This is about my dying: and how my life got here.

The story started two years ago, with a fit, the first definite symptom of my brain tumour, diagnosed as a high-grade cancer, and called a glioblastoma multiforme. The surgeon made it clear that it would return; the oncologist that it would return in only a few years.

It is a very rare affliction. A GP would expect to meet it once in a career and this form of brain cancer is unpredictable and dangerous. Usually, this tumour might give you only a two-year span since its discovery. I have had two operations and one course of radiotherapy and now three chemotherapies (one currently starting). My death is, in a sense, imminent. I say to myself: I am dying. Something in my head is hurrying to kill me.

On the other hand, I don't know at what stage, and in what story, I am. I won't recover, no. But I haven't been given a definite time limit. So the narrative seems unclear and my luck, in a way, is both bad and good. The oncologist says I have a small tumour and general good health and I am in my early 50s. I recognise that I am being kept alive by my treatment. I can hope for a prolongation for a little. I believe in my life continuing, though not for very long. I don't feel physically in pain – the brain has no nerve feelings, of course – nor have I been very interested, in fact, in the science. The visible tumour is not something that I picture or personify very clearly. It is in the left temporal lobe. I can vaguely locate it from the scar.

At the same time, this life is unbelievable. At moments, it is terrible and outrageous. But in other ways, I accept what it brings, in its strangeness and newness. This mortality makes its own world. It is a mystery and many other things. And then again, I try to live as normally as I can and I share my existence with Marion, my wife, and Eugene, our growing small son, now three, who is beginning to understand our difficulties, and we face this present and future together.

But there is one other crucial thing to be mentioned. The tumour that will destroy me is in the proximity of my speech area. But I am also a word-earner. I have been doing this all my life as an adult. And I still survive as a language-user – speaking, listening, reading, writing – over the past two years. Or, rather, I survive in fluctuating ways.

FIRST FIT Suffolk, August 2008



The first verbal glitches occur after my first fit. At this point, I have no idea what is going on. They last a few minutes, in episodes I would describe as word-blindness or deafness. It is hard, in the nature of it, to follow and record what specifically happens in these quite short periods. It's as if I've become very remote and detached from words. I'm no longer fluent. I've forgotten how to do it. I can't do it automatically. I can't hear whether a word that I say has come out right or not. It's as if it's not me that's speaking, but some kind of inefficient proxy forming the words. It's like there is a time-delay between speaking and hearing your own words, or if you were speaking a language whose phonetics and semantics you don't properly know. And when I speak or write, the words do sometimes come out wrong, slightly nonsensically. I read aloud a passage that I've just written. There were probably several misses, but I could only pin down one. When I came to read this passage "…floating and flailing weightlessly.…" I said the word "weightlessly" as "walterkly". It took quite a bit of effort to be fully sure that this was a mistake; and more effort and repeating to grasp what exactly this nonsense word was, to establish its sound – I had to construct it phoneme by phoneme – clearly enough to write it down. And it seems that the reading eye, darting backwards and forwards, was plucking letters from the whole vicinity, and mixing them up, having lost its usual ability to sort them.

What the whole thing emphasises, of course, is how what we call self-command is really a matter of having reliable automatic mechanisms, unthinking habits or instincts. But then I couldn't be certain that it wasn't an episode of self-generated panic.

And this is the beginning, in terms of my linguistic problems. On the one hand, the fear of losing language is consuming me. And I can't imagine how it will go. On the other, the impetus at the start is not to fear but, rather, to be taken up by the strangeness and wonder of it and examine all the new things it brings.

It's not possible to get any distance from my project: being alive. Objectively, from the outside you might say, my life is terrible, unbelievable. And it's true, I hate this. I hate the way I am at the moment. But there is no objective view, I am here, in it, and there is nothing else, and this fact brings with it many things that make it of course easier. And beyond that there are many other things to think about.

FIRST OPERATION Queen Square, London, September 2008



Brain surgery: not worried about the operation itself; no, what an amazing thing; feeling excited, honoured, to be benefiting from, taking part in, human expertise at this high level.

