To be or not to be a Kaiserin

Searching for inspiration

 Since our quite disastrous experiences in hospital and the more disastrous blow up of The Little Family, I have not been able to concentrate much. I sit in front of the screen of my laptop and vaguely browse the Net without any decisive attention. There are books around me but I do not feel much like reading. I do not feel like writing. I do not feel like going into the garden and do something about the rioting wisteria. I dare not think too much and too often about Elder Girl who is still in hospital far from us and whom we are not able to visit. I am awkward and fidgety because I cannot see properly. I am restless and I cannot envisage what the future will be – and I mean the immediate future as well as the longer one.

When I was a child I remedied to such issues by pretending I was someone totally different with another name, sometimes another nationality, certainly not the same age, perhaps not of the same era. I was another I. 

I spent days – and nights before I fell asleep – living wonderful adventures. I used to choose to be mostly older than I was really. I remember when I was about eight or nine, I was the Empress Elizabeth of Austria – well, why not when you imagine? – and solved arduous diplomatic problems for my husband the Kaiser Franz-Joseph, with the Hungarian nobility – this was not great fun as it was true the real Kaiserin did it -, but I even charmed the ruthless people from the Balkans into an amiable peace among them and a complete obedience to Vienna. Princess Elizabeth of Bavaria was sixteen or seventeen when she married her cousin Franz-Joseph, and I thought this a grand old age. Coming from a family where there were two or three generations before me (great-grand-mothers, great-aunts and uncles) and therefore who were borne away by a steady trickle of deaths, I saw Mother and my Aunts ensconced in muted colours of respect for the Dead, and I thought it was only natural to begin to live early and face the tasks of establishing peace in the Balkans. I had no doubt that my real life would be what I was dreaming about and thus could not see the reason why my parents, my family and their friends were so upset about what was happening in the world: a few years later, I would be a true born diplomat, marry some future king or emperor, and charm the population with the smile similar to that of Romy Schneider in the Empress Sisi films. A happy end was guaranteed as when I went to the movies.

Sisi in Hungary

There were tricky moments in my day-dreaming. I was more than often caught up red-handed so to speak in the act at school where I did not listened to the lessons which bored me, and at home where I was nicknamed “Princess” and treated with some irony in order to pull me down to earth.

This welcome of my dream life – that was not welcome at all – contributed to turn myself into a prickly hedgehog and to turn more and more to solitude where I found to feed my dreams in books and in writing. I used to sit at my table in my room and to scribble in green ink with a proper fountain pen on coloured sheets carefully illustrated with awkward copies of drawings or maps, surrounded by history and geography books mainly but not exclusively: when called to bring peace in the depths of the ex-Austrian Empire, I thought reasonable to know facts upon the countries I would have to reconcile.

My parents were comforted by the fact that I was kept busy and were deluded as to my day-dreaming until the day when I was asked what I was doing, and when I was demanded to produce my last written effort. It was a little booklet of some fifty sheets that I had sewn together and of which I was rather proud. The booklet was handed to Mother to be read and discussed with Father. I was called later in the week and met by a court martial. By a fateful coincidence, the reading of the booklet occurred at the same time as a call by my French class teacher who complained that I was a good pupil who did well but never learnt her lessons. I knew things without studying the rules and that was a capital crime for her. This was made a capital crime for me too and I was ordered not to squander time over the kind of useless effort that was my booklets and to learn my grammar lessons instead. I asked why, as my French compositions, orthography and grammar tests were the top of the class, without mistakes. I was answered not for the first time of my short life that rules were to be obeyed. I looked my parents in the eyes and said clearly that I did not see any reason to conform to rules that were idiotic. Punishment was to follow. I realise now that my parents were right but punishment would have been absurd if they had taken from me the objects of the offense: books, paper and ink, instrumental to my lack of discipline towards school. Obviously I was only non-conformist but not unwilling to learn and I was still top of my class. They settled about depriving me of dessert, which was a token punishment as I did not like sweets and much preferred the fruits I was given instead.

