The Kindest Thing

Chapter Six

It was just before Easter 2007 that Neil first complained of stiffness in his hands and arms. I wasn’t very sympathetic. It’s the sort of reaction I get myself if I’ve been doing something that involves a lot of manual work: cutting tiles or screen-printing, repetitive movement that strains the muscles. I said as much but he replied he hadn’t been doing any physical jerks. Try paracetamol, I told him.

He didn’t go to the doctor until the summer. The GP gave him a course of anti-inflammatory drugs and asked him to come back afterwards. They didn’t help.

After his next appointment, when he came home, I could see straight away that something was wrong. His face was sallow and he’d an artless, vulnerable look in his eyes. Sophie was in the kitchen, sorting out ingredients for her food-technology class – pineapple upside-down cake.

I sent a warning glance to Neil, not that he needed telling, and walked after him into the lounge.

We sat down. He looked at me, gave a little ‘huff and swallowed. ‘They want to do tests.’

My guts clenched. I assumed he was talking about cancer.

‘It could be… the weakness, losing control…’

I stared at him, the cup he’d smashed, the plates he’d dropped now sinister.

‘… it might be motor neurone disease.’

Stephen Hawking on The Simpsons, wheelchair, robotic voice, head lolling to one side.

‘Oh, Neil.’ I wrapped my arm around his shoulders. ‘It’ll be all right,’ I said. ‘Whatever it takes.’

‘There isn’t any cure.’

My heart stopped. ‘But the treatment, there must be something.’ I refrained from mentioning Stephen Hawking – he’d lasted years. Or had he got a different illness?

‘Not really,’ he said quietly.

I kept still. My mind was scrambling, trying to unpick what he was saying.

‘It just has to run its course.’

A deluge of fear, my heart thudding in my chest. This wasn’t happening. No. It wasn’t true. It was a mix-up, that was all, a silly misunderstanding.

‘Oh, Neil. These tests,’ I said tentatively, ‘it might be something else.’ A condition they could treat, a disease they could cure.

‘Yes.’ He took a shaky breath and then another. He was crying. I’d only ever seen Neil cry three times in our years together: at the birth of our children and when I’d told him about my affair. The sound of him crying was alien to me, the rhythm unfamiliar. I climbed on to his lap, wrapped my arms tight around him, raised one hand to cradle the back of his head. He put his face in the crook of my neck. His tears soaked warm into my T-shirt. He was going to die. How long? I was screaming inside. How long? Ten years? Five?

People talk of a bolt from the blue, of being thunderstruck, and that was how it felt. As though Zeus had hurled his lightning bolts at us, a sickening crack to the skull, a galvanic shock, paralysis and the sun stopped in the sky.

‘It might be fine,’ I said.

And the lie, the false hope, lay leaden between us.

At the first opportunity I had, when everyone else was out, I went online to find out about the disease. Doctors did not know what caused some people to develop it. It was not a virus and there was only a hereditary link in a very small minority of cases. Each site I logged on to reported the same stark facts: for those people with the most common form of the disease, life expectancy was between two and five years from diagnosis. Neil’s muscles would weaken and waste – he would lose ability in his arms and legs first; then chewing, swallowing and speaking would become difficult. As his chest muscles also weakened he would only be able to sip shallow breaths. Eventually his breath would fail.

On the upside, he was not likely to become incontinent or impotent. He could go down fucking, then. He wouldn’t go senile either. Although the disease affected the motor nerves that connected the brain to the muscles, the brain itself wouldn’t be affected. He’d be fully aware until the end stage. MND is not a painful killer, not like the cancer that riddled my mother and rendered her insensate with pain. MND sounded sly and swift and wilfully random.

As with any new project, I flung myself into research hoping understanding might make me better able to deal with the situation. I read and read, surfing link after link, waiting for obscure medical abstracts to load as pdf files, sussing out books on the disease, startlingly few. But all it did was reinforce my anger, my alarm, each new web page breaking over me, a cascade of rapids, cold and treacherous. Without hope.

Neil’s next appointment was with a hospital neurologist. Apparently it isn’t easy to diagnose MND in the early stages: the symptoms may be due to other problems, which have to be ruled out. After an examination, a muscle biopsy and an electromyography test to measure muscle strength they might be left with MND. A matter of elimination.

We agreed not to say anything to Adam and Sophie until we knew one way or the other. We were worried about Adam’s reaction. Sophie would be devastated but Adam’s state of mind was fragile and a shock like that could see him in meltdown again.

As it was he beat us to it.