There is the bliss of waking in recovery. My fingers work. All my mobility seems to work. My mind is working. I can speak and all my greatest fears are allayed. Though speech problems will emerge as the days pass, at first I'm just aware of gradually increasing capability. I lie in bed, trying to recall poems that I know by heart. They materialise bit by bit. A line I couldn't bring to mind suddenly returns some hours later.

"A word is not the same with one writer as with another. One tears it from his guts. The other pulls it out of his overcoat pocket." Charles Péguy

During the year following my first operation, there are occasional losses of speech. The lines go down for a few minutes, or for longer episodes. It is a fit. It begins like this. The sentences are formed in the mind, but they come out as nonsense or totally uncertainly. The rhythm is delivered, but the words, the phonemes, are chaotic, or simply the articulation stalls entirely. But then the sentence, after a moment, plays back in the mind, in the mind's ear, as if perfectly "correctly". I later learn I am experiencing a form of epilepsy, a small "focal" fit, affecting a speech centre. And then I can't speak.

Or sometimes, rather, I can't say the words I want to, though the words seem to be there to say. Likewise, I can't read aloud the words – or, in trying to read the words, the stress is completely cocked up. Whereas when I'm saying my own words the stress is the only thing I can manage. And can I understand written words when I read them silently? I'm not sure. It seems somehow possible. And then the fit ends and I speak quite normally.

I have such a rich variety of muddlings and loss. For instance, I can't always summon up names and proper nouns. I get crossed with opposite words (ask/answer, asleep/awake) or the right beginning of a word swaps with a wrong end. I switch around phonemes within phrases and sentences. I make spoonerisms and malapropisms. On driving through Hackney, I say "police steak house" instead of "police stake out". I use wrong parts of speech, like gender, tense, number. Or, indeed, I find that I can't deliver poetry in a proper rhythm.

Therefore the problem is mainly in idiomatic, cliched, everyday talk. And the speech that requires more attentive or inventive language comes out right. One is more aware of what one says. The speech that goes wrong is the speech that should actually deliver itself quite correctly, automatically, unthinkingly. It was already there to be said. And the fact that it goes wrong makes it clear that its normally reliable mechanism has failed. Unless I really slow down and pay attention, it will go wrong quite often. In all this period, I am still managing to write and to communicate clearly much of the time.

Further things. After the operation, there are failures of casual hearing. I can only hear what I specifically pay attention to. I have difficulty obtaining a general overview of my mental field. I have a narrow, tunnel vision.

My writing becomes more fluent and fast.

RADIOTHERAPY St Thomas' hospital, London, November 2008



At the start of 2009, I emerged from radiotherapy. I remember thinking that this treatment might be the start of the end of everything. The brain would enter terminal fogging, and never recover its clarity, and I would be thereafter in a (worsening) blur until the close of my life. This has not happened. Even though it has got worse since the treatments stopped, and I must anticipate future memory relapses, still I can continue my newspaper work and other writing, though no doubt that will be slower too. Next week, I start doing reviews: long pieces, with opinions, needing to be written in a leisurely, spontaneous, conversational way.

BIG TURN March 2010



My speech is now becoming a radical problem. Sometimes, for a short period, and suddenly, I find that I no longer know what I am saying, but I still go on talking and talking sense – like an inspired sibyl or a medium. The voice works automatically, fluently, subconsciously, through habit or practice. The words would need to be looked up, if I could recognise their spelling. But I can feel at least that my speaking is correct and I am aware that my words and phrases are familiar and appropriate.

Likewise, I can hear others' words and accept them as meaningful, without being able to repeat or paraphrase or interpret their meaning, though I can perhaps reply sensibly or at least act sensibly in reply. At a particular subconscious level, speech is functioning. Consciously, I can't spell some words, I don't know what they mean, I can't recite their phonemes. All I can recognise is the phatic role of my words, their tone.

