Fanfare for the uncommon man

You would have quickly warmed to Guy, an old friend and colleague, whose funeral I attended today. For those of you that knew Guy, here are some of my reflections on a side of him you may not have seen. For those who didn’t, let these serve as an introduction to a man I think you would have liked. An exceptional man. An uncommon man. Three of us – an anaesthetist, myself and a surgeon – delivered eulogies at today’s funeral. The following are my reflections as spoken:

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I probably knew Guy from a different perspective. Whereas many of you will know him as a clinical colleague, I knew Guy as a research scientist. A small difference you might think but perhaps a telling one.

I think there is a world of difference between science and medicine. Medicine trades in confidence, in certainties and in answers. That’s medicine. But it’s not science. The currency of science is doubt, introspection and questions. And to be good at one does not necessarily make you a skilled practitioner of the other. And yet the very best of medical science exists at that interface. Others can speak of Guy’s clinical acumen but I would like to say a few words of him as a scientist.

For a decade or so I ran a research laboratory in the Anaesthetics Unit at the London Hospital. Guy joined the group around 2001 to do research on the biochemistry of head injury – a clinical problem addressed in a scientific way. And for the several years that I knew him, he brought a clinical perspective to that science, staring down the microscope but always asking how  what he saw was relevant, how it would be meaningful to patients. And he asked the same of his clinical colleagues. How could his research in the laboratory be of most benefit?

But Guy was no dull dry academic. Guy brought enthusiasm to the research. I had one golden rule in my laboratory – that nobody was to ask me serious scientific questions until I’d had my first coffee of the morning. Only then was I available to discuss science. Guy had no time for  such constraints Many was the time he would greet me in the morning with two cups, a cafetiere of hot coffee and beaming smile. Who could resist?

Guy brought commitment to his work as well. On his desk in the laboratory was a small post-it note with a quotation. “Perfection is unattainable. But if you chase perfection, you can catch excellence”.  By V. Lombardi. I  asked him who Lombardi was, expecting perhaps a 17th-century Italian philosopher. He laughed. “No” he said, “head coach of the Green Bay Packers”.

Certainly I could speak of his kindness, of his humanity and generosity – very human characteristics and expressed in full in his own personality.  I could tell you stories about lions and tabby cats, of long drives over the North Yorkshire Moors, of getting lost in Paris, of his fondness for the Goon show. All part of Guy’s time in the laboratory. But I think when you come to sum up a life, it goes beyond their own actions. It extends into the actions and thoughts of others. Are there things that we do differently or   ways in which we think differently because we knew Guy? I think there are. And I think Guy lives on in those thoughts and actions.

To quote a line from Blade Runner, one of his favourite science-fiction films, “The light that burns twice as bright burns half as long”.

‘My Way’

One of the most popular songs played at funerals is, you will not be surprised to hear, ‘My Way’, that self-aggrandizing hymn of defiance, associated with and immortalised by Frank Sinatra. It never fails to raise a collective wry smile among the grieving on hearing that the normally retiring Mr Albert Thwaite did it his way. Leaving aside the thorny question of what his way was, it’s usually pretty clear that Mr Thwaite did not. Do it his way I mean. A life of kowtowing to some nameless council boss was not what Sinatra had in mind. So unless you count that unfortunate episode with the karaoke machine Ethel hired for cousin Gladys’s 21st birthday, Albert did not do it his way. And many who heard his treatment of the aforementioned song that day, fuelled by two glasses of Tesco Amontillado, are still reluctant to talk about it.

Albert’s rendering of the song that day remains etched in the memory of any who heard it. Not everyone recognised the song, so idiosyncratic was the performance. Many who did never thought of it the same way again. Somehow Albert managed to condense the anger of a lifetime of servitude into three minutes of jawdropping catharsis. In some ways that is what the song is about. Just not Albert’s apparently arbitrary and wandering choice of key and tempo. Listeners stared at their shoes as the song ended. After several seconds of tumbleweed, Ethel broke the embarrassed silence with a single handclap and invitation to guests to address the buffet.

Albert was buried in an old dark suit, it’s lining long since given over to moths. Nobody mentioned the song.
Least said this, thought Ethel.

Howard Hughes can legitimately claim to have done ‘it’ his way. Bill Gates and Steve Jobs the same. Their lights burn bright, their greatness unequivocal, their single-mindedness unassailable. Men who genuinely did do things their way. But what of the millions in between Albert and Bill, Steve or Howard?

