‘Please don’t upset yourself, Louise,’ said Professor Larssen, his voice soft.
‘It was on your bloody side-effect list! You knew it could happen,’ Pete said, his voice raised.
‘You’re quite right,’ the professor said. ‘It was on our list, and we shared this with the trial participants. But we thought it unlikely.’
‘Yes, well, whatever. It’s too late now anyway. She’s like this. We can’t take it back. So, what are we going to do?’ asked Pete, staring the professor down. ‘More to the point, what are you going to do about it?’
‘We have considered antidepressants’ – the professor looked across at the GP, who nodded her agreement – ‘and we think that might be a good start. But one of my team has also suggested that we try a new communication therapy to see if Patience has things she wants to say. We know that communication problems greatly contribute to depression.’
‘Oh, this is ridiculous! Patience is a child,’ said Pete, his voice loud and determined. ‘I know she’s in an adult’s body, but she’s my baby. She has always been my baby. She laughs at things that toddlers laugh at, she thinks rattles are great fun to shake, and she thinks The Muppets is the best thing on TV. She’s not going to be able to tell us anything.’
‘But she doesn’t laugh at those things any more,’ said Maggie, speaking up for the first time. ‘We have tried all of her DVDs and even Take That isn’t making her smile any more. It’s like she’s switched off from life.’
‘What do you mean by communication therapy?’ asked Louise, who was still gripping Eliza’s hand.
‘It’s a computer screen that’s controlled by eye movements,’ he replied. ‘It starts off with simple choices, like different kinds of drinks or food, or asking to go to the toilet and so on, and then it gets more advanced as they learn. I understand that researchers are seeing great results, particularly with newly-diagnosed Rett patients. We are happy to pay for the equipment for her, to see if it helps.’
‘But she’s not a child, is she? Her brain is going to be hard-wired. So it’s not going to work, surely, is it?’ Pete was insistent.
‘I think it’s worth a try,’ replied the professor.
‘I think anything’s worth a try,’ said Eliza, taking in the absolute despair on both of her parents’ faces. She thought of her sister, lying inside the superheated bungalow, occupying her own personal version of hell. ‘When can you get it to us?’
36
Patience
July
This corridor is pockmarked by spots of absolute darkness. It’s lit by far-flung gas lamps and these flicker as I pass by, heading deeper under the surface. It’s no different from the many different routes I’ve taken this morning; each one is just as dingy, just as repetitive, just as obscure. The floor is damp and my feet are caked in mud, and each step sends dirt flying up in a cloud around my ankles.
‘P? P? It’s Jimmy.’
Now I need the loo. I hate it when I need it down here, because there are no toilets. I have to wet myself, and the urine is only warm at first. Then it chills quickly, sending sharp stalactites down to my ankles.
‘P. I’ve got something for you.’
There are no beds down here either, but I find I can manage to doze off standing up, resting against the curved walls.
‘P. Please open your eyes. I know you’re not asleep. I have something I hope you’ll like.’
I will do it for him. Only him. Even though I am disgusting and deformed, the opposite of all beauty. He’s only nice to me out of pity.
I open my eyes slowly, not wanting to let the world back in too quickly, because this world is not what I thought it was. It’s far crueller than that.
‘Ah, there you are. Hello P. Look at this. This is for you.’
He’s holding what looks like an iPad in front of my face. It’s got several pictures on it; there is a cake, a chocolate bar and an ice cream.
‘This is an eye-gaze screen, P. If you look at something, it should light up. Come on, have a go.’
Jimmy is looking at me through his beautiful eyelashes and he seems so keen. Who am I to say no to him? And things can’t get any worse, anyway, can they? I open my eyes a little wider and decide to look at the ice cream. After all, there’s been a bloody heatwave for most of this summer. I am sweating like a pig.
There’s a loud ping, like one of those sounds you get when someone receives a text message.
‘That was the ice cream. Did you choose the ice cream, P?’
A strange sound escapes from my mouth. I swear I didn’t make it, but it sounds like ‘Arrrrrrrr.’
