Patience Page 7

  She had always made him laugh. That was one of the first things he’d noticed about her. They had laughed their way through financial crises, family crises and parenting crises, as only a couple genuinely, really in love, can. It had made the hardships they’d faced over the years more bearable. Even a few weeks ago, when Patience had been in hospital, they had found comfort in each other.

  Where had it all gone so wrong, so quickly, he wondered. Maybe it had been building for a long time and he hadn’t noticed. It didn’t help that he had taken yet another foreign contract, of course. He wasn’t around to absorb the daily worries with her, to gauge how she was feeling from one moment to the next. What had he missed?

  Maybe she was angry about his decision to take this latest expat posting? But she had always been supportive of his employment choices before. She knew he didn’t want to work for his brother, and she knew that the Middle East was where the money was. She understood that their future retirement relied on this contract. No, he didn’t think it was about that. And it couldn’t be the menopause, could it? She’d gone through that a decade ago. It had been awful for her, he knew that, but she had come out the other side some time ago and he was glad.

  Could it be Eliza getting engaged? Perhaps that had prompted her to reminisce, to regret that their married life hadn’t panned out the way they had both hoped. They had both planned to enjoy their children while they were young, to have family adventures, and then to wave them off into adulthood, enjoying their retirement together, alone.

  In reality, of course, their family adventures had largely been limited to long drives in their converted car, isolated picnics and days out to disability-friendly museums, and he was the only one of them to set foot on a plane in the past decade. He had not been able to offer her the life she had wanted, he knew that, and Patience, wonderful as she was, came with lifelong responsibilities.

  Could it be Patience that was bothering her so much? After all, judging by her behaviour last night, she was obsessed with this trial, this insane alchemy. But Patience was on a fairly even keel at the moment; aside from that seizure, she had been fairly stable for a long time now, and the carers who looked after her both at home and in the respite care place treated her well. They had a system going and it seemed to be working. And Louise was a coper. It was who she was.

  No. It must be about money, he thought. She was going to have to go out to work now, adding to her already considerable daily stresses and strains, just to bring in a few paltry quid. And he was entirely to blame for that, he knew.

  He leaned over then and kissed her softly, not wishing to wake her. He had not been able to do so last night, and it had felt wrong. Then he rolled over, and stood up as quietly as he could. His back ached, and he rubbed it. He decided to ignore it. It ached every day now, a sign that he was well past the age where physical labour came easily.

  He tiptoed down the stairs, hearing the bottom one squeak loudly as he did so. Shit, he thought; I really need to get around to fixing that. He decided that he’d do it later, when Lou was up. He had a little list of things he needed to sort around the house, actually, and he was determined to finally get around to them during this visit. Perhaps it would even cheer Lou up a bit.

  He headed towards the kitchen with breakfast in mind, but was distracted by the sight of the computer’s screen lighting up the study. Lou had still been down here when he’d fallen asleep last night, and she had obviously failed to shut it down when she’d finally made it to bed. He walked towards the computer and put all thoughts of coffee and toast out of his mind. She’d printed the information and application documents for that trial and they were sitting in a pile on the desk. He took a seat and began to read.

  He scanned the first page, which was an introduction to Professor Larssen and his team. The next page was an introduction to Rett and gene therapy. It explained in simple, layman’s terms what caused Rett syndrome – a mutation on a gene called MECP2. That gene, it said, made a protein which people need for the brain to function normally. Patience and those like her didn’t have enough of this protein, so their brains were severely damaged as a result. It sounded so straightforward when put like that, he thought. Almost comprehensible.

  And then it mentioned those damn mice. Everyone in the Rett community knew about those poor rodents. In 2007, researchers at Edinburgh University gave Rett syndrome to a few mice (lucky mice, he thought), and then replaced the protein they were missing. And instead of carrying on as their visibly disabled selves, they got better.

