Patience

by Victoria Scott

  Eliza sat down next to her mother, who gave her an encouraging smile.

  ‘Yes, she did,’ she said. ‘I’m here to find out more about the trial?’

  ‘Yes. And then, as a consultee for your sister, to give permission – if you want to,’ he replied. ‘Now Louise. I’m sorry, my dear, but would you mind leaving us alone while we do this? As you’re involved in the trial, you shouldn’t really be here.’

  Louise stood up and looked slightly flustered, as if she’d been caught shoplifting.

  ‘Yes, of course,’ she said. ‘Shall I come back in half an hour?’

  ‘Yes, that’ll be long enough.’

  As soon as Louise had disappeared through the door, he set about rifling through the papers on his desk.

  ‘It must be here somewhere. I made sure I had a copy ready. Now, where is it…?’ He lifted up a mug and a browned apple core. ‘Here it is.’

  Professor Larssen handed her a glossy brochure, which was now embellished with a circle of coffee on the front cover.

  ‘This is the literature we’ve produced. Your role, as I’m sure you know, is to make a decision about taking part in the trial on your sister’s behalf, because she lacks the capacity to do so herself. The Best Interests meeting will obviously rubber stamp it, but we’re certain that your backing will swing it for us.’

  Eliza began to flick through the leaflet, which was illustrated with beautiful photos of people who all looked a lot like Patience.

  ‘You’ll find more detail in there, but to save us both time, here’s the executive summary, as it were. We are set to carry out phase one of a trial to see if gene therapy for Rett syndrome can be successful in humans. The disease has apparently been reversed in mice. We are uncertain if that will happen with humans, but we are going to run this trial to see. As it’s phase one, we will be starting slowly, with a low dose, so the effects may not be dramatic. But there is also risk. Please turn to page six.’

  Eliza did as he asked.

  ‘These are some of the risks we’ve identified,’ he said. ‘It’s quite a long list, a frightening list, I know. Take some time to look at it, if you like.’

  Eliza examined the list, her breath becoming increasingly shallow as she read each entry.

  Confusion

  Autonomic disturbance

  Raised intracranial pressure

  Anxiety

  Seizures

  Depression

  Death

  ‘Death? That’s one hell of a risk.’

  ‘It’s impossible to predict how any trial like this will go,’ he said. ‘We have to consider all possibilities. But please be reassured that we are going to take every precaution with this – we are not going in like a bull in a china shop. We have high ethical standards.’

  Eliza nodded automatically, although she had not meant to. She was struggling to take it in.

  ‘Yes – about that. I read the article, in the paper. About your previous trial,’ she said, her eyes focussed and her back straight. She had to let him know that she wasn’t a pushover.

  ‘Ah, yes. Do you have questions?’

  Eliza pulled herself up, and took a deep breath.

  ‘Plenty. It sounded murky. You must know that. But Mum seems pretty certain that you’re legit. Are you? Who’s sponsoring this trial? And why have you got Mum involved?’

  ‘This trial is being sponsored by an American Rett syndrome charity. They are doing the trial here because our regulations are a little more relaxed. But I promise we have no Russian backing. It’s not some sort of “big pharma” conspiracy. We just want to find out whether we can do something amazing.’

  ‘And the other trial? The one with the Russian backers?’

  ‘I am confident that we will be cleared of any wrongdoing. It’s all a storm in a teacup. Complicated bureaucracy, and whatnot. Be assured that our standards of care and assessment of that trial were as fastidious as they always are for all our trials. And as far as your mother is concerned, well, Louise has looked into that and is reassured. And in terms of her role, she is helping me, as you know, to talk to parents of Rett people. That’s all.’

  ‘Mum…’ Eliza said, looking up from the document, signalling that she had finished reading the list. ‘Mum really wants Patience to do this, doesn’t she?’

  ‘Yes. But this isn’t about Louise,’ he said. ‘This is about Patience. And you are her advocate in this. You have to consider how she might feel.’

  ‘And that’s the huge problem with this, isn’t it? Patience can’t speak. We have never spoken. How am I meant to know what she feels?’

