Remembering Adam Kilgarriff

Remembering Adam

Adam died a year ago next Monday (16th May). Family and friends will be gathering on Monday evening on  Brighton beach in celebration and remembrance of Adam’s life and passing on. Following Buddhist thinking, this is an opportunity for eating and drinking with friends, and giving something away as an act of remembrance.

We would like to extend an invitation to any of Adam’s friends and colleagues within reach of Brighton to join us if you would like. We are emailing local friends separately with more details, but if we missed you and you wish to come, please email roger.evans@nltg.org.uk and we will be very happy to send you the local information.

For those further afield, or simply not able to come to the beach, perhaps eating and drinking together may still be a possibility for you, and if you wish, to share with us a moment of remembrance at 2000 (GMT+1), to mark the hour of Adam’s passing.

The ‘giving something away’ part of the remembrance is completely open to your free interpretation. As many of us know, Adam was very keen to be able to provide continued support to his Kenyan family, so we thought some friends might like to do that. To make that easier (but with absolutely no pressure), we have set up a Just Giving ‘CrowdFunding’ page for this. The URL is https://crowdfunding.justgiving.com/boris-kilgarriff and the page will stay open for about 30 days.

Adam's photo

Odd one out

Take a look at the picture of the whiteboard. Which of the messages is the odd one out?

Whiteboard_bloods2If you’re anything like me, it’s obvious. One, I understand; the others (although they are all in English, kind-of) I don’t.

I came across the whiteboard before Christmas at the hospital where they were taking a blood test to check I was OK for the next round of chemotherapy.   Apart from the season’s greeting, all the messages are reminders to nurses taking blood tests of some of the less obvious procedures to be followed when doing some of the rarer tests. It caught my eye because of the sheer strangeness of finding the two radically different uses of languages next to each other, as if they had something to do with each other. Wittgenstein said language was a toolbox with lots of different kinds of tools for different purposes: the whiteboard is then like finding the Space Shuttle launcher next to a teabag squeezer: both tools, but they have little else in common. It leaves me wanting to rejoice – isn’t language wonderful, that we can do all these different things with it! That there are all these different kinds of language, some understood by everyone, others, only by tiny communities with their own abbreviations and conventions, all allowing us to communicate as and when we want to. And as a scientist, it drives my research agenda: how can we talk scientifically about how all these different kinds of uses relate to each other? How can they be compared? Now that we linguists are getting the hang of corpora, we can start to be quantitative about the question as never before.

May be the last

This may be my last blog post.  My health has taken a turn for the worse and I’m in the ‘end of life’ phase now.  The chemo was miserable and so I reviewed my decision to continue with more medical interventions and chose not too.  I was also too weak to continue with the chemo in a straightforward way.  Instead I am on a regime designed to make me comfortable.

I’m quite weak now.  I’ve had another wonderful flood of messages from colleagues friends, and relations of caring and loving.  There have been some great ones that have recalled times that the person sending the message and I have spent together.  One I just received from an old, old friend brought back the kitchen that we decorated in a house that we lived in in the 1980’s where we took lots of time and care over mock malachite and mock lapis lazuli painted units. I loved that kitchen – and hadn’t thought about it for 20 years!

Gill and I also rummaged in the loft and found my nostalgia boxes which included diaries from my year in Kenya in 1978-9.  Maybe there is another blog project there – ‘Adam’s year in Kenya’.  We still have to discover what else the boxes contain.

Even typing feels like a draining activity now; Gill, my wife, has been helping.  Don’t count on me responding to email or skype – which I find a strange thing to say after a quarter century of being assiduous in email correspondence and having short shrift for people who lamely say “I never got the email”.

I’m not sure how to end a post that might or might not be the last.  I am at peace.  If I have more days with sufficient energy there may be more.  Perhaps that is all that is needed.

Adam

 

 

Size 11’s

Since I was 16 my shoe size has been 10 (UK size). For the first couple of years, that was big, but then everyone else caught up and ever since it has been normal. So all my shoes are size 10. Every single one of them.

With the morphine and the chemo, my feet swelled. Like balloons. As the doctor explained, I was being less active, and the body had less energy for pumping everything up from feet to torso, so there the fluids sat. This was a bit upsetting. I’ve always done quite a lot of running, and thought my legs and feet were my best feature, aesthetically speaking, but now, to look down at them was to look down on two slovenly slugs. And a practical problem arose when, after a longish period of not getting out of the front door at all, I decided I was due for exercise, and wanted a walk round the block. So I went to put my shoes on. They wouldn’t fit. Another pair. They wouldn’t fit. And another pair. They wouldn’t fit either.

Ah no – so I couldn’t go for a walk! But that was too awful, like being in prison. Walk round the block in slippers? Not good, they were tight too and it was cold and wet. Go and buy some? Yes but – not immediately, the shops were not open, and also I’d need some footwear to go to the shops in. (Shoes are one thing I’m reluctant to buy online. You really do need to check they are comfortable.) Lateral thinking required.

I have some tall neighbours. Borrow! Mick is tall. So I asked “what shoe size are you?” “Ten.” Bother.

Jamie is also tall. So I asked him. This time – 11! Bingo! They fitted a treat. A week of Jamie’s trainers, a trip to the shops, and now I have my very own size 11’s!

Yesterday was Round 4 of chemo.  All went fine, though Time flew by as the friend who was visiting told me of her undercover adventures investigating slavery on the prawn ships of the South China Sea, (like prisons themselves, enormous and not coming in to land for years on end) and the Burmese refugees in Thailand who get press-ganged into manning them.  (No papers, no legal status, it’s easy for them to disappear.)  She wore a James-Bond-style button videocamera as she interviewed the middlemen…

People have warned me that the exhaustion, from chemo, is cumulative. I slept through from 4pm when I got home from the hospital, til 2am this morning.  So then I was up and about, checking email, eating, and now, at 8am, I’m ready to go back to bed again!

The worst statistic

“The economic value of this is …”  This is the worst statistic ever, produced at the instigation of interested parties who want to show how valuable their work is, as part of the case that there should be more government funding.

I hear it most days. Here is a typical example from today’s BBC news.

The world’s national parks and nature reserves receive eight billion tourist visits a year, generating around $600bn of spending, according to research.

