The Universe versus Alex Woods

by Extence, Gavin

  ‘But what’s the point?’ I asked. ‘You never let her keep them. You seem perfectly happy to make that decision for her. Maybe if you let her keep her kittens, she’d stop breeding.’

  My mother ignored me and directed her response to Ellie. ‘Perhaps you’d like one, Ellie? I think one cat’s quite enough for us right now. Taking care of kittens and young cats requires quite a time commitment. And despite what Lex says, I think Lucy tends to lose interest in the maternal role after about eight weeks. That’s often the way with cats. Mostly they’re very independent creatures.’

  ‘Maybe she loses interest because she knows what’s coming,’ I said. ‘Your whole approach to that cat’s completely inconsistent. Actually, it’s worse than that. It’s cruel.’

  My mother looked at me for a few seconds without saying anything, then turned away. ‘Ellie, I think some fresh air might be a good idea. Why don’t you and Lex go up to the well and get some water for the cooler. It’s looking a little empty. Take both of the five-litre bottles. That should keep us going for a while.’

  If I haven’t mentioned it already, my mother only drinks Glastonbury well water. She even uses it to make herbal tea.

  Ellie did not look amused. She exhaled demonstratively, to show us all and especially me how patient she was being, and what kind of effort it was costing her. ‘Fine. Ten litres of well water coming up. Where are your car keys?’

  ‘I want you to walk, Ellie,’ my mother said. ‘Just because you can drive now doesn’t mean you have to. A bit of exercise won’t do either one of you any harm.’

  Ellie glared (at me, as if this absurd outing had been my idea). ‘Walk? You want us to walk to the well? There and back?’

  My mother nodded patiently. ‘What did you think I meant by “fresh air”?’

  ‘I thought it was just a figure of speech!’

  ‘It wasn’t. I want you to walk. Take your time. Enjoy yourselves. It’s a nice day.’

  ‘It won’t feel so nice on the way back. You do realize how much ten litres of water weighs, don’t you, Rowena? It’s got to weigh about a ton!’

  ‘For God’s sake, Ellie!’ I interjected. ‘Ten kilograms! It’s not difficult. Ten litres of water weighs ten kilograms.’

  ‘Alex, shut up! This is not the time for maths! You’re not helping.’

  ‘And you’re wasting your time. She’s not going to change her mind.’

  ‘No,’ agreed my mother, ‘she’s not. You’re both young and healthy. I’m sure you can manage it between you.’

  Ellie glared at me again, then threw her hands in the air and thrust her jaw at the door to the stockroom. I had the feeling that I was going to be doing most of the carrying.

  As soon as we were outside, Ellie lit a cigarette and exhaled an angry jet of smoke. Smoking outside was as close to fresh air as Ellie ever came. ‘You know this is your fault,’ she told me. ‘You were pretty fucking rude back there. There was absolutely no need for it.’

  I ignored her and subtly upped my pace. I was not prepared to be lectured to on this subject – especially not by Ellie.

  ‘Woods, slow down! I don’t want to die of a heart attack on the way to the fucking well!’

  Ellie usually regressed to calling me ‘Woods’ when we were not in my mother’s company, or when she was particularly angry. I slowed down all the same. Despite what my mother had said, it was not such a great day for walking. It was too hot and muggy. It felt like it needed to rain. I knew that I should preserve some energy for the return trek.

  ‘Are you going to tell me what’s wrong with you?’ Ellie asked.

  ‘Nothing’s wrong with me,’ I said. ‘I just get fed up when my mother won’t stop talking crap.’

  ‘Jesus! She’s entitled to her opinion, isn’t she?’

  ‘Yes. Just the same as I’m entitled to mine.’

  ‘Exactly. Except she isn’t the one getting all personal and nasty.’

  ‘Her opinions make no sense. She’s completely illogical.’

  ‘Logic! Fuck logic, Woods! There are more important things in the world than being logical – like being nice, for a start. Your mum’s heart’s in the right place. She wasn’t saying what she was saying just to piss you off. From where I was standing, she was just trying to have a reasonably pleasant conversation with you.’

