It’s a nice voice. Warm and rich, not squeaky or whiny. I could listen to myself all day. That’s why I’m talking to myself, you see. I sound fabulous, and it’s the only conversation I’m ever going to have, after all, so I make the most of it. I imagine I’m narrating my own autobiography. It would be quite a racy read, I reckon; I get to say whatever I want about whoever I want, and no one is ever offended. It’s almost a superpower.
So – in my special world, my personal world, I exercise my vocal cords and my working limbs in a network of cherry-picked locations, all under a reliably warm sun or gently falling snow, the kind you want to catch on your tongue. Oh yes! My tongue works well in there, too. It’s not a stupid wedge of spam any more. No, I can stick it out, roll it around, make clicking noises on the roof of my mouth to accompany the music I’ve chosen as my soundtrack. Which is mostly Take That, of course. So when I look like I’ve switched off a bit, you should know that I am actually running through a field of daffodils, or sledging down a hill, or wandering through a glasshouse full of hundreds of beautiful butterflies.
Oh, sod it! The doctor’s here and he’s carrying a tray with yet another needle. It’s poking over the edge, taunting me.
‘Patience. Hello. I’m Paul Roberts.’
He would be handsome if he didn’t have such a stupid beard.
‘I hear your veins have been proving tricky. Let’s see if they can withstand the Dr Roberts’ magic…’
Oh God, he loves himself. And here we go again. The needle pierces my skin and the nerves dispatch pain up to my brain with incredible accuracy and speed.
Argggghhhh…
Right. Distraction, distraction – where were we? Butterflies. Yes.
I adore butterflies. There’s a buddleia bush outside my window at home which attracts them and I eagerly anticipate their arrival in spring and mourn their departure every autumn. I am mesmerised by their vibrant colours, their mirrored patterns, their rhythm. I envy their freedom to float from one bud to the next on a whim, their ability to cast their ugly, tubular bodies aside in favour of miraculous painted wings. A few years ago Eliza bought me a mobile made up of glass butterflies. It hangs above my bed at home and, when the sun catches it, it paints bright splashes of colour onto my cream walls, like a stained-glass window, or a piece of abstract art.
Butterflies are one of my ‘small joys’. Whenever I spot one of these joys, they always call me out of my internal world and bring me back to the present. I have hundreds of them, such as a spider spinning an intricate web over one corner of my window, its labours casting an ever-increasing maze on the wall; a song coming on the radio that I actually like; our dog, Tess, a languorous black Labrador, licking my toes. When you’re only ever the recipient of things, ever the object and never the subject, you are forced to digest them, to ruminate on them, to really see them…
… Fucking hell, he’s still at it.
‘Almost done…’
Liar.
‘Nearly there…’
Still lying.
‘There we go, all done! I told you that the Dr Roberts’ magic would win the day.’
He’s smug, but I like him.
I can feel the cool fluid rushing in now, at last. I’m going to have a horrible bruise there though, aren’t I? And that means I’m going to be in pain, because my hands are a magnetic pair, attracting each other without my say-so. They’re going to grind into each other whether I want them to or not. Currently, for example, my left hand is desperate to reach its opposite number, despite the fact that my right hand is tethered to a drip. Mum keeps trying to stop it, because I could easily pull the line out by mistake. And who wants to go through that palaver again? I definitely don’t. But even so, this enforced separation makes me feel strange, like a circuit has been interrupted.
And it seems that epilepsy makes me feel really strange, too. I went a bit cuckoo there for a while, even more cuckoo than I am normally. It’s unusual to develop epilepsy so late. I hope that’s not a sign that I’m going downhill. I wonder what they’ll give me for it? Rosie, in the respite care bungalow, has epilepsy and she has to take a special tablet. Perhaps they’ll give me that to control it. But as I can’t take tablets and I struggle with liquid, they’ll have to give me suppositories again, won’t they? I hate those bloody bottom bullets. My bum is a fun-free zone, all practicality and no pleasure. No one’s ever looked at it for fun, least of all the five families (I counted) who were pushed aside at the concert as I flailed at the railings, my pad and sexy gauze shorts clearly on show.
