The Hidden World of Pain

The Guardian's Observer section published a piece back on June 19 that I just discovered now, via Arts & Letters Daily. It's an essay by the Observer's literary editor, Robert McCrum. Following a sudden stroke in 1995 that left McCrum paralyzed on his left side, he wrote a memoir, My Year Off. The book is an account of his stroke, and of the arduous and lengthy recovery process he went through. Now, ten years after the stroke, he still has lingering disabilities, but has regained a significant part of his physical abilities.

McCrum's intention in writing this memoir was to record the experience so he could move on. Instead, he was pulled into a sort of parallel universe of which he had previously been almost wholly unaware. He started receiving letters from people all over the world -- both famous and unknown -- who were drawn by McCrum's account of the emotional and physical pain he experienced to tell him about their own.

McCrum's experience has a meaning that goes beyond finding out that others have been through similar difficulties. The way he describes it, his illness -- and more to the point, his writing a book about it -- thrust him into a private, hidden, secret world of pain that he realized is outside the realm of shared societal experience. The stroke he suffered became his dues, and the membership is permanent.

I became engulfed not just by the world's unwellness but, more generally, by its universal pain. The daughter of an old school teacher wrote to describe the 'devastating psychotic breakdown' that had culminated in attempted suicide. A well-known biographer described how illness had 'sabotaged my mental and communicative powers'. Kirk Douglas wrote to me about his stroke in a spidery, half-legible hand. Hume Cronyn, another veteran American actor, described his feelings on the death of his wife, Jessica Tandy. ..."

A woman whose daughter had been diagnosed with leukemia wrote to him of her family's indescribable anguish:

'We, too, have become inhabitants of the world of pain. Our lovely daughter was diagnosed with leukaemia. A year ago last week, she suffered a stroke. Her right side was affected and she could not speak or swallow; she went down to 7st. Thanks to her youth, she recovered her speech and her movement. She appeared almost normal at her 24th birthday, but... back in hospital she contracted a serious infection and died of pneumonia.'

The letter went on: 'Now we are living in hell. Or rather, it is like living in two worlds: we see the "normal" world and we are able to integrate in it. We do "normal" things, which provide us with some respite, but at the end of it all, we have to come back to the other world, our private hell. Life does indeed go on, as everybody keeps telling us, but there is no joy in it for us, it is all mechanical. My daughter used to cry pitifully in her worst moments and say, "I want to be normal, Mummy." At other times she used to say, "I wonder if I'll ever be happy again", and that is how I feel now.

It's like unwittingly saying aloud some secret password and being whisked into a separate reality:

Sometimes, I feel ashamed to claim fellow citizenship with these sufferers, but there it is: they are writing to me and there's not a thing I can do about it. As well as looking through the eyes of someone who might have died, in these 10 years I have acquired a quite new view of the world. Of course, I recognise that people will want to communicate with those they feel are sympathetic to their plight, but now I have come to believe something different.

It is this: that despite the stupendous journalism of feelings, there is still a vast unarticulated story out there that gets no publicity, a story of almost unendurable pain and desperation. Sure, I've been to hell and back, but these people are living in hell every day of their lives.

Oddly enough, the more everything is reported, analysed, expounded, categorised and explored in newspaper column after column, and the more people feel able to express whatever they think about virtually anything under the sun,the more deafening is the general silence that hangs over illness and ill health.

There is a sea of horror lapping at the edges of the everyday world, and these messages in bottles are floating in on every tide. These are the messages from the world of pain, messages that describe the suffering of strangers.