Patience rarely cried, except when in pain. Eliza sat up and leaned forward.
‘Oh, lovely, are you crying? Please don’t cry.’
Of course I’m crying, dimwit. I’m crying because you are actually asking me how I feel.
Her face remained blank, but one solitary tear was forging a path down her cheek. Eliza reached for a tissue from a box beside the bed, and caught it.
‘OK. I think I know what you want. I hope I do. I love you, do you know that? I love you.’
I love you too.
‘Patience, my lovely! Have you time for that walk we planned at breakfast?’ Jimmy, clad in tight black jeans and a grey V-neck jumper, had come into the room in full flow and stood stock-still when he saw that Patience had company.
‘Ah, sorry, I didn’t mean to interrupt. I was just coming to get P to take her for a stroll into town.’
Eliza didn’t know where to look. Jimmy was undoubtedly attractive, if you liked that sort of thing; he had broad shoulders, a narrow waist, elegantly tousled short brown hair with just the right amount of floppy, and a mouth that appeared as though it was always about to smile. But it wasn’t his appearance that made it hard to look at him – it was what he’d witnessed on Christmas Day. No one from outside their family unit had ever seen them behaving anything other than cordially to each other. Even at home, the family had always been on their best behaviour when there were carers present. In Eliza’s mind, it was as if Jimmy had walked in on them all eating their lunch naked.
‘I… er… meant to get in touch actually, after Christmas,’ she said, standing up and then shifting awkwardly from one foot to the other. ‘On behalf of my family, I just wanted to say that I’m – I’m sorry it was awkward… Very awkward.’ Jesus, she thought, I sound like I’m reading a prepared statement. Her face began to feel hot. She looked at the floor. ‘Things are very difficult at the moment. As you may have gathered.’
‘Yes,’ he said, looking straight at her. ‘And don’t worry, I wasn’t upset and I’m not about to spread it all around the care home, if that’s what this is about.’
‘Honestly, I wasn’t suggesting that…’
‘Look, it’s fine. Anyway, do you want to carry on this conversation outside, where no one else can hear? You can walk with us part-way, if you like.’
Eliza nodded her assent and waited as Jimmy placed a warm cloak around Patience’s body, a hat on her head and mittens on her hands. Then he turned Patience’s chair towards the door and she followed behind them.
*
The sky was a glorious blue, criss-crossed with aircraft contrails, and Eliza felt her mood improve instantly. It had been murky and damp for weeks and now the fog had lifted, both metaphorically and literally.
‘Are you here for a break?’ Jimmy asked, speaking for the first time since they’d started their walk. They were now approaching the crossroads near a church. He was holding Patience’s wheelchair firmly as they waited for a break in the traffic.
‘Something like that,’ replied Eliza, tersely. The road was busy, and the traffic was almost stationary. A coach full of children was approaching them at a crawl. Eliza looked up and saw at least twenty young faces staring down at Patience. She could see that many of them were trying to attract the attention of the child sitting next to them, so that they could also gawp at the funny-looking disabled woman in the wheelchair. Several of them appeared to be laughing.
People always stared at Patience, and Eliza understood why: Patience looked different. Why wouldn’t a child have questions? But it was the laughter that got to her this time. She was fine with curiosity, that was understandable, but witnessing such apparent hilarity at her sister’s vulnerability triggered an unexpected rage that started in Eliza’s toes and rose through her like a rocket. Without stopping to think, she stepped forwards into the road and hammered on the side of the bus with her fists. She was roaring indistinct, guttural words, and the cold, hard metal was Ed, and it was her boss, and it was her mum and dad, and it was Rett syndrome.
Then, two arms grabbed her by the waist and dragged her back to the pavement.
‘What. On. Earth. Are. You. Doing?’ asked Jimmy, gesticulating at the bus driver to carry on, nothing to see here.
‘I’m just… I’m just… so…’ she said, hyperventilating. She couldn’t finish her sentence.
‘OK, OK,’ said Jimmy. ‘Look, there’s a church just here. Let’s go inside and sit down and we can talk.’
He let go of her, then, and set off, willing her to follow.
