From The Observer, Tom Lubbock: a memoir of living with a brain tumour: “For art critic Tom Lubbock, language has been his life and his livelihood. But in 2008, he developed a lethal brain tumour and was told he would slowly lose control over speech and writing. This is his account of what happens when words slip away.” This diary of loss is terrifying and exhilarating—exhilarating because Lubbock is so determined to make us feel and understand what he’s going through, and succeeds so well.
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. […]
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 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.
And there are some striking quotes:
“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
Thanks, Trevor!
Heartbreaking.
I was very interested to read this. Coincidentally, last week I started reading the (new) weblog of a German writer, Wolfgang Herrndorf, who has the same kind of tumour – he started writing it as a private blog but it is now public.
http://www.wolfgang-herrndorf.de/
The sequence isn’t chronological. He spent some time in a psychiatric ward, whether because of the after-effects of the operation, radiotherapy and chemotherapy or because he had been writing furiously and not sleeping no-one knows.
It’s a bit reminiscent of learning a foreign language. Until you become fluent (however that is defined), there is an invisible curtain between yourself and the words of the language. Words have to be painstakingly learnt and summoned up with effort when you need them, they don’t just slip out without effort.
Just finished reading the article in The Observer. Fascinating and, as marie-lucie has stated, heartbreaking.
Aside from his words, Lubbock’s determination and curiosity are also worthy of praise.
I have a rather different reaction to Lubbock and Herrndorf. “Heartbreaking” and “worthy of praise”: well, nothing improper about that, but in me such a reaction would be distant sympathy, however strongly felt. I think that is their subjective function: to protect oneself emotionally from something distressing, particularly when commenting on it in a public blog. I too protect myself, but in a different way: by vividly imagining myself in the situations the two men are in. Not waving but drowning.
Lubbock and Herrndorf are lamplighters. They show us ways to get on with dying. Several friends of mine, and a brother, have died while I was sitting next to them, after I had been with them through their months of horrific physiological and mental breakdown. I was living with one of them for a year up until the end. My self-protective response afterwards was thankfulness: that I had been given the opportunity to experience what life-until-death can involve, instead of merely being scared shitless by the unknown.
Even “thankfulness” is too weak a word for my post-mortem state, because I realized over the next few years that all that had made me emotionally crazy. It hadn’t been a nice, neat learning experience after all. So I gradually glued the cracks together, and noted down that this too belongs to the process. Perhaps attentive humility would best describe my current response to Lubbock and Herrndorf.
I think that the Christian obsession with “died for the sins of the world” is a ghastly parasite on this very human phenomenon of being grateful to those who go before. Not grateful for “them instead of me”, but because they have died for the fears of the world.
I agree with Stu, I think it’s courage mixed with protective reaction. Another similar recent story is of John Diamond, the radio presenter losing voice to throat cancer.
And an earlier, almost legendary story is of Ivan Pavlov on death-bed dictating to his students what he felt. A visitor was sent away with the words: ‘Academician Pavlov is busy. He is dying.’
Well said, Grumbly.
Academician Pavlov is busy. He is dying.
Wonderful ! Better than this “dying with dignity” stuff so far as I’m concerned, who (as is well-known) have rarely troubled myself with dignified behavior.
I heard an interesting show recently on RadioLab about acquiring language. It’s still available at http://www.radiolab.org/series/podcasts/ from August 9, 2010. it’s about a woman who encounters someone who had no language–someone who was totally deaf since birth and received no training in sign language until he was an adult.
When she finally teaches him to sign, she tries to learn what it is like to be without language, but he basically says there is no language to describe what it is like.
Also the show talks about losing language.
My father lost his ability to talk during the last few months of his life because of a stroke, but interestingly he retained his lifelong love of classical music.
It hadn’t been a nice, neat learning experience after all.
I got my undergraduate degree while working hospice. While the people in that type of organization are a special breed, they do realize that no one takes care of the caretakers, and that the one sided exchange of energy can be draining. People do need to limit their contact with the dying. There is also some evidence of stress related depression when deaths in the family follow too closely on each other, are coupled with life events like job loss and minor stressors. A chiropractor neighbor of mine limited the number of dying patients he took on–said he couldn’t treat them properly without getting emotionally involved and rationed himself. He would tell them he had just had a patient die and would turn them down. Of course when its family or friends you don’t have that luxury, and simply do what you have to do.