  ‘You have grown up with her; you almost certainly know her better than anyone else. Your mother and father excepted, of course.’

  Eliza thought about the secrets she had shared with Patience, the tears she had shed on her shoulder, the knowing looks that had passed between them over three decades. And then she thought about that tear in Patience’s eye the last time she’d seen her. It might have been nothing – an allergy, an irritation, pure fluke – or maybe, just maybe, it was something else. She had felt, in that moment, that Patience was telling her to sign her up, to give her a chance.

  And what about those hands that she had always wished could play cards with her? That voice she had always wanted to sing a duet with? Those legs she had always wanted to dance by her side on nights out? This was not only Patience’s big chance – this was hers, too, her opportunity to get to know the sibling she had spent her whole life with, but didn’t even know.

  And if Patience was better, her mum and dad would be free – and she would also be free. Because Patience could make her parents happy, when she had failed.

  Surely that was worth the risk.

  Or was it?

  20

  Louise

  February

  It was a grey morning of steely skies and the air was pregnant with water, possibly hail if it grew colder still. The building she had just parked in front of was the day’s perfect partner. Built in the 1960s, its concrete-clad Brutalist style, once considered honest and raw, now simply appeared bleak. Its gutters were failing. Along its flat frontage, water had poured over the top of the downpipes, leaving long streaks, like tears.

  Louise walked through the glass-fronted entrance and spoke to the receptionist, who pointed her in the direction of a small anteroom, where she was to wait. There were two other people in there already, sitting opposite each other, both fixated on their phones, scrolling through social media posts as if they had just emerged from an internet blackout. Louise took them in; a man, mid-thirties, bearded, wearing trainers, jeans, a Superdry jacket, a rugged jumper. Opposite him, a woman, also mid-thirties. She was dressed for the office, her highlighted hair in a tight bun on top of her head, smart black trousers, an olive-green shirt, a grey jacket, a neck scarf. Her feet were squeezed into vertiginous pointed heels. It was incredible to think that they had, most likely, once stood opposite each other in a public hall or place of worship and promised to devote themselves to each other for the rest of their lives. Right now, it looked as if they could barely tolerate breathing the same air.

  ‘Mrs Willow?’

  A man had appeared at the doorway.

  ‘Yes,’ she replied. ‘I’m sorry, my husband hasn’t arrived yet.’

  ‘That’s fine. We can get settled and wait for him to join us. Is he on his way?’

  Louise wanted to reply that she had absolutely no idea. They had not corresponded properly for weeks.

  ‘Yes,’ she said, her voice artificially light. ‘Should be here any minute.’

  She followed the man down a lino-clad passageway into a small room which was simply furnished with a standard lamp, three chairs, a small table and a plant, which Louise judged to be fake. There wasn’t enough natural light in here to promote life. The man gestured towards one of the chairs, and invited her to take a seat. There was an overwhelming smell of artificial perfume, which Louise noticed was coming from a plug-in diffuser b
ehind the lamp.

  ‘Before we get going properly,’ the man began, ‘I need to introduce myself. I’m Nathan, one of the counsellors here.’

  ‘Nice to meet you,’ replied Louise, automatically. It wasn’t nice to meet him at all, in fact. It wasn’t at all nice to be here.

  ‘Can you confirm for me your reason for coming here?’

  ‘We’ve separated,’ Louise said. ‘Temporarily.’ She looked down at her feet. ‘I hope.’

  The door opened.

  ‘So sorry I’m late,’ said Pete.

  ‘No worries,’ chirped Nathan, in a sing-song tone reminiscent of a primary school teacher. ‘Take a seat over here.’

  Pete clearly hadn’t made an effort to dress up. He was wearing grey trainers which had once been white, baggy old jeans and a faded sweatshirt which she recognised as one he wore to do DIY. He didn’t look like he’d shaved, either. Eyes cast down, he sat next to her on the other of the two low, cushioned, armless seats. That act – sitting down next to her – had been replicated thousands of times in their forty years together, a simple demonstration of mutual support and intimacy. Her arm almost reached out as a reflex to take hold of his hand, but she stopped herself; his proximity now only served to exacerbate the gulf between them.