To explain. One can have quite extended conversations more or less on autopilot. Not brilliant, but perfectly functional (such as making a basic transaction in a shop). But most other people, if you then ask: "What did you say just now?", would be able to recap their words – repeating, rephrasing, explaining. I couldn't do this at all. My speech comes from somewhere, obviously, but it doesn't reach my surface understanding. Likewise with words spoken on radio. It all makes sense until you ask and then it's all blank.

Something else. For a period, suddenly, I cannot speak (or read aloud) any words except the most short, simple, basic. They are fine. And all the rest, the more complex ones, come out as a kind of garbled gobbledygook or jabberwocky. Yet the stress of all the words and sentences – sense or nonsense – is equally and perfectly accurate. I know what I mean to say and to a hearer what I say moves fluently, though in and out of meaningfulness. Simple and comprehensible words punctuate a sequence vocalised out of nonsense.

It is a permanent mystery how we summon up a word. Where are these connections located in the mind? How do we know how we do it and get it right? This mystery only becomes evident when our ability to summon up our words fails.

We assume that all the different registers of language that we use – and of course there are several registers – are happily parallel operations. Well, they are separate. But at that same time, they interact and reciprocally correct themselves. For example: I can often lose one register of language, but not another. I might lose my understanding of words' spelling and the composition of their phonemes. I become spelling-blind and phoneme-deaf. Meanwhile, my fluent, unselfconscious speaking is more or less unimpaired.

Now suppose that my speaking also encounters a small snag. Normally, I could assist myself by calling up, by envisaging, the letters or the phonemes of the words and spelling out more carefully and consciously the pronunciation. Now I can't. And I become aware of this. I try, but I cannot visualise a letter.

Illiterates would never be able to do this. Their speech would never be assisted by this knowledge. The conclusion is that speaking and reading are not distinct capacities. Nor is writing simply an add-on, nor is it merely a matter of letters; it involves sound recognition and naming. The literate speaking is different from the illiterate speaking.

I think that loss of speech, and of understanding of speech, and of understanding of writing, and of coherent writing – these losses will amount to the loss of my mind. I know what this feels like and it has no insides, no internal echo. Mind means talking to oneself. There wouldn't be any secret mind surviving in me.

SECOND OPERATION Queen Square, London, April 2010



I've just had my second brain surgery. Not many people get to do this. When I have a fit, the disruption continues through the next day. I am trying to take measures, meanwhile, because I find, though my speaking is working automatically, I can't easily translate this speaking into my writing. I cannot grasp, in my mind, the words I'm using. I have no idea of their spelling, or how to articulate their syllables, or make them out of sounds. Or, rather, I can, but it can take ages, going over and over, to work out a word. Anything that has complicated phonemes, stress or length is difficult. So I start to make a list of words that I might use very commonly, and want to have them there ready, for next time they slip away. I'm not sure this will actually work. But because I started this list, I haven't totally lost spelling.

I should also say that problems work vice versa. I can be talking to someone, and I have a word in mind that I want to say, and it is impossible to pronounce it properly. "Diplomacy" was one today. Blocked. I had a go, over and over, and had to leave it. Every time, it got an "s" in the middle of it and the stress jumped around within it. ("Diplomat" was much less trouble.) Yet the spelt word, envisaged in my mind, was perfectly clear and I wrote it out easily. The speaking solution here is sometimes not to be slow, careful, not to try, but to run at it swiftly, casually, and it will come out fluently.

SUMMER 2010

"To see a landscape as it is when I am not there…" Simone Weil

12 June



My speech and my writing gradually – or perhaps rather suddenly – decline. I am losing my hard-won fluency, with various aphasic glitches again. My language is not so wild as it was in the spring. But is it more ruined?

14 June



A little later. The problems with my typing seem to be worse. The letters come out wrong: I always miss out the first letter of a word; after that, the letters come in the wrong order, or with replacements, and have to be rewritten all the time. So these go very slowly. With speech, it's the very basic expressions that elude me. "Of course, what I'm saying…"; "Now, I have…"; "But we're all…"; "What do you…?"; "If I asked someone…" Other difficulties get worse: for example, reading Eugene's stories or reading my own articles; factual articles are easier to read than argumentative pieces. Grammar becomes more difficult.

