Archive for September, 2018

Upside Down Song

Posted: September 30, 2018 in Chat
Tags: , , ,

I put my fist to the sky
and I left it there
I took a fist to the day
wished I wasn’t there
I took a fist to the face
of everything that would break
and everything that would break broke
so I took a fist to me.

I took a course in hatred
and passed top grade
I took a course in mechanics
to unmake the world
I took a course in religion, bigotry
anything that’d further me
and everything that furthered me stranded me
so I took a spanner to me.

I changed the colour of my skin
to learn hating and hatred
I changed gender, attraction
to learn centuries of oppression
I changed everything about me
to learn how to be someone
who has constantly to change to fit in
with someone like me.

I was born hungry like this
I cursed my fate, cursed it
I was born disappointed, unsatisfied
I thought this the worst, this
I was born restless, would never give in
it kept me going when everything failed
I was born with a dynamo
a bad one.





In Woollaton hall, Nottingham, UK, was a crate labelled ‘Unimportant Documents.’
It was only rediscovered in 1911. Among these documents was a letter by King Henry VIII. Also there, was the only surviving copy of an old French roman, dating from the latter half of the Thirteenth Century. That was La Romance de Silence, written in octosyllabic verse, and coming in at around 365 pages.
A translation was published for the first time in 1927, and another edition in 1972.

See, also, Sarah Roche-Mahdi’s book on the work from 1992, with facing-page translation:


Le Roman de Silence is unique, so far, in romance literature.

Silence is a girl who is brought up as a boy, and sworn to silence lest she betray her real gender, and lose all inheritance rights.
It is a tale of cross-dressing and gender-transformation, as modern parlance would cast it. These descriptions do not do justice to the tale, though.

Silence was the daughter of Cador, Earl of Cornwall, and his wife, King Evan’s daughter, Eufemie.
The English king of the time, Evan, did not recognise female inheritance of titles or estates.
In order for the line of Cador to continue, their daughter, who had no name up to that point, had to therefore assume male roles, and take on a male heir’s character and duties. These included a knight’s training.
Nature had stepped in early on and made Silence of most beautiful appearance. One characteristic he/she was also known for was the ability to sing and play the harp with great sweetness. This was the accomplishment of the aristocratic knight, of course, but in this as in courage and fighting ability, Silence proved  more than capable.

It would become necessary, in time, to marry; the complications of the role built up as time went on and social and familial duties and demands become more urgent.
And always, in the sidelines, Nature personified, was reaching out an imperious hand in order to right the order of things.

What was the right order of things? Was it right for King Evan to disinherit women? The ‘order’ of the time of composition was already being questioned in such works as this. Earlier, Marie de France had set her own period against the reflection of an older more noble, chivalrous time: the Arthurian template. No doubt Arthurian times, had they existed, would have been found wanting against another, older period.

The narrative goes on: Silence absconded with a group of Jongleurs her mother and father had invited to their court. In grief all Jongleurs were banished from the land. For four years under the name of Malduit, Silence learned their trade, but outshone them. Jealousy crept in, and to avoid being killed by them once again he/she had to run. She re-entered her father’s court unrecognised. Her mother took a fancy, however, and tried to seduce him/her. Silence once again had to leave – this time to the French court. His/her mother had sent a letter requesting the French king behead Malduit/Silence.
War had broken out in England, and Silence the knight was summoned home. The story was then discovered.

Somewhere undisclosed along the line of the narrative Cador and Eufemie, Count and Countess of Cornwall, had become the English King and Queen.
Why this new king did not revoke the inheritance ruling is not questioned. The order of things must be kept, perhaps, and such as a revocation was seen as a contrary measure. War, fighting, and beheading of suitors who reject advances was normal.
Normality, it is indicated, was violated early-on when Cador was struck low by dragon venom before he and Eufemie were married, and Silence conceived. Here is the source of the tragedy, the supernatural agency of a dragon.

To get back to Silence: the Queen once again, even knowing his/her identity, made a pass at Silence in his/her role as a hugely successful knight. It had to be rejected. Thereby began the undoing: she cajoled the King to send Silence on a mission to capture Merlin. Which she also accomplished – however, it was part of Merlin’s magic that he could only be captured by a woman.
In turn, though, Merlin revealed that the Queen was having an affair, and that her lover was a man who was able to meet her because he dressed as a nun.

Silentius, the man, was revealed publicly to be Silentia, a woman.