*
The church was both warm and open. Jimmy pushed Patience towards a circle of chairs in one corner, next to some kids’ toys and books. Then he moved a chair out of the way to accommodate her, facing her outwards so that she had something to look at.
‘I’m sorry about that,’ Eliza said, as if she was apologising for knocking into someone on the street. She took a seat opposite them and Jimmy wondered why she’d chosen to sit that way around, rather than sitting side by side.
‘I’m so sorry that you had to see that,’ she said.
Oh, my lovely Eliza. I so wish I could give you a hug.
Jimmy reached inside the bag slung across the bars of Patience’s chair, and pulled out a Tupperware container. He snapped the lid open, and passed it over.
‘Chocolate digestive?’
Eliza smiled with relief, glad of the distraction, of Jimmy’s attempt to lighten the mood.
‘Oh, yes… please.’
Jimmy is offering Eliza his chocolate biscuit stash. Uh oh. He never gives those out to anyone. I’ve changed my mind about him being gay.
‘Chocolate sorts most things, in my experience,’ said Jimmy. ‘That, and crisps.’
‘You are absolutely right,’ Eliza replied. ‘On both counts. But do you think chocolate is capable of fixing crazy?’
Oh my God, she’s smiling! I love it when she smiles.
‘I don’t think you’re crazy,’ replied Jimmy, looking down at the box as he did so. ‘Just very loyal.’
‘No, I’m crazy,’ replied Eliza, smiling now, her mood lifting. ‘Have always been crazy. It runs in the family.’
That’s it. It’s official. They are definitely flirting.
Jimmy passed her another biscuit.
‘So that’s not the first time you’ve hammered on the side of a bus full of schoolkids?’
‘Ha no, that’s definitely a first. I’m not usually that crazy.’
Well, quite crazy, actually, sister mine.
They sat opposite each other for a moment, munching biscuits in companionable silence.
‘My grandfather was a vicar, you know.’ Eliza had stopped eating and was now taking in her surroundings. The church was Victorian and would have been quite dark without its lighting system, which was casting a warm glow on its vaulted ceiling. There were no pews; the nave was home instead to orderly rows of upholstered chairs which looked, she thought, as if they might even be slightly comfortable to sit in.
‘But his church was nothing like this. We used to go there sometimes, when we were little. I remember it being cold, and the services seemed to go on forever. We stopped going when I was a teenager, though. Mum didn’t want to go any more.’
‘Why?’ Jimmy asked. ‘Why the change?’
‘Not sure why, to be honest. I didn’t really know them. We almost never saw them and they’re both dead now. I think she fell out with God too. She never took us to church after that. To be honest, churches creep me out a bit. All of the graves everywhere, the dark corners, the ritual. It all feels… oppressive.’
‘I’m sorry. I wouldn’t have brought you here if I’d known. I always think of them as welcoming places. I’ve been going regularly since I was a kid.’
‘No, it’s fine. It’s actually really nice in here,’ she paused. ‘Actually, it’s probably just what I need. I need calm. Peace. Ritual. Ritual is good when the rest of your world is falling apart.’
‘So your reaction b
ack there wasn’t just about protecting Patience?’ Jimmy asked.
‘No. I mean, I love Patience.’ She stood up and walked over to her, planting a kiss on her face and then sitting down next to her, beside Jimmy. ‘That goes without saying. But I think I just needed to be physically angry. It’s been boiling up inside me for a while now.’
‘What are you angry about?’ Jimmy asked. ‘If you don’t mind me asking?’
‘What am I not angry about? I told you, I’m crazy. There’s a list.’
‘It’s pretty normal to be angry,’ replied Jimmy. ‘I’m angry, too. Or at least, I was. I think I’m getting over it now.’ He leaned over towards Patience and retrieved a plastic beaker from the bag.
‘Why? You seem like a pretty chilled-out person.’
‘I wasn’t so chilled out when my dad was dying.’
Ah. Oh Jimmy.
Eliza remained silent while she watched Jimmy check the screwed-on sippy lid was secured properly, before lowering it towards Patience and tipping it gently into her mouth. It contained chocolate milk, from what she could make out. For a brief moment, Eliza considered giving him a hug, but she dismissed that thought almost as soon as it arrived. What was wrong with her today? She had taken leave of her senses.
