I missed this last month: Robert McCrum, writing in The Observer, about 10 years of living with the aftermath of 'a devastating stroke (at 42) which left him paralysed down his left side. During his extended convalescence, he wrote a memoir. It was meant to close the door on his illness, but instead it opened another into a parallel world of other people's pain':
I have become a lightning conductor for a thunderstorm of physical calamity that is raging just over the horizon … my story is not unique. I am just a more visible representative of an army of sufferers across this country, and across the world. I have had letters from widows, orphans, hospital carers, parents. I try to answer these letters, but compared to the stories I'm hearing, my experience has been trifling - as more than one correspondent has pointed out. 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.
From this, I have learned three things. First, that the world's frontline pain is the pain of Aids, cancer, heart disease and stroke (the big killers). Behind the line, there's the pain of despair, loneliness and loss. The aching void in the lives of the bereaved and the afflicted. Second, I now know that we are all, in some sense, in the doctor's waiting room. I used to be indifferent towards, and frightened of, illness. Now I recognise it as part of the human condition. Illness is OK. There's nothing wrong with infirmity. It's part of the way we are. In the famous words of Samuel Beckett's Worstward Ho: 'Ever tried. Ever failed. No matter. Try again. Fail again. Fail better.' Failing better is something every stroke sufferer knows about.
Finally, there's this recognition. Despite the extraordinary progress of medicine, despite all the safeguards we have built into the way we conduct our lives, we are still in the world of our ancestors, when life was characterised by the poets as a sparrow fluttering out of the storm into the brightly lit mead hall, circling through the laughter and the smoke for a moment, before disappearing once more into the dark. Sometimes, when I read these letters, I sense that dark just beyond the window. And I feel grateful to be still alive, in the warmth and the light of summer, out of the storm.
I remember Alphonse Daudet's La Doulou, translated by Julian Barnes in 2002 as In The Land of Pain, the history of his own terrible suffering with tabes dorsalis, a form of tertiary syphilis where the back, in effect, wastes away. I gave my copy away a couple of years ago, but I remember how the great Charcot prescribed the Seyre Suspension, the patient being suspended for several minutes at a time, sometimes just by the jaw. Daudet endured this treatment 13 times:
I am suspended in the air for four minutes, the last two solely by my jaw. Pain in the teeth. Then, as they let me down and unharness me, a terrible pain in my back and the nape of my neck, as if all the marrow was melting: it forces me to crouch down on all fours and then very slowly stand up again while — as it seems to me — the stretched marrow find its rightful place again.
Morphine as a relief:
Each injection stops the pain for three or four hours. Then comes "the wasps", the stinging and stabbing here, there and everywhere — followed by the Pain, that cruel guest.
Other fragments I recall from when I read and had a copy of the book — and have found again now, online:
Torture walking back from the baths via the Champs-Elysées.
I've passed the stage where illness brings any advantage or helps you understand things; also the stage where it sours your life, puts a harshness in your voice, makes every cogwheel shriek.
The hotel. The bell-board. The bath times. Solitude. Encroaching darkness.
My poor carcass is hollowed out, voided by anaemia. Pain echoes through it as a voice echoes in a house without furniture or curtains. There are days, long days, when the only part of me that's alive is my pain.
Finally, two things. First, this moment, as introduced by Julian Barnes himself in The Guardian:
His response, both personal and literary, to his condition was admirable. "Courage... means not scaring others," Larkin wrote. Numerous witnesses attest to Daudet's exemplary behaviour. His last secretary, André Ebner, remembered Daudet sitting with a friend one morning, eyes closed, barely able to speak, martyred by pain. The door-knob gently turned, but before Mme Daudet could enter, her husband was on his feet, the colour back in his cheeks, laughter in his eye, his voice filled with reassurance about his condition. When the door closed again Daudet collapsed back into his chair. "Suffering is nothing," he murmured. "It's all a matter of preventing those you love from suffering."
And then, this:
Daudet … recounted to Goncourt a dream he had once had, in which he was walking through a field of broom. All around him there was the soft background noise of seed-pods exploding. Our lives, he had concluded, amount to no more than this: just a quiet crackle of popping pods.