There are a number of literary instances of women taking on men’s guises – often in pirating, to enter that most hyper-male of male roles: Anne Bonny; the ballad Sweet Polly Oliver…. Shakespeare makes heavy use of instances of ambivalence. But men taking on women’s guise? That is portrayed as a great deal more unsettling.

To assume a male role is to step up; to assume a female’s role, to step down. Status. Female impersonatators are a source of fun, ridicule, mockery, and beyond ‘normal’. They are funny because they mock further the ‘weak’ who cannot protect themselves. Women’s only armour is their tongue: a woman’s tongue. Here we hear echoes of the split tongue of the snake, of That snake. But the woman of the Roman is silenced; this is a further subversion of roles. Without the power of position, as Queen, Silence must take on the strength and skill of a man. And that can be learned, by either gender.
This is what G R R Martin fudged, with Arya Stark in Song of Ice and Fire: she never quite achieved the bodily strength to be a knight. An assassin’s role was very different.

Male impersonators carry a different charge, also unsettling but to a different degree, and more dangerous because more hidden. It is as though the sacrosanct has been sacked, secrets raided. Tiresias is a classic example; here we have all the indications of the deepest secrets that hold order in place being revealed. Tiresias is the Prometheus of the social rather than cosmic order.

The classic Scottish ballad, The Wife of Auctermuchty, is a case of role reversal. As usual with ballads of this type the wife in the male role outdoes him in strength, skill and endurance.
It could be said that these ballads help stabilise order by preventing male engrandisement from tipping the keen and even balance between the sexes. The male has to learn to laugh at his pretensions, that way the tension is eased, and relations find a more sure, I would like to say equal, footing.

A work like La Roman de Silence uses the basic structure of these ballads, but develops it, complicates the issues, introduces wider references and ramifications.

So what of our own call for greater acceptance of diversity? Trans and gender ambivalence have always been part of humanity: degrees of gender identity are all that exist. And even those degrees fluctuate constantly; all is in motion. Do we conceive of the universe in our image, or our image in what we discover of the universe?
Ambivalence, surely, is the real natural order.


Arthurian names and scenes permeate the romance. It is probably a later off-shoot of the French Arthurian vulgate of material.
The author of the Romance is credited to be Heldris of Cornwall, and the Cornish setting and connections tie-in with the Arthurian settings, as well as the great work, Tristan and Iseault.
I think we need not trouble ourselves over the character of G R R Martin’s Brienne of Tark, from his Songs of Ice and Fire marathon. Brienne’s gender identity was never in question, whereas Silence has none of the recognised woman-identifiers such as sewing, which was so essential a craft-necessity of the period.

Henrietta Leyser, in Medieval Women, A Social History of Women in England 450-1500 (Weidenfeld and Nicholson, 1995), writes:
… the triumph of Nurture over Nature, in the form of Silence’s successes as a hero, serves to demonstrate that, however different the parameters, medieval interest in debates about the roles which women and men were brought up to play could be every bit as keen as our own.‘ (P 141)

For further resources, see:

For stylistic analyses promising to resolve some of the inherent ambivalences of the character role of Silence, see:

Here are many stimulating essays on the work:

Wiki, as always, has much valuable material, as well as links, on the work:

The year was 1951, and Britain’s slump after the war was hitting hard. It was made worse by major problems in the British-Persian oil agreement: BP was in a fix, one of many to come.

Image result for dylan thomas

Dylan Thomas, impecunious as ever, had a track record by then of documentary film and filmscript work. He has always ready for more work, more money.
And so, for five weeks from January 1951, he and a film crew et al, decamped to Persia as then was, to create a piece promoting BP.

What follows are extracts from a meeting with Dylan Thomas in Persia. It is quite a read in its entirety. See:


Apologies in advance for any infringements, but this is a story well worth the telling.