Tomorrow I shall attend the funeral of a friend, a clinical anaesthetist and one of my former PhD students. Neither Albert Thwaite nor Howard Hughes. I’ve been asked to say a few words about the person I knew all those years ago. Others too from different parcels of his life. And above all it has made me aware of how compartmentalised our lives are. The messages of remembrance each provide another piece in the jigsaw. I can only speak of the time I knew Guy. He was a gentle man and a gentleman. The product of his upbringing and strong parental models. He was an only child and in many ways a private man. But at the same time he was gregarious and entertaining. Larger-than-life if you will. Not many knew that he enjoyed heavy rock music and among his final acts was the choice of music for his own funeral. Logically this would be the point where I draw the strands together and say that ‘My Way’ was among the choices.

Mercifully it wasn’t.

He chose ‘The Chain’ by Fleetwood Mac, reflecting his love of Grand Prix racing (the instrumental solo in the middle of the song associated forever with TV coverage of racing) and, little-known by others, the fact that he played the bass guitar himself.

Mr Blue Sky was another perfect choice. Patients loved him. His bedside manner was calm and encouraging, reassuring anxious patients, soothing jangled nerves of the preoperative patients. In many ways he was Mr Blue Sky.

And the final song? Growing up on the south coast, with its chalk scarps and green fields, it could only be one – White Cliffs of Dover sung of course by Vera Lynn. The perfect choice.

Guy would never have claimed to have done it ‘My Way’. He would have snorted at the absurdity. Guy knew, better than most, that life throws spanners into the best laid plans. He knew that life was about doing the best you could, where you could and how you could. He accepted no grand design, no masterplan from on high, just the simple pleasure of knowing that he had done his best. It wasn’t necessarily his way or anybody else’s. It was just the way. And that’s all that mattered.

Dumbell

A good friend of mine has an observatory in Malta. Well, I probably make that sound more grand than he would feel comfortable with. It is not Mount Palomar or the Hubble space telescope. There are no huge white domes here with massive mirrors and lenses. This is on a much smaller scale – basically a reflector telescope on a rooftop. Not a colossal structure but nevertheless, in the sense it has a telescope trained on the night skies, it is an observatory. Keep that in mind whilst I tell you more of where this telescope has taken him.

JR would be quick to tell you that he is an amateur not a professional astronomer. Astronomy is many things to many people but for JR and myself it is mostly about staring in gaping awe at the majesty of the heavens rather than computing, calculating and correcting the orbits of objects so terminally uninteresting as to leave even the theoreticians cold. JR is all about the beauty of the heavens and their visibility.

Astronomy is not about numbers (well it is but we will come to that in a minute). It is a paean to beauty and, if you are of that leaning, doubtless speaks to you of creation.

Over the last several years JR has taken a series of breathtaking photographs of what we astronomers call deep sky objects – deep sky in the sense of being way beyond our own solar system. Galaxies, globular clusters of stars, nebulae, supernova remnants, the fragmented graveyards of red giants and the blue nurseries of infant suns. These are the places where stars are born. Elsewhere stars at the end of their celestial journey fade into darkness in a final ruddy glow.

I was quick to dismiss numbers earlier but of course there are necessary to find your way round the heavens. Every astronomical object has a location in right ascension and declination, in essence it’s postcode. And whilst you can locate each nebulae or galaxy with little more than that, the faintest nebulae will still be darker than the most penetrating eyesight. So rather than stare into the darkness itself, why not use technology to one’s advantage? A laptop, some software and a motor drive on the telescope allows one to find and photograph things you cannot even see. And of course you don’t even need to enter the coordinates on the scope. You can do it through the Internet.

All of which is rather long preamble to last Saturday night when JR invited me, through the power of the World Wide Web, to take a photograph of a deep sky object of my choice. I think partly it was an exercise on software compatibility, to see whether one could take pictures remotely. But I didn’t need to be asked twice. I jumped at the chance.

But which object should I photograph? The Horsehead nebula? Perhaps the globular cluster in Hercules? Or how about the Ring nebula in Lyra? Or the Sombrero Galaxy? It was like a chocolate box with all your favourite soft fondant centres and no nut clusters.

I chose the Dumbbell Nebula (Messier catalogue M27), a planetary nebula discovered in 1764, in the tiny faint constellation of Vulpecula (the little fox). An elegant little nebula – not perhaps a premiership object but pleasant nonetheless with a white dwarf star at its centre surrounded by a gaseous veil.

We linked the two computers – in Kent and Malta and, before I knew it almost, I was giving the scope its coordinates and watching as it revolved into position. It would take several long exposures but as it did so we watched the image build on the screen.

I would like to say that it was my photograph based on less than an hour of learned expertise but the truth was that it was a collaboration between myself the neophyte and JR the expert. Not to mention a pricey telescope, software, camera and more. It was by no means my solo!

DBS Diary 05: The letter

It’s one thing knowing that your operation is to take place in the autumn but quite another to know exactly the date and location. The email (or perhaps that should read THE email) arrived today, confirming in black and white, the date when I go under the knife. No, I’m not going to announce it here but let’s just say that if it goes well, there will be fireworks!

