The art of staying alive: Tom Lubbock's moving memoir explores language, love and living with death at hand

In 2008, Tom Lubbock, The Independent's influential art critic, was diagnosed with a rare brain tumour – and for two years, he kept a remarkable diary. Here, his wife Marion Coutts introduces an extract.

Tom was my husband. Writing was his life and work. But in September 2008 he was diagnosed with a 'grade four' brain tumour, situated in the left temporal lobe, the area responsible for speech and language. During his last year, articulate speech became an effort. He willed words into being as they vanished again. It was a transcendent time, volatile and strange; full of danger. Tom's work was to keep his illness and his life in clear sight. His task was, in his own words, "a lesson in imagination, in self-imagination". The incredible thing was that he could write this down.

Our house had long been a word factory. Since 11am on 11 March 2010, when we noticed Tom's words skip their sense in a more radical way, we knew that we were really in trouble. Tom had a second craniotomy on 13 April. After this, we were focused on the making of meaning. The level of production was intense. Tom kept writing. He revised older texts, collated essays, worked on images for an exhibition and wrote new material.

Tom's speech was wayward in the extreme. It had patterns we thought we were getting used to which would snarl themselves up or evolve over days into new ones. It was vertiginous. Vast holes in language would suddenly appear, great chunks of speech fall away. He strung words together like ropes across voids. I could always understand him, just. At a certain point I became his mouthpiece, although without being his brain I was a fraud. By October 2010, Tom could not write or read in any regular sense, although he could comprehend text on a mysterious level, often after the fact. Yet he was lucid to the last in what he wanted to say.

If you only knew of Tom through his journalism, you would never have known he was ill. For two years after his diagnosis, he kept up his normal output for The Independent – two pieces of work a week, of roughly 1,500 and 1,000 words. Often there was more: collages and other writing. He remained fully engaged with the world, travelling, reading, looking at artwork and exhibitions, thinking about them and making sense of them. The getting of things exactly right with words was his job of many years' standing; his pride. These public communications were now hard-fought; they consumed more energy to compose than I can describe.

I first met Tom at a friend's kitchen table in 1996. Our work was close and divergent: I an artist, he a writer about art, a critic and an illustrator who worked with images, creating the collages which appeared weekly between 1999 and 2004 on the editorial page of The Independent, and intermittently since then. We married in 2001, and Eugene was born in 2007. We had not always lived like this. We married late, and had the child late. But however much we had relished our lives previously, we liked this one more. We thought each other was the best there was.

Tom's illness was our disaster and our adventure. He wrote, "Whatever, there'll be something new". But there was already something new. Our child was only 18 months old when Tom was diagnosed, and alongside this journal runs the other narrative of Eugene. Tom and Eugene's stories are tightly intertwined. His father's illness was the whole of his nascent experience, and Eugene's understanding of it developed as he grew. He was spared the sudden violence of knowledge. All the rest he experienced with us.

We had less than two short winter days with no speech at all. On 9 January 2011, Tom died. Normally, the experience of love is continuous with daily life, giving it shade and colour, and the everyday goes on illuminated by it. For us, the substance of the quotidian had fallen away. Everything came down to the experience and the actions of love. This felt not like shrinking but expanding. It filled all space. Here we were tighter, denser, more saturated in each other than we ever were before.

Very early on, Tom wrote: "The shape of the creature is the pressure of life against the limit of death". We were right against the limit for a very long time, and we knew what we were doing and we kept on doing it. During that long time something was made, and here it is.

A Piece of News

August 2008

The news was death. And it wasn't going to be maybe good luck and getting through it. It was definitely death, and quite soon, meaning a few years. And at first, it didn't seem too bad.

I found it quite easy to accept the neurologist telling me that the scans were with him, and that they showed a mass, a small tumour in the left temporal lobe, which was in all probability, given its shape and position, malignant. I found it easy to accept that this was being told to me on the phone. I found it all very easy to accept.

We occupy a limited patch of space (I have never believed in travel) for a limited stretch of time. We know the deal. We're bodies. We are not in our own hands.

4 September 2008

Marion (suddenly, after gasping, weeping, as we're walking along): OK. I'm on it.

Why am I calm? Why have I been walking around with Marion today feeling kind of blessed? Ever since the attack 10 days ago I've seemed to be in a new life. That I didn't die then, and since then am standing on the surface of the earth as on a stage.

And then I think of Eugene and his 'Sssss's' – meaning snakes, and letter S's, and sss noises, and any long and wiggly-shaped thing – learning the connectedness of object, word, sound, shape, mark; the basics of learning, before yet learning to distinguish, say, sign connection from simile connection.

I'm very open to sadness now. (How much of E's life will I see?) Very open to being moved. I'm not yet open to fears, or depression.

9 September 2008

Telling friends. I have always been very bad with others' afflictions. How to help them not to be so bad with mine?

I always felt from the start that it would be wrong to complain, to protest, to be outraged, to say (or to agree) what a bummer, what a fuck, wrong even almost to treat the situation as an evil at all – even though of course I would be so glad to be out of it. It is partly an acceptance of the human state. This is one of the ways we go wrong. It is partly a kind of self-respect. This going wrong is the way I have gone wrong. I will not deny it, abjure it.

Two or maybe three times since my attack, once just now, Friday morning, I have experienced an episode of what I would describe as word-blindness or deafness. They last a few minutes. It's as if I've become very remote and detached from words. I'm no longer fluent.

To test myself, I read aloud a passage that I'd just written in an article. When I read these words "...floating and flailing weightlessly", I said the word 'weightlessly' as 'walterkly'. It took quite a bit of effort to be fully sure that it 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.

Operation 1

29 September 2008

I am to be the first operation the next morning. Knobs are attached to my head, to guide the equipment. A Stealth MRI scan. I'm trying to make precautions against the remote possibility of death or total mental incapacity. Going into tears as I imagine the future when I won't be there – I mean, when I think of Marion and Eugene, of him having no memory of me at all later in life. I lie up writing quite late.

I wrote to Marion:

"Of course, I don't really believe I will die or lose my mind tomorrow. But with the smallest chance – I wouldn't want to leave you without telling you how delightful, how wise, how kind you are. I've often wondered about the unfathomable process that made you; wondered, when did she learn this, where did she pick that up? – wondered, because you seemed to have a sureness that I felt to have been there from the beginning; though it must have been a formation out of many lessons, experiences, decisions. And recently I've tried to apply these thoughts to Eugene, to his mysterious unfolding. How sure I am that you and he, together and in your individual selves, will go on well. I wish I were with you both, to see this and take part in this."

To Eugene I wrote:

"Darling Eugene,

Nobody remembers anything before they were two. You won't remember me. And I don't have much idea about who you are – or who you will be, at the age at which you'll be able to understand this letter. I never imagined you would be very much like me. But I did often imagine going out with you, going to see things, walking and talking, asking questions, making jokes, having arguments. In the last few weeks, just as Marion and I have been getting this news about my brain tumour, you've been picking up language so fast. The little chats we have in your bedroom, when you wake up at 6am, and I go in, and you're standing in your cot, pointing something out that's taken your interest: it's a great moment in the day. As I'm writing this, I'm fully expecting to survive this operation. But there's a very small chance I won't survive, and so I thought I should have a message ready. I grew up without a father. It can be done. It would have been much better if we'd had more years together. But knowing you, at one and a half, I feel that whatever happens you'll be OK. I want to praise you for being a wonderful baby. Well, that's all I know about you. You have done everything well, so far. Go ahead, Eugene, my only child.

Whatever you're doing, I love you. I so strongly hope you'll never have to read this message, or if you do, I'll be alive and reading it next to you. But now, not knowing the future, I say goodbye to you, I kiss you, all my love, Dad."

It is a tumour. The tumour seems to originate from the brain, not a secondary. The surgeon, Mr Kitchen, tells Marion it's a glioma, which indicates it's malignant. Later he says: there are no benign tumours, really – just more or less active growers.

Following my operation, there are occasional losses of speech. The sentences are formed in the mind, but they come out as nonsense, or totally uncertainly. On driving through Hackney, I say "police steakhouse" instead of "police stakeout". I use wrong parts of speech, like gender, tense, number. I find that I can't deliver poetry in a proper rhythm. Therefore the problem is mainly in idiomatic, clichéd, everyday talk. And the speech that requires more attentive or inventive language comes out right.

8 October 2008

The meeting. Mr Kitchen. The results are, in the circumstances, as bad as they can be. The most active level of malignancy. Six weeks of radiotherapy and some pills. Basically, there is no plan B.

Facing leaving Marion and Eugene, our growing old together, E's growing up. But not (as I now feel) for myself needing much more length of life. I know all the happiness and love I've felt I could know. My mind's work has basically done what it can do. I don't feel an 'if only' hanging over me, out of reach. I've found what I could have found. Extinction in itself is not my grief.

Bertolt Brecht observed: "Although the purely biological death of the individual is of no interest to society, dying ought nevertheless to be taught".

10 October 2008

At home. A quite serious fit; loss of speech; disorientation; limbs lose control; get myself to bed.

