Rose talks at one stage about ‘the unhappiness of one who refuses to dwell in hell, and who lives, therefore, in the most static despair’. The hell she refers to is a state of mind, the place where pain and suffering and mortal fear lurk. Dwelling in hell is the antithesis of the modern malaise of ‘positive thinking’. It means not shutting out death or suffering, or believing it can be overcome through virtuous living, but accepting it as intrinsic to life. Christians interpret Silouan’s words as an invocation to remain humble before God and submit to Jesus as your saviour, but Rose places them firmly in the secular realm. She quotes approvingly her oncologist when he says: ‘I know there is no natural justice, because you, who have harmed no one, have cancer, while Saddam Hussein does not.’ It is liberating to divorce death from notions of justice and glory, and accept it as the universal event that it is. It renders life meaningless and precious all at once. The value of a life is wholly determined by how it affects other living beings. Martyrdom and the death penalty are absurd notions, because they confer moral authority on an indiscriminate process. Nobody deserves to die, and yet everybody does.
In Magteld’s last weeks we were consciously living in hell, but it was a hell that she had shaped and furnished, and that was oddly comforting. The sense of pain and discomfort was imprinted in every step; simple tasks such as tying shoelaces became aggravating trials. And all the time we knew that the trajectory of her demise could nosedive at any moment. Most people learn to cope with this process over decades, but for Magteld it was compressed into a few months.
One of the duty nurses told her, ‘You don’t have to live with pain.’ It is a peculiar twenty-first-century conceit that medicine, by anaesthetising physical pain, can remove suffering. The novelist Haruki Murakami, in the very different context of his memoir on running, coined the epigram: ‘Pain is inevitable, suffering is optional’. As a runner this appeals to me, but in other aspects of life it falls short. Suffering is not always avoidable; the real choice is whether or not to despair. Magteld was constantly confronted by her impending extinction. It was present in every twinge of her back, every cough, every faltering step and clean-and-jerk lift between the bed and the wheelchair. Yet she rarely despaired. In dying she had learned how to live, but only once she had learned to temper her suffering by cultivating her own corner of hell.
She had the freedom to dismiss the banal injustices of traffic jams and supermarket queues and slow internet connections, and concentrate instead on what was worthwhile and beautiful. But while Magteld cherished every hour we spent together as a family, I had to consider the life to come, alone with the children, while simultaneously trying not to think about it. Our world was contained in a sealed glass box on the surface of a lifeless planet. Magteld’s physical realm had shrunk to an area of a few square miles, defined by the beach at one end and the hospital at the other, yet as long as the box remained intact we could still pretend life was carrying on as normal.
Sometimes the illusion flickered. We were in the bathroom one evening, brushing her teeth before she went to bed. There wasn’t enough space for Magteld and her wheelchair in the room, so I had to lift her out and twist myself out of the way while she balanced in my arms. What were a few small steps for other people had become a precarious spacewalk. She leaned on the sink and brushed feverishly, keening for the firmness of the chair. When she was finished I steered her backwards into the chair, but this time her leg buckled and she slumped to the floor. She lay crumpled on the tiles, shunting out the breaths, her face a mask of startled terror. We had become old without warning, frail and fearful. I still had the body of a healthy person in the twilight of youth, and so, but for a few decisive aberrations, did she. But in that moment we saw a lucid apparition of the fate that awaited us, as ghastly as a fetid swamp. I could read her thoughts: When did I become this limp bundle of rags? How much worse is this going to get?
With a tremendous effort I lifted her off the floor, and put her in the chair, and kissed her on the forehead, and she gave me that soft, tight-lipped, fearful smile, and we staggered into bed to gather strength for the next day.
Was it really a privilege to survive? Magteld would die soon, surrounded by her family and those who loved her, warmed by their hands and moistened by their tears as she vanished into eternity. She would live on in our memories, in shared anecdotes, a reassuring presence, like a monument, ever young, ever beautiful, her imperfections smoothed by time and softened by the mist of memory. I had to stagger on, raise her children in the shadow of her absence, the core of my soul gnawed away by her cancer. Was it really better to give up one’s last breaths half a century later, alone, withered and forgotten, in the amnesic surroundings of institutionalised care?
The boys would be Scottish expats rather than semi-natives. Ghosts and echoes would linger in Magteld’s house, occupy our dining table, our sofa and our bed. The absence of her laugh ringing in the hallway, her non-footsteps creaking on the stairs. She understood the looming hell better than I did. The dead are taken care of; it’s the living who need looking after.
The day after she moved in I took Magteld to register at the council office. The town hall resembled a giant futuristic church, with a huge open atrium where the citizens were processed, while above their heads officials bustled about on open walkways over ten storeys, their silhouettes filtering the light like stained-glass saints. It was appropriate for what was essentially a confirmation ritual that would also, mercifully, resolve the opaque status of her medical insurance cover.
The appointment was scheduled for 9.20 a.m. I arranged for the support nurse to arrive half an hour earlier so I could take Adam to school, pick up Magteld from the house and wheel her down to the tram stop. She packed two vials of morphine in case her spine flared up, selected her best jacket, and we set off down the road. Fate allocated us a tram driver who flung the vehicle around every corner as if test-driving a rollercoaster. By the time we arrived in the city centre twenty minutes later Magteld’s face was stretched in pain and she had polished off both morphine vials.