Immediately after reading the email, I begin to notice a change in myself. Suddenly things previously only discussed in the abstract are transformed subtly into tangible realities. And that makes all the difference. ‘In the autumn’ is vague and comforting. The ‘Xth of November’ is unsettlingly immediate. Okay it’s two months away. Plenty of time to pack my hospital bag and be ready. Ridiculous then, as I did, to fish out an overnight bag and start packing it. Better to make a list. And calm down.

I sat for a moment or two on the edge of my bed while I gathered my thoughts. I’d be lying if I said I wasn’t nervous. No matter how routine the procedure, how skilled the surgeon and how reassuring the statistics it is still enough to raise the heart rate a little. That’s only natural. Any procedure in which your brain is opened up to the atmosphere, however briefly, is likely to engender at least a modicum of anxiety. After all, we have evolved skulls for very good reasons – to keep the brain in and the atmosphere out. Neurosurgery respects no such distinction.

Reduced to its basic acts, the surgery is straightforward. You could do it on the kitchen table*.

1)       Toss a coin – heads  for left, tails for right.

 2)      Saw a hole on one side of the skull using a drill and a circular saw attachment (£29.99 in B&Q until the bank holiday). Oh, about the size of pound coin I guess.

3)       Jab the brain with the electrode (that’s the one that looks a bit like a cocktail stick). You might want to practice this stage beforehand – say with a cocktail stick and maybe a raspberry milk jelly until you’ve got the hang of it. Better safe than sorry.

4)       Fill the hole with Polyfilla (or whatever the surgical equivalent is) and drag wires out under the skin to the chest. You remembered the wires, right?

5)       Implant the battery pack (about the size of a Baby Bel cheese portion) on the left-hand side of the chest and connect to the electrodes.

6)       High five the surgical team, wake up the patient and wash down the table ready for the kids tea when they’re back from school.

7)       Succumb to a brief moment of panic when you realise one of the Baby Bels for the children’s tea is missing. Turns out to be in your pocket.

8)       Note to self: cheese has no place in the operating theatre.

Joking aside (you did realise I was joking, right), the first part of the surgery is genuinely Neolithic. Boring holes in the head (trephining) was a popular treatment for insanity, seizures and headaches in those cave dwelling times. If leeches didn’t work, opening up the skull was the next step in the Neolithic manual of medicine. Amazingly, some of those trephined survived. Well, long enough to have the procedure repeated – there are examples of Neolithic skulls with evidence of repeated trephining, some holes being partly healed.

As I write this I realise that I’m probably not painting the best possible picture for those whose enthusiasm for DBS might be wavering in the light of such revelations.  I’ll stop.

Sat on the edge of the bed, my mind wanders beyond the simple list of toothpaste, deodorant et cetera. Soon I’m thinking of the whole surgical procedure and how it’s assessed. For the most part, the presurgical workup involves discussion between patient and the DBS team (neurologist, neurosurgeon, DBS nurse, and a few others) of what to expect. We talk a lot for instance about expectation management. That sounds like some kind of administrative or managerial term but it’s really no more than checking that the patient has good enough insight into their condition to know what kind of improvements to expect. In simple terms, make sure the bar is at the right height. If a patient believes DBS is a cure, they are on course for a disappointment. If they think that a small reduction in tremor is their best possible outcome, then they will be pleasantly surprised.

I like to think that my expectations are realistic and I will go through them in more detail in a later blog as D-Day, or should that be D(BS)-Day draws nigh. In general, I’m more interested in numbers now. I am no longer satisfied with verbal descriptions – ‘the chances of anything wrong are  very low’. what I want to read is that the likelihood of perisurgical stroke, heart attack or infection is X, Yand Z% respectively. For the same reason phrases like ‘big improvements in motor scores‘ fails to float my boat either. I want to see A% improvement in sleep scores, a -B change in gait asymmetry and so on.

I have an innate impatience with descriptors that don’t adequately describe. After all one person’s ‘huge improvement’ is another person’s ‘better but no big deal‘. So I want to see that they both had a 15% improvement in UPDRS scores. Or whatever.

But there’s plenty of time for that. The email detailing the date of my operation invites me to get in touch if I have any questions about the procedure and the time in hospital. They may regret that. Because I have questions. Boy do I have questions.

*No, don’t actually do this on the kitchen table. Or any table. In fact, don’t do it at all. Don’t even think about doing it. This is a procedure for skilled professionals and, in case you’re wondering, no that’s not you.

LPs or CDs?

I started collecting LPs when I was 15. I can remember the record in question (Hot August Night by Neil Diamond) and the first classical album I bought shortly thereafter (Peer Gynt by Grieg). At first I bought infrequently – I was only a schoolboy and my pocket money went only just so far. But I listened to a great deal of music and consequently bought discerningly.