That Friday night, a few days before Neil had to go for tests, Adam didn’t come home. He was sixteen then and had just started back at school. Part of the deal he’d made with us and the counsellor was that he’d be home by midnight or get in touch if not.

That night we lay in bed longing to sleep, taking turns checking the clock. I tried Adam’s mobile at twelve fifteen, one thirty and two forty-five. I got up at five. The house was chilly. There’s a convector heater in my workshop. I went to get it, half hoping that Adam would be there, spreadeagled on the rug or even huddled on the bench in the garden. A lost key, reluctance to disturb us, the explanation.

There was no Adam. Back in the kitchen, I made coffee with hot milk, then dragged out my bread-maker, dusted it down and sprinkled in dried yeast, filled it with wholemeal flour, adding sunflower seeds, chopped dried apricots and walnut pieces, salt, sugar, olive oil and water.

Neil came down at seven. ‘Adam back?’

I shook my head.

‘Should we try Jonty?’ He was one of the friends who still hung out with Adam.

‘It’s very early, I’ll try at nine.’

Neil stood behind me, wrapped his arms around me and stooped to kiss my cheek. ‘He probably got pissed and stayed at someone’s house.’ He straightened up.

‘And lost his phone?’ I was more sceptical. And also, if I thought the worst, as I had done all night – the body broken beneath car wheels; the figure, beautiful and bare-chested, falling as he tried to fly; the knife fight after some silly comment; the beating dished out by a gang of hard lads who had sniffed out Adam’s middle-class softness – it would not come to pass.

The phone rang. It was Manchester Royal Infirmary. Adam had been admitted to A &E. Unconscious. He’d ingested a cocktail of drugs washed down with vodka. They were pumping his stomach.

When we got there he was awake but very drowsy, looking sheepish and then plain sad when I asked him if he was okay.

‘I’m sorry,’ he said to us both. There was defeat in his tone, a note that sent a chill through me, as though he’d accepted that it would always be like this. Him messing up, him hurting us, scaring us.

He claimed not to remember anything about the hours before he collapsed.

‘Nothing?’ Neil said incredulously. ‘Not where you were, who you were with?’

Adam shook his head and looked away, his lips parted slightly, his tongue up behind his front teeth: a trick he uses to fight tears. Had he taken the drugs to get off his head or had he wanted to harm himself? The question bored into my brain. It didn’t seem fair to ask him yet and I guessed he’d be more likely to lie now, in the immediate aftermath, eager to reassure us and be forgiven. I knew all that but I was so upset I wanted to shake him.

‘You promised,’ I heard myself saying, ‘that if you ever felt at risk…’

‘Mum, I got trolleyed,’ he said. ‘That’s all, honest. I’m sorry.’

The rest of the weekend I found myself watching Adam, looking for signs of deterioration: was he hanging around the kitchen so he wasn’t alone? Was he feeling anxious again? When he stayed at home all day Sunday, was that because he wanted to chill out after Friday’s scare or because he was too fearful to leave the house? I asked him if he wanted to see the GP but he shrugged a no. He gave the same response when I offered to contact the counsellor.

Once Sophie knew he was okay, she dealt with the situation by ignoring it: he wasn’t going to get any of her attention with his dumb behaviour. She had spent her life being frustrated by Adam, playing together and invariably falling out. Adam always pushed things too far, rebelled; he’d grow bored with whatever game they were playing and want to change the rules; he’d get distracted and start playing something else. Sophie would end up incandescent, in angry tears, vowing never to play with him again. Till next time.

His chaotic behaviour sucked up our attention while her diligence, hard work and successes won way too little recognition. Neil and I often talked of it, as things grew difficult in recent years: how to care for Adam without neglecting Sophie. He saw the same thing with some of the kids at school: that gap between achievement and recognition when another sibling is acting up.

We tried to talk to Sophie about it when Adam first saw the psychiatrist, to explain the situation and apologize for the upheaval, for our distraction, maybe our neglect.

‘It’s okay,’ she reassured us. ‘I’m fine.’

‘We love you, Sophie,’ Neil said.

‘I know, Dad. And I’m not a little kid any more. I can see that Adam needs your time.’ She was relentlessly self-reliant. But the truth was somewhat different.

One day I found her weeping in her room, face blurred with misery. ‘Sophie, what’s the matter? What’s wrong?’

‘I’m sick of it, sick of everything, and Adam and living here. It’s all so shitty,’ she cried, the words a snarl of hurt.

‘What’s happened?’

‘Your precious Adam happened. I know you love him more than me.’

My heart tore. ‘Sophie, that’s not true! I swear to you, I love you both. More than anything.’

She gave a shuddery sigh, sniffed and wiped her face. ‘I hate it, Mum. Why can’t he just be normal and stop messing everything up?’

