Patience

by Victoria Scott

  ‘I want you to take a look at these brochures, sweetheart, and decide what you want to do,’ she said.

  Eliza was wringing her hands, refusing to look up. She didn’t take the brochures.

  ‘And what if my baby is disabled, too?’ she asked, still looking down. ‘How on earth will I manage then?’

  ‘Is it hereditary, what your sister has?’ the nurse asked.

  ‘Not usually. And I’ve had genetic screening, anyway,’ Eliza replied. ‘I don’t have it. But what if the baby has something else? There’s so much that can go wrong.’

  ‘The chances are that the baby will be fine,’ the nurse replied. ‘And even if it does have issues – there’s so much that can be done now. Lots of support.’

  Eliza looked up at her. ‘Not enough,’ she replied.

  The nurse gave her a sympathetic smile. ‘I can imagine,’ she said. ‘Look, if you decide that you want to terminate the pregnancy, you can call this number to make an appointment,’ she circled a number on one of the forms, ‘and then we’ll go from there.’

  As Eliza walked back down the corridor, clutching the brochures, she thought, not for the first time that day, about the other abortion clinic she’d been unable to avoid.

  *

  The roses her mum had brought her were red. As the sun came up through the ward windows, the petals were caught in its rays, projecting blotches of red onto the walls that looked like blood. She was the only girl on the ward with flowers, but other than that, they were all in it together, all guilty of the same sin. Fruit, ripening too early.

  Michael had sat next to her in Maths. Well, more correctly, he’d been placed next to her, as Mr Wilson had a thing about controlling seating arrangements. Up close, Michael (he was never, ever Mike) was intoxicating. He was tall, just over six foot, had deep brown hair which fell down over his face, and eyelashes that framed his eyes, which were little whirlpools of blue.

  When they’d met later that day beside the science block, away from the prying eyes of both teachers and other students, he’d asked her if she’d like to meet up with him out of school. In a burst of unguarded glee, she had agreed immediately.

  And so, in an Oxfordshire playing field as darkness approached, he had taken her hand and led her behind a tree, into an even darker corner by a hedge. Without preamble, he had lunged at her, her lower lip disappearing into his mouth like quicksand. There was frantic fumbling with buttons and zips, fingers ricocheting between her legs, a clashing of limbs and teeth, and then a transient, searing pain. From her bed of earth, Eliza had stared up at the dusky sky and blinked, disbelieving, watching a swarm of parched leaves fall in ever-decreasing circles, buffeted by the breeze.

  They had not told Daddy. That was her decision and she was glad of it. She didn’t want him knowing that she was such an idiot. Such a slag. He thought they were visiting Mum’s friend Serena in Brighton, enjoying walks on the beach, games in the arcades, ice cream on the pier. Far from it. Instead, she had endured wave after wave of pain and had had to give birth to the sixteen-week old foetus because they had said it was too far advanced to do it any other way.

  She did not look at it when it came out. She had been sitting on the toilet and the nurse had said, ‘Sweetheart, just sit forward for a moment’, and she had just pulled it out, without ceremony. The nurse had advised her not to look and she hadn’t. Privately, she believed that it had been a boy.

  They had left after breakfast the next morning and she had cradled those roses all the way home. They’d driven home to Kidlington together, her mother chattering away about everything she could think of, except the one thing Eliza wanted to discuss. ‘Look at those glorious leaves,’ she’d said as they drove past an avenue of trees in full autumnal bloom.

  Eliza, already absorbed by a grief she would never be able to fully describe, had simply looked at her mother in despair.

  *

  Eliza and her best friend were sitting outside a café on the South Bank, making the most of some rare spring sunshine. Katy ran her ring finger around the rim of her coffee cup.

  ‘Thanks for coming with me to the cake makers,’ said Katy. ‘I owe you one. I know weddings probably aren’t your favourite topic right now, but I really needed to face that woman head on, and having you by my side helped. I really didn’t want that fruit cake.’

  Eliza tuned out and stared into the distance, watching a tourist boat slowing before the bridge and beginning to turn.