By the 1980s, when I was in my early twenties, with four years of university behind me, I found myself drawing a salary as a research assistant. In terms of stacking up the vinyl I had money to burn. Almost literally. It was an opportunity to buy all those albums I had coveted. No more months of grim self-denial. It was time to splurge.

Almost every Saturday would find me skulking amongst the racks at the HMV Shop on Oxford Street, The Virgin Megastore at Tottenham Court Road or Tower Records at Piccadilly Circus. And for classical music, nothing could beat the Music Discount Centre (formerly Ron’s Music Shop) opposite Charing Cross station. Occasionally I would dive down into the back streets of Soho in search of rare jazz recordings. The shops got to know me and would keep me abreast of anticipated shipments of specialist live recordings as they euphemistically described what everyone else knew as bootlegs. And I walked everywhere, connecting the dots between the tube stations, piecing together a retail homunculus of London’s West End.

One might suppose this to be a young man’s indulgence, put aside or curtailed by each sequential life event – marriage, children and so on, with their associated dips in spending power. Wrong. Although I never quite ever topped the unfettered retail assault of my twenties, the habit continued unabated. I am now in my early 60s and the record (LP and CD) collection stands at a giddying 4000 discs. 4000 discs in 48 years is 83 albums per year. That’s a disc every 4 1/2 days. On average. I don’t know whether I should be ashamed or proud.

The truth of it is I love music. Almost every form or manifestation of music. From the Taiko drummers of Japan to the Fado singers of Portugal. From unaccompanied folk singers in Northumbria to the Symphony of a thousand by Mahler. From the jingle jangle of Javanese gamelan to the woody resonance of a solo cello. A cornucopia of music.

And it had to be on LP or, latterly, CD. I was never a huge fan of cassettes. The quality was never adequate despite the weight of advertising trying to persuade us otherwise. Cassettes flattered to deceive. I started with LPs and postponed the decision to swap over to CD (or not) until the late 80s. I’m not sure why I was so reticent. The price differential between LP and CD was certainly offputting, with CDs essentially double the price of LPs. That wasn’t the sole cause of my caution.

Mixed messages seemed to emerge from the CD lobby. “Perfect sound forever” was the courageous claim of the CD manufacturers. Forever is a long time. And this kind of perfection was difficult to reconcile with those bizarre adverts showing CDs daubed with butter, strawberry jam and whatever. There are surely better ways of demonstrating the durability of this then new vehicle. In any case, it hardly a fair comparison. I have always taken my LPs neat – no butter or jam.

CDs were easy – put them in the tray, press play. That was it. All of it. What could be easier? I guess that was another attraction for many listeners. They didn’t need to worry about any rigmarole.

Okay so the the sound seemed better on unbuttered CDs – brighter, clearer and more detailed. You really could hear one of the trombonists quietly break wind in the seventh bar of Mahler 5. On LP, his blushes were spared by the background rumble, snap, crackle and pop of the LP’s groove. For classical music, the pleasure of hearing the music emerge from silence, apart from the occasional flatulent brass player (why is it always the brass?) was worth the premium. For rock, the claimed advantages of CD were less obvious. And certainly you would have been hard pressed to detect any trouser coughing against the backdrop of John Bonham’s drumming.

I think my reticence in changing over completely to CD was twofold. Firstly and most obviously perhaps, I liked the physical presence of LPs much more than CDs. In the early days of CDs, often the cover design was little more than a scaling down of the equivalent LP and whilst the writing on an LP sleeve was readable, the same could not be said for the minuscule text on the CD booklet. Call me picky but I quite like being able to read those background notes. Especially on jazz albums where documentation is everything – “Jellyroll Morton played this with a sprained thumb causing him to miss the entry in the second bar of Cold Ravioli Blues”. That sort of thing.

But the real root of my reticence is what I called the rigmarole. Secretly I think I quite enjoyed it. Putting the record on the turntable, carefully wiping it down with a carbon fibre brush to clear the surface dust, brushing the stylus with isopropyl alcohol before slowly lowering the arm down onto the disc. It was my way of showing my respect for the music and for the record itself. If I looked after it then it would look after me. So many of my friends paid little attention to such preparatory ritual and paid the price with records that showed their age in the ingrained surface debris and compromised sound.

And what of my LPs, mostly 30 or more years old and largely unplayed for most of those three decades? How do they sound? well, pretty good if I’m honest. With a decent if not state-of-the-art turntable, they have aged well. Protective sleeves have helped. The sound is bright and musical and whilst the flatulent trombonist is inaudible, the rest of the brass section rings out clearly.

I haven’t failed to notice the recent resurgence of LPs. And whilst I was reticent 40 years ago to change from LP to CD, I’m in no hurry to change back again. Sonically I think CDs hold the edge unless competing with the kind of turntables that need a mortgage. Pound for pound, CDs remain superior (in my humble opinion). No end of side distortion, more limited dynamic range and ever so slightly muddier sound quality. Plus, most remarkably, they often cost more than the equivalent CDs. That seems to me particularly paradoxical.

