The Universe Versus Alex Woods (28 page)

Mr Peterson didn’t say anything. His eyes were locked on the road ahead.

A thought occurred to me. ‘Mr Peterson?’ I asked. ‘This
is
the only time something like this has happened, isn’t it? I mean, you’ve not had any problems like this before – with driving?’

‘Of course I haven’t!’ Mr Peterson said. But he said it much too quickly for my liking.

I was worried.

The optician had, at first, been slightly baffled. After all, there was nothing wrong with Mr Peterson’s eyes per se. They appeared healthy for his age. His prescription was correct. There was no sign of cataracts or glaucoma – nothing that could account for the ‘blurring’ and dizzy spells he’d been experiencing intermittently in the weeks since the crash. The only problem the optician could detect was that Mr Peterson seemed to be experiencing some inexplicable problem ‘aiming’ his eyes.

‘The problem’s very specific,’ the optician told him. ‘Focussing on stationary objects obviously isn’t troubling you, and you can track horizontally. But you have a minor difficulty tracking moving objects along the vertical axis – more notably when the movement’s in the downward direction, or from background to foreground. I can only conclude it’s this that’s causing your difficulties with driving and reading – but as to the root cause, I’m afraid there’s not much else I can tell you. The problem may be muscular, but really this is just a best guess. You need to talk to your GP.’

‘Maybe you could ask Dr Enderby the next time we see him,’ I suggested later. Mr Peterson did not like going to the doctor’s. He had been putting it off.

‘I don’t need to see a
neurologist
, kid,’ Mr Peterson pointed out. ‘The optician said it’s probably just muscular. I’m not even convinced it’s a real problem. Just age. All sorts of things start to pack up as you get older. This is something you’ve got to look forward to.’

‘That’s not what the optician said,’ I riposted. ‘He said you should see a doctor because he doesn’t know exactly what the problem is. There
is
a problem, though.’

‘A minor problem.’

‘Do you want me to make an appointment for you tomorrow? I don’t mind coming along as well – if that would help?’

‘I don’t need chaperoning to the doctor’s! I’m capable of making my own appointments.’

‘I’m not seeing much evidence of that right now,’ I said. It was a tone I’d learned from my mother, and it worked.

Mr Peterson got on the phone.

The following day, the GP repeated the eye tests, then asked Mr Peterson to perform some simple tasks involving hand–eye co-ordination. She concluded that the problem wasn’t muscular.

‘I’m going to refer you to a neurologist,’ she said.

Mr Peterson swore at length. ‘I thought this was a
minor
problem. It’s hardly even bothering me.’

‘It’s difficult to say for sure what the problem is at this stage,’ the GP told him. ‘But there are certain neurological conditions with symptoms similar to yours. They’re mostly very rare, but it makes sense to investigate further. Just to be certain.’

‘If you’re going to the neurology department at Bristol, I’m definitely coming,’ I told Mr Peterson later, after he’d briefed me. ‘After all, I
have
been there a lot. It will make things much easier.’

‘It’s gonna be a waste of time,’ Mr Peterson predicted. ‘I’ve just got some weird eye-muscle thing. It’s not even a real problem.’

‘I think you need to leave those kinds of judgements to the doctors,’ I said.

Mr Peterson snarled. But he offered no further resistance regarding my attending his appointment with him, and the following week, we met the neurologist, who was called Dr Bradshaw. He knew Dr Enderby, of course, and it also turned out that he knew of me. I found this out after I introduced myself and told him that I’d been seeing Dr Enderby for the past five years because of my TLE. Dr Bradshaw said he was familiar with my case – not the details, just the background. Everybody in the hospital knew about that.

Dr Bradshaw asked Mr Peterson lots of very detailed questions about the car accident, and after that he wanted lots of information about Mr Peterson’s mobility problems. So Mr Peterson had to tell him all about his leg and how it had been shrapnelled by a Viet Cong landmine and had subsequently become gangrenous, which had caused severe and permanent damage to many of his nerve-endings, leaving him with his limp.

Dr Bradshaw absorbed these facts in five seconds of silence, then said: ‘And what about more recently? Has there been any worsening of your general mobility?’

