On impulse, Louise had once lugged an enormous tape recorder and microphone into the kitchen so that she could record Patience attempting to talk at dinner time. She was very glad now that she had. They hadn’t known it then, but it had turned out that they were to be Patience’s only words.
Louise had dubbed that tape onto a CD more than a decade ago, and she still listened to it sometimes, when no one else was around. It always made her cry, but the wormhole it invited her to plunge into – a portal that transported her from the reality of her silent, frozen daughter back to the memory of a chubby toddler smothered in yogurt and ketchup and delighting in her own voice – was worth every tear.
Once Patience’s words had been snuffed out, however, things got even worse. She then began a hideous stage of crying incessantly, as if in pain. Janet, Louise’s mother, had been a regular visitor in those early days, taking a break from the apparent trials of being a vicar’s wife. She had referred to Patience’s cries and developmental delay as ‘her little bit of trouble’, as if overtly trivialising it would persuade God to deal them all an easier hand. Louise and Pete, meanwhile, continued not to talk about it at all.
But as the months went by, a proliferation of sleepless, fearful nights, punctuated by Patience’s piercing screams, had driven her to see her GP.
It had taken a great deal of courage to spit out the words; to explain, in terms she hoped the doctor would understand, that her daughter was not ‘normal’. But Dr Cooper, nearing retirement and head of his practice, had told her that he didn’t think she had anything to worry about. But she had persisted, had refused to accept the platitudes he had offered. So he had referred her to a paediatrician at the local hospital – to get rid of her, she now realised.
And so it was that in that hospital on a dreary day in the early 1990s, seated on that stained grey chair with Patience on her lap, Louise had been dealt a body blow. And it hadn’t been a diagnosis; instead, it had been a decimation of her character.
‘I can find nothing specifically wrong with her,’ that paediatrician had said, so forcefully that he had almost been spitting. ‘She is perhaps just a little slow; she’s not as bright as her sister, clearly. But you really must try, Mrs Willow, not to be such a neurotic mother.’ He had said those actual words out loud – ‘a neurotic mother’ – as if he had been chastising a child.
She’d been alone at that appointment, and had been so overwhelmed by this assessment that she’d been unable to utter any retort at all, although many were forthcoming afterwards. She knew, absolutely knew, that Patience’s problem was not in her head, and this doctor, with his greasy side-parting, sparse moustache and repugnant odour of cigar smoke, was somehow suggesting that she was responsible for her daughter’s plight.
Pete hadn’t been working overseas then, but he had been working long days, trying to make their eternally loose ends meet. He’d often come home late at night to find her sobbing on the sofa. But that day had been worse than most, and he had taken one look at her despair and, in a rare fit of rage, had found the telephone number for the consultant’s private secretary (his NHS phone was permanently on answerphone), dialled it and demanded that the blasted man call him back.
Pete’s anger had jolted the doctor into action. Louise suspected that he had yielded when challenged by a fellow alpha male and, in an effort to get him off the phone as soon as possible, he had promised a referral to a specialist centre for further testing. The appointment that had followed, the one where they had given her ‘trouble’ a name, had begun it all. Or ended it all, if you looked at it another way, she thought. It had certainly put an end to hope.
*
After taking a few deep breaths to galvanise herself into action, Louise turned around and opened a chipped melamine cupboard door in search of teabags. She dropped one into a mug, then flipped the button on the kettle and switched on her laptop, which was in its habitual spot on the table. As she waited for it to boot and the kettle to boil, she opened the back door once more and walked around the side of the house, clasping the box they used to store the recycling to her chest.
She opened the lid of their large green recycling bin and the smell of unwashed yogurt pots and food tins, baked and fermented by the summer heat, hit her like a tsunami. She held her breath and rested the box on the rim, tipping it up gently, letting the empty wine bottles fall into it one by one, each one playing its own part in an avant-garde melody. When it was empty, she took a step away and inhaled deeply before meandering back around the building, taking in their ramshackle garden shed, the pile of roofing tiles mouldering in the corner, the dark patch on the ground which marked where the guttering leaked.
They had bought the house, a three-bedroom 1960s-era semi-detached, in the late eighties, brimming with plans and dreams. It had been in a state, even then, but Pete had reckoned that he’d have the time and money to do the work it needed between building contracts, and Louise, although slightly doubtful, hadn’t cared too much. She had been so delighted to move back near her parents, to the area she had grown up in, that she had completely ignored the dodgy bathroom, the perilous electrics and the cramped kitchen.
She had approached her transition from parent to carer in a similar manner. She had ignored the reality of their situation for as long as she could. You could argue that parents were also carers, she thought – that they were part and parcel of the same thing – but you’d be wrong. Parents care for children who gradually pull away from them; carers care for someone who only grows to need them more.
The kettle clicked off as she re-entered the kitchen. She opened the fridge in search of milk for her tea, but there was none. Its grimy shelves were home only to a collection of mouldering jars and the drawers beneath were hosting a collection of vegetables which were closer to compost than cooking. She slammed the door shut and poured hot water into her mug, splashing hot water on her fingers as she did so.
But she did not pour cold water on the inevitable burns, because she had something more important to do.