And when it comes to streaming, don’t get me started. Well at least not for the moment.

DBS Diary 03: Drug-crazed double glazing salesman

DBS Diary 03: more questions than answers. Fundamentally I had made my decision upon leaving the hospital after the meeting. I would go ahead with DBS. There really isn’t much else in the way of choice. Yes it could all go horribly wrong but the likelihood of that is very low. Yes it could abolish my tremor and help make me less stiff and more mobile. The likelihood of that, by comparison, is very high. And so on. In simple terms I’m balancing the high likelihood of major physiological improvement against the low probability that I could have a stroke or die on the operating table. It’s a numbers game, nothing more more nor less, with a very wide range of potential outcomes, mostly good. I don’t plan to dwell on the extremely bad outcome scenarios mainly because I have little to say of them. And in the case of the worst possible outcome, obviously I will have nothing to say. But I will be in the hands of men and women who do this every day. I am as comfortable with my decisions as I hope they are with their incisions.

Of course I should have done this first but, over the course of the last seven days, I have been speaking to many of those who have had DBS previously and their stories are illuminating. Not universal certainly, but personal and therefore all the more valid. Some have been reticent, others vocal and in the vast majority of cases, their information has been helpful in making my decision (neglecting for one moment that I had already made the decision). I tried as much as possible to get a random sample of the experience of DBS. I didn’t simply pick the zealots or doomsayers. In the end I think I got a good range of opinion from DAJ, DS, CHH, BC, BL, DP, VA, RB, BS, HK and BT. Among others. Apart from one or two who had a handful of what might best be described as cold feet or post-operative misgivings, the response was universally positive.

To be honest, I was a little sceptical initially. It felt as though they were all reading from the same script, all coerced into speaking the same lines. And were these people I did not know that view might have persisted. But these are all friends, fellow Samurai on the same path of enlightenment. Their views left me wondering what might have happened if I had summoned up the same courage say five years ago.

It’s academic of course. Five years ago I was at a different point on my Parkinson’s trajectory, a more positive point with sunlit scenery. Five years later, there are clouds in the sky and the feeling of rain on the horizon. So it’s impossible to compare directly. Five years ago I did not feel I needed DBS. I felt the drugs could manage the condition. Five years on, I don’t feel the drugs are doing the job. So it’s time for DBS.

When I say time, I do mean actual chronological time. DBS works best in patients who get a good response from the drugs. It is less successful later in the treatment sequence. Put simply, if the drugs aren’t working, don’t expect as much from DBS either. Five years ago I wasn’t ready for DBS. Now I am at that point of acceptance. The irony is that, had I been ready to accept it five years ago, I would have had a better response in all probability. Catch-22.

But what determines readiness? I’m ready, or at least I believe I’m ready now. And I base that on a number of factors. Parkinson’s is a neurodegenerative disease. In other words I’m getting worse. Today was not as good a day as yesterday. Tomorrow will not be as good as today. And so on. Neurodegeneration focuses the mind somewhat. Rather like those people come to the door offering double glazing at a spectacular discount but only if you sign up on the spot. That’s neurodegeneration. So, in a manner of speaking, my brain is coercing me into reluctant surgery. But surely, it’s still the same ‘me’ making the decision whether it be today or five years ago. Well, actually no. It isn’t. Because today me is taking rather more in the way of mind altering drugs (prescription I mean) than five years ago. So now my decision is being forced by a drug crazed double glazing salesman of a brain. Not surprisingly, my mind is bullied into submission. I choose the DBS. What else can I do?

Who are you?

I often wonder what kind of person reads my blog. I can make guesses but generally I’m in the dark. I don’t keep metrics on my website, I don’t know how many people like, dislike, subscribe, click or whatever. I have no notion of what smileys they would use in their response or anything like that. There is no convenient little form on the website that people may complete out in order to ask me questions. My address is on the website and, with a little hunting, can be found. I don’t list the email address in the actual form it would be used – this is in an effort to minimise the number of robotic comments that would otherwise drown the website in a tsunami of spam, a deluge of defamation or an avalanche of antipathy. But if you want to send me a message, and please do, you can find the email address under the “Me” tab on the menu bar.

Why do people visit my website (if indeed they do)? Although some people may read posts and disagree profoundly, I guess that this is a minority. Very few of us will buy a newspaper with opinions diametrically opposed to our own. We might do it every once in a while to get something approaching balance on reporting but it’s unlikely that we will persist with this self-flagellation. On the whole, people buy newspapers that agree with their outlook on life. I think blogs are much the same. People do not generally continue to read a blog if its views are consistently different from one’s own. I certainly wouldn’t. Life is too short.

