Patience

by Victoria Scott

  I lie there as she checks to see if my pad is dry and then she rolls me over and sits me up. It feels good to not be lying down for a change, despite the fact that my back muscles are totally pathetic. I was developing a sore patch after all that lying down in hospital, and crikey, yes, I really do need the toilet again. It stings down there, in fact. Beth calls Magda in to help her with the hoist, which transfers me from my bed to my wheelchair. And as she pushes me into the bathroom, the relief to be moving again, escaping bed, makes me smile.

  ‘Ooh, look at you, Patience. Smiling away!’ she says, as she manoeuvres me through the door frame. She definitely thinks I’m simple. They all do.

  Magda is now back again, fresh from being sent to find a cloth. I have a bit of dribble running down my chin, you see.

  ‘My lovely Pat! Oh crikey, look at you,’ she says, wiping me. She’s the only person who calls me Pat. I hate it.

  I suspect that Magda is the cause of things being a bit ‘off’ here this weekend. For example, I was given the wrong breakfast cereal this morning – shredded wheat instead of Weetabix. I had always fancied trying them; Ellie has them, but I’ve never previously been allowed them, due to the choking risk. In the event, however, they were a bit of a disappointment. I reckon that’s what cardboard tastes like. I’m so fed up of eating mush, though, that I’ll take what I can get.

  So yes, something is definitely up. I think it’s the endless staff shortage, frankly. A rather limp and useless teenager, Karen, left last week after only a few months. Magda is an agency carer plugging the gap and, as sweet as she is, she doesn’t know her arse from her elbow – or the difference between breakfast cereals, when it comes to that.

  Things are about to change, however. I overheard Maggie, the care home manager, tell Beth that someone new was starting today. Staff turnover here in the respite bungalow is high, always – the pay is low and the hours antisocial – so the hiring of a new member of staff is always a reason for celebration at Morton Lodge.

  And here is another reason to celebrate. I’ve finally been hoisted onto the toilet. I’ve been wanting to go for hours. I let go of a welcome stream of urine, exhaling in pleasure. It stings at the end, mind you, but the relief was worth that small amount of pain.

  I wait while Magda wipes my bottom, pulls up my leggings and then hoists me, with the help of Beth, back into my chair. Then she pushes me into the dining room where Beth is mopping up Ellie after a very late lunch. Ellie is a tremendously messy eater, with more usually hitting the floor than making it into her mouth. She has cerebral palsy. I overheard Maggie saying it had something to do with being deprived of oxygen at birth. She’s got something on me, though – she can move her arms deliberately, albeit in jerky movements. She can also manage some words; slow, slurry, but definitely there. I envy her. She looks at me sometimes when we’re alone together in the TV room, and I wonder if she knows that I can understand her.

  Magda has just come in to get us, to put us in front of late-afternoon daytime TV, which is as inane and vacuous as morning daytime TV. I enjoy catching the occasional afternoon news bulletins on BBC1, a welcome relief from the endless antiques programmes which seem de rigeur at this time of the afternoon. Just now I’m having to watch a show in which Den and Belinda – a couple in their sixties who probably applied to the TV production company because they had run out of conversation – pretend to look shocked at the goodies their tangoed presenter is finding in their garage.

  ‘Ooh, Belinda, look at that! I would never have thought that old chamber pot of my gran’s would have any value!’

  ‘I know! But will it sell for the reserve price at the auction?!’

  I do hope they’ve washed it…

  The front door bell! A very welcome distraction. I watch as Maggie runs to get it. Maggie rarely runs for anything – at eighteen stone, it isn’t something she takes to easily. It’s only a matter of seconds before I understand her urgency. Walking alongside her down the hallway, towards the day room, is a man. A very handsome man. He has curly brown hair, left long on the sides, cut just above his collar. His eyebrows are strong and sleek and his jaw is purposeful; I can see the muscles in it dance as he swallows. Come to think of it, doesn’t he have a look of Howard Donald?