  This apparent miracle had fired up Rett families around the globe, each and every one of them desperate for a ‘cure’. He remembered Louise coming to him that day, tears in her eyes, summarising the news as if she was announcing the second coming, or Aston Villa winning the league.

  But instead of giving him hope, he had actually felt frightened. He still felt guilty about that instinctive reaction, because it was clearly so counter-intuitive. Why wouldn’t anyone want their disabled daughter ‘fixed’, after all? But the thing was, he didn’t see her as broken. He saw her as whole, as a person in her own right, her own special variety of normal.

  Things had gone quiet after that research had come out, and he’d been glad of that. Those researchers had suggested gene therapy as a possible avenue, but the technology was in its infancy then, seemed to be something only for the next generation, not for theirs. And he had come to terms with that, definitely. Patience was her own person. She was who she was. And he loved her for it.

  He turned over to the next page. Here, Larssen’s team explained how they planned to carry out the gene therapy, using a virus that they injected directly into the spine. Pete knew from personal experience – a lumbar puncture he’d needed due to a meningitis scare years ago – that this could be both painful and frightening. The lumbar puncture would happen in hospital, the guidance said, followed by a few days in a ward for observation. Then, if they seemed stable, nurses would keep an eye on trial participants when they got home.

  He turned over once more. This page was a list of possible side effects and risks. His throat tightened as he read it and he flipped frantically through several more pages of warnings and saw that Lou had already signed her section on the permissions page. So she had given them the go-ahead already, having read this. Who was this woman? What had she done with his wife?

  He stood up and marched out into the hall. There, he dug deep into the pocket of an old coat that was hanging on a hook, pulling out a packet of cigarettes and a battered yellow lighter. Then he walked past the dog, still asleep in her crate, to the back door. He unlocked it and strode out to the end of their garden, bashing the weeds underfoot. When he reached the wire fence that marked their boundary, he pulled a cigarette out of the pack and lit up, inhaling deeply. Lou thought he’d given up smoking a few years ago. In fact, he had given up, mostly. But at times of stress, he lapsed. Understandably, he thought.

  He surveyed the scene around him. Beyond the wire fence was the back of next door’s ageing concrete garage. All sorts of detritus had been shoved between that wall and the fence over the years: planks of wood; dead snails; old drink cans; rocks they’d dug up when trying to establish a flower bed. He turned around and noticed that their red swing frame, once Eliza’s greatest joy, was now covered in rust and leaning over at a worrying angle. It must have finally wrenched itself out of the concrete base, he thought. He had stood behind that thing through countless summers, pulling Eliza back as high as she could go before releasing her, addicted both to her screams of joy and repeated cries of, ‘More, Daddy! More! Higher!’

  After Eliza had outgrown it, they’d fixed a special seat onto it so that Patience could come outside and enjoy the garden, too. She had learned to push herself backwards and forwards with her own legs, an achievement he had felt incredibly proud of. When she’d first done it, he’d sat down on an old plastic chair opposite her for at least an hour, marvelling at her ability to propel herself, wiping away tears.
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  He turned around a little more and took in their dilapidated shed, which had been painted a jaunty shade of blue on one particularly optimistic spring day. It was now more grey than blue, and not a fashionable shade of grey by any means. Jesus, it needed condemning, he thought.

  Suddenly, he was seized by an idea. He was home and he was awake – and he had time to kill. This was a great opportunity, he decided, to get some of this sorted. This garden was full of junk, piles of dog poo and riddled with weeds. It was about time he took it to task.

  It felt as though someone had given him a shot of cocaine. He felt energised, determined, super-human. He threw his spent cigarette over the boundary to languish with the other detritus, opened the shed and began grabbing items from inside, chucking them over his shoulder one by one. They landed in a scatter-gun pattern over the patio and lawn. But no bother; most of them were destined for the tip, anyway, he thought. Then he grabbed a shovel and searched through the grass for piles of dog poo, lobbing them in the bin behind him as he went along.