20 October 2008

Having said to friends at the weekend: I am dying, I had to correct it in an e-mail: "...but after what I said then, I should tell you that this evening Marion said to me: 'You do know that I fully intend to be with you for another 10 years' (she had seen how my thoughts were tending) and I could only answer: 'Yes, why the hell not!' So, until further notice, I am alive."

Treatment

11 November 2008

To [the artist] Jenny Polak, e-mail:

"In fact, I'm feeling well. No side effects have appeared yet from either side of the treatment. The experience of being head-clamped to the radiotherapy table – you have a closely moulded mask, like a wide mesh fencing mask, fixed down hard – is surprisingly nice, a solid feeling, as the table rotates and levitates and the machines orbit and buzz. You can bring your own CDs. Bach keyboard so far."

19 November 2008

I think side effects are taking effect. Hairs are beginning to come out from the irradiated areas of my head. There is some muzziness in the mind. But I'm OK in the evenings. "I must say, you're looking very well," people say. So I am. But looks have nothing to do with it.

24 November 2008

I've fallen in love with Eugene.

24 March 2009

Three annoying sympathisers:

1. Those who come only wanting to have their minds put at rest.

2. Those who know someone who had exactly what you've got, and she's absolutely fine now.

3. Those who want you to know they realise just how awful it is for you – and with the little one!

4 May 2009

Small fit. While talking to Dan on the phone.

10 May 2009

Small fit. While out with Marion, at Tate Modern.

7 June 2009

Small fit. While Marion is in Hastings. Long sleep. Marion and I walk and talk.

Good News

9 July 2009

First MRI scan for six months.

16 July 2009

"Very good news" from scan.

25 July 2009

Very small fit. Marion out buying a paddling pool. Eugene asleep. Tim comes round, Marion comes back miraculously by hailing a passing, already occupied taxi in south London.

14 August 2009

Very small fit while on the train, starting off for France.

22 October 2009

Tomorrow I will perhaps get results from yesterday's MRI scan.

I will die first. Then Marion. Then Eugene. (We hope so. Any other order would be catastrophic for me, or for Marion, or for us. Eugene as a survivor would, I assume, manage the death of either and both parents.) But my thought is: eventually, one by one, the world will be cleared of us, and I picture it as earth, not the earth one might be buried in, but the surface on which we are now standing: that is how I picture death – not as some force that ploughs us down, but as a solid mass, the ground that remains after us, and on which we once lived and from which we drew our life.

23 October 2009

The results are good again.

I live in leases of three months: the distance between each scan.

25 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.

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.

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 words, come out as a kind of garbled gobbledegook. The simple and comprehensible words punctuate a sequence vocalised out of nonsense.

Bad News

26 March 2010

There are signs of activity in the tumour. Another course of treatment is due. In short: I'm back in the mortality business.

28-30 March 2010

Easter is coming. Christians on the radio. The resurrection is the defeat of death. But isn't that the ultimate blasphemy? Life is a thing with a beginning and an end. That's what makes life real.

True, the Christian immortality story is complicated, and various. On the other hand the lost belief in immortality makes earthly life intolerably heavy. We can't bear to lose it. Once we had this promise of not losing it, of holding on to it for ever. Now we don't. But we haven't got rid of the dream of its possibility, and this makes the losing of our life into a real loss. We must be able to lose it, really lose it, since we will; and not regret ourselves so much.

In short, we swap one consolation for another. Once we tried to say: we never really die. Now we try to say: we do, but it doesn't really matter. Nice one.

5 April 2010

Easter Monday. I'm thinking on the motorway.

We pass a traffic sign:

DELAYS POSSIBLE UNTIL 2013

I'm looking at a date that very likely I won't see.

Operation 2

6 April 2010

Mr Kitchen, the surgeon, has looked at the scans. He thinks he can operate. He thinks he can remove more, and then possibly implant some slow-release chemo in the tumour base. "This is something we can do now." Technically? Or they now have permission? I didn't ask. They emphasise again to M that this is good news. I'm an exceptional case. I have already lived longer than expected. We have a meeting with Kitchen on Friday. (Today is Tuesday.) For this, I'm in high excitement. It means action. It means courage. My previous deep resistance to any operation is abolished in a wink.

We go into the park with Eugene. The spring day and spring air is fresh and beautiful. E is packed with life, unstoppable, prodding, examining, collecting, banging, charging around, driving M half mad with his uncontrollability.

9 April 2010

We see Neil Kitchen at Queen Square. He shows that it is simple.

We say yes, go ahead.