So this leads me to the obvious conclusion – that your public preferences, interests and private predilections are similar to mine. Perhaps not similar overall but close enough, some of the time, to find it worth returning. I only mention this because I would like to know something of your preferences. On the whole, you and I must have something in common or else you would not have read this piece or the many others on the website.

Eventually I begin to form a picture of you as you probably do of me. I think you probably have a dry sense of humour and a sceptical view of novelty. I guess you enjoy good food and can tell your foie gras from your liver and bacon. I’m suggesting you prefer French reds to Californian whites, British bitter to continental lager, Jags to Beemers. I think you would rather have a small dinner party than a huge disco, stimulating conversation to deafening shouts, malt whisky to Bailey’s, a weapons-grade espresso to a bland Americano. Perhaps you even like Wagner, although I struggle to believe that there is many more than one person out there who does, other than myself.

I would like to believe that you enjoy my writing, not just my opinions. I like word games, alliteration and hyperbole. Sometimes I choose words with studious care, like an engagement ring. At other times I grab a handful and throw them, Jackson Pollock style, onto the page. I like to keep dying words alive – like outwith, so rarely heard south of Kelso. I like making words sing and dance or stand, like a guard of honour, in unflexing line. Do you feel the same?

Maybe I’m wrong. Maybe you are nothing like me. Perhaps you prefer skeleton dry clarity to the well fleshed verbiage of circumlocution? Maybe you merely tolerate these lexicological longueurs in the vain hope that I will eventually get to the point.

Maybe you know me. Maybe you don’t. Maybe you have a picture of me in your mind, quill in hand, writing, after midnight, by flickering candlelight. Or perhaps you see me dictating into my computer in the bright morning sunshine, sips of coffee bringing words to mind, blinking in the light.

When you write a blog, or anything really, you invite opinion, agreement, disagreement, anger, laughter and a whole bundle of other stuff. On the rare occasions that I do receive direct feedback, it is usually pertinent, well-written and unambiguous. Mostly it is to agree, in general, with something I’ve written but to question detail. Sometimes it is to argue a counter position, forcibly and directly. Most people don’t write to me if their experience is neutral.

At the end of the day I can only guess why you read my blog. What do you get from it? Will you return? Did you return even? I would love to know your thoughts.

Terunofuji, yokozuna!

I’ll let you into a secret – I have been a follower, a fan even, of sumo for more than two decades. I even have my own black silk mawashi, the loincloth in which they wrestle, a gift from a sympathetic friend. Yes I appreciate the image of me in a mawashi is not for the faint-hearted and I apologise for that.

There is, of course, no sport quite like sumo and to the non-Japanese probably none more bewildering – two fat blokes trying to push each other over, yes? For the vast majority of casual observers these notions represent the limit of their understanding. Images of inflatable costumes at comedy events. The target of contemptuous laughter rather than reflection on a serious and treasured national sport with roots in Shinto and rituals over a thousand years old. Yet to disparage sumo is to deny oneself deep insight into the Japanese lifestyle and psyche. For sumo, with its infinite emphasis on belief, symbolism, ritual and meaning holds up a mirror to Japanese society.

Professional sumo in Japan is organised into six divisions but only the top two – juryo and makunouchi – need concern us. Juryo is like a giant railway station for wrestlers (rikishi) either slipping down the rankings towards retirement or stopping briefly on their road to the top. Everyone is going somewhere – acclamation or oblivion. The top division, makunouchi, consists of 36 wrestlers subdivided into a further five categories – you still paying attention? In ascending order these are maegashira, komosubi, sekiwake and ozeki.

But that’s only four categories I hear you say. Good, you have been paying attention. And yes, there is one further category, the very apex of sumo society – the grand champion or yokozuna. I’ll come to that.

In Japan, that most hierarchical of societies, the banzuke or table of rankings is everything. A measure of one’s worth against one’s fellow wrestler. Yokozunas, East and West, stand at the top of this ranking. Below them, their position determined by their performances on the dohyo, are the remaining wrestlers. The mere champions or ozeki can lose up to a third of their bouts without questions being asked. One of the privileges of achievement. There is a certain degree of fluidity in the ranks up to and including ozeki. It’s a bit like snakes and ladders. Throughout the lower ranks, a winning record or kache koshi (8-7 or better) takes the wrestler up the ranking ladder while a losing record or make koshi has him sliding down that snake. Ozeki are given a little more breathing space. A losing record in the tournament makes the offending champion kadoban (at risk of demotion). An ozeki needs to have a losing record in two successive basho to forego the rank.