After emitting a little steam from my ears, I thought ‘let’s blog on it’ and then ‘I’d better check what I’m talking about first’.

The research was produced by PLOS biology. The full article is here. The study was supported by the Natural Capital Project and there is a disclaimer which says

The funders had no role in study design, data collection and analysis, decision to publish, or preparation of the manuscript.

The paper gives a detailed account of how they used a range of resources to build a detailed (and, to my inexpert perusal, convincing) model of each of a stratified sample of 500 parks, to identify how many visitors each receives per year, and extrapolate from those models to the full population.

On the $600bn figure, they say

Economists working on tourism distinguish two main, non-overlapping components of value [12]: direct expenditure by visitors (an element of economic impact, calculated from spending on fees, travel, accommodation, etc.); and consumer surplus (a measure of economic value which arises because many visitors would be prepared to pay more for their visit than they actually have to, …

I’ll stick to the simpler part – ‘direct expenditure by visitors … on fees, travel, accommodation’.  So that will include the train ticket to go to the park and the drinks, meals and hotel nights bought in the national park  (but presumably not drinks, meals and hotel night from estabishments outside the park). Won’t those people have eaten meals and drunk coffees and beers, quite likely for similar value, had they not gone to the park at all?  Also it is looking at the income side of the consumer outlets in the parks – but not at their expenditure. If expenditure is greater than costs, and the outlet is on the way to bankruptcy, should it still be counted as providing economic value? According to this approach, yes. The authors are not economists, and when it comes to translating visits to dollars, the quality of the research drops.

Of course the researchers, and the BBC, both know that $600bn is meaningless unless compared with some other figure. So what are possible points of comparison? In the BBC article we have:

The tourism income vastly outweighs the $10bn a year spent safeguarding them, says a Cambridge University team.

(which is a shorter version of the final paragraph of the journal paper.)

Comparing this figure with the $600bn is like comparing the number of strawberries I grow in my garden, with the number that Morocco exports. Both about strawberries, but that’s about as far as it goes.

The other comparison we are offered is from Prof. Andrew Balmford, lead author of the report, who is quoted by the BBC as saying

the $10bn a year currently spent on these areas is small when compared with the quarterly profits of the likes of the computing giant Apple. Stopping the unfolding extinction crisis is not unaffordable. Three months of Apple profits could go a long way to securing the future of nature.

which strikes me as a very, very, very bad argument. I trust my daughter will make no arguments like that in her philosophy A-level exam.

I hear ‘the economic value is …’ statistics on the news most days, be it for the value of the arts, or the savings to the health service if speed limits are reduced, or the benefits to the economy that immigration brings. The tiny bit of research I’ve done this morning only goes to confirm my suspicion that we might as well disembowel cockerels and read their entrails.

Of course, it hurts. The researchers and news teams are doing their best to give us some basis for understanding the situation, all as part of the public discussion that, we hope, will help policy makers make better policies. And this post is purely critical: I have no clever method of converting, eg, visits to parks into ‘economic value’.   And I’m sorry to have picked on what is probably useful and (except for the money bit) valid research. But all the same: those ‘economic value of ’ statistics: don’t swallow them!

The Grammar of Farting

“Farting is funny.” This is the first thing my younger son ever said on the telephone: profound and insightful; universal like death and taxes. Not bad for a two-year-old. I was just disappointed that the other person on the phonecall did not recognize it for the gem it was.

Farting in polite society is taboo. It isn’t OK to fart in company, at least not unless you can get away with it. There are two main ways that people might catch you out: sound, and smell. Smell is hard to pin on someone – if there are several people present, we are not good at working out which one the smell came from. (We have to resort to heuristics like “the one who smelt it dealt it.” Though one suspects that the origin on this one is self-defence on the part of the farter.) But we are good at working out directions for sound, so audibility is the usual way in which the farter is identified. Thus, a critical consideration becomes: in what company is audible farting permissible?

This is a current concern of mine because I have bowel cancer. It may or may not, by itself, disrupt my bowel function with the result of more farting. It also means I’m taking morphine as pain relief, and morphine has constipation as a side-effect, so I’m also taking laxatives. Between the cancer and all the pharmaceuticals, I fart more than I used to. Hence this investigation.

The basic rule is: farting is not allowed. But there are other rules. There is a grammar.

The basic rule is mitigated when the farter is sick, as in my case. Under some circumstances, farting when sick is allowed.

Place, and company, are amongst those other circumstances. My curiosity about place came about when the person at the urinal next to me in a public toilet farted. Could it be that farting in a toilet is acceptable? I have wondered about this even since I was a teenager, on an exchange holiday with a family in their chalet in the Alps, improving my French. The chalet had a toilet which led directly onto the eating place, and one night, when a couple of attractive young female family friends were round for dinner, the meal had been the Swiss favourite of fondue, and, as I discovered on that night if not before, cooked cheese has an eruptive effect on my bowels. There was no way they could not hear, and no option but to return to the dinner table, red-faced but acting as if nothing had happened.

Another aspect of place is: indoors and outdoors. Farting may be more permissible out of doors, where the wind can whisk the odours away.

When it comes to company, it seems gender plays a central role. Farting is more accepted by men than women. My research reveals that in many families, the men (and maybe boys) will fart with family present, and the women and girls will not – and will take offence if the men do. The men and boys will not object if others fart.

Farting is a universal human activity so it is unsurprising that it features in literature. The pairings of “silent but deadly”, “loud but harmless”, “better out than in” feature in literature of the lowest register – playground idioms – in my childhood.   It is a commonplace of cultural relativity (and racial stereotyping) that burping, not permissible in public in the West, is obligatory, to show appreciation of the meal, in Arabic and Indian societies. Raoul Dahl plays with the pairing of farts and burps in “The BFG” where the Big Friendly Giant deplores burping but celebrates farting (or ‘whizzpopping’, as he calls it) as the only fitting way to show your host how good the meal was.

