you slope off early. I don’t even know whether I want you to die at home – I want the safety of knowing you can go to
a hospice where people know the score, where they can help us.’
I began to cry silently. I wasn’t looking for comfort but the anxiety inside was too strong to contain. ‘It’s not fair, you shouldn’t ask me. I don’t want you to
die. Why should I make it happen any sooner? I’ll do everything I can to help, Neil, but not that.’
The silence burned between us. I could hear the suck of the sea. I stood up then. Mumbled something about a walk. When I returned Neil was in bed, asleep. And the final day of our holiday, our
very last holiday, was brittle with resentment. My throat ached, my stomach cramped. Neil was remote. The beauty of our location, the gorgeous weather only served to highlight our shared
misery.