Seated high above the everyday comings and goings of the banzuke, yet central to them, the yokozunas are under close scrutiny at all times. You might presume that, if an ozeki gets two shots at retaining their rank, a yokozuna might get three. Yes? Alas no. For a yokozuna there is no such leniency. A yokozuna simply cannot lose. Nor can the be demoted. The only out for yokozunas is retirement, sometimes after not-too-subtle prompting by the Sumo Association. A yokozuna who loses more than two bouts of the fifteen that compose a tournament or basho will often diplomatically acquire an injury mid-basho that necessitates his withdrawal from the tournament. Those that eschew withdrawal and fight on risk resignation. And heaven help the yokozuna who ends a tournament make koshi. It has only happened twice to my knowledge in over a thousand years. Despite these strictures, yokozuna remains the highest aspiration of any sumo wrestler, the definition of their careers.

In many ways, yokozuna is more than a mere ranking on the banzuke. Yokozunas stand apart from the rest of the classification. While the others are wrestlers representing their own stables or beya, yokozunas are essentially gods or kings with a spiritual commitment to the sport itself over their individual beya. Promotion to yokozuna is based not just on performance in the ring, or dohyo (which nonetheless needs to be exemplary), but on their dignity of character and embracing of their position in Japanese culture. Upon promotion, many new yokozunas often spend time at one of Japan’s many Shinto shrines to get them into the right frame of mind to assume the duties of a god. That’s why Japanese wrestlers have a head start. So few yokozunas are foreign but I’ll come to that later. Fewer than one in thousand wrestlers will make it to yokozuna.

Until Wednesday there had only been 72 yokozunas in the history of sumo, more than a millennium long. On Wednesday, the 73rd, Terunofuji, a Mongolian rikishi was chosen. Making a brief appearance for the media, Terunofuji thanked the authorities for their endorsement of him and promised to uphold the historic values of the yokozuna.

Terunofuji’s promotion marks the final step in what has been an unprecedented climb from the depths of the banzuke. But in reality his promotion masks flaws and inconsistencies in the appointment of yokozunas. Many overseas wrestlers feel they have to exceed higher qualifications than their Japanese equivalents in order to be found in possession of hinkaku, that elusive combination of power, skill and dignity upon which putative yokozunas are assessed. Often overseas wrestlers are found wanting in one or more of these nebulous criteria and fail to make yokozuna. Nowhere are the criteria written down. Typically at least two tournament victories without a lapse in performance in between are needed for consideration as yokozuna. Occasionally, for a Japanese wrestler such as Futahagaro, at a time when there were no other yokozunas, the bar was set as low as two runner-up tournaments. He never won a single basho as yokozuna. Or at all. Scalded this by the fallout from the premature promotions of Futahaguro, Onokuni and others, the board has tended to be reticent in its more recent dealings. Terunofuji was given the target of three successive tournament wins or equivalent, a breathtakingly tough and exacting requirement. Nevertheless he won in March and May. On Sunday he finished second only to Hakuho, fulfilling the criteria set out. And on Wednesday he became the 73rd yokozuna. Here’s how.

Banzai!

DBS Diary 02: Rolling the dice

Yesterday was the big day. Well, technically, one of a number of big days. But, in this case, the day upon which all other days rest. The day I met the hospital’s multidisciplinary DBS team and they had a chance to meet me. Four of them, two of us (my younger daughter came to assist) and a nominal three quarters of an hour to answer some pretty big questions. Put like that it begins to look like speed dating. Except for the fact that several of them wanted to stick electrodes in my brain. Not there and then you understand but at some point.

I was expecting a sales pitch in essence. I was expecting to be bowled over by hyperbole and misplaced enthusiasm. I could not have been more wrong. We talked about realistic expectations, about side-effects, about benefits and so on. And all in the most sober down-to-earth manner. They did not try to “sell” me on the idea of DBS. Throughout the consultation they emphasised that it was my decision and mine alone whether to go ahead but that, in their view, I met the criteria for DBS. The ball was in my court.

But the thing that impressed me most was their willingness to bandy numbers with me. Now, as you know, I am a grizzled old neuroscientist, strong on statistics, light on fluffy feelings. Like so many scientists, I am unmoved by “very rare” or “relatively common” or “in a proportion of cases”. One man’s “very rare” is another man’s “not at all” or “rare but not unknown”. It reminds you the old Woody Allen joke about the man and his wife separately seeing their shrink and answering the question “how often do you have sex?” with “hardly at all – maybe three times a week” and “constantly – maybe three times a week”. Well it made me laugh. But my point is that descriptors provide nuance but not detail.

Start using numbers and it’s a different matter. The moment you start saying “one in 30”, “62%” and “11/19”, you have my undivided attention. I understand numbers. Numbers are the language of science. My PhD supervisor and good friend Zyg had a very simple maxim – “if you can’t describe it in numbers, it’s not science”. Although I might quibble over the minor details, it nonetheless carries weight as a general rule. And so it was yesterday. They spoke to me in numbers, instantly setting me at ease.