  ‘If she wants a conversation, then she shouldn’t punish me for speaking my mind. It’s not fair.’

  ‘She’s not punishing you, you dildo! She’s giving you a chance to cool down. It’s pretty fucking obvious that you’re not in the best of moods today, and I suppose she’s hoping that if you’re not going to tell her what’s going on, then you might tell me. I’m the one who’s being punished here. A hike to the well is not my idea of a good time.’

  ‘This has nothing to do with you. You’re just collateral damage. Trust me: my mother is trying to teach me a lesson. That’s the way her mind works. She’s trying to force me to accept that she’s right and I’m wrong. She hates it when I disagree with her.’

  ‘Jesus, you’re brain dead!’ Ellie said.

  I ignored her.

  We’d reached the well, which was deserted except for a long row of cars that were parked up on the side of the road. Their owners had obviously headed up to the tor. I started filling the first water bottle. I knew it would take a couple of minutes, at least. The well water only gets dispensed from its wall outlet at a slow trickle, which is especially slow when it hasn’t rained for a while. But I didn’t mind waiting. It was past noon so the well was shaded by the embankments and the trees. Ellie had sat down on one of the benches just across the lane. She lit another cigarette.

  ‘You know, you don’t give your mother nearly enough credit,’ she said. ‘When has she ever told you what to think?’

  ‘She tells me all the time.’

  ‘When?’

  ‘All the time!’

  ‘As far as I can see, she’d never dream of imposing her beliefs on you. One thing you can’t accuse her of is telling you what to think or do. She respects your independence. And that’s not at all normal for parents. You don’t realize how lucky you are.’

  I turned back to watch the water bottle filling. I thought it was typical of Ellie to try to turn the situation around so it was somehow a commentary on her own traumatic childhood. ‘You don’t have the faintest idea what you’re talking about,’ I told her.

  We walked back from the well in silence.

  At my biannual check-up with Dr Enderby, I told him about Mr Peterson. I hadn’t meant to say anything, but really I felt like I was left with no choice. Otherwise, this thing would just drag on and on for ever.

  Dr Enderby didn’t say anything while I told him about our recent trip to the hospital and the misdiagnosis. He just looked at me very calmly, allowing me to lay down the facts from start to finish. I thought it was good that he was remaining so poised and unemotional in the face of my revelations. He wasn’t going to interrupt or question me until he’d had a chance to assimilate all the evidence. Then he’d know exactly how to clear up this mess. A couple of phone calls, a proper reassessment of the data and with any luck this would all be over in a matter of days – if not hours.

  But when I’d finished speaking, he just continued to look at me for a few moments more, his demeanour unchanging. Then he said: ‘Alex, you know that you shouldn’t be telling me this, don’t you? Breaking a confidence is a very serious matter.’

  I felt myself reddening. ‘I am breaking a confidence,’ I admitted. ‘Mr Peterson didn’t want me to tell anyone. But I couldn’t see what else to do. He’s being ridiculously stubborn about this.’

  ‘I can understand that you’re very upset right now,’ Dr Enderby said. ‘And I don’t doubt that you feel like you’re acting for the very best of reasons. But with some things, you have to respect a person’s wishes. You shouldn’t force Isaac down a path he doesn’t want to follow – especially at a time like this, when he probably feels like most of his choic
es have already been stripped away. I think you should be able to understand that as well as anybody.’

  ‘I do understand that. Of course I do. But this is an exceptional circumstance.’

  Dr Enderby continued to look at me without changing his expression. Something clicked into place.

  ‘You already knew!’ I said.

  ‘Yes,’ Dr Enderby admitted. ‘I’ve known for some time.’

  ‘I didn’t think Dr Bradshaw was allowed to tell you.’

  ‘He wasn’t and he didn’t. Isaac phoned me shortly after the diagnosis. And we’ve spoken a couple more times since then.’

  I felt a huge flood of relief. ‘So it’s okay, then? I mean, I know I shouldn’t have interfered, but I didn’t think he was going to get this sorted out on his own. But it’s okay now. You know about it and you’re obviously dealing with it. Is there going to be a reassessment? Or can’t you talk about that? I’ll understand if you can’t.’

