See Through Me Page 6

  You don’t control any of it.

  It controls you.

  12

  Dad was late.

  It was gone twelve-thirty when he finally arrived – a hesitant knock on the door, a muttered voice – ‘Kenzie? It’s me . . .’ – and as I got up from the settee, intending to let him in, the door opened just enough for him to poke his head through.

  ‘All right if I come in?’ he said.

  He was doing his best to smile at me, and I knew it was a genuine attempt rather than something he was forcing himself to do, but he just didn’t have it in him. As he stepped through the door and closed it behind him, I could see the turmoil in his eyes and the nervous hesitancy in his movement, and I couldn’t help feeling sorry for him. Imagine how he must have felt – facing up to his mutant daughter, her disfigurement hidden beneath a ludicrous disguise . . . not knowing what to do, or what to say, or where to look, or how to feel . . .

  Who wouldn’t be bewildered by all that?

  He was carrying a holdall in his hand, and as he turned from the door and started speaking to me he couldn’t stop fidgeting around with it – swinging it against his leg, twisting the hand straps, bobbing it up and down . . .

  ‘I’m sorry I’m late, Kenzie,’ he said. ‘We’ve been having a lot of problems with the carers, something to do with their shift patterns or something, and then when I did get going there was an accident on the A13 –’

  ‘It’s all right, Dad,’ I told him. ‘It doesn’t matter.’

  ‘Where do you want this?’ he said, holding up the bag. ‘It’s your clothes and stuff, books, soap, toothbrush . . . I wasn’t sure what to bring . . .’

  He was talking too quickly, almost jabbering, and his eyes were all over the place. He kept trying to look at me, but there was nothing of me to see – my face wrapped up, my eyes masked by sunglasses . . . and I realised then that he had no way of knowing how I was. He couldn’t see if I was crying, smiling, angry, sad . . .

  But he couldn’t see my faceless skull either.

  And that’s how it had to be.

  ‘Where do you want me to put it?’ he repeated, still holding the bag, his eyes still darting around the room. ‘On the bed?’

  ‘Yeah, anywhere, Dad . . . it doesn’t matter.’

  ‘I’ll put it on the bed.’

  He went over and put the holdall on the bed, and for a second or two he just stood there, facing away from me, not saying a word. His head was slightly bowed down, as if he was staring at the floor, but after a few moments he slowly straightened up, and then – to my surprise – he turned round, came over to where I was standing, and put his arms around me.

  Dad was never any good at hugging. He didn’t like it, didn’t get it, and didn’t do it unless he really had to. And when he did do it, he did it really badly. So although I was surprised when he embraced me, I wasn’t in the least bit surprised at how stiff and awkward it was – his hands barely touching my back, his arms held rigidly, his body arched away from mine. It was like being hugged by a robot.

  ‘I’m sorry, Kenzie,’ he muttered. ‘I just . . . I don’t know. I’m sorry.’

  I didn’t know what he meant by that. I would have asked him – at least, I think I would – but by the time his words had sunk in, he’d already stopped holding me – if you can call it that – and now he was just pacing aimlessly around the room.

  The moment had gone.

  There were no more moments in the next half an hour or so. We sat down and talked – Dad in the armchair, me on the settee – but we didn’t really say anything. I asked him about Finch. He told me he’d been having breathing problems again.

  ‘What kind of problems?’ I asked. ‘The same as before?’

  Dad nodded. ‘But it’s lasting longer now. And it’s becoming more regular.’

  ‘Has Dr Moore seen him?’

  Dr Moore was our GP.

  ‘She came round yesterday.’ Dad shrugged. ‘She said if it keeps getting worse, he might have to start using a ventilator.’

  ‘Can he do that at home?’

  ‘He can if we can get hold of one.’

  He went on about ventilators for a while – how long it took to get one through the NHS, how much they cost to buy privately – and then he started telling me all about the problems with Finch’s carers, and as he droned on about shift patterns and new working practices, I just sat there, wondering why it had to be like this.

  He hadn’t asked me how I was . . . how I was feeling . . . how I was coping with this life-changing nightmare . . .

  He hadn’t asked me why I was dressed up like something from a horror film . . . why I felt the need to cover myself up for him . . .

  He hadn’t asked me what the hell was going on.

  He hadn’t asked me anything.