While we’re on that theme, you should know that the view from that ‘disabled row’ was pants. I always imagine a ‘disabled row’ to be made up of chairs missing several legs and lots of bolts, but – I digress – we were miles away from the stage. The band looked like toy soldiers. We were also at least twenty metres away from any other seats; we had our very own disability fallout zone, in case we had something catching. Having said that, it was also within easy reach of the bar (for the carers) and the disabled toilets (for the incontinent), so there’s that.
I have had better seats at gigs. At my first, at the Birmingham NEC in the 1990s, we sat at the front, just to the side. We were so close to the stage that when Robbie came to sing to our section, I could make out the beads of sweat dripping down his chest. I remember grinning at him like an idiot, hoping to catch his eye, momentarily forgetting that I was not a buxom teen wearing a tiny crop top and a winning smile. He would only ever look at me in pity. Not just him, of course. Everybody does.
I need to distract myself from that thought, so I’ll return to the hospital room for a bit; there’s a small joy there, waiting to be appreciated. There’s a bird, I think it’s a blue tit, sitting on one of the branches outside my window. It’s looking straight at me, at the strange blonde girl in the big bed and at the knackered-looking woman by my side.
I’m not able to turn my head very far, but I know that Mum is still there. She is always there. She’s only left me for a couple of hours to go home to shower and change. I opened an eye when she returned a few hours ago and she looked dreadful; the lines around her eyes seemed even deeper than usual and her hair was pulled back roughly into a ponytail, wisps of it frizzing out at all angles. That’s just like her, going all the way home for a shower and not even taking the time to brush her hair before she came straight back again. She doesn’t look after herself. In fact, I’d say that she’s been deliberately damaging herself for some time now.
I wonder if I should make a noise so that she knows I’m OK? I should probably put her out of her misery.
Someone’s coming.
It’s Eliza. She doesn’t look good either. Well, to the average person she probably looks OK, but I’ve been watching her intently all of my life, and it’s clear to me that something is up. The make-up is a little too new, her eyes are suspiciously pink, and she’s dusted powder all over her face, the pallid hue absolutely failing to mask a shiny red nose.
‘Mum! Thank God I found you at last! The nurses were all vague and the information desk people were useless. I tried calling you but you didn’t answer.’
Eliza walks over to Mum and bends down and kisses her cheek, before turning towards me and taking hold of my left hand. Mum looks at Eliza then, although not very closely. I don’t think she’s really looked at Eliza properly for years. ‘I’m sorry, darling, I had my phone on silent. Having a nap,’ she says.
‘Mum, you must go home for a proper sleep. It’s getting late. Have you been sitting here all day?’
‘No, no. I’ve been having regular breaks.’
Liar, liar.
‘Where’s Dad?’
‘He’s on his way back right now. But only for a flying visit. His boss wants to go on holiday. You know how it is.’
I know how it is. Dad working overseas means that Mum is mostly a single parent these days. In fact, Mum and Dad seem to me to be single people who only live together on special occasions. It seems to work, thou
gh. Well, they’re still married, anyway.
‘How is she doing?’ asks Eliza, stroking my cheek.
Mum sighs, a sound that I know well. It is a sign that signifies drama, something this family is never short of. That’s all my fault, by the way. Just so we’re clear.
‘I think she’s going to be OK, but they say she has epilepsy now. I really thought we’d escaped that particular evil, but it seems not. They’re going to do an MRI to check for anything nasty in her brain, but it’s most likely just a random change in her make-up. They want us to medicate. I’m fighting it. I think it will sedate her.’
‘But surely she’ll keep having fits if we don’t give it?’
‘Who knows? This could be a one-off. What if it’s a one-off and we give her lots of unnecessary drugs she doesn’t need? No, I think we wait,’ she says, winding down the drama in her voice. ‘Watch, and wait. And then there’s the broken collarbone.’
‘It’s broken? Wow.’
‘They only found it because I insisted they chase up an X-ray. Seriously, I think they just see someone like Patience and then decide she’s not worth the effort. If I hadn’t been here…’
Eliza is now staring out of the window. Mum notices, eventually. ‘Anyway,’ she says, changing gear, ‘they are going to fit her with a sling; apart from that, it’s just painkillers and ice packs. Poor Patience. It must really have hurt.’