  ‘OK, let’s begin,’ said Nathan, looking at them with a neutral expression that Louise suspected he practised in the mirror. ‘Which of you would like to start?’

  ‘You go first, Lou,’ said Pete, acknowledging her presence for the first time.

  Louise cleared her throat, which felt constricted. ‘Right,’ she began. ‘Well, we’re here because Pete and I are… estranged. I mean, we’ve often lived apart for periods of time – he works overseas a lot – but he’s moved out of our house here now.’

  ‘Would you say that you have reached a crisis point?’ asked Nathan.

  ‘Of course,’ she replied, her eyes widening. ‘Isn’t that obvious?’

  ‘Not everyone who comes here is in crisis,’ replied Nathan.

  ‘Can I say something at this point?’ asked Pete, looking at Louise as he did so. ‘To be fair, me moving out is the symptom. It’s not the cause, is it?’

  ‘No, that’s right,’ said Nathan. ‘Can you expand on what you feel is the cause?’

  ‘I think it’s crept up on us gradually,’ said Pete. ‘I mean, the crisis is new, but we haven’t been in a good place for a good few months.’

  ‘And why do you think things have come to a head?’ Nathan asked.

  ‘It’s all this gene therapy crap,’ replied Pete, almost spitting out the final word.

  ‘It’s not crap, Pete!’ Louise leaned forward in her seat, knuckles clenched.

  Nathan held his hands up as if signalling a truce.

  ‘Let’s go back. Can you tell me what you are so angry about, Pete?’

  ‘Lou has got it into her head that our disabled daughter is going to be perfectly normal for the first time in her life – will do a Lazarus on us and just dance off into the sunset – if she takes part in an experimental gene therapy trial,’ Pete replied, his voice raised and slightly hoarse. ‘The first human trial in the UK. The very first – and therefore the most dangerous.’

  ‘It’s not dangerous, Pete. They are going to do it safely!’

  ‘She wants to put our beautiful daughter through something that might kill her or hurt her, chasing an impossible dream. And it’s being run by a charlatan who’s being investigated for malpractice!’

  ‘All of the regulations have been met, and the NHS is sanctioning this trial. Pete is very wrong on this.’

  ‘I just feel, you know, like Patience is Patience. She was never supposed to be different, or normal, whatever that is. But she,’ he glared at Louise, ‘wants to put her through something awful, just for a dream!’

  ‘Those allegations against Philip are false. Completely false.’

  ‘And now she’s got our other daughter – our healthy daughter – involved, and she’s been manipulating her, too. And as for Philip…’

  ‘Let’s rewind a bit,’ Nathan said. ‘Often, relationships reach crisis point due to a lack of communication. How do you feel you’ve been communicating recently, Louise?’

  ‘Well, we haven’t been, have we?’ she snapped. ‘He’s stopped replying to my emails and messages and now he’s moved out, he’s just refusing to engage at all.’

  ‘It’s always one-way with you, though, isn’t it, Lou? Even when we lived together, you never took my point of view on board.’

  Louise threw herself back into her seat and crossed her arms.

  ‘Well, thank you very much. How can you even say that? I have always consulted you on everything to do with Patience. Even in the last few years, when you have almost never been home. And it goes both ways, doesn’t it? All the time, you’ve refused to consult me about our finances, you won’t even tell me how big your pension pot is, like it’s nothing to do with me…’

  ‘… and the perfect example, this gene therapy. You signed her up without even asking me.’

  ‘… it’s like you’re hoarding money, getting ready to run. Are you? Have you stashed it somewhere?’

  Nathan held out his arms.

  ‘Right. Let’s focus on that,’ he said. ‘What’s your view on the family finances, Pete? Why aren’t you involving Louise?’

  Pete took a sip from his cup.

  ‘I just don’t want to worry her, that’s all,’ he replied. ‘I have it in hand.’

  ‘Do you?’ said Louise. ‘Then why do I have an overdraft?’

  Pete looked horrified. ‘Do you? Oh, Lou, I’m sorry, I had no idea. I’ll do a few extra shifts. I’ll have some more money with you by the end of the week.’