I was now among these casual friends when Mr Abu-Saeedi introduced me, in English, to the English man and him to me, in Persian and said “this is Mr Thomas who writes poetry in English and now he is here to write the script of an educational film.” It was obvious why he introduced him to me in Persian.
I said in English “pleased to meet you”, and shook his hand. I didn’t have anything else to say, so I  sat quietly like the others – waiting to see what would happen. I thought, how wasteful it was to drag me here from my home to sit here, not knowing what to say or do! I thought this was not right – such an awkward silence, so I said “I was told that you write poetry?” He nodded his head and said “that’s right”, but said it in a way that implied “what else should I do?” I said, “is your name Thomas?” He simply nodded his head and said “that’s right.”
I said, “Are you a relation of Daylon Thomas?”
He said, “Dylan”, correcting my pronunciation, and added “I am Dylan Thomas!”
I was, at first, taken aback but soon realised that although his face was puffed up and had lost some of his youthfulness, it was the same face I had seen as a younger man, then minus the effects of beer drinking. I had first come across his poetry about three years previously in Horizon. I loved the sound and the music of his precise words, especially when recited aloud. I enjoyed his easy flowing speech, his sensitivity, his searching vision and well-chosen meanings. I liked his quick arrow-like images which were soothing and connected to the nerves. His sparkling words, like meteors or shooting stars at night, were quick and hurried, while at the same time they were both sharp and comforting. I had read and admired him and his poetry with so much passion that I had learned some of the poems by heart and now that, surprised and puzzled, I saw him sitting in front of me, I was taken aback and was looking at him, suddenly I started reciting a few lines of one of his poems in English:
The hand that signed the paper felled a city; Five sovereign fingers taxed the breath, Doubled the globe of dead and halved a country; These five kings did a king to death.
It was his turn now to be taken aback and stare at me with bright penetrating eyes, full of mute questions. You could interpret his looks however you wanted! I didn’t know what he wanted or what he thought of me reciting his own poetry? His looks made me regret my action, so I said “I am sorry”, but I didn’t know what I was sorry for? Had I shocked him, in this strange place? I knew he had written better poems, and I remembered some of them but (I didn’t know why) unconsciously, I chose to recite that one. Perhaps I thought this one was better fitted to my political leanings. His look was surprised and puzzled as well as showing signs of both gratification and irritation, which quickly and quietly gave way to acceptance of what had just happened – something which was harmless but perhaps opportune.  Meanwhile I heard Hallat’s voice saying something which I didn’t catch or understand. At this my colleagues started laughing. “Why are you laughing?”, I asked. The  answer I got again took the form of collective laughter. I said “ Please don’t laugh, it is not right, our Guest might think you are mocking him?”


The barman came to take our orders. He (Thomas) wanted beer so I ordered McEwans for him which is made from roasted barley in Scotland and is brown (coffee-coloured). He was in deep thought but no longer had that puzzled and depressed look which he had in the office. He asked “In which country is Shiraz?”
I said “this country.”
He said “This one – Persia?”
I said “In fact today’s Shiraz was the capital of the original Persia in Herodotus’ History and for the Greeks. Geographically is not far from here but its history goes back a very along time.”
The bar attendant brought the beer quickly. Only a few of his customers were left and his shift had finished and it was time for him to go home. Thomas lifted his glass, tasted the beer then drank a gulp.
He asked “When was the Norman invasion?”
It was obvious from the tone of his voice, he wasn’t testing me. He was asking. I thought a little  – I couldn’t remember the exact date so I said “I think in 1066 or perhaps 1044, around that time anyway.”
He had stretched out his legs side by side and had laid his hands on his stomach, and this time he asked “When was Chaucer?”
I couldn’t remember that at all. I was ignorant of the dates of both his birth and death. I hadn’t even read anything by Chaucer, I only knew he existed and whatever I had seen by him did not correspond to present day English. Again I thought his question was not to examine me but he was simply asking. I said “Two or three hundred years after Hafiz.”
He asked “When did he die?”
I said “Hafiz?”
He said “Hafiz?”
I added “The best of all the poets. We call him the poet of the unseen world,”
He said “I haven’t heard of him.”
I thought to myself, hearing about a poet is not relevant to knowing one.
He asked “where did he come from?”
I said “Shiraz, the same Shiraz.”
“Did he drink the same wine?” There was a kind slyness in his voice.
I said “all the time, without a break.”
“That much!” he said, “Wasn’t he a Moslem?”
“He knew the Koran by heart. In fact his name means somebody who knows the Koran by heart. A big feat, ha!”
He said “and he also drank constantly?”
I said “Perhaps not constantly, but without a doubt he drank, and sometimes when he couldn’t find any wine– this I don’t believe, he drunk the dregs from the bottom of an earthen barrel.”
“An earthen barrel?”, he said.
“Earthen barrels or vats are used here to produce wine in.”
I understood why he was puzzled, so I said, “We don’t have wooden barrels here. We make wine in earthen ones.”
“It does not have the taste or the smell of the Oak but it is protected from the heat. It is not customary to make barrels from Oak. There are very few Oak trees here, if any at all , but we have an abundance of earthen clay. We are from the earth, isn’t that so?”
He said “Interesting!”
I said “Everything is made of clay, wherever you travel here you see the houses are made of clay and mud bricks. We have a narrow strip of jungle by the side of the Caspian Sea – the rest is deserts, mountains and stones. Building with mud is a lot easier than building with stones despite having a lot of stony mountains. From the time of Alexander onwards there are no houses, palaces or temples made of stones here. They are all made of clay – baked or not. We come from the earth and go back to the earth and there is nothing left of us when we go. That’s how it is, isn’t it?”
“Interesting!” His bright eyes showed that it wasn’t from politeness that he said this.
I said “the same Hafiz says “This natural layout and the field are my royal hall,” and “The sky is my hat.” I translated these quickly and haphazardly and not in very good English. I said “I am sorry – with my broken English and not put into a good form it doesn’t sound like poetry!”
He nodded his head and said “It doesn’t matter.” He was consoling me.