‘Not so as I’d notice,’ Mr Peterson replied.

‘What about your balance?’ Dr Bradshaw asked.

‘Wonderful,’ Mr Peterson said. ‘I’m thinkin’ of becoming a gymnast.’

‘Any falls?’

‘The odd stumble. Nothing major.’

‘What about getting up and down the stairs?’

‘That’s always been a slow process. I’m used to it.’

‘And how about your moods? Have you noticed any sudden mood swings? Any unusual irritability?’

‘Not unusual irritability,’ Mr Peterson said.

‘He means he’s
usually
quite irritable,’ I clarified.

Dr Bradshaw didn’t smile.

The tests that followed were thorough. Again, Mr Peterson had to try to follow a torch using only his eyes, and then he had to use a machine that displayed flashing lights at different points in his visual field and push a button each time he detected a flash. After that, there were tests involving focussing and pupil dilation and involuntary eye movements. Finally, he was sent for an MRI scan. Later, Dr Bradshaw would tell us that this wasn’t critical for the diagnosis – which by then was already clear. It was to ascertain how far the disease had progressed, and so that the approximate rate of neurodegeneration could be charted over the coming months, and hopefully years.

Neither Mr Peterson nor I had ever heard of progressive supranuclear palsy. Dr Bradshaw told us that it was a rare degenerative disease, which affected a specific area of the brainstem, causing a deterioration in certain sensory and motor functions.

‘I’m sorry, Doctor,’ I said, when Dr Bradshaw had finished speaking. ‘I don’t want to tell you how to do your job, but from what you’ve said, I think you’ve definitely made a mistake. Mr Peterson’s motor problems have nothing to do with his brainstem. That much seems quite obvious. And as for his eyes, the optician said there’s hardly even a problem there. It’s just a minor difficulty in one direction.’

Dr Bradshaw waited patiently for a few seconds, then said: ‘I know this must be extremely hard for both of you, but there’s no question about the diagnosis. It’s likely that the existing mobility issues have actually masked many of the more obvious symptoms for some time. And when it comes to the visual symptoms, these are subtle but very specific. With the correct tests, they’re virtually unmistakable.’

‘
Virtually
unmistakable?’

‘The visual tests are corroborated by the MRI scan. It shows a small but evident atrophication in the midbrain. It’s an area that controls eye movements.’

‘I know what the midbrain does!’ I snapped. I turned to Mr Peterson, who hadn’t spoken since the diagnosis. ‘I think we definitely need to get a second opinion on this.’

Mr Peterson stayed silent for a few more seconds, then said: ‘Alex, I want you to keep calm and quiet. I don’t need a second opinion. I need facts. Doctor, this condition’s gonna get worse? That’s what progressive means in medical terms, right?’

‘Yes. I’m afraid that’s correct,’ Dr Bradshaw said.

‘Is there any treatment?’

‘There are palliative treatments that may help to control the symptoms; physiotherapy often helps to combat some of the initial motor problems. We can also try you on a drug called levodopa.’

‘And what does that do?’

‘It’s a dopamine precursor,’ I said. ‘It’s used to treat Parkinson’s. You don’t have that either.’

Mr Peterson looked at me but didn’t say anything.

‘You’re right,’ Dr Bradshaw said patiently. ‘Levodopa
is
used to treat Parkinson’s, but it’s also effective in some – though not all – PSP cases. Similar areas of the brain are affected in Parkinson’s and PSP, and some of the symptoms overlap – though the impairment of motor function isn’t so evident in the early stages of PSP.’

‘But none of these things is gonna help long term?’ Mr Peterson asked. ‘They’re not cures, right?’

‘No. They’re not cures.’

‘How long do I have?’

‘You need to understand that there’s a high degree of variance among cases. There are reasons to be positive. It’s not—’

‘Please, Doctor. I want to know how long I’ve got and what I can expect in terms of future symptoms. You don’t need to sugar-coat it. And leave out the jargon.’

Dr Bradshaw nodded. ‘Typically, PSP sufferers live for another five to seven years after the initial onset of symptoms. But as I’ve said, there may be cause to think that some of your motor symptoms have been present for some time without diagnosis. Visual symptoms usually occur at a later stage. Without a clearer picture of when the symptoms first started, it’s difficult to predict how quickly the disease will advance.’