It does hurt. It’s still throbbing.
Eliza sinks into the chair on the other side of the bed and looks plaintively at me. There is silence for a short while. She reaches into her bag for her phone and looks at it. Whatever she was looking for, it doesn’t seem to be there.
‘Why didn’t you pick up your phone when I called you this morning?’ Mum asks.
‘Just like you, I had it on silent, Mum. I’m sorry. Stressful day at work. I didn’t want to give my boss any more reasons to complain about me, so I put my phone out of sight.’
A little too quick with that answer. A little too ready with that one.
‘Is she being difficult again? Are you having a hard time of it?’ Mum asks, with genuine concern in her voice, but she’s still looking at me, not Eliza.
‘No, it’s fine, honestly, just short-term crappy.’
‘And how’s Ed?’
‘Oh, he’s great, Mum, thanks, just working hard too. He says he’s sorry he can’t make it today, he really wanted to, but he’s tied up.’
Far, far too light-of-voice with that one, I think. There’s definitely something up.
*
‘Lou? I’m so sorry, I got on the first flight I could!’
I open one eye and see Dad standing in the doorway, the strip lights in the corridor casting him in shadow.
What time is it, I wonder? I nodded off there for a bit. The lights aren’t on over my bed and it’s definitely dark outside, so it must be late. Or very early.
‘Pete?’ Mum says, with a yawn. ‘What time is it?’
‘It’s 2 a.m.’ The latter, then.
‘Oh. I think I was asleep.’
Poor Mum. The nurses seem to think that because I’m an adult, she doesn’t deserve a camp bed, so she’s been forced to spend the night on an upright chair, propped up against a concrete pillar. She’s lucky, I suppose, that they didn’t try to enforce visiting hours.
‘You were. Sorry to wake you.’
Dad walks over to Mum and she stands up gingerly; they embrace.
‘I’m so sorry I wasn’t here,’ Dad says, his head resting on her shoulder, his arm rubbing her back. ‘I’m so sorry you’ve been dealing with this alone.’
‘Don’t be silly,’ Mum replies, shrugging. ‘It’s always a risk, with you being away. The main thing is that you make the effort to come home and be here with us when we need you. That’s what matters.’
Dad looks at me. I open the other eye and can just make out his expression in the twilight; he looks worried, sad and old. He is a handsome man, Dad, but he seems to be ageing rapidly now. I hate it. I want him to live forever.
‘Oh, you’re awake, Patience,’ he says. ‘I’m so sorry I woke you. But I’m here now. We’re both here.’
‘Did you get my message?’ Mum says. ‘About her collarbone?’
‘Yes, I got it when I landed,’ Dad replies, walking over to get a plastic, stackable chair from beside the door. ‘Bloody hell. That’s insane. How on earth did she manage to do that?’
‘My guess is that Morton Lodge didn’t want to tell us how bad it was, because she obviously wasn’t wearing her seatbelt. It’s negligence, isn’t it? I told you we couldn’t trust those carers with her. If only we could have her at home all of the time, she’d be safe.’
Dad puts the chair down next to Mum and sits on it. ‘Now come on, Lou. You need those breaks. Everyone does. And those carers – they do care about her, we’ve both seen it. Everybody makes mistakes.’
‘Well, mistakes with Patience can be life-threatening. They shouldn’t be making them.’
‘To be fair, they wouldn’t have expected her to have a seizure. None of us expected that.’
‘No.’ Mum sounds a bit defeated. She does that when someone cuts through her defences. It’s something only Dad can really do.
They both look at me for a moment, in silence.
‘Do you think the seizures… do you think they’re a sign of things to come?’ Dad asks, quietly.
‘I hope not,’ says Mum. ‘She’s got every other bastard symptom of Rett syndrome, I was hoping she might see out her days without this one.’
‘What if…?’
‘I know, Pete. I know. But let’s not, OK? Let’s not go there. Not now. She’s recovered from everything else. She’s a fighter.’