  ‘Alex,’ Dr Enderby said softly, ‘there’s not going to be a reassessment. There’s no need. Dr Bradshaw knows what he’s talking about. He’s an expert in his field.’

  ‘Yes, of course. I’m not questioning his credentials. But misdiagnoses happen. I know they’re rare, but they happen. I was looking on the internet and—’

  ‘Alex, you have to listen to me. The diagnosis is correct. It’s not going to change. I’m sorry. I wish there was a kinder way to say this, but there isn’t.’

  I looked at him blankly. I felt a weird, involuntary tremor in my jaw.

  ‘What you’re feeling now is perfectly normal,’ Dr Enderby went on, ‘but it can’t be allowed to continue indefinitely. You have to accept reality. Isaac has a terminal illness. And he’s going to need your support.’

  I started crying. I felt Dr Enderby’s hand close on my shoulder. If I’d had the co-ordination, I would have pushed it away. I didn’t want it there. I felt too betrayed.

  ‘What can we do for him?’ I asked eventually. ‘Dr Bradshaw said that he could go on levodopa and that might slow the neurodegeneration. Or at least help with the symptoms.’

  ‘It might,’ Dr Enderby said. ‘But there’s more chance that it won’t. You have to be prepared for that. PSP is very difficult to treat effectively.’

  ‘Okay. So what else is there?’

  ‘Simple physiotherapy tends to have the best results. It won’t help with the visual problems, of course, but it should counter some of the locomotive dysfunction, at least for a while.’

  ‘But what about real treatments? Other drugs—’

  ‘Alex, I’m sure that Dr Bradshaw has been through all of the treatment options with you. I’m afraid I can’t tell you anything new. There aren’t any miracle cures on the horizon.’

  ‘But things are improving all the time, aren’t they? I mean, neurology’s advanced more in the last ten years than in the whole of the previous century. You told me that yourself.’

  ‘Yes, that’s true. And I’m sure that in another fifty years – maybe in another twenty years – the field will have changed almost beyond recognition. I’ve no doubt that someday all of these neurological disorders will go the same way as smallpox. But we’re not there yet. I’m sorry. I know it’s not what you want to hear right now.’

  ‘But you must know something. What about new treatments that are still in development? Drug trials? It doesn’t matter if they aren’t proven yet.’

  ‘Alex, you know what I know. If there was anything else, I’d tell you.’

  I was starting to shake again. I tried to focus on my breathing. I couldn’t.

  ‘Alex?’ Dr Enderby said. ‘Alex, I want you to look at me.’

  I looked at him.

  ‘Do you know what’s really going to help Isaac over the coming months? Just being there for him. Being his friend. Respecting and supporting his decisions. That’s what’s going to make a difference to him. I know it’s a terrible position to be in – especially at your age – but I also know that you’re going to cope with it. It might not feel like it now, but you’ve got a lot of strength in you. And so has Isaac. I’ve only got a few phone calls to go on, but in all honesty, it seems to me that he’s coping as well as anyone could in these circumstances. But he still needs your friendship and your support. He doesn’t need you tearing yourself in two looking for a solution that doesn’t exist. He’s accepted what’s happening. Now you have to do the same.’

  ‘He’s seen a lot of terrible things in his life,’ I said.

  ‘Yes, I know.’

  ‘I think that’s why he’s coping so well now.’

  ‘Yes, you might be right.’

  ‘But it’s also why this is so unfair. He shouldn’t have to go through this as well.’

  ‘No, he shouldn’t. No one should have to go through this. But dwelling on that thought is not going to help in the slightest. You know that, don’t you?’

  ‘Yes.’

  ‘Because sometimes chance and circumstance can seem like the most appalling injustice, but we just have to adapt. That’s all we can do.’

  ‘Yes, I know that too.’

  ‘I know you do,’ Dr Enderby said. ‘You should know it. Understanding and accepting that you have a permanent illness does not mean being a slave to it. It’s the first step you have to take so that you can go on living your life. And I think right now that’s exactly what Isaac’s trying to do. He wants to make the most of whatever time he’s got. We need to support him in this.’

  I wiped my eyes and nodded.

