Patience

by Victoria Scott

  ‘Second major problem – and wait for it, this is worse – I’m pregnant, and it’s his. Ed’s.’

  Now this is justification indeed for her crazy drive to see me here.

  ‘I’ll have to tell Mum and Dad, won’t I? I mean, about the wedding. I think I’ll be able to keep schtum about the pregnancy and deal with that myself. But the wedding – I’ll have to tell them because there’s so much to unravel. But Patience, you know as well as I do that they will be so disappointed. Mum has been planning this since I was little, and she knows it will be her only chance to do the wedding thing. No offence, lovey.’

  I am not offended, of course. We both know that I will never get married or have children, and we also both know that our parents have offloaded all of their dreams for both of us onto her, the poor thing. I don’t envy her, I really don’t. I think she used to resent me a bit when we were both living at home, and I can understand why. My caring needs and stalled development meant that she was simultaneously ignored and overloaded with expectations, and that’s a really, really shitty combination.

  ‘This is not the perfect life they have always wanted me to have, is it? And I can’t go home tonight anyway, because I’ve told them I’m sick, and I can’t stay in the flat, because the loneliness is glaring at me from the bare walls from where he removed his bloody pictures, and the cupboards from where he took his bloody cups, and I am just so bloody angry. And lost. And scared…’

  We lie there for a bit, her stroking my arms gently, while she snuffles. Her breathing becomes a bit calmer. She moves a little further over so that she doesn’t squash me, lifts up the duvet and lies down on her side.

  ‘So, I’m staying here,’ she announces. ‘With you.’ And just like that, we are children again, and she’s climbed into bed with me to tell me stories. I feel her warm breath on my neck and instantly feel relaxed. And in a tried and tested procedure, honed throughout our intertwined lives, we both fall asleep.

  *

  ‘Good morning, Patience! Rise and shine! Happy Christmas!’

  He comes over to pull back my duvet.

  ‘Oh, Jeeeeesussss. Sorry. I didn’t know you were there.’

  Ah, Jimmy. At last!

  ‘Oh fuck, sorry, I’m not supposed to be here, am I?’

  Eliza has sat up in bed. Luckily she’s fully clothed, but her hair now looks lopsided and she has the imprint of one of my buttons on her cheek. Jimmy looks like he has absolutely no idea what to say. But he still looks gorgeous. He always looks gorgeous.

  ‘I should explain – I’m… I’m… Eliza. Patience’s… sister.’

  Crikey, love, I can’t believe it took you so long to remember your own name.

  She is shuffling to the end of the bed now, but it’s an effort to get out, because my bed guard is in the way and she doesn’t want to leap over it and worry him even more. She looks red in the face as she tries to swing her leg over it to dismount.

  Jimmy looks baffled.

  ‘I came here late last night, you see. To see Patience, for Christmas, you know, and then I must have just… fallen asleep. They must have forgotten I was here… So sorry. What a mess. I must look a mess, I mean. So sorry.’

  She’s gabbling. She doesn’t usually gabble.

  Eliza has now managed to get one leg onto the floor and is now lifting her other leg over the guard at an incredibly awkward angle. She looks as though she’s practising an obscure martial art. When she finally gets it on the floor, she brushes herself down and walks over to my sink to check her face in the mirror. She does not like what she sees and, to be honest, I agree with her. It’s not her best look. She tries to wipe the dribble away from around her mouth with my face towel.

  ‘Anyhow. Thanks for waking me nice and early,’ she says, turning around. ‘I’ll definitely make Mum and Dad’s in time for breakfast if I go now! Great! Nice to meet you, by the way. What’s your name? I’m Eliza. Oh, sorry, I’ve already said that.’

  ‘I’m Jimmy.’

  ‘Great! Lovely. OK then, Jimmy. I’ll see you again? So sorry.’ And there she goes, out of the door as quickly as she came in. ‘See you later, Patience,’ she calls, as an afterthought.

  When she’s gone, Jimmy exhales deeply before coming over to me once more to begin the morning routine.

