Until Further Notice, I Am Alive

Tom Lubbock

• Publisher: Granta Books
• Year: 2012
• ISBN:
  9781847085320
• Topic: Medicine
• Subtopic: Medicine Biographies

"These are thoughts for us all, sooner or later—and this is a book I'll keep with me, as long as I live."—David Sexton, The Scotsman In 2008, art critic Tom Lubbock was diagnosed with a rare brain tumor and told he had only two years to live. Physically fit and healthy, and suffering from few symptoms, he faced his death with the same directness and courage that had marked the rest of his life. Lubbock was renowned for the clarity and unconventionality of his writing, and his characteristic fierce intelligence permeates this extraordinary chronicle. With unflinching honesty and curiosity, he repeatedly turns over the fact of his mortality, as he wrestles with the paradoxical question of how to live, knowing we're going to die. Defying the initial diagnosis, Tom survived for three years. He savored his remaining days; engaging with books, art, friends, his wife and their young son, while trying to stay focused on the fact of his impending death. There are medical details—he vividly describes the slow process of losing control over speech as the tumor gradually pressed down on the area of his brain responsible for language—but this is much more than a book about illness; rather, it's a book about a man who remains in thrall to life, as he inches closer to death. "I hope that if I am ever diagnosed with a terminal illness I will remember to reread Until Further Notice, I Am Alive. It is, in its tough-minded way, truly joyous."—Lynn Barber, Sunday Times

Operation 1

29 September 2008

We go into hospital in the middle of the day, waiting for the whole of Monday morning for the appointment to be confirmed. Trying to find something to do in hospital. Trying to get into bed, or sit on the bed, to find a role in the sick place, still feeling very well.

I’m prepared for being in hospital, I’m given my gown. A rather reluctant nurse tells me she has to take swabs from three or four parts of my body, one of which proved hard to specify; turns out to be not the anus itself, but the area of skin between the scrotum and the anus. She takes them. Shortly afterwards, she comes back and says that two of them have to be taken again.

‘Why?’

‘They were spoiled.’

‘Did you drop them?’

‘Yes.’

This is the beginning of a bad relationship.

I am to be the first operation the next morning. This is good. Knobs are attached to my head, to guide the equipment. A Stealth MRI scan. Marion leaves. I’m trying to make precautions against the remote possibility of death or total mental incapacity. Writing messages. 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:

‘Marion, all my love to you, and all my praise to you. Once, when we hardly knew each other, sitting in the kitchen in 46 Spenser Road – I don’t think we were even alone – you said, I can’t remember about who or what: “You don’t want her, you want a round-headed lass.” Meaning you. And the strangeness and directness of the phrase really took me. You were entirely right. That was what I wanted, and have, and still want. 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. What a fantastic pleasure it’s been so far. Dearest Marion, dearest wife, Eugene’s mother, enormous gratitude and love and good wishes to you. What was the phrase? Best regards, Tom.’

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’m already beginning to feel that I don’t quite understand you. 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 6 a.m., 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. And this morning Marion made a film of us having breakfast. She played it back to you. You looked at the red car in your hand, and the same red car you were holding in your hand in the film, and said: “Same”.

‘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 on. I never thought I’d have a child. And then, when you were going to be born, I was frightened at the thought. But when you were born it seemed as if you’d always been with us. 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.’

Then I sleep well. I always sleep well at this time. I wake up quite early – at the usual time for Eugene’s waking. Marion and Eugene arrive at seven. It’s a mistake to bring him in: the place, my look, too weird. He freaks out.

*

The hour approaches. Mr Kitchen appears, in a suit and a silvery tie, beaming.

‘Good morning, Mr Lubbock.’

‘Good Morning, Mr Kitchen.’

‘Are we ready for the off?’

‘I think so.’

Some more Qs and As.

‘So we’re ready to go?’

‘I’m surprised you dress so well for the occasion.’

‘We’re looking after you.’ (Squeeze of hand.)

I’m taken down in the gown, two floors, cold, in the lift. One anteroom, then another room for the anaesthetic. It looks like a storeroom, a box room, notices stuck up written in marker pen, saying don’t do this and that. They want you to go out not realising that it’s happening, keeping you distracted. I want to have some kind of last word. ‘Now we’re putting some water in, just to open up the veins – you’ll feel a little water – what do you do? – that must be very interesting.’ But I’m saying: ‘And am I about to lose consciousness now?’ ‘Yes, very soon now.’ And you feel the amazing speed at which your consciousness drains away, not quite so fast that you can’t follow it, but fast and steady and blissful, just enough time to say: Goodbye everybody (though there were only two of them).

The bliss of waking in recovery. My fingers work. All my mobility seems to work. My mind is working. I can speak, and our greatest fears are allayed. Though speech problems will emerge as the days pass, at first I’m just aware of the 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.

Mr Kitchen appears: ‘All marbles there?’

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

Euphoria. Many visitors, too many. Much talking. I’m up and about in a day or two. I’m becoming aware of speech problems, and these seem to get slightly worse, though the level fluctuates. But generally now I’m imagining a full recovery – and then imagining how I would feel about the preceding. Trying to hold in balance the foreboding before and the relief after; not letting the present wipe out the past – as we said to each other, a few days before, we must not forget this time.

I don’t feel sure now, after this emergence and relief, I’m ready or steady for all the bad possibilities. I’m on a roll. I believe that I will escape the worse outcomes. I know that I may need to struggle more. But at the moment, I’m not open to everything. Simply getting through the operation has made it harder to prepare for the next news. If the biopsy news had come with the coming round, if everything was told at once, that might be better. But relief and growing strength is allowed to set in – then we wait for the results.

Good weather. Walks round the square. ‘How beauteous mankind is.’ We get home on the Friday, in a taxi with our friend Tim. I don’t have too much memory of how I lived in the first days and weeks. Again, many visitors, and very exciting talking. The first fits. (They weren’t giving me any steroids.)

My dysphasic behaviour.

Charles Péguy: ‘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.’

Following my 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 this fore-signal is called an aura, and that what I am experiencing is a form of epilepsy, a small ‘focal’ fit, affecting a speech centre. And then I can’t speak.

Or sometimes, 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 a rich variety of muddlings and loss...