The old cinema in The Village

Speaking of movies (this is going to be a meandering entry), I first went to the cinema without my parents with a friend and her mother as chaperone to see the three Marishka films, Sisi, Empress Sisi, and Sisi Facing Her Destiny. I was eight and it was during the holidays in The Village. My friend’s mother was Mother’s friend as their own mothers had been friends before. It was a kind of hereditary friendship with ups and downs as my friend’s family was rather lunatic and prone to take offence for anything they might think a slight. However we were in an “up-moment”, and her mother’s had suggested she would take us to see the three films, three Sundays in a row. Of course, she would be discreetly in a seat one row behind us. No apparent chaperoning for us, thank you.

The cinema was an old place with dusty red velvet seats. Dust permeated the whole hall and danced in whatever light there was when we came in. There was still a short film and a cartoon  plus adverts  before the interval when the cinema’s owner sent his wife to sell sweets and ice-creams. We had been provided with money and bought the most delicious ice-creams that we licked assiduously. There was an awkward moment when my friend’s mother told us not to giggle and to be careful with running ice-creams, otherwise it was delicious. Then the great red velvet curtain rose up again before the screen. We were engulfed in the throes of Princess Elizabeth von Wittelsbach and her family, and the engagement and marriage policy of the arch villain, her aunt, the archduchess Sophia von Habsburg. About an hour and half later, love triumphed, organ boomed, Sisi married Franz and we, girls, were sharply told not to waste more time looking at a blank screen since it was tea time. The dust motes danced again before my ecstatic eyes. I knew for sure that this was my destiny. I was to marry a prince, a king, an emperor, a general like the general De Gaulle, and would devote my life to his Nation. My friend decided on the spot to marry one of the same heads of State to get dresses and jewels. Without any care for our exalted persons, her mother propelled both of us towards the exit door, sunshine, heat, and her car to bring us home.

The engagement

The wedding

We lived the same experience during two other Sundays which fortified me in my will to serve the State and become a graceful diplomat for the sake of my husband.

I day dreamed with a purpose now. I ransacked the house for history and geography books. I asked Father questions about the Austro-Hungarian Empire and discovered that there were biographies about Kaiserin Elizabeth. I pleaded for a pocket money advance and a trip to the bookshops in Périgueux in order to buy at least one. My parents were ot too eager for the pocket money but as it was for history books, they relented. 

Empress Sisi in Vienna

Empress Sisi at the theatre


How sad we were when we emerged from the cinema after the last film on the third Sunday. Life was nor worthwhile anymore without this wonderful story. But I was both the most affected and the readiest to meet this deprivation: books were waiting for me and I was able to play the films in my mind – to re-enact them endlessly as well as to create a prequel and infinite ‘paraquels’ and sequels. In fact, I had discovered the power of imagination and the power of books.

*     *     *

The books are still here. We have bought the films in DVD format since The Girls have felt for them in their own time. I shall not be a diplomat negotiating peace in the Balkans. I shall not marry prince, king or emperor – and certainly not a general who would become head of a State.

Perhaps – only perhaps – one day, I shall be able to concentrate and write again – with more doubts than in childhood -, books that will be the follow-ups of the incriminating booklets in green ink. 

The Country Lady at her desk

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I love April

glamis village in April patrick macintosh
Glamis Village in April (James MacIntosh Patrick

I love April.

It was Mother’s birthday month and I associate it with the big bouquet we made for her with the flowers of the garden, mainly with irises and apple blossoms. She had a fondness for irises and she nursed and raised the plants, exchanging rhizomes with friends and collectors near our house: they came in all sorts of hues from the simple, straight, blue ones to the fat gorgeous golden yellow others, going through browns, pinks, whites, slightly striped, zebra, cut out, bearded petals. It seemed that the variations were infinite. We kept to the simple dark purple ones that were swathed in the frothy apple blossoms, a candid white tinged with a blush of pink rose. We would have devastated the orchard so we were left two or three trees which gave each year a crop of acid apples that never matured and which we used in the early autumn as prime elements to our desperate experiences to make cider.