‘I’m so sorry, Jimmy, that’s awful,’ she said, staying seated where she was.
Jimmy continued to give Patience her drink. ‘There you go, lovely, nice chocolate milk. I forgot the thickener again. I’ll be in trouble back at base. That’s the first time you’ve called me by my name, by the way,’ he added, addressing Eliza. ‘And you’ve met me at least five times now. I even came for Christmas.’
‘Really? I’m sorry. I didn’t mean anything by it. I hope you don’t think I was dismissing you…’
‘That’s OK. I think carers are a bit like nurses. We’re in the background a lot, expected to be there, but not noted.’
I sincerely doubt that Eliza has failed to notice Jimmy. How could anyone fail to see him?
‘Bloody hell, it’s not that,’ she replied. ‘It’s not like that at all! It’s really just that I’ve been so tied up in my own disaster of a life that I haven’t had much time to acknowledge anyone else’s.’
‘Have you had enough?’ Jimmy asked Patience. ‘No? OK, just a bit more.’ He turned to Eliza. ‘You mean, whatever’s going on between your mum and dad, and Patience’s accident?’ he asked, turning his attention away from Patience, briefly.
‘Yes, there’s that,’ she said, guilt creeping into her voice. ‘But it’s not just that. To be honest, it’s so complicated, I can’t really untie the knots in my own mind, let alone try to explain them to someone else.’
Eliza was visualising the tangled threads, each of which had its own figurehead: Ed, her boss, a wedding dress, her parents, Patience – and a baby dangling perilously off the end in a gigantic black buggy. It was a gargantuan mess that kept her awake at night and drove her mad during daylight hours. She could not untie it. The threads kept slipping through her fingers.
‘Try. It might help,’ he said, before turning back to Patience. ‘OK, now, P, I think you’re finished. Let me just find a cloth to wipe you up a bit.’
Eliza observed Jimmy’s sensitive, gentle, committed approach to her sister, and felt slightly dizzy.
‘No, it’s fine,’ she replied, too lightly. ‘I don’t want to burden you with my crap.’
‘Look. I won’t tell anyone. I promise. Let’s do this thing that I did with friends when I was a kid. If I tell you a secret, something that seriously compromises me first, then you have a weapon to hit me back with if I spill the beans. Deal?’
Eliza looked at him and smiled. ‘You’re nuts. Seriously? You did that?’
‘Yes, and it works,’ he answered. ‘So, I’ll go first.’
Jimmy had rolled his sleeves up and his sculpted forearms and strong hands were dabbing a tissue all around Patience’s mouth, mopping up spilled chocolate.
‘I get the bus to work. Or I cycle. That’s because I lost my driving licence last year. Drink driving.’ She looked at him, checking to see that he wasn’t joking. ‘I’m serious,’ he said. ‘And they don’t know at work. I didn’t want them to think badly of me. I was going through a bad time. I was caring for my dad who was dying. Motor Neurone disease. Do you know it? It robs you of your abilities, bit by bit, day by day, until you have no control over anything at all. Dad suffered horribly and I was so angry. Raging. I got pissed one night and took off in my car. I crashed it into a wall. Luckily there was no one in front of it, or I’d be inside for manslaughter.’
‘Wow,’ said Eliza. ‘Christ. That’s – that’s awful. I don’t know what to say.’
‘That’s OK. I know it is. Now, your turn.’
Eliza sat and thought for a moment. Then she stood up and started to pace around in a circle, a metre or so away, looking down at the floor as she walked.
‘It’s easier if I don’t look at you while I say this,’ she said. ‘I only ever usually confess to Patience. And she doesn’t really respond too much, facially, you know.’ Jimmy turned his seat around and sat in silence next to Patience, the two of them looking like a jury waiting for a plea.
Let’s have it. Tell him, Eliza. He’s a good listener.
‘OK, so, my fiancé has left me,’ she said, continuing to look at the floor, ‘and I don’t think there’s any chance that he’s coming back.’
‘And you have a wedding booked, right?’ said Jimmy, not missing a beat. ‘I heard the girls at the care home talking about it. One of us has to come as a guest, with Patience.’
