Patience

by Victoria Scott

  He peered at her over his reading glasses. Then he cracked a smile. ‘You must forgive the disorganisation and my sparse conversation with you on the phone this morning,’ he continued. ‘But there it is. That’s why I’m so interested in having you here. Largely, to help me sort out this mess,’ he waved his hands in the direction of the overflowing piles of files, ‘and then to help me do something quite exciting.’

  ‘What is it that you want me to help you to do?’ she asked, her tone softer and more polite.

  ‘It’s the parents, and their children. We’ve been developing a therapy which may help people with Rett syndrome, like your daughter. We’ve had promising results in animal trials and we’re now preparing to move to the human testing phase. We’re looking to recruit families for them and we need – I need – someone who is better at communication than I am to help me do it. And someone who understands a bit about medicine. And Rett.’

  ‘What sort of therapy? Is it a new drug?’ she asked, pulling herself up in her chair.

  ‘Oh no, my dear, no. This is gene therapy. We’ve tried it on mice so far and it appears to completely reverse the syndrome.’ Suddenly, everything was in sharp focus. Louise was aware of the individual leaves on the trees outside the window, the sound of phones ringing far down the corridor, the layers of dust on the desk.

  ‘Reverse it? Completely?’

  ‘Evidence so far suggests that, but it’s too early to say with certainty, of course. We need to try it on humans now,’ he said, seemingly oblivious to Louise’s astonishment.

  ‘H-how do you do it? How does it work?’ asked Louise, struggling to get the words out, feeling like she was straining for air.

  ‘We inject them with a virus which carries a healthy copy of the gene that’s faulty, and causes it to rectify itself.’

  ‘Just like that? So you’d just inject this into someone who has Rett syndrome and they’d get better? Be completely normal?’

  ‘That’s the tricky bit,’ he said, pulling up his glasses and rubbing his eyes. ‘We don’t know. We obviously observed physical changes in the mice, but how that effect will transfer into humans, we cannot tell. Other genes we haven’t yet discovered could yet be at play. So it might simply ameliorate their symptoms, but still leave them severely disabled. Or it could just do nothing. This is just phase one. At this stage we will mostly be testing the dose and checking for side effects.’ The professor paused to sip his tea. He baulked and put his cup down. Perhaps it was cold. ‘Ideally, of course, we’d get to Rett sufferers before they show signs of the disorder in childhood, but as you know, the disability is not screened for yet as part of amniocentesis.’ Louise noticed that he appeared to be doodling star shapes on his own notes.

  She’d often wished she could revisit Patience’s first months and freeze time, so that she’d never find out what was to come. What if it had been possible then to test her and treat her, so that she could have developed normally? The idea was so glorious that it made her angry that this was now even a possibility, however remote. Patience had lived with this hideous disease for thirty years. Louise had been forced to watch her blonde-haired angel descend into paralysis and silence, slowly, painfully, inexorably. What if she’d never had to? And more than that, what if someone could make it all stop, even now?

  ‘So the volunteers you want for the trials, I assume you’ll want them young, then?’ she said, drawing on her (failed) attempts to secure Patience a place on numerous drug trials.

  ‘Actually, we can’t do the trial on children. It wouldn’t be ethical. So we are looking for adults, this time. We actually need a wide age range for the trial to be as encompassing as possible, Mrs Willow.’

  ‘Louise. My name is Louise.’

  ‘Louise. There’s another thing I must mention. If you take this job, I can give your daughter a place on the trial, providing, that is, that she meets the criteria. If you want her to do it, of course. It doesn’t come without risk.’

  Louise did not hesitate.

  ‘I’ll take the job,’ she said.

  6

  Eliza

  August

  ‘When you chose that backdrop for the photos, didn’t it even bloody occur to you that it might look bloody ridiculous?’ The fire-breathing dragon – her boss, Jenny, who was five years her junior and absolutely gloried in it – was in full swing. ‘I mean, could you not see that the juxtaposition of a no-entry sign and a cactus next to the company managing director at the launch of a new industrial lubricant might be a bit, you know – unfortunate?’