Jonathan Swift called his essay ‘The benefits of farting explained’ (published originally in 1722, under the name of Don Fartinando Puff-Indorst, Professor of Bumbast at the University of Crackow ) (a ‘crack’ being 18th-century slang for a fart). His piece may be considered a partner to mine, his addressing the benefits, mine, the grammar. He explores the risk of restraining the fart, concluding

A Fart, tho’ wholesome, does not fail
If barr’d of Passage by the Tail,
To fly back to the Head again,
And, by its Fumes, disturb the Brain:
Thus Gunpowder confin’d, you know, Sir,
Grows stronger, as ‘tis ram’d the closer;
But if in open Air it fires,
In harmless Smoke its Force expires.

Chaucer’s Summoner’s Tale provides a method for dividing a fart into twelve equal parts.

Books for adults are of course to be found on the humour shelves. “On farting: language and laughter in the Middle Ages” is about laughter and language in the Middle Ages, not about farting. So decisive is my two-year-old’s dictum that it is hard to imagine finding books on farting anywhere else. Books for children are aplenty, with science books and stories about farting dogs (canus inflatus), hippos , dragons, ballerinas, superheroes, dinosaurs, pirates and fish. We find an analysis similar to Swift’s (if inferior in cadence) in W. W. Wright’s Farting Book:

Are you trying to be extra super smart?
Then the best thing you can do is let loose a smelly fart!
Farts help your brain have more room to grow.
That way there’s more knowledge for you to know.

As is frequently the case, the word for a taboo activity is itself looked down upon and not used in polite company. Instead we have a range of euphemisms, which I shall not sink to mention here.

A bout of googling suggests that this whole topic – the grammar of farting – has not previously been extensively addressed. Please do let me know if you have references I have missed, or have observations of your own to contribute. Continue reading The Grammar of Farting

Quick health update

I’m now half way through my chemo: both half way through the third two-week cycle, and half way through overall, as there are six cycles.  I’m mostly on top of it, following an overflow of pain in the first cycle, nausea in the second, and constipation in the third, though there are still bad days and I get rapidly and vividly exhausted, so have extra sleep at numerous points in the day. I’m MUCH better in the mornings (like now, 5am) than the evenings, when I flake out.  I only get to find out if the chemo has worked – eg reduced the size and ferocity of the cancer, at the end of the process, some time in March
We have my sister Clara visiting at the moment, helping out with Adam-care, child-care, and being a general benign presence!
Despite the cancer, I most certainly am enjoying life; I’m not used to life being slow and gentle, and having ample time to enjoy the view out of the window, the pictures round the house, BBC Radio 3 playing gems from the classical repertoire, for writing this blog.  It’s all very nice!

The speaker shapes the language and the language shapes the speaker

Language changes. And an individual’s use of language changes, as they develop from child to teenager to adult. How might these two kinds of development be related?

Researchers at Stanford University have been looking at the question. They took as their data two discussion websites (both for the discussion of beer, though they assure us the topic wasn’t critical.) A nice thing about these websites was that they could download everything: all the discussions, with every contribution labeled with who made it. On both websites most contributions were in English, but, like any community, the community defined by each website developed a distinctive vocabulary and way of expressing itself. Each is a society in miniature. Both had been going for over ten years, and the researchers could look at how this shared language changed over time.   They could also look at each individual’s language, from their first post, their ‘birth’ in the community, to their last, their ‘death’. Both communities had several thousand contributors, some long-lived and some short-lived, some talkative, contributing several hundred posts, others meek, contributing just once or only a few times.

The core method for the research was to identify the recurring expressions in each community, observing their rise and fall over the lifetime of the community, and also to observe the expressions used by each individual. They could then plot how the two sets of patterns interacted. An example is the term used in one of the communities to refer to a beer’s smell. Two options were to use the word aroma, or the letter S (short for smell). What was the norm at any point in time, and how it changed, and which users used which option, can all be followed in the data.

When we join a new community, we do not know its distinctive vocabulary: if we want to become a fully integrated member of the community, we will need to learn and adopt it. Thus, new members’ early contributions were not ‘on the nail’ of the community’s norms, but over time they learnt the community’s vocabulary and fitted in better. This was their community ‘childhood’.

It often happened that, once they had fully learnt the language of the community, they started playing with it, contributing new expressions and being quick to adopt others’ innovations. So at this phase they were contributing to language change. This was their adolescence.

And then, typically a third of the way through their lifetime in the community, they tended to stick. They carried on using the terms that they and ‘their generation’ had coined, but were less inclined to adopt new terms, or to innovate themselves.   This was their adulthood.

Strange to say, the division was into these three stages, with the peak of creativity one third of the way through a lifetime, whether the lifetime was one year long or ten.

For the full paper, see

No country for old members: User lifecycle and linguistic change in online communities. Cristian Danescu-Niculescu-Mizil, Robert West, Dan Jurafsky, Jure Leskovec, Christopher Potts. Proceedings of WWW Conference, 2013.  (Winner of best paper award.)

 

The first post

This is post number 1 for my blog.  I’m planning to use the blog to keep anyone who is interested up-to-date on my health (I have stage 4 bowel cancer) but also for thoughts on language, corpus linguistics, and life and the world in general.  The plan is to use these four categories. I recently wrote up a fascinating paper I’d come across on how “the speakers shape the language and the language shapes the speakers” so I’ll use that as a next blog (and a first one with content).

Adam

Adam died on Saturday 16th May following a diagnosis of advanced cancer in November 2014.  During that time, one of his great pleasures was writing articles for this blog and the range of responses he received.

Gender

The differences between men and women fascinate us all.  For me, like depression, it has been one of the absorbing topics in my life.  I was introduced to feminism early, by an older lover, in my late teens in the 1970s.  It opened up a fascinating world of questions: how different would the world have looked had I been a woman?

I then went to Kenya for a year and my world-view was changed again, to allow for the world rich/poor divide.

By the time I was at University, Cambridge 1979-82, I  was in the socialist, feminist, internationalist camp – though nothing too radical; that is where I made many strong friendships and the worldview that has strengthened and deepened since.