  ‘Blimey, P,’ he says. He calls me P now. I like P. ‘She’s a bit mad, isn’t she? I can see you’re the saner sister.’

  I enjoy this statement a lot more than I really should.

  15

  Pete

  Christmas Day

  Pete had a crick in his neck. He also had cramp in his right leg, which had spent the night braced against the filing cabinet which was squeezed in between the extremely narrow single bed he was lying on and the wall. He knew that the cabinet contained document after document about Patience: her care, her medical history, their regular fights for access to therapies and funding. It was a solid, tangible testament to the hours his wife spent working, for free, for the benefit of their second daughter.

  He was in their smallest bedroom, the one they laughably referred to as ‘the spare’. It used to be Eliza’s, plastered with posters, alive with angry music broadcast at high volume, dusty as hell and smelling of a mixture of Anais Anais perfume and hairspray. Since she moved out, though, it had become a dumping ground, home to family files, unused sports equipment and random detritus destined for the charity shop. The posters were long gone, but you could still see the remains of Blu-Tack on the walls.

  Poor Eliza, this bedroom was tiny, barely big enough for a bed – that’s why they’d bought such a small one, he supposed – and a little desk. Having said that, he remembered her look of rapturous joy when they’d told her she could have it all to herself. She had told them she kept being woken up by Patience at night and had had enough of early wake-up calls accompanied by nursery rhymes.

  It was incredible to think now that there had actually been a time when Patience had slept in a normal bed. A bunk bed, actually, beneath Eliza, in a room down the hall decorated with Laura Ashley print and a large border on the walls embellished with wildflowers and trees.

  They’d lived in a false sense of security during her younger years, he knew that. Back then, Patience had been light enough to carry, she’d still fitted into children’s nappies, and she could stand and put one foot in front of the other if they supported her. They had even taken her on holidays abroad, and people hadn’t even stared that much.

  But as she grew bigger, every day became a struggle, both a financial and a physical one. They’d realised that something had to give when they could no longer carry her up the stairs. He had even taken to going to the gym to build up his strength, but when Patience was eight and weighing in at thirty-five kilos, they had finally admitted defeat.

  For a while, they’d put a bed in their front room for her and washed her with a flannel. It had been grim, unsustainable. They were told they were eligible for a grant from the council to fund work to build a downstairs bedroom and shower room, but it hadn’t been enough to cover it all, and the work had cost far more than it should because they’d had to do it so quickly. So, they’d remortgaged to borrow more. It had hurt. Interest rates were high.

  He had increased his hours to bring in more money, working as a safety officer on commercial building sites during the week, and at the weekend, did extra work on-site on other projects, sometimes bricklaying, sometimes roofing – whatever was needed. He’d only come home to sleep. Eventually, he’d bitten the bullet and applied for contracts overseas, which paid well but took him away for months at a time. And despite the fact that they’d desperately needed that adaptation, he knew that when Patience had moved into that room, a part of her childhood had died. In his mind, that was the dividing line. There was a time before, and a time after. In the time after, he was an absent father, an occasional visitor to the family home and nothing more. The provider. And not even a good one.

  He leaned over the side of the bed and locat
ed his phone, which was lying on the grey, threadbare carpet. He really must get that replaced at some point, he thought; it was depressing. One more thing to add to his to-do list. He flicked the cover off the phone. It was 7 a.m. – time to get up. Patience wouldn’t arrive for hours, and Eliza was poorly and wasn’t coming, but he still knew he’d need to get up and show willing. Louise’s energy was extraordinary, always, and she really had no time for people who didn’t manage to keep up. She would have expectations for today and he would have to meet them, despite their ongoing row.

  She had taken the news about Eliza’s lurgy badly. She’d spent the past two days baking, decorating and cleaning in a frenzy, anticipating a family reunion akin to the ending of Charles Dickens’ A Christmas Carol. It didn’t seem to matter that she must know, rationally, that this was an unattainable goal; she kept on striving towards it, every year. It was a sort of voluntary blindness.

