Patience

by Victoria Scott

  ‘It sounds to me, Lou, like this is more about you than it is about Patience.’

  ‘How dare you!’ said Louise, relinquishing the washing-up and turning towards Pete, who was now getting milk out of the fridge and pouring it into the mugs of steaming tea. ‘How dare you suggest that I’m being selfish. I haven’t had time to think about myself for decades.’

  ‘Lou, I’m not saying that. I’m sorry. You know I didn’t mean that.’ Pete took the teabags out of the tea and dropped them in the bin. He presented one of the mugs to Louise, who took it, muttering an automatic thank you. She checked her watch once more.

  ‘You’re not listening to me properly,’ said Louise. ‘My interest in this trial is about Patience alone. You and I both know how hard caring for her is – but it’s a labour of love. Everything I do is for her. And I’d do it all again if I had to.’

  Pete nodded, looking not at Louise, but at the steam rising on his tea.

  ‘Anyway, I’ve got to go in a few minutes,’ she said. ‘We’re holding the information session for the parents of prospective trial participants today. Perhaps you should come,’ she added, glaring at him. ‘You might learn something.’

  ‘I’ve read the literature, Lou,’ said Pete, his tone suggesting he was determined not to rise to the bait. ‘So I know the facts. And that’s what bothers me. There are too many risks.’

  ‘They are risks that are being mitigated. They will be incredibly careful. No expense is being spared. They will be monitored intensively. The professor—’

  ‘Yes, I know you think the sun shines out of his arse!’

  ‘The professor would not be doing this if he didn’t feel it would bring about a great result.’

  ‘He would say that, Lou, wouldn’t he? He needs bodies for his trial. So just stop and think for a moment. Patience is content, happy at home, being cared for by others, you aren’t having to do most of the heavy lifting. What is so wrong with things as they are? Why are you willing to risk so much for this tiny chance of a change that, frankly, seems pretty petrifying to me?’

  ‘Why so petrifying?’ asked Louise, cradling her tea.

  ‘Just think. She’s an innocent, is Patience, isn’t she? She’s one of the world’s most wonderful, innocent souls. She doesn’t have a dicky bird what’s going on around her, and that’s a good thing. And if this experiment works – if – you are potentially giving a severely disabled body a brain which absolutely doesn’t match it. Imagine how frightened she’d be. She’d be a prisoner in her own body. It’s disturbing, Lou. I can’t sleep for thinking about it.’

  Louise thought about the baby she had held, in those days before the regression had robbed her brain of its potential. She remembered the light she’d seen in Patience’s eyes, the intelligence, the promise. Her intense determination to sit up, to grasp toys, to mount her trike and push herself along. They had video of her doing that, of her laughing as she traversed their patio, her hair billowing behind her, her smile conveying the joy she clearly felt at finally being able to do something that Eliza could do, too. Louise ached to be back behind that camera, witnessing it. She longed to hear Patience speak again, even if all she ever said was no, the way Eliza had done for one memorable month as a toddler. This trial could return Patience’s stolen future to her. Why on earth couldn’t Pete see that?

  Louise checked her watch. She had to go. She put down her tea – she had hardly drunk any of it – and looked at Pete.

  ‘Well, I can see that we’re not going to agree,’ she replied, finally. ‘But you know how I feel and I’m not going to change my mind. So I’ll talk to the professor about next steps.’

  ‘There won’t be any, Lou, because she’s simply not going to do it. I won’t give my permission.’

  ‘I’m told that we won’t need it,’ Louise replied, picking up her handbag from the kitchen table, and doing up her jacket.

  ‘What?’

  ‘There are ways of getting round that, I’m told.’

  ‘You can’t be serious! You’re prepared to go ahead without my approval?’

  ‘Absolutely. I will do whatever it takes, Pete, for Patience. Now, I must go.’

  Louise walked swiftly to the door, with Pete in pursuit.

  ‘Lou, we have to talk about this. This is serious. Critical. We need to work as a team on this…’

  ‘It’s too late for that,’ said Louise as she opened her car door and sat in the driving seat. ‘It seems we’re on opposing sides now.’

  And as she turned on the ignition and reversed out of the driveway, Louise forced herself not to look at Pete. But as she drove away, her rear-view mirror captured him in the open doorway, staring fixedly at the car until she was out of sight.

  *

  One by one, they entered the room, some holding hands, others clutching cups of coffee and phones, searching the rows of chairs for faces they recognised. There were hugs between some, who were obviously old friends; looks of suspicion between others. They knew that this was essentially a competition and that some of them would lose.

  Louise had made a spreadsheet of their names, their ages, and their addresses, so she knew who they were. But she wasn’t prepared for their faces. The women and men who were making their way through the open double doors into the medium-sized, strip-lit conference room she’d rented for the event, all had expressions of fear, tinged with something unmistakable – hope.

  She knew that look well. She’d borne it long ago, back when Patience had been a baby. But it had been wiped right off her face during a regular reunion of her birthing class friends which she’d gone to once – and only once. Louise had watched as five babies born in the same month as Patience bounced up and down on podgy legs, hauled themselves up against the chairs in a local café and babbled joyfully, blissfully unaware of each other and entirely dedicated to their own enjoyment.

