‘So, you said you weren’t sure this will work. Does that mean you think it’s pretty likely that it won’t? Are you basically telling us it’s a waste of time?’
‘No, no, nothing like that,’ the professor replied. ‘I am actually fairly optimistic. I do think this has a good chance of working. Don’t get the wrong impression. I am merely trying to equip you with all the facts. As I said, we are only going to give a low dose this time, so it may not have a dramatic effect. But it also means it is safer.’
The man didn’t ask another question. Louise saw him turn to his partner and whisper something in her ear. Then, another hand shot up at the front of the group. This time it belonged to a black woman with beautifully plaited hair piled artfully on her head.
‘You said in your talk there might be side effects. Can you tell us more about those?’ she asked.
‘At this stage, it is almost impossible to tell what they might be,’ Professor Larssen replied. ‘But trials we’ve done in the lab suggest this is relatively low risk.’
‘But what are the actual things that could go wrong?’ the woman insisted.
‘As I said, we will try to remedy the Rett genetic defect using a viral vector. That’s a virus which will enter the body and target the specific gene that needs fixing. The risk is that we could affect more cells than we mean to, or we somehow damage some other part of DNA. Or we could “overexpress” the gene and cause too much protein to be produced, and that can be harmful too.’
‘So what does that really mean? What could happen to my daughter?’
‘In most cases, hopefully very little,’ he replied. ‘But there is always the risk of something serious, like cancer, potentially. I showed you the list on the slide earlier and this is also explained in detail in the information packs you’ll collect on your way out.’
‘Are you saying my daughter could develop cancer as a result?’
‘It is one of the risks we’ve identified, yes,’ he replied.
There were no further questions.
One by one, the parents stood up, picked up their coats and bags, and filed out of the room, taking an information pack from Louise as they left. When they’d all gone, she walked round the chairs checking for lost property, and then put the remaining packs carefully back into her own bag so that she could return them to the office in the morning. She walked over to Professor Larssen to tell him she was leaving. He was making notes on his script, which Louise had printed for him several days ago.
‘Thanks, Louise. Well done. Excellent turnout, I thought.’
‘Yes, we didn’t have any no-shows,’ she said, fiddling with her bag strap. ‘How many of them do you think will apply?’
‘Oh, probably all of them,’ said the professor, looking up from his writing and raising an eyebrow.
‘Really?’
‘Yes. We’re their only hope, aren’t we? It wouldn’t have mattered if I’d told them there was a strong chance their children would come out of it with webbed feet. They’d still do it.’
Louise was startled.
‘That seems incredible,’ she said, putting her hands on her hips. She thought for a second. ‘But I suppose you’re right. I feel that way about Patience.’
‘Well, there we are,’ the professor said, packing his laptop and script away and picking up his briefcase. ‘I’ll see you tomorrow, Louise. Thanks for today,’ he continued, walking to the door. ‘Good work.’
Louise waved goodbye as he headed out into the lobby. After he’d gone, she spent a few minutes throwing abandoned paper cups in the bin and straightening chairs.
As she hoisted her bag onto her shoulder and walked towards the door, she thought back to that morning, to that awful row she’d had with Pete. He had accused her of putting Patience forward for the trial for selfish reasons. And while she absolutely disagreed with that, she did recognise that her decision to forge ahead with it, to completely ignore Pete’s concerns, was an act of defiance.
She had spent a lifetime caring for others and acquiescing to their views, but now – now was her time. Something in her had changed; she had found a new energy. And she was going to use that to pursue what she believed was right, whatever Pete thought, because Patience’s future happiness depended on it.
10
Eliza
November
Eliza’s day was going incredibly well – really, extraordinarily well – until the hairdresser rang her to cancel.
‘I’m so sorry love, Letty’s broken her finger and we need to cancel your appointment today, but I’ll book you in for tomorrow, OK?’