He said “In any case, words are our tools! Anyway, it was extraordinary.”
I wanted to say how nice it was that he had replaced ‘interesting’ with ‘extraordinary’ but instead I  said “but ‘good’ is more relevant to the poet’s time, his feelings and imagination and pairing the words with their specific beats and sounds that sometimes it rises to an unparalleled and powerful level – becomes unique.”
He said “Abstraction?”
I answered “Up to a certain point.”
He asked “Music?”
I didn’t understand, so I asked ”What do you mean?”
He said “The human voice instead of a musical instrument.”
He said “I mean pronunciation of the words instead of melody (tune) and song.”
I said “Not to that extent, but sometimes close to it. To the extent that words and their pairing, notwithstanding their rapture (mood, ecstasy), still have meaning, although very often they struggle. With primitive feelings it is natural that they should struggle more in meaning.”
He said “My intention is a more serious form of abstraction – to take the word to a place, for example like Bach does in music.”
I said “I haven’t heard anything by Bach.”
He was taken aback and with surprise said “No?”
I said “No, except for a short piece.”
He said “He (Bach) wrote one thousand and thirty pieces of work.”
It was as if he was chiding me emphatically for not knowing Bach.
I said “That many? Why so much?”
He said “Some of them are 3-4 hours long.” The colour of reproach was in his voice. Again with surprise he said “No?”
I said “I said no, except for one. I have a record. It only takes 3-4 minutes. It is the sound track of the film Fantasia.” Then I added “There is a lot of music that many people haven’t heard at all, isn’t that so?”
He said “Yes.” It was as if because he’d forgiven me, that he was agreeing with me. Perhaps he understood I was referring to a lot of things that he himself hadn’t heard.
I said “Anyway music is essentially an abstraction.”
He nodded his head meaning ‘perhaps’ or ‘it is’, but it seemed that his mind was elsewhere.
I said “In singing, in between the verses and words we say del ay del (heart-o-heart), and jaanam, janaam (my love, my love) to give substance to the sound.” Then I translated these two phrases and asked him “Is this abstraction? Did you mean this?”
He nodded his head meaning ‘perhaps’ or it is ‘possible’ or perhaps ‘you exaggerate’ or ‘it is meaningless.’
I said “It’s closer to abstraction but not in the way you meant it. Perhaps it cannot be achieved with words at all.”
He said “They tried to do it, or like in paintings.”
I said “Poems close to abstraction are a kind of painting in Persian, even when the description is real. In our paintings from classical times, there has never been an attempt to paint the real. With the word ‘painting’ the whole panorama (perspective) has become an abstraction.  But the arrangement of the words is essential in poetry. The arrangement of the original work has, in itself, become an abstraction which we call verse. They can even be called poetry.” I wasn’t asking that they can be called poetry.
He said “It depends, why not? They say it’s possible, not always, but it is possible – not completely – up to a certain extent.”
I said “In any case, abstraction existed in some of our paintings. There has never been an attempt to paint realistically. Religious prohibition also prevented it.”
He said “Religious prohibition against painting also exists in the Torah.”
I said “Some of our religious laws are very like those in the Torah.”
He said “They say it all comes from God.”
I said “They say it all comes from God.”
Again he stared at me sharply. We laughed.
I said “From where and with what reason, the Gods in different religions are not the same. One has seven or eight arms, one has a son, one is born and not born -alone”.
He said “Being alone is more correct. His hands are free no matter how many he has”.
It was later, much later that I understood what he meant. I said “But it is more difficult”. He looked at me and smiled, nodded his head and said “It is more beautiful. It needs more beauty, It creates.”
I said “Being alone or having many hands?”
He laughed and said “Not creating similar but creating correctly needs more beauty.”
I said “It needs explanation. In our paintings, the trees, flowers, grass, mountains, houses, birds, clouds, dragons and images of not only humans are all distinguished by their colours. Colours are not realistic either. Language is used in this way. Everything in our paintings is unlike the reality of objects. They are not similar either.”
He said “Hell!”
It was sudden. It made me laugh. I liked it. I didn’t say anything.
He said “It is a new creation. Why should it be similar? Anything which exists, exists anyway. Why imitate it? A new creation. A second creation – new. Made unique by sweeping away the unnecessary extras. Reaching the truth. With two, three dimensions creating more. It’s a personal vision of imagination and substance . A vision of understanding and pure feeling. Personal, intimate, unique”.