  ‘So you’ve worked in care homes before?’ asks Maggie, craning her neck upwards to gaze at him through her stubby blue eyelashes, preening her mousy, frizzy mane as she does so.

  ‘Yes, several,’ he answers in a voice laced with chocolate, as she reverses him into her tiny office, like a spider closing in on her prey. She doesn’t shut the door, though; she probably needed to sit him in the doorway so that there was enough space. This means that I can hear everything they say.

  ‘But I’ve only looked after men before,’ he continues. ‘That’s originally what I applied for here, to work next door, with the men.’

  ‘Yes, I’m sorry about that,’ replies Maggie. ‘But we’re short of staff at the moment, so I snapped you up for here. You won’t be able to do the personal care with the girls, of course, but there’s lots you can do, and we definitely need you. Do you mind coming over?’

  ‘No, no. I’m happy to help wherever’s needed,’ he replies.

  ‘You’re doing a college course, is that right?’

  ‘Yes, sort of. I’m doing my GCSEs again, part-time,’ he replies. ‘Very late. I’m having a bit of a career rethink. It depends on my grades, really.’

  I hear Maggie laugh. ‘Well, don’t do those exams too quickly! Lord knows, we need you here. Shall I show you around the place?’

  I move my head as far as it will go to watch them come out of the office and head down the hall. I hear Maggie showing him our bedrooms – all as close to a home from home as you can manage with hoists and medical beds everywhere you turn – and into the bathroom, complete with its padded bath with a side that lowers so you can be lifted into it, and its extra tall, comfortable toilet. Then they turn and head my way.

  ‘This is Patience,’ says Maggie. ‘Patience, this is Jimmy. He’s going to be working here from now on.’

  Jimmy squats down and looks straight at me. ‘Yes, I’m the new boy,’ he says, grinning. I feel the colour rise in my cheeks, but I don’t think they notice. I have a rash on my cheeks anyhow, from the cream they use to get rid of my burgeoning beard. The joyful effects of hormone imbalance are another glamorous element of my existence, by the way; it’s not all about my bum.

  ‘Hello, Patience. I’m Jimmy,’ he says. He’s already been introduced, of course, but it is nice that he decided to do it in person, face to face, on my level. ‘I’m a bit new at this, so please be gentle with me.’

  I can behave in no other way, fella.

  ‘Actually, Jimmy, Patience is due a drink,’ says Maggie. ‘Could you do that, do you think? Beth will show you how to make it up.’

  ‘Sure,’ he says, putting his hand on my shoulder. ‘I’ll go and get it and I’ll be right back.’

  Maggie smiles with approval and goes back to her office, singing to herself quietly. She’s out of tune. I want to smile, but decide to keep it in. They’d probably assume I’m smiling because I like this bloody auction programme and make me watch it every day for all eternity. It’s not worth the risk.

  A few minutes later, Jimmy comes back bearing a plastic beaker full of chocolate milkshake, which he’s forgotten to put the thickener in. Bingo, this one’s a keeper. I detest that stuff. It’s like drinking lumpy custard.

  He pulls up a chair next to me, grabs a handful of tissues from a box on a nearby table and proceeds to tip the glass into my mouth.

  ‘Now here goes, Patience. I’m sorry if I get this wrong and make you choke.’

  I laugh before I can stop myself, and splutter. It probably sounded more like a choke than a laugh.

  ‘Now then, lovely, don’t give me a heart attack! Are you OK? Are we good?’

  He cradles my face as he asks me that. I look straight at him, composed and ready. Jimmy tilts the gl
ass once more and I try to drink it more carefully. This has the dual benefit of making sure I won’t choke – my tongue is a constant hazard – while allowing me to savour the attentions of this lovely man. If you have to spend your life being cared for, you might as well be cared for by someone nice to look at.

  *

  After Jimmy goes off shift, I feel flat. He brightened up the whole place, and this rubbed off on the other staff, who all, magically, became more enthusiastic, more hard-working, more helpful. But I can’t let this low mood colour the rest of my day, because I have a visitor this afternoon.