In the end, DBS surgery inevitably presents risks. They explained them to me in numbers – my likelihood of dying, of being seriously damaged, of minor complications, and all the perioperative niggles. And they gave me the numbers for improvements in tremor, movement, stiffness and so on. And they told me all the things that DBS would not help such as balance, even gait to some extent. Each number was presented neutrally, with no change in expression to indicate personal views although, in fairness, the facemasks probably eliminated all nuances of expression anyway. Itwas all a case of deciding where the risk-benefit fulcrum lay and totting up the numbers.

My daughter and I were a good double-team. I would pitch in with the question, then she. We alternated, each presenting a different facet of our collective anxieties. And one by one they answered each to our satisfaction.

Perhaps the most personally satisfying moment occurred when I expressed my reservations about the likelihood of achieving the kind of results found in younger PD patients since I’m 63. The surgeon, with a smile I could see behind his mask, said it’s not a case of chronological but functional age and he had seen my MRI scans and was satisfied that this was a good brain without evidence of atrophy. In essence the cranial cavity was filled with brain rather than cerebrospinal fluid. Good to know. And fingers crossed of course.

All other things being equal, they felt I was a good candidate and were happy to operate with one proviso which I’ll cover in the next blog. The whole tenor of the discussion was positive and engaging. Once I had DBS done, I was part of their family forever. It was more than just a surgeon/neurologist speaking to a patient. They would look after me. It was warming.

Their final words to us, as we left, were that we did not have to make a decision on the spot. We should take some time, reflect upon it and then let them know the answer.

My daughter and I headed to a nearby coffee house to regroup and discuss what we had heard. Nothing is of course without risk. Would I considered this procedure 10 years ago? Obviously not. And I know for a fact that I didn’t even entertain the idea, so determined was I to fight the illness in my own way. But time brings a degree of maturity and understanding. We throw away the foolish fancies of youth and make sober judgements where once we would have dismissed with flippancy. But back then I needed DBS like a hole in the head (I’m sorry, I couldn’t stop myself).

Now I recognise it for what it is. Part of the modern armoury in the treatment of PD. Who knows, it may one day be a condition remedied entirely by surgery. Wouldn’t that be funny. True the procedure is mediaeval, barbaric even. Liked trephining, practised in Paleolithic times. Maybe they had DBS 3000 years before Christ. (No, don’t rush to Wikipedia). It’s not a serious suggestion.

Even for somebody who revels in numbers, it is quite sobering to apply them to one’s own predicament, to reduce one’s own future to a series of calculated risks and gambles. Rather like Douglas Adams’s computer in The Hitchhiker’s Guide to the Galaxy, my future could be described by a relatively simple quadratic equation. The probability of this, the likelihood that, the risk of the other. All reducible to numbers. Yes, things could go horribly wrong. I might even die. It is technically possible but extremely unlikely. Much more likely is that it would go well and I would achieve at least some meaningful benefit for the next several years. It comes down to a balance of probabilities, nothing more nor less.

I caught the train home with the surgical team’s words echoing in my ears. It was my decision and my decision alone. “Take your time”. I didn’t need to.

It’s time to roll the dice.

DBS Diary 01: How I reached this point

DBS Diary 03: The hard yards

Not quite the end of the road

I had a phone call yesterday afternoon. The usual thing – number withheld. Not normally the kind of phone call I would answer. Mostly nuisance calls, people trying to sell me insurance, invitations to timeshare evenings, free valuations of property and the usual get rich quick schemes. Experience has taught me not to answer these calls. The vast majority leave no message.

But for some reason I can’t put a finger on, I decided to answer this one. A soft-spoken Welsh voice asked for me by name, explained who he was in a manner credible to me and asked a couple of legitimate security questions.

He explained that they had received my letter of a few weeks ago outlining my concerns over their decision-making process, acknowledged the validity of my arguments and had chosen to reverse their original decision. A couple of letters would follow within a few days to confirm what he had said by phone. I thanked him politely and he reciprocated, thanking me for my understanding.

Who was it? The DVLA.

And the decision? To rescind their original revocation of my driving licence and to reinstate the aforementioned.

I have always felt that there is virtue in civility when writing letters of complaint. When the DVLA had originally revoked my driving licence I chose, rather than write a long tirade of angry impotent bluster, to present my arguments politely but firmly, inviting them to think again, to reflect upon what I felt was too hasty a decision.
In essence I asked them, in the general tenor if not explicitly the same language of Oliver Cromwell:-

“I beseech you, in the bowels of Christ, think it possible you may be mistaken”.

I didn’t actually use Cromwell’s words but the sentiment was there.

And as I said, he thanked me for my understanding. “Most people just rant and rage at us” he said.

“I can imagine” I said.

Manners … Maketh … Man.