What time is it?

“What time is it?” asks one of the patients of his next door neighbour.

“Quarter to three”  He announces  firmly, without looking either his wristwatch, or the clock on the wall.

(It is in fact 11:30 am)

“So,” continues Patient  One, “What’s your name then?”

“Derek”

“Frank?”

That’s right, I’m back in hospital again.

Back in the parallel universe, whose space/time contiuum is so warped, that days can last as long as weeks just as surely as hours may fly by in seconds.Where the most improbable things are commonplace, and are treated as nothing out of the ordinary, Like in Flann O’ Brien’s absurd and perplexing “The Third Policeman”, you reach a point, eventually where nothing is a surprise, such that one begins to wonder whether ‘The Real World’ actually exists out there at all. Or whether ‘the ward’ consistutes its own reality and all that goes on outside its confines is actually nothing but a figment of your own imagination.

Weird shit

And of course, on a Neuro ward you get more than your fair share of weird shit happening.

Take Malcolm. A bit of a music fan, one of the many symptoms of his condition is short term memory loss. So he uses a Dictaphone to record the names of CDs or tracks by artists he wants to download or buy …. and his lottery numbers, so he doesn’t forget. Every night, after his sleeping tablets have taken effect, but before he has turned the damned thing off, the rest of the ward is treated to a seemingly endless loop of the day’s messages to himself:

“‘Theme from S Express’… Hot Chip… David Bowie… ‘Kinky Afro’ by Happy Mondays… Seventeen!”

Also suffering memory loss and poor eyesight, there’s Ned. So called because his alarming resemblance to Simpsons’ Ned Flanders (inc. yellow skin)

He constantly pesters the nurses in the most nauseating way,

“So where do you live then?”

“And is that a house or flat?”

“And what do you prefer? Indian or Italian food?”

Minutes later, the long-suffering nurse is bombarded with exactly same barrage of questions.

I overheard him one morning. He was being attended to by two nurses, one male, one female. She was doing all the talking. At one point, without warning, she went off to get a blanket, leaving the male nurse to continue with the bed. I don’t think Ned realised, firstly there had been two nurses by his side, and that now he was left with only one – the male nurse.

Off he went:

“So where do you live then?”

“Edgeware” (My goodness! She has a sexy, throaty voice)

“Edgeware? I know Edgeware. Whereabouts?”

“Richardson Road”

“Richardson Road? Eh?…. Er, have I just asked you that?”

“Yeah about ten  minutes ago”

“Richardson Road, Edgeware. I’ll make sure I don’t forget that in future”

The nurse looked up momentarily and, meeting my eyes, ever so slightly raised his to heaven and muttered:

“I wouldn’t fucking bother mate, you’re still going ask me again in ten minutes”

Andy the Autonomic and his snoring! Bloody Hell! I mean I’ve known people whose snoring has annoyed or irritated me (no names) but never frightened me! After a night on the ward with him, the nurses would have to spend 20 minutes the following morning moving all the furniture back into place and retrieving small objects from his nostrils. The noise, and more than anything, the sheer power of his massive inhalations of air scared the shit out of me.

And then of course there is Yours Truly, who on the night after my op was convinced my bed was a 750cc Honda Fireblade, I just couldn’t work out how to get the blanket over the petrol tank. I tried numerous configurations – some at high speed – until exhausted by my efforts I went back to sleep.

Mount Vernon

In fact, I am in Mount Vernon Hospital which from its vantage point on the Middlesex/Hertfordshire border looks out across North West London. The hospital and its surrounding land was the gift of Charles Dunnell Rudd at the turn of the last century. Rudd was a partner of Cecil Rhodes in the De Beers Mining Company. During the First World War, as well as its British patients, it played host to French and Belgian soldiers suffering from tuberculosis. The patients were expected to work or exercise for an hour and a half in the morning and two hours in the afternoon to prevent them becoming ‘self-centred and lazy’. Those who could work outside did gardening, maintaining the grounds and pathways. Just what you’d want I suspect after two years digging trenches at the front. It even treated German prisoners of war between 1939 – 45.

The old chapel

It consists of a whole range of buildings in a bewildering collection of styles from the bizarre York Sandstone and flint gloomy Art Nouveau chapel, which was never consecrated and is now The Cancer Research Campaign’s Gray’s Library, to timber-clad Swiss-style chalets to utlitarian ‘boxy’ system-built things (like this one) to constructions which appear to have come straight out of a De Stijl book of architectural templates from the ’20s.