  Her name is Janet and she’s a music teacher at one of the local primary schools. When she’s not torturing herself by trying to persuade six-year-olds to learn the recorder, she works as a music therapist. I always look forward to Janet’s visits. She has a mass of curly hair and smells of flowers, and I know that I’m not going to have to switch off during her session, even if it goes on for ages. She brings all sorts of percussion instruments with her, things that even I can use, like bells which I can wear around my wrists and drums I can try to hit with my clasped hands. Each impact, each jangle, sends a shockwave of joy up my arms and legs and into my brain. And when she puts on a backing track for me to play along to, my limbs fizz and I rock side to side, miraculously free of pain.

  This sensation only lasts as long as the music does, however. When it’s over, I go back to being frozen, brittle, rigid. For I am only truly alive while the music lasts.

  9

  Louise

  September

  Louise tiptoed down the stairs, hoping that by avoiding the squeaky step, she might also avoid waking Pete, sleeping in the spare room. They couldn’t bear to be near each other now. She didn’t have time for another fruitless argument this morning, not if she was going to make it to the conference centre in Birmingham on time. Since accepting the job last week, she’d been out of the house every day and, given Pete’s current attitude, that was something of a relief.

  She had been full of trepidation on her first morning at work, worried she’d be viewed as a dinosaur, she’d been out of the workplace for so long. However, Professor Larssen was an incredibly loyal employer, and most of his team had been working with him for two decades, so everyone had been welcoming, respectful, even. Her colleagues respected the knowledge she had about Rett and had asked her advice on all sorts of aspects of the trial. They were cracking on with the recruitment for it now and she was an important part of the process, communicating with parents and discussing their concerns.

  Being consulted, being respected, being valued: she realised now that she had wanted a job not just for the money, but also for the recognition that came with it. She had forgotten how good it felt to be valued as an individual. She had been dismissed as only ‘Patience’s mother’ for far too long. Motherhood was an extraordinary privilege, she knew that, but she also felt that mothering a disabled adult was like wearing an invisibility cloak. Your herculean efforts went entirely unnoticed by society. In this job, however, she was actually being seen.

  There were some really impressive women on the professor’s team, she had discovered; some really successful women, and she had found their different paths both fascinating and inspiring. The most prominent of these was the professor’s wife, Magda. She was a scientist – a geneticist – originally from Hungary. She had brought up two children while learning a new language and forging her own career. She was as chaotic as her husband, but she had a brilliant mind, a sparkle in her eye and a laugh like a hyena. Louise had warmed to her immediately. She hadn’t laughed so much in the past year as she had done in the past week.

  There wasn’t much laughter at home, though. The hideous mix of angry silence and flaming rows that had defined Pete’s home leave had been exhausting. She had started leaving early every morning to avoid seeing him at breakfast, leaving him to wake Patience and deal with the carers all day. Having him at home had at least meant that she could deputise that responsibility for a short while.

  Today was leaving day, however. When he’d gone, she’d be entirely in charge of Patience once more, and that would be some juggling act, mixing caring duties with her new job. But on the bright side, she’d be able to reclaim the house for herself. Over the past few months, his intermittent home visits, previously eagerly anticipated, had actually begun to feel like an imposition.

  She couldn’t put her finger on what exactly had changed, but something definitely had. She felt she couldn’t be herself with him around, couldn’t relax. He hovered over her while she ate, and she even felt guilty pouring herself a drink in the evening to take the edge off a stressful day. It felt like he was watching her constantly, looking for things to criticise. And everything he’d done this week had driven her to distraction: his insistence on recognition for any housework he’d done; his piecemeal efforts to fix the house’s many problems; his dogged determination to try to change her mind over the gene therapy trial.

  This trial had unearthed something long-buried between them, something ugly. Despite her anger, she had privately tried to see it from his point of view. In truth, she had struggled to sleep in recent days, Pete’s words dominating her thoughts and refusing to let her rest. She had never really disagreed so vehemently with him before, and this upset her deeply.