  Patience had spent the entire event in Louise’s lap, crying. She hadn’t been hungry, or wet, and she hadn’t had wind; she had just cried, angry tears dripping down her cheeks, which were red, the blood under her skin bursting to the surface. Louise had left early, telling the woman next to her that she needed the toilet. She had picked up her coat, strung her bag over her shoulder and walked out of the door of the café with Patience dangling from her hip, never once looking back.

  Louise remembered, too, the fierce determination she had felt when driving past the local primary school, the one her mother had spotted when they’d decided to buy the house.

  ‘It’ll be a nice little walk for you all in the mornings,’ she’d said, doused in glorious innocence.

  Louise had willed her youngest daughter to speak properly, to walk properly; convinced that if she believed it enough, Patience would start school there in two years, just like her peers, just like Eliza. She had maintained that hope until her place had been refused, and a row had ensued. Back then, Patience could stand a little bit, could sit cross-legged and listen. But try as she might, the school had stood firm and Patience was given a place at a ‘special’ school, fifteen miles away from home instead. It had been nice enough. It had actually been loving – caring, even. But it was not ‘normal’.

  Every morning a minibus had pulled up on the gravel outside their home. Inside there were three other children, each locked, it seemed to her, in their own personal prison – a wheelchair, a chest brace, a body ravaged by oxygen starvation. She’d watch as Patience was loaded among them every morning, a shooting star being sent out into a cold, unbidden galaxy. It depressed her beyond measure. At least Patience was unaware of her reality, though, and that was a comfort.

  It was around that time that she had been forced to give up her nursing career for a different kind of work. Patience’s school holidays eventually became an impossible gap to cover. The paltry offering from social services of a carer to help put her to bed nightly was not enough and the constant changing of staff in what was a low-paid, stressful job meant they had usually only just taught someone how to look after
Patience before they left for a more rewarding role elsewhere. The crunch point came when Louise had got back from picking up Eliza from a friend’s house to find their latest visiting carer, Jean, smoking in their conservatory while Patience slept in a soiled nappy in front of EastEnders.

  Just after she had given up work, a social worker had come to visit. She’d seemed relieved to hear that Louise planned to be around more. She had gone through the care package they’d been offered – a carer every morning and evening, to do the dressing, feeding and undressing – and confirmed that that was all they could expect at that point. ‘Unless, that is,’ the woman had said, with a steely look in her eye, ‘you decide you can’t cope.’

  Louise knew a mum who couldn’t cope. She’d met her through a local support group for families with disabled children. She had always been so well turned out; painted nails, glossy hair, clothes spotless and ironed. And yet she had apparently cracked one day and walked out of her house, leaving her disabled son sitting inside alone in front of the TV. She’d called social services before she left and told them to come to pick him up.

  He had been taken to a residential school and Louise had visited it with her once. It had been built on a brown-field site within a stone’s throw of the M5. The windows were triple-glazed and its outside space amounted to a tiny courtyard overlooking a supermarket warehouse. She had hated it from the minute she’d parked the car outside, had to wipe tears away from her cheeks before anyone else could see. She had resolved then that she would never send Patience away. She was their child, and she belonged at home. All sacrifices were worth making to make this her continued reality.

  And so, while her peers were all packing their bags and heading off to university without a second glance at their childhood bedrooms, Patience spent most of her days embedded in a special armchair in her childhood playroom, watching repeats of The Muppets. The entire family had become inextricably locked into her never-ending childhood. And despite the fact that she lived in Neverland, she was forced to leave her special school at nineteen. The family found themselves thrown into a hinterland of ‘adult provision’, discovering that there was neither the money in the system – nor the inclination – to make the days of disabled adults worth living.

  It had been a time of great cruelty. As Patience’s youthful good looks faded, so did her appeal to almost everyone around her, even her own grandparents, and Louise’s friends. She was no longer a cute, blonde angel. Her face could no longer launch fundraisers or inspire charitable acts. She became invisible, and so, by proxy, did they.

  But unlike the parents of her generation, who were all led to believe that their Rett children would die before they reached this ghost-like adulthood, these parents, gathering in this anonymous conference centre out by the ring road, shuffling along rows of grey stackable chairs, had good reason to expect their disabled children to live almost as long as them. And crucially, they knew what they were dealing with. Patience had been given a diagnosis based on a list of symptoms; the children of these families had been diagnosed using genetic testing.

  These families knew, absolutely, which gene fault had waged war on their daughters’ – and in a few rare cases, their sons’ – brains. And because of Louise’s new employer, they were now being presented with the tantalising prospect of fighting back. They were being offered hope, and Louise knew how powerful that was.

  Having hope bludgeoned out of you was a body blow. It was an experience that she had never fully recovered from. She remembered exactly where she had been, and how she’d felt, when it had happened.