‘Adam-’ I took a breath, meaning to try to answer but her question was rhetorical.

She went on, ‘They’re all talking about it at school. I’m not me any more, I’m just Adam Shelley’s saddo sister.’

‘Sophie, you are not a saddo. You’re a wonderful-’

‘Mum, don’t.’

Tears burned in my eyes. ‘Hug?’ I offered, my voice too squeaky by half.

She gave a little shrug, noncommittal. I moved in and wrapped my arms around her. Kept quiet. In a few moments she spoke: ‘When’s Dad back?’

‘Soon.’ Could he make it better? ‘I’ll tell him to come up and see you?’

‘Yeah.’

‘Okay. It won’t always be like this, you know. It’ll change. Everything changes.’

She nodded. ‘Yeah.’ A small voice.

‘You want anything? Hot chocolate?’

‘No, just tell Dad.’

‘I will.’

She always wanted her father. He was her rock. And now he’s gone. I have taken him from her.

Neil persuaded me not to hang around while he was in having the tests done. He wouldn’t get the results then, and most of the day he’d be sitting about waiting. He promised to call when he was done.

It was late afternoon when I picked him up. He didn’t say much about the day, just some quip about hospitals being no place for sick people. He had a little plaster on his arm where they’d taken the biopsy. They wanted him back in a week’s time for the results. ‘I’ll come with you,’ I said.

Did the days go fast or slow? They rippled, concertina-like, altering speed. The sooner the days passed, the sooner we would know.

That winter I was working on a refurbishment project for a health spa. They were building an extension and it was a good time to revamp their interior, which was looking jaded: Roman mosaics and friezes, pillars and arched doorways. I’d been playing around with something minimalist, using Japanese influences. Any materials would have to be high spec, to cope with the heavy traffic and, of course, the effects of steam and chlorine in the pools area, without looking industrial. Calm, comfortable and clean: these were the words I used with the client during my first presentation.

The day of Neil’s follow-up appointment I drove out to the spa, near Knutsford, for a meeting and spent the morning with the manager and the architect. It was frustrating: the manager was eager to shave off costs but not happy to compromise on quality, and the architect was dying to get away.

I tried not to get too sharp even though I felt the manager was wasting our time. At one point I suggested he redraw his budgets and give me a new figure to work to, if he was having second thoughts, which prompted the architect to complain about delays. The manager backtracked and blethered on. My husband might be dying, matey, I thought. I don’t give a flying fuck for your yardage problems. But I smiled thinly and did my job. After all, if Neil was dying, I’d need all the work I could get.

Of course, the proper jargon, as I learned on the Internet, is living with MND, not dying from it. Like AIDS. Adam had a T-shirt around that time, black and voluminous with a slogan in scratchy white lettering: ‘Life – a death sentence’. That soon got lost in the wash.

At the hospital, I saw Neil before he saw me in the waiting room (ghastly orange chairs designed to deaden the bum and weaken the spirit). He was reading, his head tilted to the side, legs stretched out, ankles crossed. Beautiful. If I hadn’t known him, I’d have thought the same: the shape of his face, his frame, dark hair, inherently attractive. I didn’t need to get close enough to smell his pheromones.

He sensed me watching, looked up and smiled, closed his book. Unhooked his ankles and sat up straighter. I reached him, sat beside him, unbuttoning my coat, unwrapping my scarf: I was hot after the frosty air outside.

‘They’re running late,’ he said.

‘Great – gives you a bit more time, then.’ I thought I’d gone too far but his eyes crinkled at the joke.

‘Good meeting?’ he asked.

‘Crap. He wants to cut corners without it showing. I told him we need to move forward by next week or he’ll lose the slot, another client waiting, bigger.’

‘Have you?’

‘Nope.’

‘Neil Draper,’ the nurse called.

The consultant, Mr Saddah, was a really nice man. He took his time, answered all our questions, even if most of the answers started off with it’s hard to say or it varies a great deal. He said eminently sensible things about support and resources and dealing with it as a family and how MND progressed.

His words streamed past me, lapping around me like channels of water carving the sand. I gripped Neil’s hand and tried to stop time.

The judge comes in and everybody stands. A wave of panic washes through me, blurring my vision. I blink hard. Jane is saying something to Adam. It’s lonely here, lonely and exposed. Did Martin think of coming and decide against it? If my dad had lived would he have come to show support? I’m glad my mum’s not still around, not here today, anyway. Because her reaction to all this, her eloquent unhappiness would give me more of a burden to carry. Happy birthday, Deborah. Happy bloody birthday.