  Eliza wanted to laugh, but swallowed hard instead. This made her splutter, generating a noise which sounded more jovial than she had intended.

  ‘We’ll probably lose the account, Eliza, and I am fucking fed up to the back teeth with your lack of attention to detail. Your head’s in the fucking clouds. It’s not bloody screwed on.’ Jenny liked to swear, but she was also quite posh, and the combination was often unintentionally funny. ‘Come and see me tomorrow morning, first thing. I need time to think about this.’

  Eliza didn’t hang around after that pronouncement, in case she started up again. She grabbed the coat from the back of her chair, clasped her phone to her chest, muttered something about missing her train, and left. Once safely outside the office, she felt the first tears of frustration and embarrassment begin to fall. She ducked into the toilet and locked the cubicle door. When she could be certain that no one could see her, she let the metaphorical taps open and cried with abandon, gulping for air, before hammering so hard on her legs that she left angry scarlet marks on her thighs.

  She really, really needed to stop crying, she thought. This was ridiculous. She was thirty-bloody-six years old. Time to grow up and get a grip. No man, and no job, was worth this. Other people her age were married, raising kids, paying off a mortgage, climbing up the career ladder. Meanwhile, she barely managed to pay her rent each month and her chances of marriage and kids now looked about as likely as finding a reasonably priced house in Clapham. She had wasted so many years, hadn’t she? All those years waiting for Ed to propose had been a complete and utter waste of time. She had clung on like a fangirl to her idol, desperately hoping that her dreams would eventually come true. It was humiliating, frankly.

  When the waves of sobs had subsided, she listened carefully to check no one was outside before walking to the sinks and gingerly checking out her appearance. It wasn’t good. She had layered on mascara that morning in an attempt to look more alive. Now she looked like a goth who’d stood for far too long at a bus stop in the rain. The manufacturers of her apparently waterproof mascara should be sued. She was fishing around in her gargantuan handbag for tissues and moisturiser to try to remove the gunk when her phone beeped. It was a message from Katy.

  Wench, where the devil are you? I’ve got a bottle in front of me all to myself, and I look like a wino.

  ‘Shit,’ she said, out loud. She’d forgotten she was supposed to be meeting Katy after work. Her encounter with the dragon and her post-Ed hangover, which so far was worse than anything booze had ever managed to impose on her, had removed her so far from reality that she couldn’t even remember her evening plans. Bugger! Eliza grabbed a tissue, tidied up as much of her make-up as she could, and dashed out of the door. She typed a hurried reply to Katy, apologising, as she ran down the stairs.

  She emerged into a beautiful late summer’s evening. All around her as she walked, weary London workers were pouring out of their offices at the end of a long, mind-numbing day, longing to peel off damp, shiny suits and agonising heels and kick back for the evening with a pint and an attitude. The street smelt of chips laced with vinegar and mayo, sweating gin and tonic and the sweet sadness of accidentally dropped ice cream from Luigi’s Gelato Emporium, which was just down the street. Above the buildings nearby, the Shard loomed large, reflecting the sunshine.

  Eliza’s love affair with London had begun long ago. Her parents had taken her on a rare weekend away without Patience when
she was eleven, their destination of choice the capital. It had been booked to celebrate her mum and dad’s wedding anniversary, but to Eliza – the recipient of her parents’ undiluted attention for forty-eight hours – it had surely been all about her. Even the train journey had seemed tinted with magic. It had been February, and there had been a light snowstorm followed by a frost across most of the Midlands and South-East. Frozen fallow fields, punctuated by mighty oaks, ice-encrusted wooden fences and large red-brick farmhouses had quickly given way to an urban landscape of graffiti-strewn bridges and tunnels, forgotten canals and trundling tube trains; for Eliza, it had been love at first sight. The sheer volume of people around her, all seemingly experiencing lives of infinite possibilities, filled her with excitement and hope. And as the train pulled up into a dirty, fume-filled Paddington station, she decided that London would eventually become her home. Here, she could become whoever she wanted to be.