‘How long after the first
visual
symptoms do people typically survive?’

‘Three years.’

Mr Peterson stayed quiet for a few moments. ‘And what will happen to me in those three years? What usually happens? I need the facts.’

‘I’m afraid your vision will continue to get worse. You’ll find it harder and harder to move your eyes, and your other motor skills are going to deteriorate as well. Eventually, you won’t be able to walk any more. Your speech will become impaired, and you may have considerable difficulty swallowing. In the long term, you’re going to require full-time care. I’m very sorry.’

Mr Peterson nodded. ‘Thank you.’

‘You need to know that there are lots of different support mechanisms that will be available to you. But I think it would be better not to talk about these in too much depth right now. I’d like to arrange a follow-up appointment, ideally for sometime next week . . .’

I stopped listening.

‘I think we need to speak to Dr Enderby,’ I said after we’d left the appointment. ‘I’m sure that he’ll be able to direct us to someone who’s a bit more—’

Mr Peterson raised his hand. ‘Listen, kid. I know you’re very upset right now, but this isn’t helping me. Please, just let me deal with this.’

‘But—’

‘I don’t need a second opinion. What I need is some time and space to think. And so do you.’

I didn’t say anything.

‘Look, I know this is probably asking a lot, but right now, I need you to keep this to yourself. I don’t want people knowing. I don’t want to have to face a barrage of sympathy every time I go to buy milk from the store. For the next couple of months, I’m gonna need some normality – some privacy – and I’m not gonna get that if the whole goddamn village knows. If you
have
to talk to someone, then talk to your mother, but tell her the same as I’ve told you. I know it’s gonna be difficult, but you need to respect my wishes in this.’

‘Of course I’ll respect your wishes,’ I said. And I knew it would be easy enough. After all, there wasn’t really anything to say.

When I got home, I told my mother the truth: the hospital hadn’t been able to tell us anything useful. It was largely guesswork based on insufficient evidence. If there
was
a problem, it was obviously something quite trivial.

Lucy was pregnant again. We didn’t need to take her to the vet to establish this. We were familiar enough with the signs, all the subtle changes in her mood and behaviour. I’ve no idea which litter she was on at this point – maybe her sixth or seventh. Her desire and capacity for reproduction was interminable, and for some reason, my mother seemed to grow more satisfied with each additional batch. She had an ongoing theory that Lucy always conceived on nights with a full moon, and she was certain – based on her best estimate of ‘how far along’ Lucy was – that this latest fertilization provided further evidence to that effect. I had to listen to all the ridiculous details of this theory twice, once at home and once at the shop, where they were recounted – at great length – for Ellie’s benefit.

I was working because I wanted something mindless with which to occupy myself, and my mother’s shop had seemed the best option. Additionally, I’d decided that I should start saving money for university in four years’ time. I knew that living in London was not going to be cheap. I also had it at the back of my mind that if I worked all summer, I might be able to save enough money to buy a telescope, which seemed a necessary first step if I wanted to be an astrophysicist. I had a pair of 10x50 binoculars, which were okay for the moon and open star clusters and some of the brighter deep-sky objects such as Andromeda and M42 and so on, but they weren’t powerful enough to split close binaries or pick out any planetary detail. At a push, I could see that Saturn was an elongated smear rather than a point of light, but I’d need a lot more magnification to resolve the rings.

Summer was really the only time when the shop was busy enough to employ three people – especially on days when my mother had to do a lot of readings. My job was always working the till. I was good with money, but I wasn’t good at advising the customers about the different tarot packs, or which crystal was best for protection or stress or period pains or whatever. My standard response was that I was sure they were all equally effective. When it was very busy, the work went quickly. It was the slack periods I didn’t like. Then there was no barrier between me and the incessant yabbering of my mother and Ellie, who were constantly buzzing like mosquitoes in the background. And sometimes – even worse – they seemed inexplicably determined to drag me into whatever lunacy they were discussing. The cat conversation was just a particularly bad incidence of this ongoing scenario.