The Hague’s streets were undergoing a facelift, with duckboards for pavements, streets closed off, cyclists weaving between pedestrians, and giant cranes performing surgery on lacerated buildings. For a wheelchair user it was an uncomfortable obstacle course, especially when at the mercy of an inexperienced helmsman. Somehow, despite doubling back at a couple of dead ends and taking a detour through a department store, we made it to the town hall only fifteen minutes after our allocated time.
I pulled a ticket from the machine and a few minutes later we were summoned to the front desk, me still slightly breathless and Magteld weary from battling the pain. A woman with ink-black hair cropped like a privet hedge greeted us without smiling. She sat on a raised platform, so our eyes were directly level; Magteld sat with her head below the desk, out of sight.
I gave our names. The woman peered at her computer screen, looked up again and shook her head. There was no record of us in the system.
I gave her the time and name of the appointment. She looked at the screen. Then looked at the clock over her left shoulder. Then looked back at me.
‘Your appointment was at nine twenty,’ she said. It was 9.40.
‘I know,’ I replied tersely.
‘You need to be here on time, sir.’
We had been expunged, it seemed. I mumbled an excuse about being held up on the way. From down in her wheelchair Magteld grimaced and asked what the problem was.
The woman responded with a look that could have melted steel. ‘We’ll have to make a new appointment for you,’ she said.
I looked down at Magteld. I looked back up at the woman and met her unflinching stare. I explained to her, in my plainest Dutch, that we would not be making another appointment. That I had wheeled Magteld to the town hall across an urban desert, in defiance of her pain. That we were here to sign her up as a resident in this, the international city of peace and justice. And that we were not going home until th
at task was complete.
The woman pressed a button on her computer. It spat out a paper ticket which she flung in my direction. ‘Take this and join the first queue on the left. I don’t know if or when they’ll be able to help you.’ She dismissed us with a turn of her head.
Where in this city, I wondered, would our autistic children learn about empathy?
I grabbed the ticket, uttered a curt thank-you to the side of her head and wheeled Magteld over to the queue. We waited less than five minutes. A polite young man called us over and checked the records on his computer.
‘You’re already registered in the system,’ he said. ‘Are you still living at the Jacobshospice?’
It turned out that the council had, after all, approved her application from the hospice. We breathed a sigh of bewildered relief, too exhausted for anger. All we had to do was register Magteld’s new address.
‘Can you do that for us?’ I asked the man.
He shook his head. ‘No. You’ll have to take another ticket and go to that desk over there.’ He gave a slightly apologetic smile as he explained this, the first sign of human warmth we had witnessed in this building. I wondered if he’d be reprimanded for it.
We waited another hour, and at the end of it the council records declared that Magteld and I were living together in the house she had chosen. We stopped at the supermarket and bought a box of ice lollies, one of which we shared as we rumbled along the duckboards back to the tram station. Thankfully, the journey back home was a good deal gentler and Magteld’s pain had subsided. I wheeled her in through the door of what was now, officially, her home.
12
She was a devotee of TV drama, beginning with Our Friends in the North and graduating to The Wire, The Killing, The Bridge, Wallander. As housebound parents, we spent our evenings burning through boxsets. In the autumn before we left Glasgow we started on Breaking Bad. It might seem an odd choice for someone who had just gone through cancer treatment, but Magteld was quickly drawn in. It was, perhaps, a way of escaping the drama in our own lives to watch it as detached observers, in the fictional realm and on a more helter-skelter trajectory.
She considered writing a blog about Walter White’s Icarus-like rise and fall. I saw parallels between the disease and White’s personal development: he starts out producing crystal meth on a small scale, to provide for his family, but gradually the respectable chemistry teacher with a sideline metamorphoses into a ruthless drugs baron who permeates the supply chain. What begins as a minor deviation from a settled, unexceptional life metastasises and ravages every aspect of Walter White’s life. You could say he becomes the cancer. It is an entropic process of chaos eclipsing order.
Perhaps Magteld was drawn in by White’s well-meaning but ultimately ruinous desire to leave a legacy for his family. Or maybe she just enjoyed a gripping TV drama. When we reached the end of Season Four she shook her fist in triumph at the denouement. Sjoerd had disclosed the ending to her a few weeks earlier, while I was in Glasgow, and she had stubbornly kept it secret. I wondered if the fist-pump was a show of resistance, that she had survived to see the climax of her favourite show, like Simeon’s bargain with God to glimpse the infant Jesus before departing this world.
The next day I ordered the final season from Amazon, so we could look forward to watching it the following week.
One of the tasks that occupied Magteld in the hospice was to find someone who could look after the boys during the week. If I could delegate part of the responsibility of childcare it would free up enough time to allow me to start looking for work (I’d been turned down for the job in Utrecht after the second interview). A short trail of phone calls led to Stephanie, who had worked with autistic children in Africa and was a trained music therapist. Magteld researched suitable interview questions and invited her to come to the house during our first weekend there. Over a cup of tea, accompanied by strawberry cream biscuits which I had bought in a misguided attempt to make the occasion more authentically Dutch, and which remained untouched on the plate, we agreed she would start work nine days later, on a Tuesday.