And Persia – what an incredibly long and cultured history!





Posted: September 9, 2018 in Chat
Tags: , , , , ,

In the beginning was silence.
Ok, waves smashed on rocks long ago eroded, and great winds whipped trees out. Avalanches roared.
When the great Silures climbed out of stifling swamps, the hectic seas, they grew up and developed into monstrous beings among the plenty of the lands, and all those sounds around them.
And so, when eventually their small hunting area became scarce of game, they needed wider ranges.
They noticed the sounds around, noticed how it was the louder and more fierce sounds, made them all run, leave empty grounds. And the louder better. And so,
‘Rumble, ruMBLE, CRASH, CRASH!’ they roared.
It worked, the others fled. Was that an avalanche? Was there a storm coming?
The new hunting ground was theirs.

Of course, other Silures had developed these tricks long ago, though some were only just catching-on. Was there one progenitor of tactics, trickery? You could say it was the most idle, or arrogant, the most selfish, unpopular, most ignorant, the bullies of the groups, tried this out. All to different degrees of effectiveness.
And so a competitiveness developed between them; each marshalled their weaker siblings and those who hung around for the pickings.

In the beginning was… relative… silence.
It was when the apes came down from the trees…. This happened wherever there was a long period of bad years, of droughts, fires, and the trees died a long way back. It happened everywhere the new weather patterns created from scrub and forest, bare pasture and grasslands.

The apes were crammed into smaller areas – they needed space. And also, they were curious. Their times of plenty, in the distant past, left them hungry, with a hunger they could not recognise, and nothing could assuage. Maybe if they searched in these lands, so antithetical to their natures, they could find the lost things.

And they chittered and chattered as they went, bonding their groups across the distances of the plains, deep in the grasses.

Who was it copied whom? Did the animals pick up on this new noise coming into their lands? And was this how bird calls began, imitating the morning calls of the roving bands, and the evening calls to rest? Or did the upright apes copy the new noises of birds, animals, they found themselves amongst? Then they could lure them to a sense of safety. Catch them.
Or was that for their own protection: the trickery and tactics of the Silures coming down to them in remote genetic patterns? Or was it that if they could imitate those around them, blend in, then maybe they’d be accepted?

But times, climates, terrains, change, and with them, the needs and requirements. Isolated groups sang morning bird calls to each other, becoming broken phrases, snatches of sound. A questioning note took on a certain gesture; an angry growl became a sneer.
– Echo-ing that which was inside themselves, as they clung to each other in their groups, as they passed through the dangerous places.

And cockerels copied the morning songs of the incomers. And when they themselves had long forgotten those songs, or even the state of mind, peace, appreciation, they drew those songs from, the cockerels remembered their own variations.
To try and retain some sense of wonder, some parts in the incomers grew religions from the ashes of those long forgotten camp fires.
Morning songs were now echoed in the calls summoning all to minarets, meetings, sacrifices. And the clicks of language, consonantal songs, were in the tocsin, the curfew sounds of night.

Image result for epileptic, michael b

Published by L’Association, Paris, France. 2005
Jonathon Cape, 2009

Epileptic was originally published in six volumes by L’Ascension de Haut Mal, 1996-2004.
The first three volumes translated into English by Kim Thompson, and published as a single volume by L’Association, Paris, France, 2002.

Epileptic is a graphic novel, and an easy match for any quality purely-text work. Notice that ‘novel’ as opposed to ‘text’, above?
Epileptic is not a novel, but it is a graphic work. It is an account of an illness.
It is an account of the expanding universe that illness creates. It is the biography of Jean-Christophe’s epilepsy.
There is plenty of text, from quoting Gerard de Nerval, and Pessoa, to the fin de sicele books David gets into: Meyrinck et al.
So, who is Jean-Christophe?