30 June



In company with my friend Mark W for lunch yesterday, I said: "Talking used to be such fun. Once it was off the cuff, ad lib, spontaneous. Now, it is such a struggle. My conversation is, at best, fully plotted and planned."

3 July



Today, I feel that my speech and the power of my mind are largely beyond me. I can't help myself, and I can't achieve it through willpower or concentration. It is simple inability. It's different from after my first operation – then it was slowly getting better. Now it is getting worse.

I do not even notice that I can't read most of the time. Or rather, I can manage only the simplest words and constructions, and very slowly. For example: I have lost my specific recall of passages, that is, all my poems, all my lyrics – partly gradually lost to radiotherapy, I think. Of course I know where to look things up, which is something. They are in books and in CDs. I know where they are on the shelf.

7 July



Today, I can write very slightly in the middle of the day (having written very late the night before). Then in the afternoon, hopeless. Then more capable from 10pm on. But of course these things are very poor. My verbal capacities are very slow, limited, simple, inaccurate, non-recognitive. The mad thing is, I do get much better very late at night. I can go on till about 4am. It seems absurd, but I feel I could push on further, and do better, though I'm tired also, of course, but excited, to have the ability again – a bit of it anyway.

Reading seems to have given up entirely. I listen to people on the radio and I cannot repeat their words, nor can I grasp their points, but I can sort of recognise the articulations that are being made; they're there, beneath the surface. And at some time, I suspect, my speech will simply fail. Or, rather, it will fail first of all at one competence and then at another.

I want to write. I want to make plans and arguments. I want to do some reading and look things up. I want to remodel things I've written. But my mind doesn't have these resources, though my descriptions and observations seem to be better. I am still writing. I still do all my work for newspapers. I have just written an article on Giotto's Vices.

8 July



So at some point, I will start dying. And perhaps, when I look back, I will see that it has already begun. My speech problems now may signal my final fatal state.

Eugene understands that my words are going wrong, here and there. I can't sing the words of nursery rhymes. I often can't read him stories. Of course it may come back, more or less as before. Or it may decline into silence.

15 July



I feel now that I am becoming dead. I had thought that my speech would last me for much longer. Now I am not so sure. I think that my speech is over. My mind is over. My life is over.

I need to be hard, secure, firm, solid, resolved.

Will I ever rise again?

16 July



I can write a tiny little bit in the afternoon.

I noticed, when I was trying to read in the morning, it was strange. My understanding of phrases, etc, was neither with nor without sense, but in a kind of blur, in between.

Also, there was a delay. A few minutes later, I could understand what I had been reading slightly better.

But this is really nothing. In the morning, it feels like this.

I don't expect ever again to write in a complicated way or to have an articulated thought.

Everything is fading – no? Moving very quickly, coming down, against the end. But quite peaceful, too.

A sentence, a simple sentence, is about all I can do, at the moment.

So in the daytime, I cannot muster up any conversation. My language is so limited. And it makes such little joy for Marion or anyone else or indeed for me. That's why I want to say nothing at all; to remain dumb, so that my lack of speech doesn't become audible and useless.

I can put down a little more at this minute, in the afternoon. And I am writing up the brief notes I made earlier. And it seems also that I am not quite so weary after lunch. My attention grows. Is there a change, after my blotto condition on Tuesday, Wednesday, Thursday? Is it the stopping of my anti-nausea pills (which today I have left off) that has had this beneficial effect?

Of course there is still very little expansion of my vocabulary. And as for my talking, my fluency – well, we'll see. But I have managed something, in terms of writing and thinking and talking. This afternoon, I have written three very slow, short but goodish paragraphs. What next?