  She stopped at the bottom of the stairs and looked in on Patience. She was sleeping soundly now, after a difficult night. Patience had woken her up at about 1 a.m., crying out in pain. She had come downstairs and found Patience’s arm out of its sling and wedged up against the wall. Her collarbone was still healing, and she knew that it must still hurt. She’d given her a suppository of paracetamol and sat with Patience in the dark, stroking her hair until she’d fallen asleep.

  Louise felt utterly determined to give Patience the chance of a different life. She wanted to rid her of this pain, this silent torture. The professor had taken her through every risk the trial posed, had answered every question she had with understanding and concern. The list of possible side effects Pete had seen was alarming, she knew that, but it was also unlikely that any would occur and, in her view, the possible gain was so extraordinary, so mind-blowing, that it was worth the risk.

  Louise crept into the kitchen and filled up the kettle. So far, so good. There was no sign of Pete. While she waited for it to boil, she grabbed a piece of paper from a notepad on the side and wrote him a message, wishing him a safe flight. She was furious with him, no question, but she still loved him. She could hardly let him leave without a goodbye of some sort.

  And then the back door slammed.

  ‘Ah, Lou,’ said Pete, reaching down to unclip Tess from her lead, ‘I hoped I’d catch you.’

  ‘Unlike you to walk the dog so early,’ she said, still facing away from him. She crumpled up the note in her hand, chucked it in the bin under the sink and then turned on the hot tap, to begin the washing-up, all without turning around to acknowledge her husband.

  ‘I couldn’t sleep and she looked desperate when I came down. Also, I needed the fresh air.’

  Louise busied herself rinsing and scrubbing and did not respond.

  ‘Lou. Please. Stop doing that. Look at me.’

  Louise noticed that one of the mugs had coffee residue almost welded to its bottom. It must have been drying out in the sink for several days, she thought. She squeezed washing-up liquid into it and brushed it with vigour.

  ‘Lou. I’m going today. Please.’

  She took a deep breath and turned around, still holding the mug and the brush.

  ‘I know,’ she said, still brushing.

  ‘I don’t want us to part on bad terms. I won’t be back for a month.’

  ‘Yes,’ she said.

  Pete took two steps forward, so that he was just a few inches away from Louise.

  ‘Lou, we won’t get anywhere if we don’t talk about things. I really don’t understand why you won’t. Things haven’t always been like this. We used to discuss things, remember?’r />
  Louise still did not put the mug down.

  ‘Look, Lou, I want to understand why you feel like this. Why you’re so determined to go ahead with the gene therapy, even when I don’t want you to. I want you to explain. Can you try?’

  Louise stopped scrubbing the mug.

  ‘I have tried. But it makes no difference.’

  ‘You haven’t tried, Lou, you just keep on telling me that it’s the right thing for Patience and that I’m being an idiot for thinking otherwise.’

  Louise checked her watch. She needed to leave in fifteen minutes. This would at least have to be quick.

  ‘Well, that’s because it is the right thing to do, Pete. And I simply don’t understand why you don’t see that.’

  Pete moved around Louise and began to make tea, reaching into the cupboard for two clean mugs. ‘But Patience is mostly well, Lou, she’s stable, happy, we have funding for carers to look after her at home, it’s the status quo we hoped for. I don’t get why you feel things have got so bad.’

  Louise turned around again and waged war on the washing-up once more.

  ‘I think that’s because you don’t want to see,’ she said to a soundtrack of clinking crockery. ‘When I went to see her in the hospital after that fall, she looked… blank. Absent. And I catch her looking like that often now, even at home. I think maybe she’s in pain a lot, Pete, and we aren’t helping her because we don’t know where it is. What if that’s her future? You know, a slow but hideous slide downwards into constant pain? This gene therapy, it could give her the ability to tell us how she’s feeling, couldn’t it? That would be amazing. It would change everything for her – and for us. No more guesswork. And you know, maybe she wouldn’t need as much care? She could be more independent. The relentless round of social workers, doctors and physiotherapists and sleepless nights, that could end, too.’