My room, third big red window on right, top floor. Four Star

And then there’s the ‘Main Building’ A cruciform shape which houses the cafe with its high-beamed ceiling, a dark building replete with green tiles (like the Paris Metro, it says here) and ornately carved staircases. Here hang the plaques in memory of Rudd and Benjamin Abbott Lyon, the hospital’s chairman 1884 -1909: a bygone age of practical philanthropy. The foundation stone was laid by the Princess Christian in 1902: she must have been a strapping lass as it is set into the wall about four feet up. It must have taken a bit of lifting! I guess they had stronger backs in those days. From the outside  you follow the path round to the front (it is only at this point you realise that till now you have only been looking at the back and the side of the main building) and are rewarded  by the sight of a beautiful south-facing two storey curved  facade behind which are light and airy wards. A balcony with white balustrade stretches its whole length, and in the centre, a clock tower with bright green copper roof and flashing. All of which look out over a lawn which ever so gently falls away to the shrubs and trees at the bottom. Back in the day these would have been pruned to allow uninterrupted views as far as Windsor and beyond. I close my eyes. I half expect that when I open them again, the lawn to be peopled with nurses in starched white uniforms and caps, wheeling young men, smoking pipes, tartan blankets covering their legs whose brilliantined hair glints as they enjoy the late evening sunshine.

Facade and clock tower from lawn

Oddly enough not more than a few yards away from this grand but delapidated nod to an era so far back it may as well be ancient Egypt, is the consulting room in which I was given my diagnosis. Twelve years ago. My wife was with me.

Well, it seems your GP was correct

“Well, it seems your GP was correct, you have Parkinson’s Disease” I remember distinctly the tall beech trees that I could see behind Consultant Neurologist Richard Crawford, through his window. I was transfixed by them as they swayed in the stiff breeze. His words seemed to echo around the room, while briefly, still captivated by the trees I left my body and looked down on the scene in the room from somewhere above the window but which still allowed me a view of the trees as well. The gentle squeeze of my left hand brought be back down to earth, and back to the body, destined to be a battleground for the rest of my life. Crawford leaned back in his chair and began to chew on his spectacles. He had taken off his jacket earlier when he got me to do the gait tests (to my humiliation, out in the corridor in front of a packed clinic waiting room) and sat there in blue striped shirt and tie with red braces. He began to speak. His eyelids closed and fluttered as he did so. There was the tiniest hint of a stammer in his voice. God knows why, but I imagined him as a schoolboy. Public school of course: taunted, teased and bullied because of his blessed stammer and, I suspected, a complete lack of co-ordination and interest when it came to sport. I found myself feeling sorry for him. Strange, really in the light of the news he had just given me. I first saw him a little under a year ago, with the same symptoms. Stress and Writer’s Cramp he concluded. I think he knew then, his diagnosis possibly intended to ‘buy’ me a few more worry-free months, maybe more. In the event, it did the exact opposite: the intervening year being one blighted by increasing concerns as to whether there was something wrong with me or whether it was all in my head. By rights, I should be on his desk now slamming his head in the drawer.

“I think it would be wise to start with medication straight away. How do you feel about that?” “Mr. Daly? … How do you feel about that?” Another gentle squeeze of my left hand, and I was back in the room again. “Yeah. OK I suppose”

Parkinson’s Disease? What was it? I had no real idea. I knew that it was incurable and that it manifested itself as a tremor or shaking; none of which I had. Was it killer? How long had I got? How was I going to tell my Mum and Dad … the Kids? That’s all I could think of.

As we left the clinic I wondered how many other recipients of bad news there were still sitting unawares in the waiting area.

My senses sharpened and heightened, I remember the rest of the afternoon clearly. After walking down past the plaques, green tiles and staircases to the pharmacy to collect the medication, I drove us home. And you know what? In what is probably the kindest thing anyone has ever done for me, and something I’ll never forget, my Wife popped a tape cassette into the machine in the kitchen and pressed Play.

It was an interview with Saxophonist Barbara Thompson, who I was a big fan of, during which she talked about her own diagnosis with Parkinson ‘s and how it shouldn’t be thought of as a death sentence. My Wife had heard it on ‘Womens’ Hour’ and recognised that she was describing exactly the same symptoms as mine.

She aleady knew what was coming earlier that day in Crawford’s office.

She had collected a variety of information: leaflets and advice from the Parkinson’s Disease Society.

And I began to read.

I’ve really fallen on my feet this time! I am in the Northwood and Pinner Community Unit housed at Mount Vernon. Basically a rehab unit for elderly patients which aims to stabilise them prior to their discharge back into the community. And lucky old me has blagged himself a single side room with a spotless en suite bathroom, bigger than that at home. I wonder whether my threats to kill the ‘all night talker’ who kept me awake during my first night on the ward had something to do with it.

I am waiting for a transfer to The National Hospital for Neurology and Neurosurgery. Some six months ago I had the surgical placement of the hardware necessary to enable Deep Brain Stimulation (DBS) Namely bilateral implatantation of titanium leads, both of which carry four contacts, in the Subthalamic Nucleus of the brain and a constant-voltage Implanted Pulse Generator   under my collarbone during a seven hour operation.