  ‘Are you going to tell him?’ I asked. ‘You know, that I wasn’t able to keep his confidence?’

  ‘No, Alex. I won’t tell him. But I think you should. I think you should tell him as soon as possible. Just be honest. After that, you might find that things start to get a little easier.’

  Dr Enderby was right. Mr Peterson was holding up remarkably well. Too well, really. And it wasn’t that he was in denial or anything like that; his reaction was the polar opposite to mine. In private, he was perfectly able to acknowledge his illness and what it meant. He told me how he was feeling day to day. He kept me updated on his symptoms. These were still relatively minor at this point, but he was more able – or more willing – to spot the little signs that had been creeping into his life for some months. Standing and sitting were sometimes a bit of a trial, as were eating and picking up the post from the floor – anything that required a certain amount of balance or hand–eye co-ordination. In general, the symptoms were worse first thing in the morning and late at night. Mr Peterson said that some mornings, coming down the stairs, he was sure that God was testing him. I thought it was good that he could make jokes like that, but at this point, I couldn’t bring myself to respond in kind. It felt too forced. If I managed a weak smile, I was doing well.

  His visual problems were still his primary and most persistent symptom. He described his difficulty ‘aiming’ his eyes as being similar to having a kind of blind spot. Now that he knew it was there, he could make sure he checked it, but this took a conscious effort on his part. Scrolling his eyes up or down no longer felt like a natural, automatic response. It had become an act that required focus, planning and memory, and because of this, he was increasingly happy to let me do the driving when he needed to go to the shop or the post office. My competence behind the wheel was now beyond question – at least on these short, local trips – and it seemed highly unlikely that we’d be pulled over in the village. A police car was a rare sight in Lower Godley. Mr Peterson said that if, by any chance, the police did stop us, he’d claim full responsibility for the situation. I could plead ignorance or coercion. Given his condition, he no longer thought it likely that any judge would want to send him to the Big House, and we both agreed that safety should come first.

  But if Mr Peterson was starting to make concessions with his driving, he was doing no such thing with his reading. Even with his faltering vision (perhaps because of his faltering vision) he was still determined to see our Kurt Vonnegut book
club through to its conclusion. He wouldn’t hear of cancelling it. By the time we got to Timequake, the final novel on the itinerary I’d devised some fourteen months earlier, he could read only in short, five- to ten-minute bursts, and only at certain times of day – usually nine till twelve and three till seven. Any earlier or later was a strain. He was already having to use his finger to follow the text down the page, like a child learning to read. But he stuck with it nevertheless. It took him the best part of a month, but by the time of our final meeting, he was done. He knew it would be the last novel he’d ever read for himself.

  Of course, no one else in the book club knew about his condition – no one other than myself and Dr Enderby. We were still the only people who knew. Even after I’d moved beyond the denial stage, I didn’t see much point in telling my mother, although Mr Peterson had again said that this would be okay, and it wouldn’t be breaking his confidence. He seemed to think it was important for me to talk to her, but, really, that felt like a step too far. Acknowledging reality for myself was one thing. Having to explain what was happening – and what was going to happen – to another person was something else entirely. That would make it too real. And I soon came to wonder if this might also be Mr Peterson’s reason for keeping his illness so completely to himself.

  It seemed to me that after the first couple of months, he might have brought himself to tell a few more people. He got on well with Mrs Griffith, and with Fiona Fitton. There were people he could have talked to, and I knew that they would have wanted to help in any way they could. I also knew that at some point – maybe not all that far in the future – this kind of support was going to be of the utmost importance. But the future was the one subject that was out of bounds. Because for all of his coping skills, Mr Peterson still refused to make any practical plans or decisions. He hadn’t yet committed to any of the treatment options offered by the hospital. The information pack they had sent him, so far as I could ascertain, had remained unopened. He told me that right now he just wanted to go on living day to day. He was determined to stick to his normal routines for as long as possible. When I pointed out that things like physiotherapy and home help came with waiting lists – that you couldn’t just sign up and expect immediate care – he said he simply wasn’t prepared to worry about such matters at the present moment, and he didn’t want me to worry either. But this was easier said than done.