There were three children: Jean-Christophe, the eldest, then Pierre-Francois, then a couple of year gap, and Florence was born. They lived in Orleans, France. Ordinary kids, children of teachers. From an early age Pierre-Francois, later David, became obsessed with Genghiz Khan. They all embroidered in the telling each other’s bed-time stories, to create wonderful adventures.
Great battle scenes dominated Pierre-Francois; he drew in great detail from an early age.
Then one day out of the blue, Jean-Christophe had a seizure.

And so it began, the great and endless round of doctors.
Medicine, in those days, early to mid 1960s, did not seem to have that much to offer to epilepsy patients. His seizures became more frequent, and severe.
One surgeon advocated expanding his brain with air in order to see structures and abnormalities better. Then surgery to remove part. He would not be whole again, of course, but….
Sounds barbaric to us, now. But was that any worse than, say, the splitting of the hemispheres of the brain in order to control and isolate the spread of a seizure?
See Spasm, by Lauren Slater.

Epilepsy is not just a matter of loss of physical and mental control, in public, anywhere, at any time. It also carries the burden of increasing deterioration of ability to rationalise, concentrate, remember. The medication plays its part, of course.
And here we begin to see how much epilepsy takes.
Michael B sees/draws it as a huge, multifaceted and shape-shifting monster.

Alternative regimes were becoming available at the time. His parents seized on these like drowning people. Macrobiotics – ok, they try a commune, run by an older Japanese man. David B sees/draws him as a great benign cat.
Satire makes a very welcome addition to the telling: Your child draws very violent images, they accuse.
Oh, they’re samurai, that’s alright.

And humour:
Later on, his cartooning tutor says, Your images are disturbing. And why do you not draw ears?
He fought against it, but in the end drew ears.
Hm, they’re even more disturbing with ears.

There is sadness in the background of other’s lives too. The man who took over the commune when the Japanese leader left later committed suicide with his son. He had failed at everything, even being a macrobiotic guru.

The round of spiritualists, quack doctors, quack healers, is saddening.
Both parents teach, and Jean-Christophe cannot be left at home. The only alternative is to keep packing him off to board at clinics, centers. The impact of this on him is an unknown quality and quality, that explodes later.

His once youthful and spritely father is exasperated: Jean-Christophe is reading Mein Kampf. Can you not find anything better? he asks. It’s a great book, he responds.
Michael B knows he’s doing it on purpose, challenging, as all children, especially eldest children, do. And just as David gloried in the battles of Gengiz Khan, so Jean-Christophe clung to the defeated but not gone, fascistic past. But surely it was to something that gave the impression of being strong, seemingly stable, that he was seeking out. And also something to get back at people with, the people he saw as having failed him.

Both were fighting with the monster in their lives, in their family, and what it had done to them, and was continuing to do. It transformed itself, constantly; most of the time they could see only aspects of it.

Nature and nurture. How much was inherent – the violent tendencies ( though they are no worse than any of kid), for instance. The author asks how much had Jean-Christophe used his epilepsy in order to avoid dealing with the world.
Many times Jean-Christophe suggests work he would like to do, only to be slapped down: You’re ill. How could you manage?
The (unrealistic?) suggestions, and the negative responses are all part of the world the illness has created, and how it alters the perceptions of the family which lives there.

The impact on them all was terrible. They stayed together; they had that strength. But that toll is what the book is all about.

This is a very hard-won book: it articulates a lifetime of hurt and confusion, of medical misuse, and deliberate sponging on their pain by quack healers.

David (That name is too Jewish, an older relative tellingly said) was wanting to start his own family, and so was urged to broach the subject of inherited epilepsy, with his mother. The mountain of self-hurt and self-recrimination this opened the door onto, was terrible. All over again.


I was holding a woman as she had an ‘episode’, on the local bus. Others embarrassedly tried to give her back her purse that had gone on the floor. They thought she was lucid enough to understand this gesture.
Or were they just shut-out, and unable to empathise?
It was our stop. I got up, but she was too confused, still. Should I have helped her? She got off a little later – the bus stopped for her. Should I have walked her home?
How much independence did she need? And how, when, and how much help, support?
Is there an etiquette?
No, but there is humanity.

Sometimes the medical profession, medical terminology, can seem to overrule human response.
We see illness, not someone in trouble.

See also:

Mark Beyer:


Lynda Barry: