Patience

by Victoria Scott

  When I first started coming, I got lots of stares, but the locals are used to me by now and I barely warrant a pause in an engrossing game of cribbage these days. It smells of old beer in here, and chip fat. The carpet, a festival of colour from circa 1970, is dimpled with cigarette burns and decorated with old food stains, which makes me feel a lot better, because I’m a messy eater. Also, they make a very nice home-made lasagne which mushes up just enough for me to eat it safely.

  Serena is treating us to lunch. She announced this after she inspected the fridge this morning. Mum hasn’t been too good with food shopping since Christmas. Come to think of it, I’m not sure I’ve seen her eating much lately, either.

  Mum still has red eyes, but she’s stopped crying now. After breakfast they wheeled me back into my room and put my TV on so loudly I couldn’t make out what they were saying in the other room. There were raised voices, and there was definitely sobbing, along with occasional bursts of laughter. Their particular dynamic is something I will never understand. I do know, however, that their bond is deep, and that it has a lot to do with me and Patrick. Poor Patrick. He used to make me laugh. He was quite good-looking, too.

  ‘I’ve bought you a Diet Coke,’ Serena announces to Mum, before putting a pint glass filled to the brim with soft drink firmly on the table, and a small orange juice on the side for me. Then there is a silence between them which goes on for slightly too long.

  ‘I’m not an alcoholic, Serena,’ Mum says, in a tone just a shade harsher than a whisper.

  ‘Okaaayyyyyy,’ Serena draws that word out, her beautifully shaped eyebrows arching further as she does so. Then she lifts up her glass – is that sparkling water or gin and tonic? I can’t tell.

  ‘I’m not!’ says Mum, getting louder now. ‘And I know that addicts say that a lot, but I’m not. I’m just using it to get me through. Things have been impossible lately.’

  Serena is pursing her lips and rolling her tongue around her mouth. ‘Eliza told me that you were off your tits on Christmas Day.’

  She says this deadpan.

  ‘So that’s who you’ve been talking to.’ Mum exhales. ‘And keep your voice down. I don’t want anyone hearing.’ She is now speaking in a very loud whisper, which is probably more audible than her normal voice.

  ‘It’s deserted in here,’ says Serena, referring to the only other humans in the pub with us – two men over the age of seventy who are probably at least partially deaf anyway.

  ‘Never mind. I don’t want anyone around here getting more ideas. It’s a small town and they are already gossiping enough.’

  ‘Not about you drinking, surely?’ Serena takes another swig from her drink.

  ‘Shhhhhhhhh!’ says Mum.

  ‘Sorry,’ Serena is now whispering comically. It must be the gin. ‘Do you mean about Patience’s accident?’

  ‘Yes. Someone in the local shop asked me how she was recovering the other day. I hadn’t told anyone she was injured, so someone has blabbed. Probably one of the carers.’

  ‘They’re probably just worried about her.’

  ‘Hmm,’ says Mum, pretending to examine the menu I know she memorised years ago, for several minutes.

  ‘But, you know, to be honest,’ she says eventually, very quietly, ‘I think I’m not coping very well.’

  ‘Oh, Lou,’ Serena says. ‘I can see that, my lovely.’ She reaches across the table and rubs Mum’s arm. ‘I think you are in a sort of emotional storm. There’s too much going on, isn’t there? Sometimes it’s hard to see out. But I’m here now. I’m going to help you get through it.’

  ‘Thank you,’ Mum says, softening visibly, before adding, in a whisper, ‘I think I need it.’

  They smile at each other. They’re not huge grins, not by any means, but I think they are smiles that old friends give each other when something is tacitly understood.

  ‘Let’s change the subject to nicer things, shall we?’ says Mum. ‘How much have I told you about my new job? And about the trial?’

  ‘Not much. Your new job sounds exciting! Are you enjoying it?’

  ‘Oh, yes,’ says Mum. ‘I love it. I mean, I’ve had a bit of time off sick since – since Patience’s fall, but they are a great team. I feel so useful. And it’s so wonderful to be paid for the work you do, you know?’

  ‘That’s wonderful,’ says Serena. ‘And I do know! If only carers were paid what they were worth, eh? We’d be millionaires.’