Jog on to a weekend a couple of years after Camridge, when I was living in London, where radical views were all the more common.  I remember a scarring weekend at the beginning of a counselling diploma course in Kent.  After a few drinks we had had a rollocking argument about Jewishness with a strident Zionist, feminist woman.  I went to bed feeling it had been a jolly good argument. But over the remainder of the weekend, and then the following term of the course, I had felt increasingly defensive, like everything I say might be taken against me, excluded.   At the end of the year, the strident woman left the course and I was so relieved.  A year or two later some gossip got back to me.  The strident woman had said after that first evening “he represents patriarchy, we’ll get him”.  I took away two lessons

  • be wary of putting your head above the parapet
  • maybe I’m not such a feminist in my style of argument after all

Since then, and over the years as we learnt more and more about how the brain works,  in conversations with friends or on the radio, I have often heard that men and women are equal.  And I have thought, ‘but what does that mean?’, ‘is the equality premise being used to support a bad argument?’  Often I have concluded ‘yes’, for example in arguments about percentages of women in senior positions in companies.  Haven’t many women chosen to commit to family over career for much of their thirties, while men have gone for longer and longer hours, and isn’t that something that we should acknowledge and admire as a choice a strong woman may make?    Those percentages are dodgy.

So, except in trusted company, I have learnt to keep my head under the parapet.  But as I walk along with my head behind the parapet, what should I do?  Plenty of childcare, or course, maybe with a focus particularly on the boys – for the background see Steve Biddulph’s ‘Raising Boys’ (NOT a book that keeps its head down).

When Boris was nine, his best friend and he wanted to play football all the time.  Best friend’s Dad, Gary, also one of our best friends, set up Sunday morning football for his son, mine, and any nine-years-olds wanting to play.  He supplied goals, referee, whistle and a time frame, and established a following, with games having up to ten boys (and the occasional girl, and sometimes, depending on numbers, some of the Dads, if any had hung around) on each side.  As the boys got bigger and faster, the Dads older and slower, I remember some desperately competitive boys vs. Dads games.  The weekly fixture ran on til the boys were sixteen.

That was Boris, my oldest.  Then came along Raffie, twelve years younger and equally obsessed with football already by the age of two.  I waited til he was six, bought him a set of goals as a Christmas present (the old ones were offered, but were dilapidated after six weeks weekly use come rain or shine) and re-established Sunday morning football  9.30 til 11, we’ll be there, come if you can!

It has been thriving since, with sometimes as many as 11-a-side.  I have watched the boys (for it is all boys, in a self-selecting way) develop, both in skill and in control – control, for example, in not busting into tears on conceding a goal!  I have referee’d almost all the time, with my own little ritual of  referee+players warming up, jogging round the pitch and selecting teams.  There is a core group of football Dads who are amongst my best friends now, and since cancer, we have set up a refereeing rota, so Sunday morning football runs on.  Happily beneath the parapet.

Four years ago my friend David had a Georgian-style fiftieth birthday feast. David loves singing, and the particular variety he loves most is Georgian, with its singular rich deep harmonies.  Through singing it and teaching it he has made many Georgian (and non-Georgian) friends.  A Georgian feast, at its most formal, has a toastmaster presiding over who should speak or sing next according to complex rituals, with drinking being specified at the end of each contribution and nowhere else; thirty of us crowded in David’s Edinburgh flat around his dining table, things were not so formal, but the framework remained.  In one of his responses David had said,  “when I was growing up all the other boys just talked about football and I wasn’t interested”, and that connected with being behind the parapet and gave me the material for my toast.  What could I talk about? What was I really interested in?

Over the next week or two, my father, my two sons and I had a grand outing to watch Brighton and Hove Albion, the big local team.  I reflected on talk – talk, as a means of connecting with others; talk, safe behind the parapet – and wrote the following.

Men who talk about football

Fathers, sons, husbands, brothers,
Men who work, provide and care,
Men who as boys played football
Connected on the pitch, know the offside rule
and (in my day) the full line-up against Germany 1966
and whose women say “talk, talk” but we are not quite sure how
and somehow never do the right kind of talk
Men who want to connect with their fathers, sons, wives, brothers
who want to show love but whose tongues turn to slugs when they try to say it
We are the men who talk about football.

Written 6th May, and published posthumously.

What bibliographies don’t need

It is kind of authors to provide details of the publisher, city of publication, and page numbers, for a publication, in the ‘references’ section of their paper. But we might ask, why? Stretch your imaginations a little, and it might occur to you that the answer to the question is “so that you, the reader, can find the referenced item, should you want to read it.”

How often do you use the city in which a publication was published, to find a copy of a reference? How often do you use the name of the publisher? How often do you use the page numbers of a journal article or book chapter to find one? My answers are ‘never’, ‘never’ and ‘never’. I suspect that your answers are too. How do you find the reference? Google it!

So, why, then, do authors put them in bibliographies? Because the people who are going to mark your essay, or edit or publish your book or paper, require you to.

Why do they require it? I think it must be because they have not noticed the internet.

Or if they have noticed it, and the radical difference it has made to how we find things, they have been too lazy to transfer that knowledge into their essay-marking or editorial policy. Each time I’m told by a journal editor that I need to provide an address or publisher or page numbers, a little steam comes out of my ears. Sometimes it is a demand that cannot be fulfilled: where the paper is published online, there is often no relevant city, and page numbers are a side effect of paper publication so irrelevant to non-paper ones. It is very often unclear who should count as the publisher. But even where these details can be found, it serves no purpose to provide them.

Before the internet had taken off, and stunning artefacts like Citeseer or Google Scholar existed, publication details and page numbers may have been needed in order that readers could find referenced items. But for the last ten years they have not been needed and any academic, publisher or university that has not taken account of the fact and changed its rules for bibliographies is just being stupid.

Two Books About Grief

I’ve just read two novels, both about the death of someone the protagonist loves, both about grief and guilt.

I started reading the first, “A monster calls”, by Patrick Ness, with Raffie (aged 9). The protagonist, Conor, is 13. It is Conor’s mother who is dying. He is having a terrible, terrible time. He is consumed with worry about his mother, who is in the later stages of cancer and is, early in the book, taken into hospital. She is a single mother. The father lives with a new family in the USA and only visits briefly and is rather useless.   Conor’s mother’s mother expects to take over as carer for Conor but she is a busy working woman who is also consumed with worry about her daughter, so has little time for Conor. Conor has fallen out with his best friend after she let the word out at school that his mother has cancer.   He is also the victim of a particularly cruel bully. He has nightmares. And then the monster – a fantastic literary creation, an embodiment of the life force moulded from the yew tree at the back of Conor’s house – arrives.

