It was dark when Eliza drew up outside the house, but the lights in Patience’s bedroom were shining brightly onto the driveway, the curtains undrawn. Eliza locked the car quickly and used her spare house keys to let herself in.
‘Mum?’
Eliza turned into her sister’s room and saw that the bed, usually neatly turned down by carers, was a tumult of blankets and pillows.
‘E-lise-sa?’ The blankets stirred, and a head emerged. ‘Sorrrry, was jussst havin’ a nap…’
‘Oh, Mum!’
As Eliza approached the bed, the stench of alcohol grew stronger. Then there was a clatter as she knocked over a bottle of gin which had been deposited on the floor beside the bed. It was empty.
‘I’ll get you a glass of water.’
Eliza hurried out of the room and went into the kitchen. Dirty plates and cups were piled up in the sink and the encrusted remnants of cheap ready meals littered the surfaces. She opened the cupboards and finding no clean glasses, opened the dishwasher, only to be hit by the smell of rotting food and stagnant water.
Fighting the urge to vomit, she retrieved a glass from the upper level and washed it thoroughly under the tap.
She should have come sooner. She should have told work that she needed time off to deal with a family crisis. But after that incident with Jimmy in the church, and weighing up the abortion she knew she needed, she just hadn’t felt up to it. Now she felt incredibly guilty. Her mum needed her and she had been wilfully absent.
She poured some water into the glass and walked swiftly back into Patience’s room. Her mother was now sitting up in bed, rubbing her eyes. She was wearing pyjamas, even though it was only 7 p.m. Had she been wearing them all day, she wondered? Maybe all week? It certainly smelled like it.
‘Here you go, Mum.’
Louise took the glass without looking at Eliza. She drank deeply, draining it in a few gulps.
‘Checking up on me, are you?’ she said, handing the glass back.
‘Sorry, Mum. It wasn’t deliberate. I decided to come on the spur of the moment, after work.’
‘Hmm.’
‘Mum, I’m here now. And I want to help.’
‘Do you now?’
‘Yes.’
Louise glared at her.
‘Well, you can start by finding me some paracetamol. I’m not feeling very well today.’
Eliza located the tablets and took them to her mother along with another glass of water and a fresh set of pyjamas. Then she returned to the kitchen, turned the dishwasher on, emptied the bin and loaded the washing machine. After an hour, the room was at least sanitary. She considered their dinner options. As there was no food in the cupboards to speak of, she used an old takeaway menu she’d found behind the bin and ordered from it. They’d dine on Mr Wu’s special set meal B tonight.
‘Food should be here in half an hour,’ she said to Louise, who was now sitting with her feet up on the sofa under a blanket, like an invalid. ‘Are you feeling hungry?’
‘Maybe,’ Louise replied, pulling the blanket further up her body.
‘Good. You need food. There’s not much in the kitchen, Mum.’ Eliza perched on the end of the sofa, by her mother’s feet.
‘I know. I haven’t been feeling well, as I said. I haven’t been able to get out.’
‘OK.’
‘And since Patience isn’t here, I haven’t needed to go shopping.’
‘Right. She’ll be coming home in a few days, though, all being well?’
‘So they say. If they decide to trust me with her.’
Eliza put her hands on her mother’s blanket, stroking the legs beneath. Louise pulled her legs towards her body in response.
‘Mum, don’t be silly. No one is saying they don’t trust you. We just thought you needed a break. You’re obviously under the weather.’
‘Hmm.’ Louise crossed her arms and looked down at her lap.
‘It’s cold in here,’ said Eliza, rubbing her own arms to keep warm. ‘Is the heating timer on the blink?’
‘No, I don’t think so. I don’t have it on much, though. To save money.’
‘It’s freezing, Mum. And you and Dad aren’t that short of cash. Surely you can afford some heat?’
‘My bank account says differently,’ Louise replied.
Eliza smiled, as if her mother had made a joke. ‘Don’t be silly, Mum. Dad wouldn’t keep you short of money.’
‘You reckon? You think because he’s been working out there in Doha he’d have loads of cash to splash? Me too. But apparently not. At the moment, I’m getting through the cash he transfers in three weeks. The final week of the month is a wasteland.’
Eliza looked at her mother. She looked beaten. Exhausted. She definitely wasn’t laughing.
‘I didn’t know.’
‘No.’
‘I should have come home more. I’m sorry, Mum.’
‘You’ve got your own life to lead, darling, and a wedding to plan! I can’t expect you to stay at home with me forever, can I? Anyway, Patience will always be here, won’t she, so…’
Louise had meant that as a joke, and Eliza tried to smile.
‘Is there anything I can do to help?’ Eliza asked. ‘I mean, I don’t have much money either, but I could lend you a bit.’