  Mum laughs. ‘Yep,’ she says. ‘And money of course helps make ends meet, so that’s another weight off my mind.’

  Serena doesn’t reply to this, because I can see that she’s thinking about something else.

  ‘It’s great about the job, Lou. But this trial. It sounds a bit scary.’

  ‘Don’t tell me he’s got to you too.’

  Mum snatches a napkin from the table and lifts the glass of juice up to my mouth with some speed.

  ‘Who?’

  ‘Pete, of course. He read that stupid article and now he’s convinced that Philip is the devil incarnate. Shit!’

  Ouch, Mum, that was my teeth. And yes, that was a clean dress.

  I have most of a glass of orange juice in my lap. Mum is now mopping me up frantically, borrowing napkins from nearby tables.

  ‘No. I make up my own mind, Lou, you should know that by now.’

  ‘That may be,’ she replies, still intent on soaking up liquid ‘but you’re wrong on this one. I work for the man. I know the truth.’

  ‘Are you absolutely sure that it’s not just a truth you want to hear?’

  Mum stops mopping me up and glares at Serena. Oh crikey. Mum hates being challenged.

  ‘After all of these years, and all of the things we’ve been through together, you really have to ask me that?’

  I swivel my eyes left to right, taking in the fierce looks on both of their faces. I wouldn’t fancy my chances against either of them in a dark alley. While they assess each other, I can only hear the insistent tick of the aged clock above the inglenook fireplace, the chink of false teeth onto pint glasses at the bar, and the crackle and pop of the carbonated bubbles breaking the surface in Mum’s glass.

  ‘Lou, I love you,’ Serena says finally, breaking the silence. ‘You know that. I’m just worried for you. For you all.’

  ‘Well, you needn’t be,’ Mum snaps. ‘We’re fine. Patience and I are fine. This is Patience’s big chance to live a full and happy life.’

  Serena gets up so that she can go to place our order, and diffusing the tension as she does so, saying, ‘It just sounds extraordinary…’ She tails off, her tone of voice shifting down several gears.

  ‘Serena…’ Mum says, but Serena is already at the bar. When she returns a few minutes later, Mum looks chastened. ‘I’m sorry,’ she says, and she seems to mean it. ‘I should have thought.’

  ‘It’s OK, Lou. I’d be the same in your place.’ They both take sips from their drinks, and then Mum leans over and gives me some chocolate concrete from a plastic beaker she’s brought with her. There is no orange juice left.

  ‘Do you ever think about how it would have been, for both of us, if they hadn’t been disabled?’

  That’s what that was about. It was about Patrick. There were no miracle cures for him, poor guy.

  Serena is looking past my shoulder to the window, and beyond into the beer garden. I know from past experience that there are often children playing out there, their mothers sitting on the picnic benches sipping from cups of takeaway coffee which the entrepreneurial publican started selling a few years ago.

  ‘Yes. I do. Although I don’t think it’s particularly helpful, is it?’

  ‘Not helpful, no. But unavoidable.’

  Serena moves her gaze from the garden back into the room. ‘We’d both have had successful careers, wouldn’t we? And I might still be married. And we’d probably both be on the road towards having grandchildren now. Although, of course, you still are. How’s Eliza doing? Wedding planning coming on?’
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  ‘Honestly, I don’t know,’ Mum replies. ‘She’s dealing with it. You know how she is: fiercely independent. Our savings have paid for the deposit on the reception venue – that stately home we used to visit a lot – and the dress. That was a nice bit, the shopping, the looking at venues. It was lovely spending that time together, just her and me. But she and Ed have got the rest covered. I am pleased they’re finally getting married; Eliza’s wanted it for a long time.’

  ‘Has he improved at all? Ed? With age?’

  ‘Not much,’ replies Mum, wrinkling her nose, ‘but there’s no way we could tell her what we really think about him, is there? If we’d said that we think he’s a control freak, that he’s selfish – she’d probably have married him sooner, just to try to prove us wrong. We all need to make our own mistakes. She wouldn’t thank me. And anyway, I obviously made a mess of my own choice, didn’t I. So what do I know?’