‘OK, OK. Right. Let’s try this one.’
There are now three pictures. One is a glass of what looks like milk, the other is a bed, and the final one is a toilet. And that is just what I need, as I realise that I’m about to wet myself. I stare fixedly at the toilet.
‘Do you need the loo, P?’
‘Arrrrrrrr.’
‘Just a minute, P. Magda!’ he shouts. ‘I need you to take Patience to the bathroom.’
*
I don’t know what I’ve done to deserve it, but Mum, Dad and Eliza have all decided to pay me a visit this evening and they’ve brought ice cream with them. It’s chocolate flavour, and there are chocolate flakes, too, but they don’t give me one. In case I choke, of course.
I suppose it’s time I owned up to a couple of things.
Firstly, I think I can bend my fingers. Wilfully, I mean. I’ve been practising at night when no one’s looking (I don’t want to freak them out – they’ve hospitalised me for less), and I’ve managed to get my hands to do my bidding a few times now. I thought it was a fluke the first time, but as I say, I’ve replicated it, so it must be real, right? I can scratch myself. I can even draw blood with my nails if I want.
The other thing is my tongue. For years, it’s sat in my mouth like a slab of spam, unable to manipulate food properly, causing me to nearly choke to death several times. Now, though, it seems to be more mobile and it’s responding when I try to move it to one side, or up and down. This is easier to do with no one watching – I don’t want them panicking, see above – and I’m getting good at it. I’ve noticed, too, that if I exhale, I can make all sorts of different noises with it, which is fun to do. It’s not quite working as well as it used to do in my internal world, but perhaps that was unrealistic?
I haven’t shown them my new tongue control yet; it’s sort of like having a hidden superpower. But I think perhaps seeing me eat ice cream has given me away; they watch me silently as I roll it around in my mouth, savouring its taste and texture, before swallowing it on my first attempt.
Jimmy has been showing Mum how to use the machine with the pictures on it. She’s choosing some stuff to try now. When she’s satisfied, she turns it round towards me and presents with me two pictures. One is Take That, and one is Kylie. This is an easy choice.
‘Ha, Take That, I should have known,’ replies Mum, wittering away delightedly, her mind already on the next choice she wants to put to me.
‘Why don’t we try words?’ suggests Jimmy. ‘We could read them out to her maybe?’
Dad raises his eyebrows, but Jimmy is undeterred. He takes the machine from Mum and selects a few options.
On the screen, there are the words, ‘I feel’.
‘Those words are “I feel”,’ says Jimmy.
Yes, I know that, you div.
‘And then these words beneath are: tired, hungry, thirsty, sad, happy. Can you see those?’
I can. I have learned to read a bit over the years. I’ve had a lot of time to piece things together.
‘OK, so take a look at them all and then stop at the one you feel like,’ he tells me. Behind him, I can see Mum, Dad and Eliza leaning over in my direction, all of them apparently holding their breath.
I think for a moment. I am a bit tired, but I don’t want to go to bed. I’m not thirsty, and for the first time in weeks I don’t feel really sad. That might b
e the medicine they’re giving me in the mornings now, but it might also be this little machine and the incredible gateway it has just opened. It makes me feel a bit… free.
I choose hungry.
‘Hungry? OK. Take a look at these options.’
I now see a selection of foods. I choose the one that appears to be chocolate.
‘Chocolate? OK. Right. And these?’
There is chocolate milk, chocolate cake, and a chocolate bar. Obviously, I choose the latter.
‘You want a flake, darling?’ says Mum, suddenly getting it. ‘Pete, quick, for heaven’s sake, get her out a flake.’
And I laugh.
And then the whole room laughs with me.
37
Eliza
July
‘Holyfuckingfuckfuckingcrapfuckinghell…’
‘I am getting there as quickly as I can, madam.’