  And that was why she had applied for a place at King’s College, right in the centre of the action, to study English. Which meant that she had unwittingly started herself on a trajectory which would end with Ed dumping her just after they’d finally got engaged. If she hadn’t gone to that university, had instead chosen the convenient, red-brick campus of, say, Birmingham, she might have met a bloke called… Jake; studying, oh, maybe geography, and together they might have settled down, produced two globe-trotting children and studied maps together, or whatever it was that geography graduates did. But instead, it had been London and Ed, and there was absolutely nothing she could do about that now.

  After employing what Eliza called her ‘London walk’, which was, in reality, more of a jog, she finally arrived at the wine bar which Katy had appointed for that evening’s meet-up. She winced at the sign outside, which invited customers to enjoy ‘it’s beer garden’. It was hard, she felt, to take businesses seriously when they couldn’t even use an apostrophe properly.

  Shrugging off her distaste for grammatical inaccuracy, Eliza walked into the bar. Its windows were all open onto the street, but once she entered she realised that their ventilation efforts were in vain – it was bloody boiling in there. Katy was sitting in a booth near the window, tapping on her phone, her black, glossy hair reflected in the chrome pendant lamp above her head. A bottle of white wine and two glasses – one half full – were on the table. Eliza smiled broadly at her as she leaned in for a kiss, hoping that her earlier brief make-up fix was convincing.

  ‘Blimey, love, you look awful.’

  So it hadn’t worked, then.

  ‘Cheers, that really makes me feel better,’ Eliza replied, smiling, despite everything. Then she let herself be hugged – and this caused the tears to fall once more.

  ‘It’s been pretty shit, then?’ Katy said, after she released Eliza and fetched another tissue from her own bag for her to use. ‘All sorts of shit? Or just Ed shit?’

  ‘All sorts of shit,’ Eliza answered, sniffing.

  ‘Work? Patience? Your parents?’

  ‘Every bit of that. Mostly Ed, I suppose, but then I made a huge, hammering error at work today for which I’m going to pay dearly.’

  ‘Is your boss still a witch?’

  ‘Yes, I think she’ll be eligible for a broomstick upgrade soon. She’s next level,’ said Eliza.

  ‘That company seems like a pretty shit place to work, if you ask me,’ said Katy, taking a slurp of wine, her right eyebrow raised. ‘Toxic. Do you regret leaving NewHome? They seemed nice.’

  ‘Hmm,’ replied Eliza, pouring herself a glass of wine. She thought back to the small homelessness charity in Brixton where she’d cut her PR teeth. She’d been a one-woman band in a tiny office with no aircon and a smelly fridge, but she’d loved the stories she’d placed in the media, and the characters she’d worked with. If only they’d paid more, she thought, she could have stayed. But she and Ed had been wanting to buy their own place, and she had needed a better salary. And he had encouraged her to move to a corporate environment, because he said it would be more ‘stable’. More fool her, she thought. All that effort for a future that never materialised.

  ‘And how is Patience now, after the accident?’ asked Katy, changing the subject, to Eliza’s relief.

  ‘Better. Back at home with Mum, epilepsy – if she’s even got it at all – under control, it seems. But Mum’s stretched to the limit, as ever. She was close to exhaustion for a bit there, trying and failing to sleep in the hospital, refusing to let any of the carers come and do a shift.’ Eliza leaned over and accepted another tissue from Katy’s bag.

  ‘Won’t even consider letting her go in for extra respite care either, hey? Sounds about right. Have you been home to check up on her?’

  Katy had known Eliza since primary school, and had been a regular visitor to the Willow family home throughout their childhood. And that meant that she knew, without Eliza having to explain, all about her family’s complicated dynamic. She understood how her mum functioned – or often, didn’t function – and how Dad fitted into the mix. She also knew how Eliza felt about Patience. All of it, even the jealousy and resentment she’d felt on really bad days, as a teen. She was deeply ashamed she’d ever felt that way, and so it was a relief to her that only her best friend really knew about it. Katy never brought it up explicitly, however; she just had a way of acknowledging it silently and dismissing it at the same time, and Eliza loved that. It was wonderful to feel heard, forgiven and understood. And mostly, it was just a relief not to have to go through it all again. It had been hard enough to deal with the first time.