  It had been a stifling, muggy day in the long, hot summer of 1992…

  *

  Louise had opened the window to try to usher some fresh air into the car. Instead, however, she had ended up inhaling the exhaust fumes of the double decker bus waiting at the lights in front of them. She’d rolled the window back up and looked in desperation at Pete, hoping that he could somehow find a shortcut to escape the traffic. He’d reacted with a sudden swing to the left and embarked on a series of detours down narrow residential streets flanked by closely spaced parked cars.

  Finally, after a close shave with a moped and several shocked pedestrians, and at least two arguments in which one or both of them had threatened to get out and walk, the family arrived at their destination – the Royal Children’s Hospital. Patience’s initial appointment there hadn’t yielded a diagnosis, so she had been invited back for a whole week of tests.

  Pete pulled up directly outside the hospital entrance and unloaded Patience’s wheelchair as taxis beeped and pedestrians weaved their way around it. It was her first wheelchair, bigger and more unwieldy than her old toddler buggy, and they were still getting used to it. It had to be stuffed into the back of their elderly Volvo estate, the boot only just closing over it. Louise stood on the pavement watching Pete struggle to unfold it, smelling the carbon in the air and absorbing the city’s constant hum. The hospital entrance loomed large behind her. More bloody hospitals, she thought; it had better be worth it this time. Would the very best knowledge this city could provide be enough for Patience? Someone must know what was wrong with her, surely.

  The chair finally unfolded, Pete bent over, reached into the back of the car and let out a deep grunt as he lifted Patience out. She was getting heavier and she showed no signs of wanting to bear weight or use her arms for anything other than wringing. The twisting motion required to move her in and out of the car was beginning to take its toll on them both.

  Pete signalled that he was now ready for Louise to take over. She busied herself securing Patience in the chair, while he reached into the glove compartment for the orange disabled parking badge; another new, unwelcome but vital addition to their lives.

  They had a routine now, a caring routine that neither of them had spoken of, but both understood. Speaking about it would make it all too real, too permanent, she thought. She preferred the silence.

  Pete carried their bags, one slung over each arm, as she pushed Patience in the direction of the entrance hall and then into a large service lift to the second floor. Once there, they located Butterfly ward. All of the wards had names drawn from the beauty of nature, a stark contrast to the network of concrete corridors and brash metal reality of hospital life.

  The ward sister took them to Patience’s allotted bed. It was Pete who noticed that there wasn’t anywhere for Louise to sleep; hospitals didn’t usually offer accommodation for families back then. The utilitarian hospital bed, surrounded by optional curtains, had a small lockable cabinet next to it and a plastic, upright chair resting against the wall. Pete asked the orderly who had been making the bed next door where his wife should sleep and she had shaken her head solemnly, both acknowledging the problem and dismissing their query in one fell swoop.

  Despite Patience’s young age, there was clearly an assumption that parents would and should leave their children alone at night and find somewhere else to rest. Louise decided in an instant that she would challenge that assumption, and it seemed that she wasn’t the only one. When she reached the nurse’s station, she found another woman arguing with the ward sister about her own sleeping arrangements.

  The woman, with her vibrant red hair, stilettos, long drop earrings and red lipstick, looked like she should be heading out for the night, not preparing to bed down in a hospital. However, she was also cradling a little boy in her arms, rocking him fiercely.

  ‘Now you listen to me. Just listen,’ she said, in a rich Yorkshire accent. ‘I’m not going to the bloody cheap hotel down the road. I’ve never spent a night away from Patrick, and I am not going to start now. He’s very ill, or else he wouldn’t bloody be here, would he? And I’m going to be here for him, whether you make me lie down on the lino beside his bed, or whether you manage to rustle me up another blanket.’

  Louise instinctively placed a hand on the woman’s shoulder. She’d never done something like that before and probably would never be brave enough to do so again, but he
r instincts were strong.

  ‘Excuse me, sorry, I don’t mean to interrupt,’ she said. ‘I just wanted to show that I agree with you. I’m not leaving my daughter either.’

  Both women glared at the sister, oozing defiance. There was a short silence, punctuated only by the cries of children down the hall and the rattle of the tea trolley.

  ‘The reason why we suggest you stay elsewhere is because we haven’t anywhere comfortable,’ said the ward sister, her tone reflecting her resignation. ‘Space is at a premium here. But if you don’t mind roughing it a bit, we do probably have a room you can use.’

  She led the two women away down a long side corridor and opened a door into what looked like a meeting room. A large walnut effect table and chairs was placed in the middle, ringed with institutional style waiting room chairs. There were two large sash windows which overlooked an internal courtyard. It stank of cigarettes, had a bare bulb hanging from the ceiling, and was missing at least one set of curtains.

  ‘You’ll see why we don’t advertise this as accommodation,’ she said, looking at them, her eyes alight with challenge. Her gaze then fell on the little boy, who was now asleep on his mother’s shoulder. ‘But I do understand why you want to stay,’ she said, softening. ‘I have a little one too. Look, I’ll go and get whatever I can find to make your stay a bit more comfy. What do you need? Sheets? Pillows?’ Louise, still a nurse at heart and at home in a hospital environment, resurrected her workplace efficiency and sprang into action.

  ‘Yes, please. Definitely sheets, pillows, blankets. And do you have any tape? Drawing pins?’

  The ward sister nodded and left.