‘Yes, there’s a wedding booked for the summer. It needs to be cancelled, but I haven’t told Mum and Dad because it would break their hearts. Before you ask. And they are going through enough.’
‘I see. But won’t it break their hearts whenever they hear about it? Don’t you think you should just come out and say it? Get it over with? Get things cancelled so it doesn’t cost too much?’
Yes, Jimmy.
‘No.’
‘Why?’
‘Because I am their happiness. I am the daughter who is going to make them proud at a wedding reception, the daughter who’s going to make them grandparents, the daughter who’s going to have a fulfilling career that they can talk about with their friends. I’m in PR. I used to love it, but I bloody hate it now! I’m useless at it, but if I change career I’ll have to start again and I can’t bear that either. They are going to be so disappointed in me. They spent so much money paying for me to go to university. It’s too late to change, and it’s too late to find someone new now.’ Eliza began to cry. Jimmy stood up and walked over to her.
‘Look, he’s obviously an idiot,’ he said, putting his arms on her shoulders and looking her right in the eyes. ‘And there is no fixing an idiot. They are beyond help.’
He’s making physical contact with her. Eliza is blushing. How do I feel about that? Not as bad as I’d feel if it was anyone else, that’s for sure. But still, that will never be me, and that smarts.
‘And I’m sure you do make your parents proud. Look how great you are with Patience. I’m sure they’re not that bothered about the wedding.’
Eliza reached into her pocket for a tissue. ‘I wish you were right,’ she said, blowing her nose. ‘But I’ve known my parents for thirty-six years, and I doubt it. And I’m a shit sister. I don’t do nearly enough. Lots of siblings of disabled people are total rockstars, taking on caring responsibilities and stuff. All I have to do is support my parents, really, and I’ve well and truly failed at even that.’ She began pacing once again, and Jimmy dropped his arms to his sides.
They are grown ups, Eliza, and you are amazing.
‘Look, Eliza, for what it’s worth,’ he said, trying to keep up with her, ‘I spent years trying to please my parents. I worked in Dad’s business, putting up fences and gates all across the south-west, hating it every day, because he said it was what I should do. It was man’s work, he told me. And I di
d it, for him. And then he got ill and died and left me, and I never want to see a fencing post for the rest of my life. I’m now finally doing what I want to do. You should try it.’
Eliza stopped and looked straight at him. A tear had wended its way down her face and was now hanging off her chin.
‘I can’t. I can’t change. It’s too late. In fact, I think I’m going slightly mental. And then there’s this huge mess with Mum and Dad. I can’t possibly add to their burden.’
‘Are you certain you’re not using this whole situation with your parents, the gene therapy, and Patience’s accident, as an excuse? To avoid facing the reality that your relationship is over?’
Oh. I don’t think that will go down well, Jimmy…
Jimmy had come right up to Eliza now and they were standing face to face near the altar. They were eyeballing each other.
‘How dare you?’ she replied, her face transformed from angst-ridden to anger-ridden. ‘I share my deepest fears with you and you accuse me of using Patience as an excuse? One of my teachers did that when I was a kid, you know – he suggested that I was using her existence as an excuse for behaving badly. It wasn’t true then, and it isn’t bloody true now. My whole life has been about protecting others, caring for others – it has never been about me. It will never be about me.’
Eliza didn’t wait to hear Jimmy’s response. Instead, she turned and fled down the nave and out of the door and into the street. It was only when she slowed from a run to a walk that she noticed it had begun to rain.
18
Pete
January 12
‘Break time, lads.’
This news was greeted with a limp cheer, the usually welcome prospect of milky tea and custard creams dampened by incessant rain which had welded thick cotton work trousers to their legs and forged rivulets along every contour of their bodies.
Pete wondered idly whether it was possible to get trench foot in a twelve-hour shift. He was only halfway through and the waterproofing on his boots had already failed. His feet were swimming in a cocktail of rainwater and sweat. He made his way to the Portakabin, jumping awkwardly over deep puddles and dodging the rutted remains of the property’s garden, which was well on its way to becoming a quagmire. On reflection, he wondered whether he preferred being baked alive to being dissolved.
Patience Page 18