  Katy had also been Eliza’s flatmate for two years before deciding to move in with her boyfriend – now fiancé – Matt. Matt and Ed knew each other, but had not become friends; it was something that had always bothered Eliza. Eliza saw Katy reach for her own engagement ring and begin spinning it. Eliza moved her own hands onto her lap.

  ‘Not yet. I haven’t felt right, since Ed – but I will.’ Eliza winced internally as she spoke. In truth, she felt incredibly guilty about not going home to help, but heaven knows, she had a full-time job and an emotional mess of her own to deal with. It wouldn’t be fair to burden her mother with it, on top of everything else. ‘But you’re on the money re respite care,’ she continued. ‘She resists it as much as possible, even though she’s knackered. But Patience has been staying at Morton Lodge a bit more since she was discharged from hospital. Dad is trying to encourage her to do it.’

  Katy gave her a sympathetic smile. ‘So your dad’s still working away, then?’

  ‘Yes. They still need the money, I think, not that they talk to me about it. They never seem to have enough cash. I think Dad wants to retire soon. So they need the tax-free salary.’

  ‘I see,’ Katy replied. ‘How do they feel about the wedding being off?’

  Eliza took a large gulp from her wine glass. ‘They don’t know. I haven’t told them yet.’

  ‘You haven’t? But it’s been a month!’ Katy made an incredulous face.

  ‘I know, I know! It’s ridiculous. But I haven’t found the right time. Mum and Dad were so caught up with Patience and then Dad flew back to Qatar and I came back to work – and well, I don’t want to tell them on the phone.’

  Eliza had decided not to tell her the real reason, which was that she was determined to win Ed back. This was just a blip. Pre-wedding nerves. They were meant to be together, she just knew it, and she was sure he would come back with his tail between his legs, very soon. And then she wouldn’t have to tell her mother anything about it. It would be like nothing had ever happened. They could all carry on as before.

  ‘Hang on a sec!’ Katy’s eyes flew down and settled on Eliza’s left hand, which was now lifting up her glass. ‘You’re still wearing your ring!’

  Eliza blanched, put her wine down and put her hand back on her lap. Damn it, she thought; I should have remembered to take it off before coming out.

  ‘And you’ve had loads of weekends free – you could have driven to see your mum to
tell her then.’

  ‘I don’t have weekends free. I have a gym class on Saturday morning and I’m finally getting good at hot yoga,’ said Eliza, trying to deflect the question.

  Katy snorted.

  ‘Oh, come on, Lize. The last time you went to the gym, you fell off the running machine and twisted your ankle.’

  Eliza eyed her friend. Katy always knew when she was lying. ‘Yes, well, I could have gone home, I suppose,’ she said. ‘But I didn’t want to. As I said, I haven’t really been myself.’

  Eliza pictured the scene: her mother in floods of tears, a visible demonstration of her devastation at the cancellation of the wedding; and, of course, the deposit they would lose. Their wedding had been the one ray of sunshine her mother had had to look forward to and it had tangibly improved her mood. Also, there would be no grandchildren now, would there? Talk about a double whammy. Eliza knew that Louise really wanted to be a grandma and Patience could obviously never manage that one, could she? It was up to Eliza to provide the next generation, and she’d blown it.

  ‘Don’t want to? Why? Come on, Lize, this is insane.’

  ‘I don’t want to give her something else to be upset about,’ she said. That, at least, was the truth, she thought. ‘Mum needs this wedding. You know how she is; she thinks Patience is going to die at any moment. It’s the only thing that’s keeping her going.’

  The two friends eyed each other. ‘Eliza, you have a wedding booked for next summer. I’m getting married too, so I know how enormous an undertaking it is. If you are going to get any money back on it at all, you need to cancel it, now. Does Ed know that you haven’t cancelled it?’