I can just make out Dad reaching for Mum’s hand and her accepting it. And then there is quietness and a feeling of unity in the darkness.
I close my eyes and drift away somewhere deep inside, temporarily escaping my pain.
5
Louise
August
‘Who’s a lovely girl? You are.’
Tess stared up at her with a look of apparent devotion, her black velvet ears framing wide, glossy, doting eyes, prompting a fleeting flicker of happiness in Louise. She had resisted getting a dog for years, concerned about the additional responsibilities that came with it. But she had discovered, belatedly, that the constant companionship was well worth the effort. It was reassuring to know, on the nights when Patience was away and with Pete being overseas, that there was another warm, sentient being in the house with her. If Tess hadn’t been there, Louise knew that she would have become overwhelmed by the memories, frustrations and anxieties that haunted her home. They lurked around every corner, ready to flood into the silence.
Louise opened the back door so that Tess could go out for a pee. The Labrador gave her a grateful look before bounding out onto their weed-infested lawn, which was drenched in morning dew. The grass, such as it was, was now several inches high and needed cutting, but it would have to wait for Pete. He was long gone, of course; called back to Qatar almost as soon as he’d arrived. He couldn’t afford to lose his job, not with the way things were, so she had let him go without a fight. She was used to handling these things alone now, anyhow.
Louise remained by the door for several minutes, her addled brain not yet capable of issuing more instructions to her body. She had been woken up half an hour ago by the rattle of Patience’s first conscious breaths from the baby monitor on her bedside table, after only a few hours’ sleep.
In truth, she was still in hospital mode, losing consciousness only fitfully, fearful that Patience’s condition might deteriorate the minute she allowed herself to switch off. The carers who had been sent to nurse Patience at home for the first two days after discharge had not been able to persuade her to go to bed.
Patience hadn’t had another seizure yet, and that was something to cling to. Louise had been told that there was a chance that it might be her one and only; she dearly hope
d that it would turn out to be so. She was still waiting for the referral to go through to the neurology team. That battle was still waiting to be fought. It had joined a long list of future battles for which she felt increasingly ill-equipped. Louise’s armoury was dented, battered and bruised: remaining on a war footing for years had taken an inevitable toll.
It was one of life’s heavy ironies that they had tried so hard to have Patience. They had desperately wanted a second child, but it had taken them five years to conceive her after Eliza. Louise had suffered several miscarriages in the intervening period, each one a physical wrench and an emotional low.
They had named her Patience because they had required so much of it, waiting for her to arrive. So when she finally did – puffy, blotchy in all shades of red and pink and with a swollen face only a mother could love – they were simply relieved the battle was over. If only they’d known that it was just beginning.
Patience had inherited Louise’s blonde wavy hair and her dad’s hazel eyes, rimmed with long eyelashes. Once she’d recovered from the shock of birth, it was obvious to everyone, biased or not, that she was beautiful. All their thank-you notes for the gifts lavished on her by family and friends had included a line about how lucky they were to have two beautiful, healthy daughters. And just as she had done with Eliza, Louise had started to make a keepsake book of baby memories for Patience, keeping a first lock of hair, her wristband from hospital, prints of her little feet. She’d also provided a somewhat edited account of her birth, and had written about what her first days at home were like – or at least, what she could remember through the blur of the post-partum exhaustion. But now it was all hidden away in a box in a dusty cupboard, with only the first ten pages filled; the rest of the book – the bits about baby’s first steps, baby’s first day at nursery, baby’s first words – remained unfilled. There had seemed no point in writing more, because Patience would never read it.
It had taken about eighteen months of Patience’s life to acknowledge that something was genuinely amiss, but the signs had really been there from the beginning. They had both seen them and then decided, individually, to try not to notice, she thought. Patience had never rolled over or crawled, preferring instead to shuffle about on her bottom. She and Pete had tried so hard to get her to form words properly, to imitate the sounds they’d made. Patience had tried so hard to please, too, managing to say ‘Da-da’, and attempting ‘duck’. (‘Dut, dut,’ she’d said, over and over again, with a beaming, mostly toothless smile.)
Patience Page 3