  ‘If you say so, Lou,’ replies Serena, scowling at Mum.

  My lasagne arrives, steaming hot and looks delicious, but Mum asks the barman to bring a cold plate and sets about decanting it and cutting it up so it doesn’t burn my mouth. I am so hungry. I wish I didn’t always have to wait.

  ‘Anyhow, so that’s the wedding, but this gene therapy trial is going to happen before that, hopefully. It’s been given the go-ahead by the authorities and they’ve selected all of the participants now. We are very lucky that Patience is one of them.’

  ‘And that’s because you’re working for them?’

  ‘Partly, yes. But it’s also because Patience is the right age for it – they don’t want to start this trial with children.’

  ‘Is that because it’s so risky?’

  Mum decides this is the moment to start spooning my lunch into my mouth. It’s still slightly too hot.

  ‘It has risks, yes,’ she replies. ‘But it’s nothing to do with those allegations about Professor Larssen’s previous trial, you know. And all trials have risks. This one has a few they are looking out for.’

  ‘Like what?’ Serena asks this with a light tone, but her eyes are locked on Mum as she says it.

  ‘Well, probably the biggest is that there’s a risk that if they do fix the gene fault and things start happening, the expanding brain won’t fit…’

  Oh bloody hell.

  ‘… but this is just the first phase of the trial, so they will go in gently, only give a low dose. And anyway, there is surgery they can do to help.’

  I splutter in shock. Mum assumes I’m choking and starts to rub my back.

  ‘That’s quite a worry,’ Serena says. I can tell she’s trying to tread carefully. ‘But you still think it’s worth it? With all those risks?’ Serena is now tucking into her lunch, a Ploughman’s, which is pretty much the only vaguely healthy thing on the pub menu. Mum still hasn’t had a mouthful of hers. She’s too busy feeding me.

  ‘Wouldn’t you do anything you could to have Patrick back, living a normal life?’

  ‘Of course I would.’ Serena is now pretending to be fascinated by her food.

  ‘There you go. This is my chance to give Patience the life she should have had, if that bloody awful gene hadn’t gone haywire, wreaking havoc, destroying her brain and her body.’

  ‘At least her disability isn’t your fault.’ Serena has put her knife and fork down and I think there are signs of tears. She hardly ever cries.

  Poor Serena, she had no idea she was carrying the Duchenne gene.

  ‘I gave it to him. I didn’t know it but I gave my beautiful boy, the love of my life, a disease that killed him before he reached thirty.’ Serena was now drinking slowly, looking somewhere over my shoulder, out of focus.

  ‘You mustn’t think like that. Before we knew Rett syndrome was just a random fault, I used to think that it was something I’d carried without knowing it and passed on. Or I thought, maybe it was something I’d had to drink or eat when I was pregnant. I wasted those early years blaming myself, and I bloody wish I hadn’t.’

  I’ve never heard Mum say this before. I had no idea she ever blamed herself for the way I am. Oh, Mum.

  ‘It truly is amazing, what doctors reckon they can do to help, now,’ Serena says. ‘It’s as though they’re offering parents like us a chance to make amends.’

  ‘But it’s Not. Our. Fault.’

  ‘No, OK. But they are giving you a chance to change the future, aren’t they?’

  ‘Yes.’

  ‘In which case I’ll be here for you, Lou. For you and Patience.’

  From the sound of things, I think we’re going to need all the support we can get.

  22

  Pete

  February

  Traffic had ground to a halt on the M5 southbound carriageway and the windscreen of Pete’s hire car was becoming obscured by insistent snowflakes, each one larger, colder, firmer than the last. He had turned the wipers off because he’d been stationary for a few minutes now – there must be an accident ahead – and it was becoming harder to make out the lines between the lanes.

  He was going to be late. He reached for his mobile phone and sent a quick text to Lou to let her know. She’d be delighted, probably. If he didn’t manage to make it to the Best Interests meeting, who else was going to argue from Patience’s side? He still wasn’t sure what Eliza’s decision was; she had refused to share it. But what he did know was that all that stood between Patience and the lumbar puncture needle was this meeting and the panel that would vote on her fate.