Magteld posted an update on the progress of her radiotherapy on Facebook: ‘So far I [have] had 3 and already feel the benefit . . . This weekend is lovely and we enjoy the sunshine at the beach. Tomorrow we go for it again.’
The Saturday was Euan’s birthday. We had taken the tram into the city to buy a Lego set, ordered a cake from the local patisserie and invited the family to come and celebrate in the garden. In the few days beforehand Magteld had been struggling to settle at night, and her breathing was becoming heavier. Eight sessions of radiotherapy in ten days had drained her energy; there was one more on Monday, before chemotherapy began the next day.
She worried she would let Euan down by being too sick or too exhausted to make his eleventh birthday, and his first in The Hague, a memorable one.
‘You’ll be there for him,’ I said. ‘That’s all he wants.’
Saturday was a bright, warm day. We sat in the sunshine demolishing creamy, softly crumbling millefeuilles topped with fruit, the standard-issue Dutch birthday cake. I was gently reproached for not providing the miniature forks that every Dutch household is supposed to keep for such occasions. Soft laughter rang through the house and wrapping paper piled up on the table as Euan tore open his presents. It was a scene Magteld must have visualised when she viewed the house in February. Next week would be June, the days were lengthening, and we looked forward to convening again over the summer.
The day before Euan’s birthday Magteld had written her first blog in weeks, about the challenge of starting chemotherapy again. ‘I will be losing my hair again and I could be ill for a few days and need rest.’
She asked me to edit and post it over the weekend. She liked to sit at her iPad and watch the web statistics page light up as readers all over the world connected with her.
Sunday morning was a precious moment of calm. Magteld had fought for breath in the night, and both of us were tired from the week’s exertions. In the afternoon she rallied, and we decided to go outside, if only briefly, to feel the warmth of the sun and let the boys expend some energy.
We found a school playground where the gates were open. Magteld sat beneath a tree, to protect her irradiated skin from the sun. She didn’t relish the potential irony of surviving one form of cancer only to be torpedoed by another. The boys scooted about the playground, which was laid out like a road network, dutifully following the roundabouts and dotted lines. The shadows of the leaves danced on her face as she watched the children following the markings on the ground.
So began the last twenty-four hours of Magteld’s life.
Back home her breathing became more laboured. I asked if she wanted to go to hospital, but she declined. We were due there anyway in the morning for her final radiotherapy. I cooked speklapjes – long thick strips of bacon, one of many Dutch staples with which she had been reacquainting herself – with potatoes and broccoli. I surprised her with her favourite childhood dessert of steamed pears, having stumbled across them in the supermarket. Her eyes gleamed with nostalgic joy, and for a few minutes she sat looking at them as they sat on the table, swaddled in their own juices. I’d neglected to post her blog, and she had been annoyed at me, but the pears won her over. ‘I’ll do it in the morning,’ I promised her, and kissed her tired cheeks.
Since we were waiting for the final series of Breaking Bad to arrive, we picked Airplane off the DVD shelf and watched it with the boys as the sun dimmed. I got the boys ready for bed first, followed by Magteld. I stayed up for a while, trying to write despite the enveloping fug of tiredness. A plaintive call from the bedroom shook me from my musings as I realised, with a pang of shame, that I was shutting out something greater than sleep. I lay with Magteld for a while to settle her, administering the trusted medicines of morphine, liquorice sweets and pear ice-cream. Her chest was rattling like a broken radiator.
‘I don’t mind if you take me to hospital tonight,’ she muttered
.
Soon afterwards her pain seemed to ease, her breathing became regular and she slipped into something like sleep, though I could feel how the struggle for breath cramped her whole body. At around midnight she asked me to lift her out of bed and wheel her to the dining-room table, because she couldn’t rest lying down. She propped herself up on her elbows, took another ice-cream and tried to doze off. In the morning the nurse would come, and I would take Adam to school, and the resumption of our daily routine would bring relief.
After three hours of fitful sleep she called out again, in a soft, pained voice. I went through and sat with her. There was no doubt now that she had to go to hospital. I called the emergency line, described her symptoms and asked if she could be taken in.
She cut in, resisting. ‘I don’t want to go to hospital,’ she snapped wheezily. ‘I just want to know how I can breathe better.’ How often must this scene have visited her in her darkest nightmares: the ambulance drawing up outside, two men removing her from the house, and the doors of the vehicle closing on her? Reluctant as I was to overrule her, I could see she was wilting fast.
The ambulance was dispatched. The woman on the line said it was not a blue-light call, meaning it would have to stop for red lights. It would be with us in about fifteen minutes.
After I put down the phone we sat together at the table, our hands entwined. We stroked each other’s fingers gently and looked in each other’s eyes. Neither of us said a word. The boys slept on upstairs, oblivious. Pallid light slowly filled the room.
All the Time We Thought We Had Page 15