She walked down the corridor into Patience’s room, which was at the front of the house. It was the only room that they’d found the money and time to refurbish in the past decade. It had previously been an unloved front room, dominated by brown shagpile carpet, yellow and green geometric wallpaper and a selection of dark-brown utility furniture. Now, however, thanks to Louise’s careful selection of decor in varying tones of cream and pink, it had transformed into a boudoir fit for a princess. It was still dark in there, thanks to blackout blinds – another recent purchase – but Princess Patience’s blonde hair was visible as always, fanning out behind her on her pillow, like a halo.
‘You’ve woken up again, my love, why didn’t you tell me? I didn’t hear you. Hang on a sec…’ Louise carefully rolled her onto her side and wiped around her mouth with a tissue. It was important to keep moving her, in case of bedsores, and to keep her mouth dribble-free, to avoid similar on her face. ‘There you go. Much more comfy. Look, I’ll put the radio on for you. Beth should be here in a minute to get you up. And I’ll send Tess through when she’s done her business. I know you two like to see each other before breakfast.’
Louise returned to the kitchen and sat down in front of her laptop, mug in hand. There was an email from Pete. She’d read that later when she had more time, and give him an update on Patience’s recovery. Then underneath, another job rejection – nothing new there.
But under that, there was something entirely unexpected. She paused and took a large gulp of tea, allowing the hot liquid to sear her oesophagus, jolting her to lucidity as it went. She had to read the email several times before taking it in. Then she snatched up her phone.
*
‘Shit,’ said Louise, on her third circuit of the hospital car park, two hours later. ‘Shit, shit, shit.’ She’d almost had that space, but some bastard in a black Range Rover had reversed at light speed to secure it instead. Damn hospital car parks, she thought; she was clearly condemned to do bat
tle in them for all eternity.
She caught sight of an old lady in a Nissan Micra pulling out of a space about fifty metres ahead. Finally, a chink of light in this pit of despair. She could see someone circling back around in an attempt to seize the spot, but she was not letting her rightful place go this time. Her foot hit the accelerator with force and, when she reached the space, she staked her claim alongside it with a screech of brakes, bidding her bitterly disappointed rival farewell with a nod and a triumphant smile.
It was only after the other driver had retreated, however, that she realised how tiny the much-prized space was. There was a large 4x4 parked on one side, and a family-sized saloon on the other, each hugging the lines. Her own car was significantly larger than the old lady’s Micra, but she had no choice but to try to fit it in. There simply was nowhere else to park. And being late for this, on top of everything else, would be disastrous.
Louise put her car into reverse and began to turn, keeping a close eye on her side mirrors as she did so. She also took a couple of deep breaths, willing her heart to slow its frantic pace, and her ears to stop ringing. She sighed with relief when her boot squeezed between its two close neighbours, and began to straighten up, willing the car to find an equilibrium.
Then – crunch.
‘Shit,’ she said once more, but louder this time, and with even more emphasis.
She opened her door a few inches and eased her body through the gap between the two cars, flinching when the plastic moulding of the door compressed her torso. When she’d finally released all of her limbs from its grasp, she walked around to the rear of the car to assess the damage.
It turned out that there was a low wall marking the end of the space and her bumper was currently impaled on it, bent and bruised. It would undoubtedly be expensive to fix. Everything to do with cars seemed to be. Where they’d find the money, she had no idea, but there was no time to worry about that now.
She ran through the car park and into the building. She scanned the email once more. Room 465, it said: presumably that was the fourth floor? She checked her watch – she had five minutes left – and hammered on the button by the lift.
‘That lift’s out of order,’ said a passing hospital porter. ‘I don’t think they’ve called anyone about it yet. You’d be better off walking. They’re all up the spout. Everything here is.’
Louise noticed that the lift button wasn’t lit and it didn’t seem to have budged from the sixth floor. He was probably correct.
‘Fuck!’ she said, shifting her swear words up a gear. She searched for the stairwell, and began to climb. She hadn’t had time to eat breakfast that morning; in fact, she’d barely finished her cup of black tea. As she panted her way up four floors, a familiar headache came back to the fore and a wave of nausea washed over her. Then she felt tears begin to form. They were tears of frustration, of anger, of despair. She just wanted somebody to listen, to take her seriously, to say yes, just once. Was that too much to ask?
By the time she reached the fourth floor, she had tears coursing down her cheeks and beads of sweat forming on her forehead. She rubbed her face with her sleeve, depositing foundation on her jacket as she did so. She checked her watch once more. She had two minutes to get there. There was no time for a diversion to the loos to patch her face up.
She exhaled deeply as she finally reached room 465, saying a prayer of thanks as she did so that Beth had turned up on time that morning. Some of the carers on the roster were incredibly flaky; they’d had a series of young women recently who’d taken to calling in sick with almost zero notice. That meant that Louise had no choice but to drop everything and stay with Patience. It was something she had become accustomed to and nowadays it didn’t even matter much. She had nowhere in particular to be. She didn’t bother making any plans, because she knew she was too unreliable. Her friends, such as they were, had stopped asking her to meet up with them long ago.
