I’d got the impression from Dr Kamara that Dr Reynolds would be on his own when he met with me and Dad to discuss my condition, so I was a bit surprised when he turned up with Dr Hahn, but only because I wasn’t expecting her. I didn’t mind if she was there or not. Neither of them said anything about my appearance – in fact, they barely gave it a second glance – and I guessed they already knew about the headscarf and sunglasses. Either that or they were really good actors.
Dad was sitting beside me now.
Dr Hahn had pointed out that it would be a lot easier for Dr Reynolds to talk to us if we were both on the settee. So Dad had moved, Dr Reynolds had taken his place in the armchair, and Dr Hahn was sitting at the table. It wasn’t obvious that Dr Hahn was keeping a close eye on Dad – it looked as if she was just sitting there quietly in the background, not doing anything in particular – but I knew she was watching him. There was something in her eyes when she gazed his way that wasn’t there when she looked at Dr Reynolds or me. Dad wasn’t aware of it though. He was just sitting there – his back straight, his hands on his knees, staring blindly at the floor. It must have come across as a strangely inappropriate thing to be doing – and I have to admit it was slightly embarrassing – but I knew Dad couldn’t help it. It was just what he did sometimes when things got too much for him. I thought he might snap out of it when Dr Reynolds began talking to us, but he didn’t.
‘How are you feeling today, Kenzie?’ the doctor said.
‘I’m okay, thanks.’
‘And how do you like it here in your new room? Are you settling in all right?’
‘Yeah . . .’
‘Good.’ He glanced briefly at Dad, got no reaction, and turned back to me. ‘Has your dad told you much about the discussions we’ve already had?’
‘What discussions?’
His eyes flicked over at Dad again, and I could sense his growing annoyance with him.
‘Perhaps ‘discussions’ is the wrong choice of word,’ he said, trying hard to hide his irritation. ‘We’ve been in regular contact with your dad all the time you’ve been here, and we’ve kept him up to date as much as we can. Not just about your condition, but about everything we’re doing as well. And, wherever possible, why we’re doing it. So although we haven’t really discussed anything at length, your dad knows what’s going on.’ He paused for a second, realising what he’d just said – your dad knows what’s going on – and I could see him thinking – not that you’d know it from looking at him now – but he didn’t say anything. He just raised his eyebrows a fraction, then carried on. ‘I was only asking how much your dad has told you so that I know where I stand before I start explaining things further. I’m guessing now though that he hasn’t told you very much. Is that right?’
I nodded. ‘We haven’t had time to talk about anything really.’
‘Well, that’s okay . . . as long as I know.’ He lowered his eyes for a few seconds, gazing thoughtfully at the floor, then he blinked once, tapped his finger on the arm of the chair, and looked back up at me. ‘The only thing I can promise you at the moment, Kenzie, is that we’re all doing our level best to find out what’s wrong with you. It’s an extraordinarily challenging and painstaking process, and I honestly can’t tell you how long it’s going to take. But we’re making good progress, and we’re now beginning to focus most of our attention on one type of disease in particular. And that’s what I want to discuss with you today. All I ask is that you bear in mind that at this point we’re still only speculating.’
I can’t remember everything Dr Reynolds said that day, and I’m not sure I understood it all anyway, but the one thing I don’t have any doubts about now is that although he was almost certainly right, it didn’t – in the end – make the slightest bit of difference.
‘We’re working on the theory that the underlying cause of your condition is a previously unknown genetic disorder,’ he told us. ‘I realise that because of your brother’s muscular dystrophy you already know quite a lot about genetic disorders, so I’m not going to waste your time going over the basics with you, but it’s important to understand that although the fundamental cause of all genetic disorders is the same – that’s to say one or more abnormalities in the genome – the specifics behind the many different types of genetic disease are enormously varied.
‘Take the abnormalities themselves, for example. These can range from mutations in the DNA sequence of a single gene – as is the case in some forms of muscular dystrophy – to changes in the number and structure of entire sets of chromosomes. Some disorders are hereditary, others result from new mutations. And while these disorders are always present at birth, the symptoms of many conditions don’t become apparent until later in life. And these are just some of the variables. There are dozens more.’
Dr Reynolds cleared his throat. ‘So the problem we have, and the reason it’s so difficult to identify the specific cause of any genetic illness, is that unless we already know what we’re looking for, it’s like searching for a needle in a haystack the size of a mountain.’
It felt quite strange hearing the words ‘muscular dystrophy’. When Finch was first diagnosed, the doctors weren’t sure which type of the disease he had – there are at least nine different forms of MD – and there was even some doubt as to whether or not it was muscular dystrophy at all. It wasn’t much of a doubt – we were told that the chances of a wrong diagnosis were less than 1% – but it was the only hope we had, and it gave us at least something to cling on to. And I think that was the reason we stopped using the term ‘muscular dystrophy’. It wasn’t a conscious decision, and we weren’t even aware we were doing it at first, but I think we must have had the same irrational inner belief that by referring to the illness as muscular dystrophy we were accepting that that’s what it was. And if we did that we were giving up hope.
So Finch’s illness was just that – his illness. Or his sickness. Or his condition. Anything but muscular dystrophy.
We knew it was ridiculous, of course – as stupidly nonsensical as all superstitions – but the thing about superstitions is that once you start going along with them it’s very hard to stop. You don’t have anything to lose, you keep telling yourself. And you never know, do you? You just never know . . .
‘And there’s one more thing that needs pointing out,’ Dr Reynolds continued. ‘It’s widely acknowledged that the vast majority of our genetic material doesn’t appear to do anything at all. It’s known as junk DNA, and it’s believed to account for as much as ninety-seven per cent of the entire human genome. Now, to me, that makes no sense at all. The human body is a wonderfully efficient organism, and one of the things that makes it so efficient is that every single part of it – every cell, every molecule – has a clearly defined purpose and function. So how is it even conceivable that ninety-seven per cent of our being has no purpose or function whatsoever?’ He looked at me in silence for a few seconds, as if he was expecting an answer, but he’d gone off on such a tangent now that I wasn’t even sure what the question was. ‘The only explanation for junk DNA that’s ever made any sense,’ he went on, ‘is that just because it seems redundant, that doesn’t mean that it is. All it means is that we don’t know what it does. And if we don’t know what ninety-seven per cent of our DNA does, then we also know nothing about its abnormalities and what kind of disorders they might cause.’
Dad wasn’t sitting bolt upright anymore. He’d let himself lean back a bit, so he was resting against the back of the settee, and his hands were together in his lap. He was still not quite there though – still staring at nothing – but I knew the signs, and I knew he was on his way back.
I glanced at Dr Hahn, expecting her to be studying Dad, but her eyes were fixed on me.
She smiled.
It was a smile shaped by pity.