  Nathan looked at Louise, inviting her to respond. She appeared mollified. ‘OK, that would be helpful. But I’d still like you to tell me where we stand.’

  Nathan switched his focus to Pete.

  ‘Could you do that, Pete?’

  Pete was rubbing his forehead.

  ‘OK,’ he mumbled. ‘I’ll come round soon and we can talk about it.’

  Louise thought this to be very unlikely, but Nathan seemed satisfied. ‘Let’s talk about the gene therapy now, the apparent cause of your crisis. Can you explain what your thinking on that is, Louise?’

  ‘Ridiculous. He’s being ridiculous,’ she replied, pointing a finger at Pete. ‘Accusing me of manipulating our daughter. Eliza has her own mind.’

  ‘Your other daughter aside – can you explain to Pete why you believe it’s the right thing to do?’ asked Nathan.

  ‘I just cannot understand how he can consider passing up the biggest chance Patience has ever had for a better life,’ she replied, dropping her arms onto her lap. ‘She might be able to walk afterwards. She might be able to use her hands for something other than useless wringing. She might even be able to talk. How can he not want this?’

  ‘How can you want to do this to Patience?’ Pete was now looking straight at her. ‘Put her through all this, when she’s already been through so much? Why can’t you just accept who she is and get on with things, as we’ve always done?’

  ‘Perhaps you don’t see it, Pete, as you’re hardly around, but she’s in pain a lot of the time. She’s uncomfortable, she spends day after day just staring at walls and watching TV. She’s not living. I want to give her a chance to live.’

  Louise paused and took a sip of water, before taking a deep breath. ‘And “we”? We’ve always done?’ she continued. ‘You’ve only been around about a quarter of the time at most. It’s me who’s been stuck at home holding the proverbial baby, washing her, feeding her, dressing her, nursing her when she’s sick. And I’ve done it all because I love her. I’d do anything for her.’

  ‘And I am working so that you can do that!’

  Pete poured himself another cup of water from the jug on the table and sat back in his chair, sipping it, focusing on the cup and the floor and not Louise.

  ‘That’s intere
sting, Louise, what you said about being stuck,’ interjected Nathan. ‘That’s very negative language.’

  ‘Yes, because I am stuck. Completely. I was supposed to go back to work after Patience started school. That was always the plan. But I couldn’t, could I? Someone had to be around. And so that person was me. And now I have nothing else. No career, no social life, and Jesus, I have only one friend. One. And I met her in a hospital.’

  ‘Do you really think my world is so much better?’ said Pete, coming back to life. ‘I spend it out in the blazing sun and dust in whichever Gulf country I’ve managed to find a contract in, living out of a suitcase, coming home every evening to a crappy hotel room which looks just like all of the others. I live for those days when I get to come home. To you. And to Patience and Eliza. Every job I’ve ever done has been so that you could all live somewhere reasonable, so that you didn’t have to work.’

  ‘Reasonable? Good God, our house is falling apart, Pete. And it’s in a dingy street near the bypass. It’s hardly a palace.’

  ‘If you wanted a palace, Lou, you shouldn’t have married me!’ The colour was rising in Pete’s cheeks. ‘You knew who I was, where I came from and what sort of life we’d have when you met me – and if I remember correctly, you said you didn’t mind that I couldn’t give you the life your father had. In fact, you said you were delighted that it wasn’t going to be the life your father had given you. And you know that I was never going to be a middle-class Oxfordshire boy. I’m a working-class Birmingham lad. And proud.’

  ‘Please get that chip off your shoulder,’ Louise replied. ‘It doesn’t suit you.’

  ‘I have a chip? Really? How about you look at yourself? Does it all come down to the fact that I’m not good enough for you, and so you’re not going to pay any attention to how I feel about anything? When I think about all the work I’ve done to try to give you the life I thought you wanted – and now you’re throwing it back in my face. I can’t fucking believe it, to be honest.’

  ‘Let’s all calm down,’ said Nathan. ‘And try not to swear. It’s not helpful.’