Yesterday my palliative-care nurse, whose remit includes everything from the pills I take to preparing my family for my death, gave me a very clear “beware” look when I said I was reading it with Raffie. Raffie and I had still not finished it, so this morning I read the remaining few pages by myself – and decided I would not share them with him. They are too tough. They made me cry. There is a big difference between a 9-year-old and a 13-year-old, and, unless Raffie asks (I doubt he will), I’ll quietly put the book away. I don’t think he is having nightmares as cruel or as Conor’s, and we’re arranging for one of the palliative-care nurses who specialises in what a death in the family means for the child, to talk to him.

The second book is ‘The Shock of the Fall’, by Nathan Filer. Mick, from the Book Group, chose it as the next book for our group to read, so we’ll be talking about it there next week. The protagonist, Matt, is between 6 and 19 over the course of the story. When he was 9, his brother, Simon, two years older, died in an accident which, Matt feels, was his (Matt’s) fault. In a jumbled-up sequence of episodes sometimes as confusing as the state of Matt’s head, we follow Matt’s course from a ‘normal’ schoolboy, bright and popular, in a usual kind of happy-ish family, through a period where his mother went mad and kept him almost imprisoned at home, to drink and drugs, moving out of home, hearing his brother’s voice in all sorts of places, breakdown, getting sectioned, schizophrenia diagnosis, life in the psychiatric ward, being let out, social workers and the Day Centre, and writing his own story. The book is written with first-person intensity (complete with fractured narrative), and left me experiencing Matt’s paranoia and guilt myself after a session of reading. Matt makes a nice metaphor of ‘the small print’, not only of advertisements and agreements but also of social situations: all those understood points of how you are expected to respond and behave, where you might get punished if you do not read them carefully and interpret them correctly. He explores his family tree to see where the snake – mental illness – had reared its head in his family before.

STORY SPOILER WARNING

Here is where I warn you, the reader: I’m about to tell you enough of the endings to spoil the stories. We had Major Sanctions on Harry Potter Story Spoilers (HPSS’s) when Boris and Maddie (the two older children, now 22 and 18) were of Harry Potter ages. If you are sufficiently intrigued to plan to read either book, stop reading here! (This is like the bit in The BBC News on a Saturday evening, in England in the 1970s and sometimes even now, where the newsreader says “the football results are coming up on the screen; look away now if you intend to watch Match of the Day later”.)

In ‘A Monster Calls’, the monster says to Conor “You must tell the truth or you will never leave this nightmare”, “You will be trapped here alone for the rest of your life”. In ‘The Shock of the Fall’, towards the end we have “I’ve told you about my first stretch in mental hospital, but I’ve been back in since. And I know I will again. We move in circles, this illness and me.”

In the first book, Conor does tell the truth and the ending is full of hope. In the second, we still have some glimmer of hope – Matt has after all been able to write the story, and also arranges a memorial for Simon – but this is ten years later. My reading of the second book, primed by both the first book and my situation, is that it is an exploration of what it is like when the protagonist (and his family) does not tell the truth, with the schizophrenia coming out of the bottled-up grief and guilt. Both books address the same moment.

Both are committed to the benefits of talking about it.

I do my best to call a spade a spade: to say “die” rather than “pass away”, “after I die” rather than “when I’m no longer here”. (Neither Conor, nor his mother, father or grandma, can bring themselves to use the word ‘die’ throughout the first book.)

I don’t always manage. Specially when Raffie is present: sometimes it feels gratuitously harsh.

And, more important, I’ve told Raffie (and of course Boris and Maddie). I’ve told them “I am going to die”. And sooner rather than later, most likely within five years. It’s a heavy topic and I don’t go out of my way to bring it up again, but I’ve told them, and they won’t forget. Both books give me a pat on the back for that.

Afterword

We should always be aware of vested interests. Both authors – Patrick Ness and Nathan Filer – make their livings with words. They are good with words. They probably like words. Given a problem, they are probably more likely than other members of society to come up with a verbal rather than a non-verbal solution.  They would be likely to favour a talking or writing cure to a problem like grief over a pharmaceutical one, or a physical one such as yoga.  Books tend to be biased to verbal solutions, just like capitalists tend to be biased towards capitalist solutions. It doesn’t mean they are wrong, just biased.

Superfoods, Fads and the Varied Diet

Eureka! I’ve found an argument that justifies my ambivalence about superfoods and the multitude of other nuggets of dietary advice I’ve been bombarded with since my diagnosis, and supports what I want to support: the varied diet.

Tim Minchin argues eloquently in Storm (it’s a treat: do take ten minutes to revel in it),

alternative medicine is medicine that has not been proved to work, or has been proved not to work. Do you know what they call alternative medicine that has been proved to work? Medicine.

But that is not as damning as it might look for alternative medicine. The method by which medicines are proved to work is long, laborious and expensive. The only groups rich enough to undertake it are usually drug companies, and they will only undertake it if they see a potential for profit at the end. So most superfoods and other alternative health prospects stand in the antechamber to the squeaky-clean category of ‘medicine’: ‘not tested yet’.

Testing is very long and laborious. First we need double-blind tests to see whether there is a consistent, desirable main effect. Even that stage presents great challenges for many alternative therapies since ‘double-blind’ means the patient should not know whether they are taking the treatment or a placebo: hard to set up, where the treatment cannot be put into pill form, like yoga, or psychotherapy.

Where that step is passed, there need to be trials to see how the treatment works with young people, old people, pregnant women, people with asthma, or diabetes or a number of other common conditions. Then, does the treatment interact badly with other common drugs?   There is a long, long list of conditions to deliver on, before the fabled FDA (US Food and Drugs Administration) approval is achieved.

My cancer bible (as already mentioned in another post) is David Servan-Schreiber’s Anti-cancer. He speaks highly of labs at the University of Montreal and elsewhere that are testing the anti-cancer properties of regular foods, where there is some evidence in favour, but no prospects of pharmaceutical companies taking up testing because there are no prospects of big profits: you can’t patent the tomato.

So, for all those superfoods and other nuggets, there is evidence that they work – but not conclusive evidence. Even if there is good evidence that they work well in most cases, how am I to know whether they will work well in my case?