  He swung his legs over the side of the bed, wincing as his body came to terms with being upright. Age had certainly withered him; his body, strong and athletic, the product of thousands of hours in hotel gyms around the world, was starting to refuse to cooperate and this new reality depressed him.

  He stood up, stretched, and padded to the bathroom across the hall, where he had a welcome pee and retrieved his dressing gown from the hook behind the door. It had his name on it, etched in blue thread across the back, a gift from Louise for a birthday a decade ago or more.

  As he made his way downstairs, he could hear that Louise was, as he had anticipated, already up and at it. She was wearing an oversized blue fleece dressing gown and an ugly pair of pink slippers which had been a free gift from the company that made Patience’s incontinence pads. The cupboards were being discharged of their bounty; the oven pressed into action. Classic FM was on, and playing a steady diet of carols interspersed by Bach’s Christmas Oratorio. In previous years, he’d have crept up on her stealthily before springing himself upon her with full force, delivering a huge bear hug, followed by a kiss. There would have been laughter, an offer of a cup of coffee, a wink.

  But not today. Today, he walked into the kitchen and was greeted by the invisible curtain that had been pulled between them since he had flown in two days ago. His continuing refusal, as she saw it, to cooperate over the trial had apparently been the final straw for her, an unconscionable betrayal of not only her, but their daughter. He had tried to explain why he felt the way he did. After his initial reaction, which had come straight from his gut, he’d made a particular effort to read up on the topic, so that he could understand where she was coming from. The problem was, he had hated what he had found.

  Where she saw boundless hope in the experiment which had apparently reversed the damaging effects of the faulty Rett syndrome gene in adult mice, he saw absolute danger. He’d digested the fact that nine out of the seventeen mice that had apparently been ‘cured’ had died soon afterwards, most likely before their time. He knew that Patience’s head, and therefore her brain, was smaller than normal, and that she might need brain surgery if it started to grow as a result of treatment.

  He’d made these points to Louise, slowly and deliberately, several times, but it seemed to him that she had simply refused to hear him. She must have been completely brainwashed by the doctor she was working for, Professor Larssen. He clearly needed her to be there, and was prepared to tell her what she wanted to hear. Pete suspected that he had recruited her to give his trial credibility in the eyes of prospective families, to give it a softer edge, to make it less about statistics and more about humanity.

  Anyway, they were now set for a full-scale battle over it, it seemed. The ‘Best Interests’ meeting was in the diary and all the stakeholders in Patience’s life were preparing to decide, boardroom style, what was best for her.

  He wished, not for the first time, that he could ask Patience what she thought. Would she really want to submit herself to possible pain and suffering, to further possible operations, to an uncertain future? She seemed content, to him. She seemed happier and more settled than she’d been in years.

  Louise had now moved into the utility room, where she was polishing a silver platter with vigour. He took the opportunity to walk into the kitchen and put the kettle on. He’d make his own coffee today.

  He was plunging the filter on their cafetière when the doorbell rang. They weren’t expecting Patience and her carer until about midday – so who on earth was it? He went to answer it, noting that Louise appeared to be feigning deafness.

  It was Eliza. She looked tired, as if she’d been rubbing her eyes; most of her mascara seemed to have transferred to her cheeks and her hair was all over the place. Suddenly he saw her as sixteen again, incredibly grumpy after being forced to wake up for school, after a late night caused by angst-ridden phone calls and lots of pining while listening to Oasis. He had loved her then, despite it all, and he loved her now, too.

  ‘I thought you weren’t coming!’ he said, opening his arms wide for a hug.

  ‘I know,’ she said, folding herself into him. ‘But it was a false alarm. I was only sick once. And I couldn’t miss Christmas Day, could I? So I set off as soon as I woke up.’ Pete let her go and stood aside so that she could move into the hall.

  ‘You must have left early. I haven’t even had breakfast,’ he added, as they moved down the hallway. ‘Where’s Ed?’

  ‘Oh, he came down with the bug in the early hours,’ she replied. ‘I thought it best to leave him to it.’