A Beginner’s Guide To Deep Brain Stimulation Surgery: A Practical Approach

You will need: one coconut, one cauliflower, 4 kebab skewers, copper wiring,  AM Radio,  power drill and a new potato.

For those of you struggling to visualise the brain anatomy here: take your  cauliflower, it’s kind of that bit just above the stalk. We can replicate it by using a small new potato. Use some cocktail sticks to secure it. Your coconut is the skull. You’ll have to split it (Carefully retain cranial fluid and place in suitable receptacle. Add vodka and sugar later for home made Malibu) and then shave it first of course. Drill two holes (a 20mm bit should do it) with a Black and Decker or similar about 5 cm apart. It is through these that the skewers (leads containing electrodes) will access the cauliflower. (brain) Carefully stick two kebab skewers through the holes we have made into the top of the cauliflower, push them down at  angles until they enter the new potato, almost meeting at this point And there you have it. Wire the skewers up to an AM radio. If you can pick up Radio Luxembourg, you’re in business.

Actually, I don’t for a minute want you to think I am belittling the work of the surgical team who frankly leave me in awe with the kind of exqisitely accurate micro surgery they perform on a daily  basis) Programming the DBS system to optimise its therapeutic efficacy in my case has proved melon-twistingly difficult. The last configuration of contacts has caused increasing dystonia (turning in of my feet) result of which I had three falls (unlike me) I was deemed ‘at risk’ and so was admitted here to the unit at Mount Vernon as a temporary measure, while the Functional Neurosurgery team at Queen Square decide what to do next.

Caution. Walter Mitty

I am idly considering this when I am reminded of another meeting some six months after that pivotal twenty minutes in Crawford’s office. A meeting I have called to inform my employer, the Chair of Governors, Kingsmead School, via its Headteacher Neville O’ Laughlin about my illness.

I remember O’Laughlin’s first day. I was singularly unimpressed with the way he ambled to the tatty stage to take his first assembly in his Marks and Spencer suit one size too big, the backs of the trousers hanging down over his shoes in a big ‘V’ and dragging on the floor.

From Essex.

Now don’t get me wrong, I’ve got nothing against Essex or the good people who live therein. But as I think we all accept, there are a small number of its citizens who frankly let the side down on a regular basis. Such as O’ Laughlin. I had him sussed out from day one. His loathesome ‘Estuary English’ and his ‘Wide Boy’ demeanour were a giveway. What took me a little longer to figure out was whether his machinations, lies and duplicity were all part of a master plan or whether they were the knee-jerk reactions of a Walter Mitty, living in a fantasy world in which he had forgotten what lies he had told to whom in ‘off the record’ conversations in toilets and corridors.

It was the latter.

Confirmed as he became an increasingly reclusive figure surrounding himself with a phalanx of ‘Assistant Headteachers’, so desparate to hang on to their positions, and so afraid that they were prepared to do his bidding even if it meant rubbishing or harrassing colleagues and former friends.

The meeting comprised myself, O’Laughlin and Dan Morton, my union representative. Ostensibly there in the capacity of friend: to make sure I didn’t forget anything. Of course Dan’s role was much more significant than that. He was there to make accurate minutes of the meeting should it be necessary at any time to refer back to them. In a cruel irony, Dan himself was to exhibit Parkinsonian symptoms a few years later. We sat round the table. I had an agenda, which I’d given to O’ Laughlin in advance. He was flustered. I wonder whether he thought I was going to spring something on him. Evidence for instance that money from Special Needs budgets had been diverted elsewhere – allegedly.

So, it was with an expression of relief that he took my news.

“It’s Parkinson’s Disease” I said.

He fidgeted in his chair

“Well, all I can say, Andy is I’m glad it’s you and not me.”

I almost burst out laughing. Proof, if more were needed, that Neville O’Laughlin was a grade A, top of the range, gold-plated knob.

The rest of the meeting was taken up with conjecture over ‘how long I would last’, puncutated by entreaties to let him know if there was anything I needed – to ask and it would be done. I did. It wasn’t. He would even try to sort out ‘a little deal’ for me when the time came to give up. The governors (in other words He) had it within their gift to enhance final salary under certain circumstances (eg. retirement through ill health) but in my case, although having taught there for over fifteen years, it was not deemed appropriate. (I was never told why) Although this was still to come, I got a sinking feeling as the meeting went on that told me I was on my own. Negotiating the tricky path toward early retirement was to be my journey alone. They took over six months to respond to recommendations made by the borough’s Occupational Health adviser for example. But again, I’m getting ahead of  myself.