It was absolutely not OK. She needed her hair blow dried for tonight, on pain of death. Her long brown mane – unruly, and neither straight nor curly – only looked good when it was blow dried properly, and she couldn’t do it herself. She had long admired Patience’s effortless glossy blonde hair and wished she’d got that particular gift in the genetic lottery. Although she acknowledged, of course, that she’d done pretty well in the whole able-to-walk-and-speak genetic side of things.
Her attempts with hair straighteners usually resulted in limp yet frizzy hair which looked as if she’d just walked home through drizzle, and her blow dries were akin to Bridget Jones’ hairdo after that ride in an open-top sports car. Neither was the look she was going for this evening. This evening, she had to be hot. Very hot.
She was finally, finally getting together with Ed for dinner tonight for the ‘closure’ he apparently wanted. It had taken weeks and weeks to arrange. Evidently, he was very busy and she had pretended to be, too, just for a few of the dates he’d suggested, just to appear unbothered. She hoped she’d been convincing.
She had not told Katy about the meeting. This absolutely was not because she was ashamed; it was something she had to do for herself and for her relationship, and Katy didn’t need to know, because she’d worry. And tell her not to do it. Anyhow, it was imperative that she had nice hair. She had bought a new outfit during her lunch break yesterday. Nothing too overtly sexy, because that would be sending out the wrong message. But she had found, in Zara, a nice black skirt and a gorgeous frilly red top; with tights and heels, the hair was to be the icing on the cake. It wouldn’t work without it.
She was supposed to be bashing out a press release for that afternoon, but instead found herself sending multiple Facebook messages to salons in the area, begging them to see her. Twenty messages later and a near-miss with Jenny (she’d just managed to flick up the Office doc she’d been working up in time) she had managed to secure an appointment at Chez Julienne down the road. It was twice the price of her previous option (and wasn’t Julienne a way of cutting vegetables?) but beggars couldn’t be choosers – and anyway, it was impossible to put a price on confidence.
She had dashed out of the office during her lunch break in order to make it on time, passing on actually eating anything. Her Australian stylist, Laura (Julienne was on his or her own lunch break, clearly) ushered her towards a plush chair next to the mirrors and wrapped her in a gown.
‘So, where are you off to tonight?’ she inquired, her tone implying that she actually cared. You got what you paid for in this place, clearly.
‘Nowhere particularly special. I’m just meeting an ex for dinner.’
‘Wow. Ex-husband?’
Eliza laughed nervously.
‘Ah, no. We never got that far. Ex-fiancé. We were supposed to be getting married next summer, but…’
‘Ah, I see. What happened? Did you call it off?’
Laura was clearly a straight from the hip sort of girl. Eliza laughed, aware that Laura was watching her in the mirror.
‘No, sadly,’ she replied, after a pause. ‘He said he wanted… closure.’
‘Is he a recent ex?’
‘Yes, sadly.’
‘Hence the hair.’
‘Yep.’
‘Show him what he’s missing, that sort of thing?’ suggested Laura.
‘Exactly.’
‘So as
well as the cut and blow-dry, can we offer you any colour today?’ said Laura, as she examined Eliza’s hair. ‘We have some really cool temporary rinses which are excellent for hiding those silver flyaways.’
‘Er, no thanks, I’m fine with the highlights I already have,’ Eliza spluttered. Jesus, she thought, do I really look that old? She had the odd grey growing around her parting, sure, but she tweezered them out whenever she spotted them. But shit, she was only four years off forty. Was she actually over the hill? She realised with horror that she might be.
‘So did you have kids, you and your ex?’
‘Ah, no. We never got that far, either.’ God, woman, please stop asking these questions, she thought. I can’t cope with them today.
‘Probably best, eh? It gets messy with kids. And they’re exhausting. I have a son, he’s three. His dad left us last year. It’s a bit… shit. To be honest.’
Eliza suddenly felt sympathy for her inquisitor.
‘I’m so sorry.’
‘Ah, that’s OK. He was a bastard. Like yours, eh?’
‘Yes, like mine,’ Eliza replied, trying to smile.