  ‘Eliza? Liiiiiiieeezzaa? Earth to Lil?’

  ‘Oh, sorry, I’m just tired. Really tired.’

  Eliza saw that Katy was taking her in. She knew that her hair was greasy, her skin spotty, and that there were distinct dark rings around her eyes. She also looked thinner than ever. ‘You don’t look too good to be honest, hon.’

  ‘Cheers.’

  ‘I mean it. Are you sleeping OK? Are you eating?’

  ‘Barely.’

  ‘Barely to which?’

  ‘Both.’

  ‘Shit. Lize, you need to see someone about this. You’ve had a hell of a time recently, what with Ed leaving and your parents being at war and then dragging you into it. You need to see someone professional, not just me. Although I do love you, you know that.’

  ‘I know.’ Eliza took a large swig from her cappuccino and looked up at her friend. ‘And I will do, when things are clearer. There’s just been too much going on.’

  ‘I know. When’s the gene therapy starting, then?’

  ‘Next week.’

  Katy looked surprised.

  ‘Blimey, they’re not hanging around, are they?’

  ‘No. Oh, I really hope I made the right choice, Katy. The one Patience would have made.’

  Katy shifted her chair closer to Eliza and leaned in for a hug.

  ‘I’m sure you did, lovey. You went with your instincts. Don’t beat yourself up about it.’

  ‘Hmm.’ Eliza remained upright, resisting the embrace. She didn’t feel like human contact today, even from a human she genuinely loved.

  Katy released her and sat back in her chair.

  ‘Will you go? When they’re doing it, the trial?’ she said, picking up her coffee once more, apparently unfussed at her friend’s refusal to engage.

  ‘I don’t think so. Partly because I’m already in plenty of trouble at work, and partly because I already feel like I’ve betrayed Dad by signing her up for this thing. I don’t want to make it worse.’

  ‘They really have a lot to apologise for, your parents,’ said Katy.

  Eliza raised an eyebrow.

  ‘Why?’

  ‘Oh, come on, Lize, I’ve known you since you were tiny. I’ve seen the mind games your mum plays, the guilt trips, the martyrdom. I’ve seen how your dad absents himself rather than dealing with it. And I’ve seen you try, over and over, to fix things for them, to try to make them happy. But you can’t, lovey. Because it’s their mess.’

  Eliza sat in silence for a few seconds. There might be some truth in what her friend was saying, but frankly, she didn’t have the brain power to process it right now. There was something else even more pressing to deal with.

  ‘You know you just said you owed me a favour for the caterer visit?’ she asked Katy, draining what was left of her drink, putting her hand in her pocket to feel for the leaflet from the clinic. ‘Do you think you could pay me back by coming to an appointment with me?’

  24

  Patience

  March

  This is the night before everything changes. I’m tucked up in bed already, alone in the semi-darkness, watching the stars on the projector beside my bed form new galaxies on the ceiling. The projector was Jimmy’s idea; he suggested it to Mum when he last came here to do a shift and I love it.

  I’m in bed early because we’re apparently getting up before dawn. Mum told Serena this afternoon that she was going to set her alarm for 5 a.m. I don’t think we’re leaving that early, but it does take an age to get me ready in the morning, so I suppose
she’s working backwards from that. Preparing me so that we can leave the house is like trying to persuade twenty toddlers to get dressed by themselves. It’s an operation that takes patience, determination, coordination, and, crucially, lots of time.

  Mum’s saved on carers again tomorrow. She’s roped Serena into coming with us to the hospital instead. And don’t get me wrong, I have always liked her, but I do wish Jimmy was coming instead. I could do with something nice to look at while they’re slicing me up, or draining me of blood, or whatever it is they’re planning to do.