  And I knew that wasn’t right. He was my dad, he was supposed to care for me. He should have been sitting beside me asking me hundreds of questions and telling me that everything was going to be all right. And I knew that I should have been devastated by the fact that he wasn’t . . . and perhaps a tiny part of me was. But for the most part, the overwhelming truth was that I was glad he wasn’t asking me hundreds of questions and pretending that everything was going to be all right . . .

  This was how it was with Dad.

  It was how it had always been.

  And it was okay with me.

  13

  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.

  I didn’t like it.

  ‘Do you know what gene sequencing is?’ Dr Reynolds asked me.

  I nodded. ‘Finch had it done. It’s when they take a sample of your DNA and use it to build up a kind of map that shows the details of all your genes, and then they analyse all the details to see if you’ve got any of the genetic faults that cause particular diseases. I mean, I know it’s a lot more complicated than that . . .’

  I remembered, I remember . . .

  Leaving the hospital with Finch and Dad, the three of us heading across the car park in bewildered silence. We’d just spent an hour with a doctor we’d never met before who was supposed to be giving us the results of Finch’s gene sequencing and telling us what it all meant, but none of us could understand what he was talking about. It wasn’t that he used too much medical jargon or anything, or that we couldn’t understand his accent – he didn’t have one – in fact, there didn’t seem to be anything wrong with the way he spoke at all. His voice was perfectly clear, the words he used easily understandable, and every time he began a sentence it seemed at first to make sense. But by the time he’d got to the end of it, it had somehow become incomprehensible. And if you told him that you didn’t understand, and asked him to explain it again, exactly the same thing would happen.

  It was the weirdest thing.

  And by the time we left his office, we were all so dazed and bemused by it that all we could do was walk in stunned silence together – along the hospital corridors, through the hospital doors, across the hospital car park . . .

  We were nearly at the car, and Dad was just getting the keys out of his pocket, when Finch broke the silence.

  ‘Imagine serving him at McDonald’s,’ he said. ‘You’d be there for ever, wouldn’t you?’

  We all pictured it for a moment – the doctor ordering something, the server not understanding, the doctor repeating it, the server still not understanding – and then I turned to Finch and saw the big stupid smile on his face, and that was it. We both just cracked up, laughing away like idiots, and once we’d started we couldn’t stop – snorting and hooting and giggling, falling about all over the place . . . we laughed so hard it hurt. It was so infectious that even Dad joined in after a while, and when we finally managed to control ourselves – our bellies still sore from laughing, our eyes still wet with tears – there was a moment when we were all together again . . . the three of us just standing there smiling at each other, not thinking, not worrying, not anything . . .

  It was as happy as we were ever going to be.

  14

  ‘We don’t usually carry out gene sequencing on our patients unless there’s a strong indication that their disease is genetic,’ Dr Reynolds said. ‘And of course we’ll always consider it for a patient who’s tested negative for everything else. But in your case, Kenzie, your condition was so extraordinary that we decided to start testing you for everything straight away, including genetic disorders.’

  He went quiet for a few moments then, and from the way he looked away from me, focusing on something across the room, I thought he was bracing himself to give me some bad news. But either he changed his mind, or I was wrong in the first place.

  ‘As you know,’ he said, turning back to me, ‘genetic disorders can be hereditary, passed down from the parents’ genes. Some disorders only affect males, some only females, and others can affect both. Similarly, some conditions can only be inherited from the mother’s side, and others can only come from the father. So in cases like yours, when there are so many unknowns, it’s sometimes possible to narrow things down by looking into the patient’s family history. It’s a time-consuming process, and it often proves fruitless anyway, but as soon as we began asking questions about your family, we knew we might be onto something.’

  ‘Because of Finch, you mean?’ I said.

  ‘Well, we were reasonably confident there was no direct correlation between your condition and your brother’s, but that didn’t necessarily mean there was no connection at all. And because Finch had already had his DNA sequenced, all we had to do was get hold of the results and start looking for anything that might possibly relate to you.’

  ‘Did you find anything?’

  ‘It’s complicated . . .’

  Everything, it seemed, was complicated.

  ‘I’m not trying to be evasive, Kenzie,’ Dr Reynolds explained. ‘It’s just that everything will make a lot more sense once I’ve told you about your grandmother and your mum. So if you’ll let me –’

  ‘What’s my mum got to do with it?’

  He was just about to answer when Dad suddenly leaned forward on the settee, taking us both by surprise. It gave Dr Hahn a bit of a start too. We all turned to look at him, our heads moving in unison, and when I saw Dad sitting there – perched alertly on the edge of the settee, staring hard at Dr Reynolds – I knew he was back.