I left his office pausing only to comment to his secretary about the tiny balls of white polystyrene which lay all over her office: packing from some delivery.

“Chrys, you’ve really got to do something about your dandruff”

Me and Dan had a de-brief in the pub after work.

“What did you think of that then, Matey?”

I shrugged.

“Par for the course I suppose”

Dan took a good slug of his pint and wiped his mouth with the back of his hand.

“I’ve just fucking seen him now”

“What? …. What do you mean?”

“O’Laughlin. I’ve just seen him now. I was on gate duty, he came over to me. He says “Dan, how do you think I handled the meeting with Andy?” So I said “Okay, considering you were on the  backfoot: you didn’t know what was coming” “Yeah, he says …. But don’t they shake?””

This time I did start laughing … fit to burst. Dan began to chuckle as well.

“What a wanker! ….”

It was six years later that I called it day, most of my best freinds on the staff had moved on  by then, although that was not a factor in my decision. By then I was purely and simply knackered. If the truth be told I worked on probably two years longer than I should have done. A secondary comprehensive school is not the sort of place to work if you are not 100% fit – especially one in which the concept of a caring environment was as alien as a genuine crop circle.

Kingsmead School. Excellence through teaching (it says here) I would have though that was a basic aim of every school, but then what would I know

The truth is, my relationship with the school had always been a bit ambivalent. I recall the day of my interview. I simply couldn’t make up my mind about the place. I was already Head of Department in a successful school in Berkshire. I had just taken 105 students through their GCSE Art and Design, my prospective Lower Sixth A Level group for the new academic year numbered 15, all of whom showed great promise. Why would I give all that up to come and work in a school which had more bins than students, didn’t run A Level Art and apparently held an all-week jumble sale in its foyer? In the end I decided to leave it up to Mick Godden, Greg Hill (the then Head and first Deputy) and fate to make up my mind for me. I resolved to give the most assertive interview I could muster. If they wanted me after that then fine! I remember saying some controvertsial things about the National Curriculum and Assessment, what I felt about the way the school presented itself, and finished off with a series of demands which included (among others) my wish to be a Sixth Form tutor and for the management team to match any funding that the department raised which would enable us to work with practising artists on projects in school.

“We don’t normally de-brief successful candidates, but there are one or two points we think we should make about your interview technique” Greg Hill said as he called me back to the Head’s office. I had been offered the job and my requests granted!

An unhealthy interest in hospital architecture and decor.

And so here we are, The National Hospital for Neurology and Neurosurgery, having transferred from Mount Vernon. As I stand in the ornate black and white marble atrium, waiting for a porter to take me up to the ward, I am reading the big stone plaques which record the story of the origin of the hospital and its benefactors. Here she is again: Princess Christian of Schleswig-Holstein. She certainly got around her London hospitals. Mind you, I’m not doing so bad myself. In fact, I realise I am starting to develop a rather unhealthy interest in hospital architecture and decor.

The National. Notice the decorative lintels and the exquisite brickwork ….

Up we go and after a brief wait while the bed is prepared, I am taken in and introduced to it as well as my fellow wardmates with whom I am destined to be as close if not closer than their partners and immediate families over the next few days.

They consist of the charming Winston, unfortunately plastered, collared and braced seemingly over every inch of his body. Looking comically like some cartoon image victim, before he is reconstituted to pick up his chase again of Roadrunner or somesuch.

Michael, who is in a lot of pain and discomfort, but seems an interesting bloke, someone I would like to chat to more.

Raymond, a parole officer, whose only complaint seems to be verbal diarrhoea,

and Colin.

I don’t know Colin’s story. I don’t want to know Colin’s story. I know his hands are bandaged like boxing gloves to prevent him pulling out his own tubes and hitting the nurses.

No, Colin makes himself my mortal enemy by calling out day and night the name of his brother Neville (with an irony that is not lost on me as you will remember if you were paying attention, for that was the name of my former employer) Then, when Neville (who I never see because on visits he is always hidden by the curtain, but whose voice is the exact double of writer and presenter Danny Baker) is here, all Colin does is slag him off. I know that brain injuries are capable of changing a person’s personality in wierd and wonderful ways, but that said, I think even before his surgery Colin had ‘shit’ written through him like a stick of rock.

Matters came to a head one morning after laying in bed, listening to him abusing the nurses who were trying to clean him up after he had ripped open his colostomy bag and … well I’ll leave it at that. After the nurses had finished with him, I walked up to his bed and in my best ‘Angry Teacher’ wagged my finger at him and shouted that he ought to be ashamed of himself and how he didn’t deserve the care being bestowed on him. (Feel free to incorporate your own suitable expletives here – I did!) Then I stormed off to the bathroom to the sound of faint applause from the other end of the ward.

Colin.

From  Essex.

TBC

© Andy Daly 2012