Louise knocked on the opaque glass door and a muffled voice inside the room asked her to enter. Inside, a bespectacled man in his sixties, with bushy hair and a crumpled shirt, sat behind a desk, an untied red bowtie slung over his chair.
‘Mrs Willow, thank you for coming in to meet me so speedily,’ he said, standing up to shake her hand. He gestured towards a blue plastic chair wedged between two filing cabinets, bidding her to sit down. She did so, taking in the tiny room crammed wall-to-wall with piles of papers, unlabelled box files and perilously stacked books.
An awkward silence followed. Louise broke it first.
‘Professor Larssen, I just wanted to apologise for not making the first interview date. My daughter…’
‘Yes, I know that.’ Louise was startled. ‘Oh yes, I know she was ill. When you didn’t turn up I rang your home and left you a message asking you to call me back. I spoke to a carer, I think. Didn’t you get it?’
She genuinely couldn’t remember. It felt like that entire period hadn’t actually happened. She had sleep-walked through most of it.
‘Anyhow, could we start, Mrs Willow, with you telling me why you want this particular job?’
Louise blinked at him and took a deep breath. ‘I-I saw the advert and I thought… well, I’d enjoy that.’
‘What exactly would you enjoy?’ He hadn’t taken his gaze away from her. She began to sweat in the heat of his undivided attention. This was excruciating.
‘Let me be straight with you, Professor Larssen. I don’t remember the exact particulars of the job. I only got your email a couple of hours ago and I was so keen to see you. I mean, you’ve waited quite a long time to see me. I’m sorry I couldn’t make the last interview, I really am. You see, I’ve always wanted to pick your brains. But Patience has been ill, as you know, and I just haven’t had the time to do… research.’
The word salad had tumbled out of her mouth before she could stop it.
‘I see.’ He leafed through a pile of papers in front of him. He took out a document and ignored the other papers which fell onto the floor one by one, pouring down like a waterfall.
‘I’ve been reading through your CV,’ he said. ‘Am I right in saying you worked as a nurse before you had your children?’
‘Yes. But that was more than thirty years ago.’
He nodded. ‘And since then, you’ve been volunteering?’
‘Yes,’ she answered. ‘At Patience’s school, then later, at the local day centre. I did general admin, rosters, fundraising, a bit of first aid.’
‘Interesting,’ he said, uttering the word, but sounding to her like he barely meant it. He was clearly thinking about something else. Louise studied her shoes, still shining from the rigorous clean she’d subjected them to before her last unsuccessful interview, for an admin job at a firm that fitted bifold doors. She’d literally applied for every job she could find in the local area over the past few months, not really caring what it was, or whether she was suited to it. She just wanted to earn some money, because she could see how things were. Pete tried to hide it from her, but she wasn’t a fool.
The one thing she could recall about this job was that it was more allied to her skillset than most. It was a position with the team who ran Professor Larssen’s clinic, although she’d forgotten the precise details. It might be a job as the office cleaner, she thought, for all the attention she’d paid to the advert; it was his name that had drawn her to it.
She had known about Professor Larssen for years. She and Pete had poured over his early papers into Rett syndrome and its causes, particularly after the discovery of the gene fault which caused Rett, in the 1990s. They had even tried to get Patience signed up to some of the drug trials his team had run over the years, but she had been refused a place each time, mostly for being too old, or not having the symptom they were hoping to treat.
When she looked up from the floor, the professor was running his finger slowly down the side of the paper, ignoring her. Sitting there in awkward silence made Louise feel incredibly exposed, given her ignorance of this role�
��s details and her lack of recent experience in the workplace. She’d had enough bruising encounters in interview rooms in the past month to last a lifetime and, at that moment, she felt like giving up. She couldn’t take many more blows. This was clearly a waste of time, she thought. She felt her frustration rising, like a ball of fire in her throat.
‘Professor. Let’s be honest here,’ she said, pulling herself up straight and tugging her shirt down over her stomach. ‘Most people can’t be bothered to read past the first line of my covering letter. I’ve been out of paid work for a generation and I’m getting on a bit. Trying to salvage a career this late is really a vanity project, isn’t it? You’re thinking it, and so am I. So the question is, why are you bothering to see me at all?’
Professor Larssen looked directly at her.
‘My dear, I’m too old and too busy to afford to do things for no good reason.’ Louise held his gaze and stared at him accusingly. ‘I think you’ll be able to help me,’ he said. ‘You’ll be aware of my work?’
She nodded.
‘Yes.’
‘You’ll know then that for the last couple of decades, I’ve been investigating Rett syndrome. And you were kind enough in your application letter to tell me that Patience has Rett.’
Louise nodded, wondering where on earth this could be going.
‘Well, after the discovery of the faulty gene at the root of the problem, MECP2, twenty years ago, teams like mine began the next phase – working out if there was anything we could do to mitigate its effects,’ he continued. ‘We’ve looked into repurposing existing drugs, for example. But to cut a very rambling story short – I’m given to rambling, you might have noticed – we’re at a critical stage with a new trial and I need someone who can talk to parents. Because I’m not very good at it. As you might have noticed also.’
Patience Page 4