  ‘Yes. Lou! Lou!’ Pete called out, not actually caring where Ed was, or that he was currently vomiting his guts up. It was such an effort to pretend to like him.

  ‘Guess who it is, Lou!’ he shouted once more.

  Louise came running, a bit like she used to do when he arrived home after a long time away.

  ‘Darling! Oh, my darling, you’re here! Are you OK? Crikey, you look tired. And thin! Do you want to go to bed?’ She was looking at Eliza with great concern, sweeping the hair off her face and examining her in great detail, as if she was six, not thirty-six.

  ‘Actually, Mum, that’s not such a bad idea.’

  There was a brief pause. Pete knew what the issue was; Louise was wondering where to put her. She couldn’t have her old room, because he was in it, and Louise wouldn’t want her to know that they were in separate rooms. She also couldn’t sleep in Patience’s room, in case she passed on whatever virus she had to her, and she couldn’t sleep in the other bedroom upstairs because it was now Louise’s office. An office that was more of a war room, really.

  ‘You can have our room,’ she said, a few seconds later. ‘The bed’s made up and I only changed the sheets yesterday. Head up there and I’ll get you a hot water bottle. Go on. Don’t worry. We won’t be having lunch for ages. And presents can wait.’

  Pete watched Eliza obey immediately, succumbing to the reassuring, loving control that Louise had always exercised over their household.

  As she went upstairs, Louise gave instructions for him to follow in her absence. The oven needed to go on; the dishwasher needed emptying; Tess needed to be let out; and could he also empty the bin? Pete understood that his wife was not intending to tell Eliza that they had been arguing. They had always tried to keep any disagreements from her, as if finding out that they occasionally argued would damage her life’s foundation.

  At this very moment, however, he did not have the energy to maintain the facade. He made no reply. Instead, he stomped on the lever which opened the bin, grasped the liner within, tied it at the top and lifted it out, before walking to the back door, finding his outdoor shoes, and pressing the handle down with extraordinary relief.

  It felt good to be outside. He could detect a faint scent of burning wood in the air, almost like incense. It had recently rained and their garden looked dank and uninviting, its beauty sleeping, waiting for someone, perhaps a handsome prince, to awaken it in the spring. Pete walked round to the side passage to their wheelie bin and placed the bag inside. Then he
reached swiftly inside his top pocket and removed a cigarette. He had still officially given up, but only when he was home.

  Qatar was a different matter. He was surrounded by smokers there. The locals smoked openly indoors and out, and the labourers on his sites bartered with cigarettes. They were almost a language out there, cigarettes, and it had eventually become easier to speak that language than not. He flicked the lighter open, lit one and inhaled quickly and deeply, moving further down the side passage so that neither he nor his smoke could be seen.

  Pete had been smoking when he had proposed to Louise, he remembered. They’d both been at a fireworks evening at the local cricket club. She hadn’t even looked surprised when he’d asked; she had just smiled at him, and they had kissed as Catherine wheels and rockets were set off in front of them and bonfire toffee circulated in parcels of wax paper. It was a kiss that had tasted sweet, smoky and full of promise.

  Within six months, they were married at a grim-looking church near his mum’s home in Birmingham, with a reception at the pub down the road. It had been a small do, nothing grand, but they had loved each other so much, it hadn’t seemed to matter. His beloved mum had already been ill then and she had had no money to put towards it, even if she had been well.

  Louise had just qualified as a nurse when they were married, and when Pete found a job through old friends in Birmingham, she’d found a job at Birmingham Children’s Hospital. They had rented a small flat above the local laundrette while they both worked to save a deposit for their first house. There had been no central heating and they had kept a money box beside the bath, each putting a coin in it before turning the taps on each night.

  He remembered how she’d reacted, the first time he’d taken her to see the flat he’d found for them to live in. The cramped, damp one-bedroom flat was a far cry from the comfortable rural vicarage she’d grown up in – he was more than aware of that and she knew it. But instead of reacting in horror, she’d taken his hand, laughed, and asked if he could pop out to buy some rubber gloves. She had started work straight away, turning that fleapit into a home.