Louise visibly softened. ‘Don’t be silly, darling, I don’t want your money. This will pass. All of it. You’ll see.’
‘I think you’re depressed, Mum.’
There was a pause.
‘Maybe. Or maybe it’s just a natural way to respond to what’s happened? I mean, Patience getting hurt on my watch, and then your dad… Anyway, it will pass, I’m sure.’
Eliza moved up the sofa and leaned in for a hug. They sat like that for a few minutes, enjoying the feeling of mutual security it brought.
It was Louise who broke the silence. ‘There’s something you can do for me tomorrow, though,’ she said.
*
‘Are you sure you’re up to this?’
It was the following morning and Louise had rallied significantly. She hadn’t had a drink all evening. Eliza, meanwhile, had spent a terrible night in the spare room, battling with heartburn, nausea and guilt-induced insomnia. Louise looked at her with concern. ‘I could have asked Philip if we could reschedule,’ she said.
Eliza mustered every ounce of energy she had left and smiled at her mother.
‘No, it’s fine. As you reminded me this morning, Mum, time is of the essence. I’m fine. Just tired. It’s been a tough week. But this is important.’
‘OK,’ said Louise. ‘If you’re sure. But let’s go to the café first. You need a snack. You look peaky.’
Eliza followed her, grateful for any opportunity to rest. Louise led her around a corner and into a small coffee shop, furnished with metal tables and chairs.
‘What do you want?’ Louise asked. ‘I’m buying, because you bought dinner.’
‘Oh, just a tea, Mum,’ said Eliza. ‘Black.’
Louise headed off to order the drinks. While she was away, Eliza wondered whether now might be a good time to break the news about the wedding to her. After all, she needed to know, so that she and Dad could use the money for something else. And she seemed a bit better this morning, a bit stronger.
‘There you go,’ Louise said, presenting Eliza with a polystyrene cup of tea and a paper plate laden with a Danish pastry, glistening with white icing and glacé cherries. ‘I got this for us to share,’ she said. ‘But it’s mostly for you.’
Eliza’s heart swelled, and her nausea evaporated. Suddenly, she was a child again, and Louise was taking her out for a special lunch, just the two of them, to celebrate her exam results, or the end of term.
‘Thanks, Mum,’ she said. ‘That looks wonderful.’
Louise sat down opposite her and took a knife to the pastry, cutting it into thirds. Eliza remembered her doing this with meals she hadn’t wanted to eat when she was tiny. If Eliza would agree to eat one third, she’d agree to eat the rest.
‘Mum,’ she said, suddenly deciding that this was the moment, this was when she would tell her, ‘I—’
‘I wanted to say how sorry I am,’ Louise said, cutting in. ‘It was unfair, me trying to make you take sides on this trial.’
Eliza took a deep breath. She must not be put off now. She had to tell her.
‘It means so much to me, you coming with me this morning,’ Louise continued. ‘Do you know, you’ve been one of the only good things in my life in the past year or so? Amongst all of the shit, you’ve been a shining light. I’m so lucky to have you.’
And that was it. She couldn’t do it. She just couldn’t.
‘I have been so worried about Patience, since her seizure last summer. I think that’s what set me off, with the depression.’
‘Have you seen a doctor yet, Mum? To talk about it?’
Louise sighed. ‘I’ve made an appointment. I am going, as you have all asked me to. Next week.’
‘That’s great, Mum.’
They sat there in companionable silence for a few minutes, finishing the pastry. Eliza reflected that it definitely wasn’t the first time she’d been unable to convey what she was really thinking to her mum; sadly, it probably wouldn’t be the last.
‘Shall we go?’ Louise said suddenly – clearly, Eliza thought, to avoid having to talk about her mental health for one more second.
‘Yes,’ agreed Eliza. ‘Let’s get this over and done with.’
They set off together, Louise leading her daughter through the maze of corridors to a door several floors up, where she knocked, and they waited.
‘Come in!’
Louise opened the door and held it for Eliza. She walked into the room and was hit immediately by a cloud of baked, stale air. It smelled of mothballs, dust and coffee. Sitting on a chair in the centre of this cloud was a man she presumed to be Philip Larssen.
‘Good afternoon, Louise,’ the man said, standing up gingerly and holding out a hand. ‘I’m glad you’re feeling a bit better.’ He turned towards Eliza. ‘And you must be Elizabeth,’ he said.
‘Eliza. Yes. That’s me.’
The man smiled. It was a kindly smile, a genuine one.
‘Sorry, yes, you prefer Eliza. I forgot. I forget a lot of things. Apologies. Anyway, please sit down.’ He gesticulated vaguely towards one of two chairs in the corner. ‘Thank you for coming. Did your mum explain what this was about?’
Eliza sat down next to her mother, who gave her an encouraging smile.