  He also wasn’t sure of the points of view of the other participants of the meeting – her lead carer, her GP, her social worker – but he knew that Louise was a powerful speaker, a force to be reckoned with. Pete had always felt glad of this in the past; that aspect of looking after his daughter was not his forte. Now, however, he vehemently wished that it was.

  Best Interests meetings were strange affairs. It seemed ridiculous to him that being Patience’s parent simply wasn’t enough in the eyes of the law. Once she’d turned eighteen they’d been forced to make big decisions about her care by committee, because she wasn’t able to make decisions for herself. To him, Patience was an eternal child, and so this insistence on consulting with professionals seemed ludicrous to him, an appalling imposition on his parental rights.

  It was 9.37 a.m. Just over forty minutes to go before the meeting was scheduled to start. The car in front edged forward a few metres, so Pete put the car into gear and set off once more. Although he was maintaining a gentle pressure on the accelerator, his other foot was pushing hard against the floor, as if its impotent manoeuvres could force the traffic to part. If he missed this meeting, his Patience – his beautiful, innocent Patience – was done for.

  Every night throughout her younger years, he’d performed a ritual. He would pick her up, fresh from a bath, towel rub and nappy change, cradling her in his arms like a newborn, and place her in bed. Sometimes, after he’d pulled the duvet up under her chin, he would kiss her, stroke her sleek blonde hair and then kneel there, as if in prayer, although he had no faith to speak of. When she had fallen asleep, her face would relax, released at last from the pain she seemed to be experiencing daily, from the horror of whatever was going on in her brain. She had looked angelic, lying there like that. Normal, even.

  In the early years, he had hoped desperately that she might wake up cured, that everything that had gone before might be consigned to a passing nightmare. It had taken him years to give up that hope. The process had been a kind of mourning; he had gradually, painfully learned to relinquish all desire for her to be different, learned to accept her as she was.

  To help him get over his grief for a daughter he would never have, he had examined her closely, questioning every look and every movement, and had come to believe that she was happy – content, even. She had passed through hell and come out the other side, and the life she had been left with, although it was far from the life he had hoped for, was a good one. For a start, music gave her obvious joy. And when he hugged
her at bedtime now, she seemed to radiate calm. He believed she had found peace. And that, absolutely, was worth fighting for, he thought.

  The pace of the traffic was picking up and Pete could just make out the exit sign for his junction through the snow flurries. He indicated left and slid sideways into the nearside lane, driving up the exit to the roundabout at a crawl. It was 10.07 a.m. and he was just a couple of miles away now; he might just make it, but it depended on how the roads were from here. These were residential streets, and both sides of the road were lined with schoolchildren making the most of a snow day, building snow-men, snow-women and snow-dogs with wet mittens, wearing oversized hats and with the promise of hot chocolate before lunch.

  Now 10.18. A bus was resting, as if spreadeagled, across the road ahead. Only a tiny trickle of traffic was squeezing past it in single file, the overwhelmed driver standing by its bonnet trying to direct the traffic while speaking frantically into his phone, presumably summoning help. When he went back to his cab for a moment, traffic coming from the opposite direction surged forward into the gap and streamed through it, not giving any quarter to the opposing vehicles. Pete sighed loudly, pulled his car up onto the ice-encrusted pavement, and switched off the engine. He would have to walk from here. He retrieved a pair of thick gloves and his padded, down-filled coat from the back of the car and set off, pulling up his hood as he went.

  How far was it from here? Perhaps half a mile, give or take. As he marched on, he looked upwards at the millions of flakes falling from the heavens. Each single one unique, each one following its own path, buffeted by the winds, onto the ground below. And each one set for extinction when the earth warmed. He stuck out his tongue and let one fall onto it, feeling it begin to melt on contact. It tasted a little like the sea.

  He was almost there, but he’d need to run now if he wasn’t going to miss the first fifteen minutes. His shoes, solid black lace-ups selected for smartness, were not made for jogging through snow. The left one had begun to leak, freezing cold water seeping into his sock. He tried to keep up a steady pace, drawing on the hours he’d spent in the gym in an endless parade of hotels, filling his evenings and sleepless nights with some purpose.