To act rationally, in the face of this imperfect knowledge, we work with probabilities. We hedge our bets. We are happy to try all and sundry superfoods and other treatments – but won’t commit fully to any.

So that brings me back to my childhood, in 1960s and 70s UK, where official dietary advice was thin on the ground and, to the best of my recollection, amounted to: a varied diet is a Good Thing.

That suits me. Everything in moderation. The Epicurean ideal. It sanctions me in eating everything I like to eat. And I’ve now squared it, applying highest scientific principles, with a little gentle scepticism (so I even dare use the word ‘fad’ in my title) about alternative treatments and superfoods, eating the ones I like and ignoring the rest.

Cancer update

Dear all,

Time for a cancer update – and rather a gloomy one, I’m afraid.

Round about the time that we had declared the first attempt at chemo a success, the cancer fought back.  The pain and discomfort, from an increasingly swollen stomach, have crept up, and the energy levels shrank back.   To start with I carried on a programme of a bit more activity, but each time I did more, I was more exhausted.  My stomach is now swollen like it was last December, when I last had in drained.  The swelling is a common side-effect of cancer activity.

The drugs I used were oxalyplatin, capecitabine and avastin.  They are known to work well, but often not for long, as the cancer gets the better of them.

So I spoke to the consultant  and now we have arranged a stomach drain for Monday, and a different course of chemo, the drugs being irinetocan (5FU), folinic acid (FOLFIRI) and Cetuximab, starting on Friday.  In the meantime, but for the stomach drain, I am not straying far from my bed.

My friend David is at a similar stage of bowel cancer to me, and has just started on Cetuximab, and says he is feeling far better with it, so I’m irrationally optimistic about it!

Thank you all very much for all your kind thoughts, and prayers, religious or otherwise

Adam

Hens enjoying broccoli

On Saturday our friend Joanna came to visit, laden with gifts: fish pie, eggs from her hens, and orange polenta cake.  I was going to offer broccoli to accompany the fish pie for lunch, but it had gone yellow.  As I went to throw it into the compost, Joanna said, “my hens would like it” – and she sent this picture to show that they did!

HensBroccoli

Neither celebration nor tears

Cancer update: I had my appointment with the oncologist last week, which confirmed the news I already posted two weeks back. The chemo has largely worked: it is holding the cancer where it is, though it is not notably diminishing it. As I’m no longer having any problematic side-effects, it seems sensible to carry on with ‘maintenance’ chemo (with two of the three chemo drugs that I was taking) for the indefinite future. So this is my new treatment regime.

I’m off the critical list, but continue on twice-daily morphine (to hold stomach pain at bay), and shouldn’t expect energy levels to rise (I’m sleeping a lot, and returning to bed after any activity). So – cause neither for celebration, nor for tears. Until the cancer bites back (which I should expect in the next year to two) this is my life.

I’m not working much, and am far from bedbound, so that leaves me with the usual question that people face on retirement: what do I do, day to day?

One answer I’m exploring is househusband. Gill works, we still have three children living at home (ages 22, 18, 9) so I can do more of the cooking, cleaning, washing, washing up, getting Raffie (the little one) ready for school, getting cups of tea for people in the morning, even sewing buttons on shirts (which I just did! Feeling so pleased with myself! Even if it did take an hour and was my own shirt so scarcely selfless.) Doing all those jobs that the good Mum does to keep the household rolling along happily.

(I hear Gill (my wife) scoff in mocking disbelief. Her view is that she continues to do, say, 90% of the tasks, whereas mine is that I’m now up to around half. It seems that this is just an Irreconcilable Difference of Perception (as nicely explained as the availability heuristic by Daniel Kahneman is his great book, ‘Thinking Fast and Slow’). Also I’d better acknowledge, we do have a cleaner coming in once a week as well. And I should also apologise for nesting my brackets, which comes as second nature to mathematicians and logicians but is not permitted in the grammar of written English (see Nunberg’s The Linguistics of Punctuation). It is a pity it is not allowed, but it is not.)

The househusband role is puzzling me. I’m used to seeing my work as contributing to knowledge, in the noble academic sense, or to company profit, as hallowed by economic theory. Both of these are quantities where ‘more is better’, where time is a limited resource, where one dreams or more time to make more knowledge/profit. Househusbandry isn’t like that: it neither has a theory to give it grand status (as feminists have long been saying) nor is there more to do once the house is clean etc. (OK, you can always find more jobs, but once the house is cleanish and tidyish, I say enough!)

Time … as Larkin put it “What are days for?” (Days). Now that I’m (semi-) retired, knowledge and profit are no longer answers. With that, I head off for my birdsong walk

[[Interlude as I walk]]

The birdsong is at its most wonderful just now, outside our front door between 4 and 5 a.m. on a March morning, before the seagulls start drowning out the songbirds. It is a daily treat, with visual delights for most of the last week too as we have had clear skies and a full moon.

Househusbandry, and birdsong walks, and talking with friends through this blog and via other means (more on that in a future blog) – not such bad answers to Larkin’s question.

Cancer, central planning, and the NHS (National Health Service)

I think most of the readers of the blog are outside the UK, and would probably be bewildered at how the BBC, almost every day, has one of its main headlines about A&E (Accident and Emergency) waiting times. “Targets not met (again)”. You would scarcely think it would make the headlines (again). Many other headlines are about other aspects of health and the resources it requires: over the last few days we have had how mortality rates are higher than usual for the time of year, and how half of us Brits will have a diagnosis of cancer in our lifetime. (So I’m not even in a minority!   It is a consequence of people living longer and not dying of other things).

Many friends and colleagues from outside the UK have asked about what second opinions I have sought, and suggested leading cancer clinics I might go to for one. (All this, as well as the many suggestions for alternative – non-mainstream-Western – treatments, but that is not my topic today)

The first time this happened it came as a surprise. My case had already been discussed in a cancer-team meeting between a number of specialists – oncologists, surgeons, radiologists, palliative care – and they had worked out that the team I should be under was the oncology one.