Eliza raised her head slowly from its position between her knees and saw in the reflection in the rear-view mirror that Saleem – the unflappable, smiling, hardworking owner of Kidlington Kabs – was genuinely alarmed. And now that the wave of pain had subsided, she felt an inkling of embarrassment about screaming swear words in front of the man who usually drove her parents home from the pub. So she tried breathing deeply instead; or rather, as deeply as she could manage, given that most of her trunk was currently occupied by another human.
‘That’s good, madam, my wife was telling me that breathing helped,’ said Saleem, beaming toothy encouragement into the mirror. ‘And have you tried panting? She did a great deal of panting.’
Well, bully for her, Eliza thought. She was exhausted already and not in the least interested in trying to sound like the family Labrador. This was awkward enough.
Eliza scanned the back seat of Saleem’s black Mercedes estate for her phone, which she had flung aside just as the last contraction had begun. She eventually found it in the pocket in the right passenger door, sitting pretty alongside a pack of complimentary tissues. She might be needing those, she thought. She speed-typed a text message.
Mum I’m in labour and you need to come back right now.
Hmm, on second thought, a text like that might cause her mother to have a coronary. Mum was not the type to respond calmly in a crisis. And it was hardly practical, anyway – she and Dad were currently about 33,000 feet up in the sky, en route to Dublin. The captain could hardly turn the plane around, even for the arrival of a grandchild. No, they’d have to get off and then immediately buy a ticket back and her SOS would ruin a long-awaited weekend away together, which they definitely deserved. She’d better not send it. Yes, she’d let them have at least twenty-four hours of peace before she told them the news. They’d be back soon enough. Refraining, coping on her own, was the grown-up thing to do, after all. She needed to grow up; she was going to be a mother.
But why, why did this baby have to arrive three weeks early? Everybody had told her that first babies took ages to come out, that she’d finish up the third trimester rolling around like a walrus, chugging raspberry leaf tea and chicken vindaloo by the gallon, desperate for anyone, anything, to get the sodding thing out. It was this certainty that had led her to assure her parents that it would be perfectly fine for them to squeeze in a mini break away together this weekend.
Yes, of course, she’d said: I’ll look after the dog. Yes, no problem, I’ll water the garden. You go and enjoy yourselves! I’m just going to sleep most of the time, anyway.
Sleep? Feck. Not much chance of that now.
Arrrggggggggghhhhh, another one. Fucccccckkkkk. She needed someone to hold her hand.
Serena. She’d text Serena.
Help. The baby’s coming and I need you to come! Mum and Dad are away.
Eliza concentrated on breathing in and out as she felt the pressure building in her abdomen and making its way inexorably upwards. That bloody witch at her NCT class had told her that this would feel wonderful and empowering, the pinnacle of her womanhood. But she had lied, damn her. This was excruciating and she was clearly powerless to stop it. This baby was forcing its way out into the world and she was merely its conduit.
Her phone beeped.
Oh crap – am visiting York with Mum but I’ll set off now. With you asap. Hang on in there.
York to Oxford – what was that? Three and three-quarter hours, best case? More like four hours plus, if Serena was going to take her mother home first. Bugger. She was going to be on her own for a while. But that was OK, wasn’t it? She had managed on her own for a long time. She was a strong, independent woman. Definitely. She had got this.
Oh, but should she call Ed? He was the father, after all. He could hold her hand and help her breathe…
Fuccccckkkkkkkkkkk. Buuugggggeeeeeerrrrrrrrrrr. Arrrrssssssse.
Second thoughts, there was no way in hell that man was going to see her like this. Why should she let him see her at her most vulnerable? He’d hurt her deeply and she didn’t need any more damage in that department. And it wasn’t as if he’d been an enthusiastic expectant father; he had failed to attend every single ante-natal check, sometimes cancelling at the last moment. ‘Work,’ he’d said, every time. No, she’d tell him in a bit. He was only a few miles away and could get there quickly, anyway. It would be better if he came towards the end. Or even afterwards. That, actually, is what he deserved, she decided.
‘We are almost there, madam. Just one more roundabout.’