  Then he hauled the mower from deep within the shed, filled it with some of the petrol that had been languishing in a can by the shed door and pulled the starter handle. He heard something turn over inside, but the engine remained silent. So he yanked it once more, and the engine flew into life, petrol fumes and dust rising in a cloud as it did so. It irritated his throat and he coughed, but it did not deter him. He dragged the mower back towards the edge of the lawn, took a deep breath, and set off. He heard the machine protesting as it was forced to ingest several months’ worth of grass, but he forged on, pushing it with all his strength, determined to finally take control of the garden, to take it on in battle, and win. Later, he’d have a go at the house, he thought. Today would be a day of getting things done.

  ‘What the bloody hell are you doing?’

  Pete was suddenly aware that he was not alone in the garden. Louise was standing next to him, wearing only her white cotton nightie and a pair of blue slippers.

  ‘Sorry!’ he shouted over the noise of the mower. ‘I can’t hear you properly.’

  ‘Just turn the bloody thing off!’ yelled Louise, right next to his ear.

  He leaned down with reluctance and turned the engine off. When the noise had faded, all he could hear was the gentle tweeting of birds, the barking of a dog in the distance, and the harsh breathing of his wife. She was glaring at him.

  ‘It’s five thirty in the morning,’ she said, in a voice that was a hybrid of a shout and a whisper. ‘What the bloody hell are you mowing for? You’ll wake all of the neighbours. We’ll get a letter from the council.’

  Pete looked around and saw the telltale twitching of several bedroom curtains in neighbouring houses. He took a deep breath.

  ‘As if that’s the worst of our problems,’ he said.

  ‘What do you mean?’

  Pete swallowed. ‘I read that document. I read that list of risks for the gene therapy trial. Did you actually read it? Did you?’

  ‘Of course I read it.’

  ‘Well then,’ he replied. ‘Are you OK with Patience getting cancer from it? Or an infection that she can’t fight? Or, you know, dying? That was on there, too.’

  ‘Lower your voice, Pete,’ said Louise. ‘Everyone on the street can hear you.’

  ‘I don’t care,’ he said, shaking with rage. ‘This is too important. You are risking her health and her life with this ridiculous trial. I will not stand for it!’

  Pete waited for Louise to react, either with violence, or shouting, or tears. But she didn’t. Instead, she turned around and walked calmly towards the house.

  ‘Where are you going?’

  ‘Inside. To get ready for work,’ she answered calmly, opening the back door. ‘It’s my first day today. Since I’m up already, I might as well leave early, and miss the traffic.’

  The door closed behind her and Pete was left standing alone in the garden, sweat pouring down his face. Or at least, he had thought it was. It took him a minute to realise it was tears.

  8

  Patience

  September

  ‘So I told him, absolutely not. No way was I going to do that.’

  ‘Too right.’

  ‘For a start, it would hurt.’

  ‘Yes!’

  ‘Honestly, some men are disgusting. No, make that all men are disgusting!’

  ‘Did you tell him about Kevin?’

  ‘No, there’s nothing to tell, is there? Except for, you know, that thing that happened round the back of Aldi…’

  I always wish I could ask questions during these conversations. Like, who the flip is Kevin? And why on earth did you let him do anything to you behind a budget supermarket? Have some standards, ladies! Demand Waitrose at least.

  You see, it isn’t just music that forms the soundtrack of my daily life. Given my ghostly status, I get to overhear all kinds of great stuff, like that conversation between Magda and Jane as they changed my bed. They are outrageous, that pair.

  Given that I can’t talk, overheard conversations and noises shape my day. Right now, for example, I can hear clattering dishes in the kitchen; the postman leaving parcels outside the front door; Rosie, one of my fellow respite care inmates, yelling in the bathroom. She despises having her hair washed.

  The downside of being great at listening, however, is that I also have to hear Mum and Dad arguing. They bicker pretty much constantly when he’s home nowadays, mostly about the day-to-day minutiae of my needs and how they fit in (or, let’s face it, don’t fit in) with their daily needs. Mum definitely believes Dad doesn’t do enough to help. His frequent absences for work make her resentful and she has high expectations when he returns. In fact, I think they’re so high, it’s not actually possible for him to meet them.