But much later. After 11pm. I have been going very fast and full. Talking, writing, reading. Volubility. An experience I haven't had for months. Will this continue tomorrow? I'm excited, but also troubled. What will happen? Will it last? I suspect that it's about the pills being dropped, plus the temporary addition of extra steroids, also now dropped. And now I can't get to sleep, even when I want to.

30 July



I would like to write in other forms and in other ways of understanding. For example, thinking about dying and the imagining of it – it must be connected to its cultural forms and to broader linguistic forms. But I don't address myself to these areas. Also, I literally want to adventure, rather than going again into my normal patterns of self-concentration, always slightly different, but not much. If it was possible, to move out on to flights and into depths. And my sense of vocabulary is so poor – and the grammar too – oh, how hard it is to construct anything requiring more than a simple statement. What a struggle for me. What a boring experience for other readers. So I am mainly dedicated to regret. At this moment.

HOW THINGS WERE: JUNE 2010



So: lots of problems, but I haven't quite lost it for the time being. I am still speaking. There are my written words, and my typing, and I still do all my work. So obviously I am thinking, however slow.

I can do a to-and-fro conversation, especially after warming up for half an hour. I can do it better if it's just me and one other, a friend in the morning, though it is much better in the late night, when of course it's very difficult for friends to be there, except for Marion.

The best times of the day are in the morning and the evening, but most of all in the very late hours. I can write from 10pm to 2am and sometimes to 4, and the lost spelling isn't too bad. Meanwhile, Marion helps me. She writes out the words that I can't spell. Or she points out the alphabet, letter by letter.

My writing in the late hours: it is very slow, but it works. I like writing – it still remains a pleasure, but now a struggle.

The mystery of summoning up words. Where are they in the mind, in the brain? They appear to be an agency from nowhere. They exist somewhere in our ground or in our air. They come from unknown darkness. From a place we normally don't think about.

For me, no word comes without prior thought. No sentence is generated without effort. No formulation is made automatically. I am faced continually with a mystery that other people have no conception of, the mystery of the generation of speech. There is no command situation, it goes back and back and back. Where the self lies at the heart of the utterance, the speaker generating the word, is always clouded. This is true for everyone, but for most people this is not something to think about. The generation of words is automatic. For me, that automatic link is broken. Word generation involves strain, guesswork, difficulty, imprecision.

HOW THINGS ARE: OCTOBER 2010



I can still voice words.

But I am now pre-computer again – no thesaurus, no email, no newspapers, no radio, not now even a pen.

But I find my brain is still busy, moving, thinking. I am surprised.



My language to describe things in the world is very small, limited.

My thoughts when I look at the world are vast, limitless and normal, same as they ever were.

My experience of the world is not made less by lack of language but is essentially unchanged.

This is curious.



"Would it be imaginable that people should never speak an audible language, but should still say things to themselves in the imagination?" Ludwig Wittgenstein

One way, but not the other way, but sometimes in both ways.

Pure music I can do, narrative music I can't.

Film, I understand shape and colour but not story.

Poetry is still beautiful, taking me with it.

Pictures, I understand abstract but not story. But I can actually do much more still with pictures. This is my job.







My language works in ever decreasing circles. The whole of English richness is lost to me and I move fewer and fewer words around.

I cannot count. At all.



Marion and her embrace.

Ground, river and sea.

Eugene – his toys, his farm, his cars, his fishing game.

Getting quiet.



Names are going.







Writing, there is no voice. Or, rather, writing is still there in its old form but it's gone quiet. It fluctuates and gets more difficult.





I can't understand what people say so clearly, what they mean, what they intend.

I can write, just about.

It's very difficult for me to talk at all (one way just hopes for sense and another way is total nonsense).

But all the same it's amazing what Marion can do, how it can still happen.



First of all it was scary; now it's all right; it is still, even now, interesting;

My true exit may be accompanied by no words at all, all gone.



The final thing. The illiterate. The dumb.

Speech?

Quiet but still something?

Noises?

Nothing?



My body. My tree.







After that it becomes simply the world.



