Authors: Cath Staincliffe
Sophie was born in the shadow of my mother’s death and the clamour of Adam’s toddlerhood. Either she was born self-contained or she immediately adopted that as a strategy in the face
of the competition. As long as she was fed and her nappy was clean, she would watch everything around her with steady interest.
There were times when I felt ripples of guilt that she got so little attention and I would engineer it so Neil could take Adam off somewhere, leaving Sophie and me to ourselves. I would lie down
on the floor with her and sing and play. She’d give a gummy smile and gurgle or make little shrieks as she flailed her fists about, but I got the sense that she was just playing along. That
it didn’t matter to her whether I was giving her my undivided attention or not. That she’d have been exactly the same with a babysitter or Grandma Veronica.
When I tried to explain this to Neil, he gave me an indulgent smile. ‘She’s a baby! She’s just a different character from Adam, thank God. You’re used to him, the way he
has us running round in circles. She’s the second child.’
‘Like me. But they’re usually more difficult. What if she turns out to be some wilting feeble, Barbie doll, all inept and fluffy?’ I speculated.
‘By way of rebellion, you mean? I think that’s pretty unlikely,’ Neil said.
And he was right. She’s a little solemn but she’s bright and articulate and ferociously independent. As soon as she could dress herself she chose her own clothes. As a four-year-old
on holiday she always picked a seat away from us on the coach or bus, quite happy savouring the view.
She made friends at playgroup and nursery but not with the passionate attachment that Adam brought to his alliances. She did well academically and was reading by the time she reached Reception.
She seemed to soak it all up effortlessly, while Adam became mute and mutinous if we tried to get him near a book. We had countless meetings with his teachers about his lack of progress.
My girl thrived and I was buoyed by her success and always felt the lifting of my heart, that lightening sensation, when I clapped eyes on her, but I knew she loved her father more than me. Or
perhaps her love for him was less complicated. I understand. I made the same differentiation in my feelings for my own parents. My love for my father was visceral, unsullied, simple, direct. But
the emotions my mother called up in me were contrary, critical, double-edged. I hated her at times but never my father. Did Sophie learn these patterns from me, or discover them for herself? If
Adam had been any different would it have changed the dynamics? Sophie thinks I love Adam best. I don’t. I just love him differently. Is it because he’s a boy? Or because he’s
Adam?
None of that differentiation was going to happen when I had children. Boy or girl, they would be treated equally. No gender-based toys or colour-coded outfits, no breastfeeding a boy for longer
or over-protecting a girl when she headed for the climbing frame. Any girls I had would be tomboys like me, any boys sensitive and caring. Of course, there’s another side to the equation that
I hadn’t factored in – Adam and Sophie as individuals with personalities and predilections fully formed.
I miss them so. And how much harder must it be for them? Losing Neil and then, before they can get their breath back, I’m gone too. Locked up. It was never meant to be
like this. I rage at Neil, floating around in the bloody ether. Well out of it. You’re off in your Elysian Fields, mate, but look at us. See where we are? You sacrificed us all. You sorry
now?
I
t 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.’