  And of course, I also hear things that I’m not supposed to hear.

  Secrets.

  I know all of Eliza’s secrets because she has told me. I’m the vessel she keeps them in. And Mum, bless her, I don’t think she has any secrets; she has no time for intrigue. But Dad – he’s a closeted sort, you know. He keeps his cards close to his chest usually. He’s let his guard down only once in my hearing.

  Mum went away on a weekend break for carers a few months ago, run by a charity. Dad had invited his brother Steve around to our house for company while she was away. Dad and Steve’s childhood was tough, I think, and whenever they meet, it’s like a pressure cooker letting off steam – they give each other permission to vent. They were sharing a twelve-pack of beer in the lounge, watching football, talking loudly over it. They were so loud, in fact, that I could hear them clearly in my bedroom down the hall. And what I heard Dad say, well, I’m guessing he doesn’t want Mum to know.

  I am worried about it, mostly because I don’t think they have ever kept secrets that big from each other before. They really only deal in little white lies, like hiding presents they’ve bought from each other, or not mentioning that the other has got a bit fat, or those bottles Mum has started secreting in the understairs cupboard. But this is in an entirely different league.

  I’m supposed to be napping right now, but I’m not tired. So instead, I’m lying on my back examining the ceiling. There isn’t much else to do in this position, is there? One of the carers recently stuck a few Take That posters up there, so I have something to look at when I’m in bed here, a bit like they do for people at the dentist who need distracting from the cavity they’re filling. These posters are a small joy, so I’m here, in the present, examining them. I count them left to right – one, Gary, two, Robbie, three, Mark, four, Jason, and finally, five, my current favourite, Howard. This poster is very out of date, of course. Not only is there no Robbie any more – except for their reunion tour, of course, I’ve got that DVD somewhere – there is also no Jason. His departure was a bit of a shocker. I found out about it from the This Morning presenters, Phil and Holly, who were chatting about it on TV. I was being given a drink at the time and I almost choked, prompting a q
uick whack on the back and a precautionary visit from the doctor.

  I sobbed when Take That announced that they were breaking up in 1996. Partly because they wouldn’t be making more music, of course, but also because I’d just heard that I was actually set to meet them, in real life. It was supposed to be a surprise, but of course, everybody talks about me in front of me, don’t they? Eliza had written to the Take That fan club about me (that’s sisterly love for you – that must have hurt) and the lads had decided that I was worthy of a personal meeting. I remember so well the flurry of excitement, a jostling to decide who would come with me to my little audience. Even Eliza expressed interest. And then they announced that they were splitting up, didn’t they? And our meet up, my once-in-a-lifetime opportunity to actually dribble on Howard Donald, was cancelled. I was distraught.

  Not that the band ever really broke up in our house, mind you. That old VHS just kept on rolling, replaced with a DVD version eventually and replenished with eBay finds when scratches made the earlier versions untenable. I am a cinch to buy for every birthday and Christmas. In my bedroom, you see, those three middle-aged men I saw perform at the O2 are still a group of five, all smooth-skinned and skinny, sleeping with groupies in hotel rooms and being re-dressed and redesigned by stylists daily, like dolls.

  Here’s Beth. I like her. She has purple hair and tattoos.

  ‘Patience, welcome back! I hear you’ve been a very ill girl! So nice to have you back with us for a break. We were so worried about you. Now, let me see… What would you like to do? Watch a DVD? Now where is that Muppet one you like – oh, I’m sorry lovely, Magda was supposed to reorganise them all back into their boxes, wasn’t she? She’s got man trouble, I think. We’ll look in a bit. Now – when did we last take you to the toilet? Was it lunchtime? Crikey, best get on with it then, hadn’t we?’ And Beth’s caring monologue continues, brightly, breezily, without pause, because she will never get a response.