  It has been a breath of fresh air having Serena to stay, though. Quite literally – before she arrived, the house had begun to smell unpleasant. Now, it’s aerated and clean, full of nice-smelling candles. She’s been sending Mum to bed a lot too, which I think has helped. She needed a rest. She’s also been feeding both of us her tasty home-cooked meals, which I’ve really enjoyed. There are definite limits to the ready-meal range at the supermarket. Mum is also smelling and looking better, although there’s still no sign of Dad. Mum hasn’t spoken about him at all recently. In front of me, anyway. He must be due back soon though, I’d have thought. He’s been gone far too long this time. Surely he must be coming back for tomorrow? He’s never missed a hospital appointment before and this one sounds… meaty.

  I still have no real details about this procedure. My family seem to be literally tearing themselves apart over this, but no one has even thought to tell me what’s going to happen. Except for Eliza, of course. When she asked me what I thought, I cried, not because I really wanted it – I don’t know what it is they are really offering, after all – but simply because someone had actually asked me what I wanted. No one has ever done that before. So I shed a tear. And here we are.

  Apparently, this might make me ‘normal’. That idea sounds ludicrous even to me; how would an able-bodied person like Eliza cope with being imprisoned in my useless body? No miracle drug or whatever is going to be able to fix my bent spine or my wasted legs. And I wish I could tell them that I already understand; that I’m even able to read a bit. I don’t need medical treatment to help me with that. I’m already normal in that way. And also, what on earth does normal mean? Is anyone normal? I’ve seen the way that ‘normal’ people live their lives – heavens, I’ve done little else but watch people since I was born – and I don’t much like the look of the mess some of them make.

  In some senses, you see, my life is perfect. Of course I’d love to be able to communicate, to be able to feed myself, to be able to scratch that itch. I’d love to get out of bed for a pee right now, as I’m desperate, and it stings. I have wanted these things for my whole life. But to counter that, I have a lot of stuff I love: my music; my family; a never-ending cornucopia of carers; regular food; no bills; no money worries; my glorious internal world – and zero concern about cellulite.

  Over the years I’ve heard many doctors, carers, nurses and social workers debate whether I have a decent quality of life or not. So I’d like to state here, for the record, that I do. I don’t have anything to compare my life to, of course, but then, who does? There are lots of able-bodied adults who seem to live lives filled with anguish, disappointment, unhappiness. I’ve seen enough TV to know that. And when I’m not feeling ill or in pain, I’m pretty happy. If I have either of those, though, it is shit, I’m not going to lie. But then I’m guessing that sort of thing is also shit if you’re ‘normal’.

  I have a pain right now, as it happens. It’s down below. I’m not sure exactly where, but it’s like someone’s pressing down on my tummy, and I need to wee all the time, but not much comes out. That can’t be good, can it? It’s a bit like the pain I had last year, although that was duller and it went, eventually.

  I really must try to get to sleep. I have a trick to help me do this, especially if I’ve got any pain anywhere and I need distracting; I start to play Take That videos in my head. It takes me away from wherever I am, and I know them so well, I’m able to project myself into them. I’m in complete control of what happens, so I make sure I’m always gorgeous and sexy, and, obviously, also romantically involved with one of the boys behind the scenes.

  Look! I’m now on a beach somewhere exotic, wrapped in blue silk, inexplicably holding a mirror to reflect the sun. Ooh, and now I’m in a café which for some reason is entirely sepia, sashaying past dancers to get to the piano, where I bop demurely as Gary plays. Oh, and here I am, dressed like I’m going to a funeral, wearing a thin black veil, living in a house where it’s apparently snowing indoors and there’s a smashed chandelier on the floor, behind a snowdrift.

  That’s one of my favourites, by the way; I love Babe.

  The projector timer has clicked off. It’s dark in here now. My cue. Good night, my internal monologue-diary-imaginary-friend-type-thing. I do hope you’re still here tomorrow.

  PART THREE

  25

  Louise and Patience

  March

  It was an ordinary ward, full of ordinary patients, most of them over the age of sixty. Quite an extraordinary venue for something with the potential to change a life forever.

  Louise had been sitting on a very hard, very upright plastic chair for at least an hour, holding Patience’s hand. She was wedged between a hoist and a large canvas bag containing Patience’s clothes; she had packed several outfits for her but there was nowhere to hang any of it. Patience was awake but making no noise, and she seemed to have no interest in the offerings on the TV or on the iPad which Louise had brought to distract her. It was rare that Take That and Kylie provoked no response, but this seemed to be one of those times. It was as if she knew what was about to happen and she was taking this time to prepare herself for it.