Eliza was now staring fixedly at a speck of dust on the mat beneath her feet, but the way her body was slipping back and forth on the black leather seat told her that Saleem was now throwing the car around the bypass with wild abandon. He was probably worried that her waters would burst and damage his upholstery and, to be fair, she didn’t blame him. It was quite likely. She was surprised they hadn’t gone already; what had begun as period pains a few hours ago had developed quickly into an agony so severe that she barely had time to breathe between contractions. This baby clearly didn’t want to wait.
Eliza raised her head and saw that they were approaching the hospital building. She decided to send one more text. Because when she needed comfort, she knew where to get it.
Hello. It’s Patience’s sister. I’m in labour. Please bring her to the hospital asap, please.
*
‘Well, won’t you look at that,’ Natalie the midwife said, her hand and wrist currently exploring the dark recesses of Eliza’s cervix. ‘You’re eight centimetres. Baby will make their entrance soon.’
Through the swirling mist of Entonox, Eliza pondered the midwife’s use of pronoun. Eliza’s grammar pedantry became worse when she was anxious or in pain.
The pain did, however, have one benefit. It was a distraction from her high levels of anxiety about this pregnancy. Having decided that she definitely wanted to keep her baby – how she could ever have thought differently baffled her now – her focus had shifted to an obsession about its health. She had feared that every twinge meant a miscarriage, and that every check-up would bring bad news. She had held her breath throughout her first scan at the hospital, examining the technician’s face for any sign that she might be withholding information. She had drunk alcohol during the early days of pregnancy, had eaten goodness knows how much shellfish and unpasteurised cheese; there were so many ways in which she could have done this child harm. And in the back of her mind – no, who was she kidding, in the front of her mind, too – she thought of her mother’s innocent joy at birthing two healthy children.
What if her baby was disabled and she just didn’t know it yet? Even though all of the tests so far had come out negative, she knew she was far from out of the woods. There was still no in-utero test for Rett syndrome, and who knew how many other rare genetic faults.
‘All done,’ Natalie said, snapping off her latex gloves and walking over to the sink to wash her hands. ‘After this, I’m just going to pop a monitor onto your tummy for a bit, to check how baby’s doing.’
‘Is that normal?’ Eliza asked, he
r eyes wide. ‘Is there something wrong?’
Natalie smiled and approached the bed. ‘It’s totally normal, sweetheart,’ she replied, fixing the strap around Eliza’s bump. ‘Try not to worry. You’re doing great. Have you got someone coming to be with you?’
‘Yes,’ Eliza said. ‘My sister. She should be here soon.’
‘Lovely,’ Natalie replied, adjusting the monitor to locate the baby’s heartbeat. ‘That’ll help. And I’ll get someone to bring you a cup of tea. That’ll calm you. And do you feel peckish? It might be good to keep your strength up. We could bring you toast?’
Eliza felt another contraction building, and with it a nausea which was now undeniable. She had never felt less like eating in her life.
‘Just tea, please,’ she replied, attempting a smile through gritted teeth. Natalie nodded and headed to the door as Eliza rolled onto her side, groaning.
Five minutes later, when she was in the only position she found even remotely comfortable – on all fours, hospital gown gaping wide, her naked bottom saluting the sun, or rather, the strip light above her bed – someone knocked on the door. Natalie again, she thought; what medical horror had she planned for her this time?
But it wasn’t Natalie.
‘Tea? And I’ve brought some toast in case you… Oh!’
It was a man’s voice.
Shit.
And then it all happened at once. As Eliza yelled ‘Jimmy!’ she rolled onto her side at speed in an effort to hide her elephantine nakedness. But she was too big, her body too unstable, and the bed too narrow. She screamed as she lost her balance and fell, as if in slow motion, off the side of the bed and onto the floor.
‘Shit, shit, shit, sorry. Shit. Hang on, I’ll hit the button.’
Suddenly, Jimmy was standing beside her. She felt a searing pain in her abdomen and howled. He crouched down and put his arms around her.
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