‘Yes, she did,’ she said. ‘I’m here to find out more about the trial?’
‘Yes. And then, as a consultee for your sister, to give permission – if you want to,’ he replied. ‘Now Louise. I’m sorry, my dear, but would you mind leaving us alone while we do this? As you’re involved in the trial, you shouldn’t really be here.’
Louise stood up and looked slightly flustered, as if she’d been caught shoplifting.
‘Yes, of course,’ she said. ‘Shall I come back in half an hour?’
‘Yes, that’ll be long enough.’
As soon as Louise had disappeared through the door, he set about rifling through the papers on his desk.
‘It must be here somewhere. I made sure I had a copy ready. Now, where is it…?’ He lifted up a mug and a browned apple core. ‘Here it is.’
Professor Larssen handed her a glossy brochure, which was now embellished with a circle of coffee on the front cover.
‘This is the literature we’ve produced. Your role, as I’m sure you know, is to make a decision about taking part in the trial on your sister’s behalf, because she lacks the capacity to do so herself. The Best Interests meeting will obviously rubber stamp it, but we’re certain that your backing will swing it for us.’
Eliza began to flick through the leaflet, which was illustrated with beautiful photos of people who all looked a lot like Patience.
‘You’ll find more detail in there, but to save us both time, here’s the executive summary, as it were. We are set to carry out phase one of a trial to see if gene therapy for Rett syndrome can be successful in humans. The disease has apparently been reversed in mice. We are uncertain if that will happen with humans, but we are going to run this trial to see. As it’s phase one, we will be starting slowly, with a low dose, so the effects may not be dramatic. But there is also risk. Please turn to page six.’
Eliza did as he asked.
‘These are some of the risks we’ve identified,’ he said. ‘It’s quite a long list, a frightening list, I know. Take some time to look at it, if you like.’
Eliza examined the list, her breath becoming increasingly shallow as she read each entry.
Confusion
Autonomic disturbance
Raised intracranial pressure
Anxiety
Seizures
Depression
Death
‘Death? That’s one hell of a risk.’
‘It’s impossible to predict how any trial like this will go,’ he said. ‘We have to consider all possibilities. But please be reassured that we are going to take every precaution with this – we are not going in like a bull in a china shop. We have high ethical standards.’
Eliza nodded automatically, although she had not meant to. She was struggling to take it in.
‘Yes – about that. I read the article, in the paper. About your previous trial,’ she said, her eyes focussed and her back straight. She had to let him know that she wasn’t a pushover.
‘Ah, yes. Do you have questions?’
Eliza pulled herself up, and took a deep breath.
‘Plenty. It sounded murky. You must know that. But Mum seems pretty certain that you’re legit. Are you? Who’s sponsoring this trial? And why have you got Mum involved?’
‘This trial is being sponsored by an American Rett syndrome charity. They are doing the trial here because our regulations are a little more relaxed. But I promise we have no Russian backing. It’s not some sort of “big pharma” conspiracy. We just want to find out whether we can do something amazing.’
‘And the other trial? The one with the Russian backers?’
‘I am confident that we will be cleared of any wrongdoing. It’s all a storm in a teacup. Complicated bureaucracy, and whatnot. Be assured that our standards of care and assessment of that trial were as fastidious as they always are for all our trials. And as far as your mother is concerned, well, Louise has looked into that and is reassured. And in terms of her role, she is helping me, as you know, to talk to parents of Rett people. That’s all.’
‘Mum…’ Eliza said, looking up from the document, signalling that she had finished reading the list. ‘Mum really wants Patience to do this, doesn’t she?’
‘Yes. But this isn’t about Louise,’ he said. ‘This is about Patience. And you are her advocate in this. You have to consider how she might feel.’
‘And that’s the huge problem with this, isn’t it? Patience can’t speak. We have never spoken. How am I meant to know what she feels?’
‘You have grown up with her; you almost certainly know her better than anyone else. Your mother and father excepted, of course.’
Eliza thought about the secrets she had shared with Patience, the tears she had shed on her shoulder, the knowing looks that had passed between them over three decades. And then she thought about that tear in Patience’s eye the last time she’d seen her. It might have been nothing – an allergy, an irritation, pure fluke – or maybe, just maybe, it was something else. She had felt, in that moment, that Patience was telling her to sign her up, to give her a chance.
And what about those hands that she had always wished could play cards with her? That voice she had always wanted to sing a duet with? Those legs she had always wanted to dance by her side on nights out? This was not only Patience’s big chance – this was hers, too, her opportunity to get to know the sibling she had spent her whole life with, but didn’t even know.
And if Patience was better, her mum and dad would be free – and she would also be free. Because Patience could make her parents happy, when she had failed.
Surely that was worth the risk.
Or was it?