  We’re on a ward chock-full of old ladies, all having hip replacements and whatnot. I’m the odd one out, the weirdo in the corner. I’ve seen them staring when Mum’s attention is directed elsewhere. That’s not often, mind you. She’s been almost entirely focussed on me for hours now. She keeps grabbing hold of my hand and squeezing it far too tight. She’s after a reaction from me, I think, something to reassure her that she’s doing the right thing. I have decided not to give her one. It’s a sort of protest. I have nothing else to give.

  Louise wondered whether Patience was just reacting to her own anxiety. She loosened her grip on Patience’s hand and watched as the capillaries in her skin responded to the release of pressure, large red angry fingers disappearing like ghosts.

  Thank God Mum’s let go! I thought she’d never stop. Perhaps she’ll go for a walk or get a coffee; then maybe I’ll turn my head and watch some TV. I’m bored. Really bored.

  Louise felt exposed, sitting there by herself. Pete wasn’t coming, of course, but Eliza wasn’t going to be with them, either. To Louise, this felt like an enormous betrayal. Not of her – of Patience. She had voted for it, after all, but her apparent continuing ambivalence towards it was baffling to her. It seemed unfathomable that someone could grow up with a sister like Patience and not want her to have the best of everything, the best chances. Eliza really could be incredibly selfish sometimes, she thought.

  At least Serena was here, which was amazing of her, given the memories hospitals held for her. It was in a ward similar to this that they had both held Patrick’s hands for the last time, surrounded by visiting relatives, clinking teacups and squeaking trolley wheels, the thin cotton bed-screen separating burgeoning grief from the everyday and mundane. Louise had seen Serena’s face alter when they’d walked in here earlier, but she had contained whatever emotion had threatened to boil over. She said she would go and buy them two coffees, and she had yet to return. Louise didn’t blame her for feeling the way she did, and she knew she’d be back when she felt ready.

  A member of the research team had been to see them earlier, a woman she knew only vaguely. She had been composed, overbearing, full of jargon. She’d shaken Louise’s hand, taken a few notes, explained what was about to happen, asked her to sign yet more forms, and then di
sappeared to talk to the nurses on the ward about the procedure that was to come. Philip had said he’d come to see them tomorrow, when it had been done. But for now, it was just the two of them, waiting.

  This stuck-up woman turned up earlier. She was talking about a lumbar puncture. What the fuck is one of those? I have no idea, but puncturing any part of my anatomy doesn’t sound brilliant, let’s be honest.

  Louise watched as the other patients went about their daily business, unaware that something utterly groundbreaking was about to take place amongst them. It was a women’s ward and a large number of them were elderly. There was a lady of about seventy-five at the end, in for a hip replacement. She had just had a cup of tea and a custard cream, delivered by an orderly pushing the tea trolley. He was currently at the second bed along, giving a hot drink to a much older woman with translucent skin and a whisper of hair on her head. Louise didn’t know what she was in for. On the other side, a family group – presumably husband, son and daughter-in-law – surrounded the bed of a woman perhaps in her late sixties. She was incredibly jaundiced, the colour of lemon rind, but still talking. And finally, there was a woman in her forties opposite them with a head full of highlighted curls and a face covered in carefully applied make-up, sitting bolt upright in bed reading a copy of Good Housekeeping. She had told Louise earlier, when they’d bumped into each other in the ladies’ loos, that she was in for a double mastectomy following a diagnosis of breast cancer. She was putting a brave face on her fear, just as Louise was.

  Voluntarily bringing Patience into a hospital when she was not actually ill was an act of madness, Louise reflected. She’d never have considered it, ordinarily. She might even catch something in here, a superbug maybe, that might kill her. Was she actually mad? In the depths of the night, unable to sleep and with Pete’s words at the Best Interests meeting riding roughshod on her conscience, she had thought she might be.