My cancer bible is “Anti cancer” by David Servan-Schreiber, a Frenchman who practices in the US. (I can’t cope with multiple sources of advice as they are so likely to contradict each other, giving my more grief than relief, so I’ve found one book I like and stick to it.) He says, speaking of his experience with his own cancer,

As is often the case with cancer, the surgeon I consulted told me an operation would be best, the radiologist said radiology would be a good approach, and the oncologists advised me to consider chemotherapy. (p 117)

In his case, he needed to approach the specialists independently, and make his own judgment about what to do once he had gathered the opinions. Talking to other friends, from Bulgaria to the US to Taiwan, this has been the usual case: you need to work out enough about your own condition to work out which specialist to see, and will get a treatment accordingly.

For me, in the care of the NHS, this had all been taken care of by the team looking at my case, and working out at their meeting whose care I should be under.

I’m not a generalist, by nature. I am full of admiration for the jack-of-all-trades, who can turn their hand to anything, but for me, I’ll call in the electrician for the electrics, the plumber for the plumbing, the decorator for the decorating. If you have a lexical computing problem, call me in! (I’ve always found, to my surprise and delight, the more interesting the work, the more people pay me for it. Such are the delights of being very specialised.) I’m a specialist and I’m inclined to trust other specialists in their areas of expertise.   I know what it takes to become an expert: a Masters, plus (in my case) a PhD, plus a decade and more of accumulating experience. I don’t pretend I can become expert enough in other people’s areas of expertise to challenge their opinion. Provided that I think they are intelligent and acting in good faith, and answer any questions I have about what they propose, I will accept their greater understanding. I sometimes feel this is an unfashionable thing to admit.

So it suits me very well that the experts make the decision, in their meeting, and I am not expected to choose between what the oncologist, surgeon and radiologist have to offer.

I think this connects with the headlines about A&E waiting times. The UK, unlike other countries, has a central-planning approach when it comes to health. This is the source of good things and bad. Markets are good at allocating resources and centralised systems have trouble with it: problems with waiting times at A&E are a manifestation of the difficulties that centralised systems have with allocating resources (amplified by it being under political control, so, in the run-up to the UK election, A&E waiting times are a political football; it even made the headlines when Ed Milliband, Labour Party leader, is rumoured to have said he wanted to weaponize the NHS, with the Tories expressing shock and horror that he should use such a military metaphor.) But the good thing about centralised systems if that the parts can be made to integrate with each other. When well designed, they are better at planning for, and achieving, optimal outcomes. Where there is competition for limited resources, markets are valuable, but where we want everything to work well, as for the nation’s health, top-down planning, by an organisation which has all the cards in its hands, and works collaboratively rather than competitively, has a lot to be said for it.

I’d like to connect this blog piece to wider observations about large organisations and small ones, and limitations of markets, inspired by a book I read recently, “23 things they don’t tell you about capitalism” by Ha-Joon Chang. But I need to work out what I think a bit more first. For the time being, thank you, the National Health Service, for working out the best treatment for me!

My family

Most blog readers do not know my family, so I have not made them central to the blog. But they are central to my life.  Here they are on our wheelchair maiden voyage  (as provided by The National Health Service): From left, Gill, my wife; Maddie, my daughter (18); Boris, my elder son (22) and Raffie, my younger son (9).  All deeply loved.

wheelchair-1

We blossom and flourish

We blossom and flourish
As leaves on a tree
And wither and perish
But naught changeth Thee.

What is it about this (half-)verse that so resonates? It won’t be the religion, I don’t do religion and it only comes in at the end. It will be in part that it’s been there in my awareness since schooldays, and all those gruesome assemblies where we stood up while masters came in, sat down, stood up, prayed, sat down, were talked at, stood up, sang, (or muttered, in my case), sat down, were lectured at, stood up, prayed, sat down, stood up, masters went out. Fifteen minutes a day, every schoolday for five years. But you wouldn’t think that would engender much affection, though there is something about this hymn being musically so simple, even I could sing it. (I was never a singer: quietly removed from school choir at age seven.) I sing it occasionally now, early in the morning on the beach, when I’m sure nobody is in earshot.

No, it must be the language. The words are all basic, old words of English. No prefixes, suffixes, long words, imports. The four verbs: blossom, flourish, wither, perish: four ancient words of English for four fundamental processes of life. The sentence structure: subject and intransitive verb, four times over: as basic as it gets, connected by and, the simplest conjunction. One simile, again, of unanswerable directness.   The plain, pure rhythm; the plain, pure rhyme.

Thank you, Walter Smith. For when I use language, this is a model for how I want to use it.

Little Adam’s Peak

My friends Darja and Tomaž just sent me this – so good it needs sharing

================

Dear Adam,

I don’t remember how exactly it happened but Tomaž and I ended up taking my parents to Sri Lanka as a retirement present. After a week of sun, sand the sea we decided to cool down a bit in the Hill Country.
When we arrived in Ella yesterday afternoon and realized that the hill above the town was called Little Adam’s Peak we knew instantly we had to climb it for you. Tomaž decided to do it in flipflops as a reminder of our fabulous hike in the Alps when you made us all jealous reaching the summit first in your sandals.
lap1

After we left the busy town we walked through a tea plantation. The views were breathtaking and there were more hues of green than I could name.

Lap2

We reached the peak just as the sun was starting to set. Although this is clearly a very popular hike, most people had gone by then and the atmosphere was amazing.

lap3
It was very calm, completely different from the busy, loud, dusty town, full of construction work. Here, all we could hear were Buddhist chants in the distance and the slow breathing of the resident dog that fell asleep at the very top of the mountain.
lap4_dog
We hope we were able to capture at least some of the atmosphere in the pictures for you to enjoy back home. We think about you a lot and we wish you and your family all the best.
lap5_sunset

My Kenya link

When I was 18 I spent a year in Kenya, teaching at a ‘Harambee’ (self-help) school on an island in Lake Victoria, as set up by the charity Project Trust. It is a remote part of a third world country. It was a formative experience. I learnt some essential truths, like that we Brits are all pretty rich and lucky, and also that wealth is not much related to happiness.
I stayed in touch with one of my students, Raphael, through thick and thin (which, in his case, included a near-death bus crash), from the era of letters to the era of email.

Raphael (centre) with wife Esther and father Frederick
Raphael (centre) with wife Esther and father Frederick

He got a job as water resources officer for the local prison, and has worked there since. He has named his children after my family members, and I returned the compliment, naming our son Raffie after him (and our elder son, Boris, takes a middle name from Raphael’s father).