Laura reached for the shampoo bottle. ‘So, do you have any brothers and sisters?’ she asked, switching tack.
Ah, she’s decided to opt for ‘safe’ small talk, Eliza thought. She hated it when this happened. It was always a toss-up – should she lie and say that she had no siblings, or boast about a gorgeous brother who worked in the City instead? Or, should she be honest and then have to accept the hairdresser’s sympathy, mitigating the ensuing awkwardness by explaining, in painful detail, her sister’s inabilities, and her family’s pain?
‘I have one sister,’ she replied, hoping that might be the end to it.
‘Ah. Are you close in age?’
‘She’s six years younger than me. It took my parents a while to get around to procreating for a second time.’
Laura laughed. ‘That’s like my brother and me. He’s ten years younger. An accident, ha.’ Eliza tried to produce a chuckle, as it seemed appropriate. Laura began to rinse the shampoo out of her hair. ‘So, what does she do, your sister?’
Ah, here we go, Eliza thought. The yawning chasm beckoned.
‘She’s disabled,’ she answered, resigned to her fate. ‘She lives near Oxford. In residential care.’
Laura turned off the water and paused. ‘Oh, I see. What’s she got? My cousin’s autistic, so I know a bit about that sort of thing.’
Not about this sort of thing, Eliza thought. She took a breath.
‘She can’t walk, talk or do anything for herself,’ she answered, as Laura wrapped a towel around her head. ‘I always say: imagine a baby in an adult’s body and that’s her.’
There was an awkward silence. Laura beckoned her over into a chair in front of a mirror. She busied herself with her duties – removing the towel and bringing over a pile of magazines – but was silent. It was a reaction Eliza not only understood, but expected. It was always like this. People had no idea what to say.
‘Would you like a coffee?’ Laura asked, finally. ‘We do a great cappuccino here.’
To avoid further conversation, Eliza pretended to find her magazine, full of the airbrushed lives of the rich and famous, tremendously interesting. It worked; Laura stopped talking to her as she brushed, trimmed and blow-dried her hair. But as she was holding up a mirror to show her the back of her hair – sleek and just on the right side of bouncy – Laura spoke once more.
‘Good luck this evening,’ she said, smiling at Eliza. ‘You look sensational. But don’t give him any joy. He’s an ex for a reason. They always are. I have been there, and I know. Look at him, head held high, and repeat to yourself, “I am worth more than you”.’
‘Right,’ replied Eliza. ‘“I am worth more than you.” Got it.’
*
She tried reciting the mantra to herself, under her breath, when she emerged from the comforting, luxurious cocoon of the salon half an hour later. Her hair now looked sensational, but her face told a very different story. She was already mentally preparing herself for that evening, for the enormous effort she was going to have to make to appear untainted, unbruised. Fortunately, the location of her desk in the office – tucked away in the corner, handy for hangovers, tears and lazy days – worked in her favour and none of her colleagues questioned her unusual silence, or unusual expression, that afternoon.
At 6 p.m., after the room had emptied of most of her colleagues, she retreated into the bathroom. She had her make-up bag with her and a small holdall which contained her outfit. And as she exchanged her white underwear for black satin, she began to feel a new resolve. Things might have gone stale between them, but that was simply because she hadn’t tried hard enough. She had become lazy, she thought. So, to quote Laura – tonight, she’d show him what he’d been missing.
Half an hour later, she caught a bus to St Paul’s. Ed’s chosen venue was a steakhouse near to the London branch of his firm, where he’d had meetings that afternoon.
A year ago, Ed had decided to retrain as a lawyer after an aborted first career as a teacher. Having passed his exams in the June, he’d moved to Oxford in July to start his training at a well-regarded firm with an office near the Cornmarket. He’d been delighted about the move and the challenge ahead; she’d been delirious with tears. He had told her not to be silly – and had proposed to her after a celebratory meal in their favourite Italian restaurant. He had said that their future was bright.