And now I'm going to have this enormously expensive operation, with a wait of four days, for nothing. The National Health. The nation, fighting for my life!

My father may well die while I'm in hospital.

It's another beautiful day. We drive down with E and friends to the south coast to see an art show.

11 April 2010

Eugene's birthday party. A great party for him and us. Tomorrow we expect hospital. Tonight we go to bed.

12 April 2010

But M: you asked for a love letter. Have I ever written you one? I remember, at the beginnings of us, we were very cautious of the word, even though it seems so obvious to say it. And then in getting us to get married, you managed through a process of joking – "Shall we get married?" – joking, joking, until it became inevitable. And then into getting us to have a baby – "It would be such fun" – until somehow, I can't remember how, I was overcome. It all came true. And now all I want is: prolong, prolong – though of course an open-ended life would suit us so much better. I send you all my love from the middle of the night. Hold on to me. Hold on to us.

13 April 2010

Mr Kitchen comes to the bed. I say, whatever else, I need my language. He's aware of this. Then lovely anaesthesia. I awake in recovery, 11am, moving, speaking, being constantly asked for the month, year, place. Things go very badly for M, who is trying to get through, and some idiot tells her that I will be in theatre until 4pm – she fears that the operation has gone horribly wrong. In recovery they've managed only to have her landline, where she isn't of course. By 1pm I insist that they get both our mobile numbers from my bedside, and a nurse rings her, and I can hear that she half-collapses on the phone. Finally she gets into recovery for a brief embrace.

15 April 2010

Today, some symptoms.

1. My right hand has a strange feeling of slime on my palm, and also a slight scratching; of course, this is only how it feels; it's an illusion. When I touch it with my left-hand fingers, they don't register any clamminess.

2. My ability to speak and write is lost, temporarily, to some extent.

A fit, briefly in the morning, at say 10am.

Another, in the evening, for a longer period, after 7pm.

In the middle of the night, I woke, and shortly afterwards

it happened again, at roughly 4.30am.

Again, very briefly at, say, 8.15am.

9 May 2010

I am in a happy-ish state. There are no recurring speech fits. I'm feeling generally well. The weather has been beautiful. Eugene flourishes, full of happiness, growing. My father's funeral is on 29 April.

I am noticeably full of mistakes when reading aloud, during bedtime reading to E. Tomorrow the chemo starts. I hope it won't make me feel sick. It didn't much last time.

10 May 2010

I vomited – the first day – about two hours after taking the pills, all over the stairs.

30 June 2010

The mystery of summoning up words. Where are they in the mind, in the brain? They appear to be an agency from nowhere. They come from unknown darkness.

2 July 2010

Now it seems quite possible that my tumour is growing again. The speech problems may be a sign. The scan suggests this. We will be given more definite evidence in a few days.

6 July 2010

It is four months since the last bad news. And the bad news has appeared again. There was the interval, the operation, that looked good.

But the tumour itself has continued to grow, and the chemo has not abated it.

I have always found – among other things – that my self restores itself. I had in me this comic spirit of immortality. Now I feel nothing, though perhaps this will return.

And tonight at supper, more talkative, more drunk, I saw things differently. I recognise that I am in helplessness, and I can accept this. But this helplessness is a limited state. And recognising that, I can live outside of this helplessness too.

7 July 2010

No news again. Felt helpless, dejected. I've no idea what to expect. All I can say is that speech failure casts all failure upon me.

Bad Again

8 July 2010

Results:

The recent chemo treatment has had no effect. So there is PCV, another chemo.

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. If I were alone, living in a wood, it might be different. I could imagine living and then dying, and be resigned. But with M and E – this is our life. And how can Eugene understand? How rapidly, finally, my tumour increases, invading everything.

16 July 2010

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

28 July 2010

Last weekend we went back to our friends, to their cottage in Suffolk. Almost two years ago, it was there my first fit happened in the middle of the night. We hadn't been there subsequently at all. But then on Sunday morning I had another fit there, quite serious, with total loss of speech, and the ambulance came out again. Bad luck for them. Bad luck for us. Of course it is no one's fault. But the fault is there, standing in our face! "For it must needs be that offences come; but woe to that man by whom the offence cometh!" (Matt. 18 v. 7: a rare exclamation point in the AV, maybe? It has taken a long time trying to trace this quotation; once I could remember all these things.)

October 2010

Marion and her embrace.
Ground, river and sea.
Eugene – his toys, his farm, his cars, his fishing game.
Getting quiet.

Names are going.

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.

This is an edited extract from 'Until Further Notice, I Am Alive' by Tom Lubbock, published on 12 April by Granta Books