Lezen met ALS
Literatuur als levensbehoefte
Re-reading Dickens, Orwell and Mann as compulsion and comfort
What do you do when your doctor passes sentence of death? Live out the cliché of finally doing what you’ve always longed for: travelling somewhere exotic, opening that precious bottle of wine? Or - what if, like Pieter Steinz, you’re already doing what you love? In his case, it was reading books, and writing about what he read.
So what then? You carry on. Steinz could do no other. So came into being the series of columns about Amytrophic Lateral Sclerosis (ALS, also known as Motor Neurone Disease, MND), that he called his ‘lifeline to the outside world.’ Steinz wrote on his experiences as a patient and his feelings in the face of death, referring to books - both new ones and old familiar ones - as they resonated.
He starts, in the first piece, by linking his diagnosis with the account by Phaido, Plato’s fictional student, of how the Greek philosopher Socrates drained his poisoned chalice with dignity, unhesitatingly, then to await with composure his body’s disintegration. This was how Steinz expected to bear his illness. Already older than most ALS-patients, he had led a fine and productive life. ‘I have had too much happiness in my life to not now be able to accept bad luck.’
He hoped, with Socrates as example, to hold on to that calm clarity. And so he did. George Orwell’s 1984 gave him the strength to cope with the pain which came with operations. Luigi Pirandello’s One, No One and One Hundred Thousand had him reflecting on people commenting that he looked better than expected, and better than he thought he did. The optimist Steinz was pretty sure he’d have found it more difficult to cope had he not known René Goscinny’s Asterix and the Helvetians and Thomas Mann’s The Magic Mountain.
The Reading of Life is more than a witness account to the appalling fate of victims to ALS. It is bibliotherapy, despite Steinz’s own avowed scepticism on the subject. ‘Literature is a mood changer, a time machine, a tour operator, a memory activator,’ he wrote, ‘but can it actually comfort? Can books ease pain and lift despair? (…) Perhaps, but I don’t believe that I’m the right person to be the judge of that. Even in constant pain for a couple of days, I didn’t feel a single moment of despair.’
Of course books cannot ‘ease pain and lift despair.’ But Steinz’ essays do show how literature can help to get a grip on a tragic situation. Books get you thinking and help you to find the words for what you’re going through – and that gives comfort.