They’d decided not to give up the London flat, as her job kept her in town. So she’d had to lead this strange half-life, half in London, half in Oxford, a foot in both camps. Exhausting, but worth it. Being together was always worth it, of course it was. They had lived together for more than fifteen years, after all, and distance was nothing to a couple who were so grounded, so devoted, so together.
She’d taken to doing most of the travelling, as they (or, he?) had decided that Oxford was a far more pleasant place to spend a weekend. It had been an extraordinary challenge to cover two lots of rent, but it had been the right decision. Or at least, she had thought it had been. Now it just seemed as though she’d taken the mesh off the top of a very deep wishing well and simply chucked all of her cash into it. His decision to leave her had given with one hand financially and taken away with the other: she no longer had to share the cost of the rent of the Oxford flat – on the other hand, she now had to shoulder the London rent alone.
Eliza’s route to the restaurant took her down a street lined with plane trees, planted there with great hope more than a hundred years ago, because of their resistance to the city’s pollution. At the time, London’s toxic air had caused thousands of deaths each year. Now, they were just a welcome note of colour in a grey man-made jungle, turning from bright green to shades of amber, floating down onto the pavement, forming a golden carpet. But despite their beauty, Eliza could never understand people who preferred autumn above all other seasons. The colours of the leaves aside, the season really signified the impending darkness of the winter and a long wait for rejuvenation – hardly a reason to celebrate in anyone’s book. Not only that, but the damp leaves were not the safest surface for her new black patent stilettos and she occasionally found herself reaching for the tree trunks, railings and street lamps for stability and support.
The restaurant was fronted with black glass two storeys high. It didn’t take long to spot Ed among the crowds of people gathered for fine wine and well-aged meat, even in the low light cast by hanging chrome pendants; brown closely-clipped hair, a smart suit, obviously tall, even when sitting – yes, that was him over there, at a table near the bar.
‘Hello,’ she said. He looked up.
I am worth more than you. I am worth more than you. I am worth more than you.
‘Hi, thanks for coming.’
He’d spoken as if she had arrived for a meeting to discuss writing a will. His formality made it feel even more awkward a meeting than she had let herself imagine. S
he dropped into the chair that was proffered, smoothed her skirt and swept her hair away from her face. Then she took her compact out of her bag and reapplied her lipstick using the mirror inside. When she looked up, she saw that he was staring at her.
‘Is that a new top?’ he asked.
‘Yes. I liked the colour.’
What else was there to say? He hadn’t mentioned her hair, but then, he hadn’t noticed when she started adding lowlights, then highlights, then layers – it wasn’t his thing. They examined the drinks menu for a minute or two, encased in a bubble of silence that was exclusive to their table alone. Ed broke it first.
‘So I asked you here because I felt that we didn’t really get to say all that we needed to say.’
I am worth more than you, I am worth more than you.
‘You could say that. You walked out.’
‘Yes. And I’m sorry about that. But I just felt we weren’t getting anywhere. We were going around in circles and you were so upset…’
‘Of course I was upset. You told me you didn’t know what love was.’
‘Yes, I did.’
*
It had happened when they had invited a couple of long-standing friends over for the evening. It had been a Saturday and Ed had been up from Oxford, on a rare weekend visit to the capital. They had seized upon the opportunity to invite old university friends over for an Indian takeaway and a large quantity of beer. Callie and Max had also met at uni and had been together for more than eighteen years. They had got married several years after leaving, and were now parents to eight-year-old Rupert and four-year-old Julia. Their dinner with Ed and Eliza was a rare escape from the binds of parenthood.
‘I do envy you both,’ Callie had said, necking the wine. ‘Look at your tidy flat, right in the centre of London, and that inevitable lie-in you’re both planning in the morning. Absolutely magic.’
‘Yes,’ Max had interjected. ‘Meanwhile, we had to move out to zone six to afford a house and it takes us about ten hours to get into work. If the trains run at all. And our idea of a fun evening now is a night at a friend’s place eating food from Khan’s Balti – no offence.’
Patience Page 11