Adam Innocent, Raphael's youngest, all set for school
Adam Innocent, Raphael’s youngest, all set for school

While it had long been on my agenda to visit again, children intervened, and it was only in 2008, accompanied by Maddie, aged 11, that I made it out there, for a moving reunion (plus a little holiday where Maddie and I went on safari and saw elephants, lions, hippo, buffalo …)
They are in a part of the world where, when the rains are poor and the crops fail, people starve. This happened once a few years ago and again, this year. Raphael suggested that, if I provided some funding, he could hire a truck, drive to the Tanzanian border (not so far away, and basic foods were available at a more manageable price in Tanzania), fill up the truck, and drive back to Kenya to distribute the food to needy families. The local authority had lists of needy families, and he would work with them to arrange the distribution. For the last few years I have not given any money to any other charities, but have had enough to support this (and schooling for HIV orphans, organised by Raphael via a local NGO that he set up), so I could provide the funding (£2400) and the trip could go ahead.  The recent trip happened two weeks ago, and here are the pictures.

The sacks of grain and the queue
The sacks of grain and the queue
Measuring Out
Measuring Out

Cancer and depression

Which is worse, cancer or depression? The answer is clear. Depression is worse: depression makes you want to die and cancer doesn’t.

I’ve spent all my adult life with depression lurking. I haven’t mentioned it to very many people at all.  For the first ten years I talked about it to nobody at all, for the next decade only Gill and therapists. I have not wanted to be dismissed as a weak and worthless person.  But I have been hugely comforted when other people have talked about depression so this blog is me trying to give back. I was inspired by the Norwegian Prime Minister – Prime minister! – who announced in 1998 that he was ill with depression and needed to take some time off, which he did and then returned to complete a successful term in office.

My depression has taken cyclical form with a nine month bout every three years. I worked this out in the late 1990s. It was then possible to start seeing it as a medical issue rather than a personal failing. Then I talked to Gill, saw my GP and started exploring drug and other treatments (I had already tried counseling methods without fully acknowledging that I was ill).

My experience of depression was debilitating, with me being incapable of making any good decisions or getting anything done or caring for other people or even looking after myself, with no glimmer of appetite or joy in life. Thoughts of death rolled and crashed and banged around the door. I spent hours concocting methods of ending my life and discarding them, concocting and discarding, concocting and discarding.  Since having children, they have always been, in the end, a definitive reason for discarding.

My depression followed a ‘slowly in, quickly out’ pattern. Over the summer I would start feeling gloomy more and more often and this continued through autumn to blackest days of winter. Some time in spring the first the echo of something I scarcely dared hope for or believe in opened up just for a moment. Once it happened on a bike ride in playing fields in Cambridge; once in the cricket field in front of Firle House, a beautiful Sussex country house, on a day with picnic, children’s games, and our family playing with two others.

One surprising fact for me was that people didn’t notice! I continued turning up at work (never high pressure jobs) and nobody shouted at me for not getting the job done or giving a poor lecture. In home life, Gill and others might not have found me exhilarating company but always invited me along and I usually tagged along, with no true enthusiasm but aware that staying at home would probably be worse. Perhaps they did notice but were just too polite to say. But maybe that is just a very English interpretation!

In the 1990s and 2000s I had two bouts of depression truncated by Prozac type drugs, and then a few months after the depression ended I stopped the drugs, but then the depression came back roughly on schedule.  So in 2009 I decided I should be on a drug that was working for me, venlafaxine, for the long term.

After five years depression free, I wanted to see if I’d escaped the cycle and was depression-free without drugs. I didn’t take doctor’s advice. I came off the drugs and within three months the first intimations of gloom appeared. I went back on the drugs but they didn’t help. By last summer I was back in the grips of depression. Also last summer my stomach started hurting persistently which I interpreted as a symptom of the depression, or vice versa. I had a first series of medical check ups in September 2014 but there was no evidence of cancer. It seemed at the time that irritable bowel syndrome was the most likely analysis although it didn’t account for the level or consistency of the stomach pain.

The second set of check ups at the beginning of November included a CT scan and blood tests and it was then that the doctors diagnosed cancer.

And at that point the depression disappeared! Simply evaporated! Was no longer! Apart from terrifying moments in the middle of two dystopian waking dreams following the start of my second chemo a couple of weeks ago, it has not been back (touch wood, fingers crossed).

Depression detached me from the usual trade offs in life: with no appetite for anything, all my choices to do things felt sham. Cancer has returned me to a place where I can take decisions between pleasure and pain, good and bad, in an ordinary way. It has made me more normal and connected with other people. While having cancer I’ve had lots of enjoyable times (like now lazing in a hot deep bath, dictating to Gill in a thoroughly stately manner).

IMG_1296The trade-off is, I die.

Complicated note re responses

I can’t guarantee that I will read anything you write in response because I might die first. But my priority will be to read blog comments (use the button bottom right which appears when you mouse over it). If you want to keep your comment private please send it by email, though I will only read that as second priority.

If you have pictures to attach that would be great, and it would be best if you could attach them to a comment.

Until recently, if you posted a comment, you would not get an alert if there was a response to that comment – so it wasn’t a viable way for me to respond to you.  We think we have fixed that now, though if you don’t get an alert, please let support@sketchengine.co.uk know.

Health update

Good news from the oncologist: the chemo is working.  It has yet to be confirmed by a second scan, but a marker for the cancer activity level has reduced from 200 to 26, and the oncologist says it is a reliable indicator.

When I first got the prognosis it was “50% chance of chemo working; if it works you have 1 to 2 years; if not, not long.”  I didn’t quite say that in the blog, it was too brutal.  In fact we decided it was best to ignore the ‘if the chemo doesn’t work’ possibility, so the good news was as we were expecting, specially as it fitted the fact that I was feeling better.

I asked more about the 1-to-2 years: in cases like mine, 10% of people are still alive in five years.   I must expect a new bout of the cancer, sooner or later.

In the meantime, I carry on with daily morphine, which is keeping me pain-free, and carry on enjoying my semi-retired life: yesterday I pruned the apple tree :)