Life is to be compared with April according to William Cowper: “It is a sort of April-weather life that we lead in this world.  A little sunshine is generally the prelude to a storm.” And nowadays more than ever I do think so. What little joys we have are soon drowned by a shower of sorrows.

springtime in Eckdale - James Mackintosh Patrick
Spring Time in Eckdale (James MacIntosh Patrick)

Elder Girl is still in hospital. I have been told by our doctor that she does not want to get up by herself, to stand up, to walk. Her food is processed and rolled and she eats it with a spoon. She speaks when she is spoken to and she passes the day sitting in an armchair. “An ideal patient”, said Matron over the phone. She never complains and she never moves.”  Our doctor was enthusiastic about the notion of our joining her in hospital and was highly surprised when I refused, telling him we were not ill and asking him to hasten her return home. “She will be a weight upon you”, he said, eyeing me dubiously. “And she will need continuous care with nurses at least twice a day, special implements like an electric armchair, another chair in which she will spend her days, people to transfer her from bed to chair and from chair to bed. “That sort of things.” “All right”, I answered, let’s get the help we need and have her back with us in her own home and environment.” “She is aging, you know”, he said. ”She is an old lady according to her pathology. She is aging fast.” I bit my lips thinking that his prescription of antidepressants, anxiolytics and sleeping pills maintained her surely in a state of half dozing that could easily pass for early senescence. He is glad to have slotted Elder Girl into her proper little square: at long last, she is under the thumb of the medical profession and made to behave as a proper Down Syndrome person.

I feel guilty to have let her out of my sight. I should have passed over our doctor’s injunction to let her go to the main hospital in Périgueux alone. From there she was dispatched to this wretched country hospital where I cannot go and see her regularly to keep her in the world of the living. Guilty. Guilty.

In order to keep my mind busy, I thought about poetry. No, I will not talk about “April, the cruelest of month” and about T.S. Eliot. I tried to lift up my spirit with the thought that this month is the promise of gold and blue days.

April, 1885

Wanton with long delay the gay spring leaping cometh;

 The blackthorn starreth now his bough on the eve of May:

 All day in the sweet box-tree the bee for pleasure hummeth:

The cuckoo sends afloat his note on the air all day;

Now dewy nights again and rain in gentle shower

At root of tree and flower have quenched the winter’s drouth.

 On high the hot sun smiles, and banks of cloud uptower

In bulging heads that crowd for miles the dazzling south.

Robert Bridges, The Shorter Poems (1896).

Have you noted the internal rhymes within lines (delay/gay, now/bough, et cetera), the combination of end rhymes and internal rhymes across three lines (cometh/starreth/hummeth, shower/flower/uptower), and the internal rhymes across lines (smiles/miles, cloud/crowd)?

the cornish april - adrian paul allinson
A Cornish April (Adrian Paul Allinson)

The garden is sadly neglected but while going through it to open the gate for the cleaning lady’s car, I noticed how much the daffodils are on the wane, that tulip are perking up, that violets smile through perks of new grass, and that pâquerettes, these small, short-stemmed, wild daisies that are in full bloom for Easter (thus their name, as Easter is Pâques in French) are already dotting the whole grounds with the help of primroses and cowslips. April is a time of arrivals and departures.

In the Valley

On this first evening of April

Things look wintry still:

 Not a leaf on the tree,

 Not a cloud in the sky,

 Only a young moon high above the clear green west

And a few stars by and by.

Yet Spring inhabits round like a spirit.

 I am sure of it

By the swoon on the sense,

 By the dazzle on the eye,

 By the long, long sigh that traverses my breast

And yet no reason why.

O lovely Quiet, am I never to be blest?

 Time, even now you haste.

 Between the lamb’s bleat and the ewe’s reply

A star has come into the sky.

Sylvia Townsend Warner, Time Importuned (1928).

Here, “the dazzling south” of Bridges in the former poem meets “the dazzle on the eye” of Warner. And, coincidentally, Warner employs the same technique of end rhymes and internal rhymes across three lines used by Bridges:  sky/high/by; eye/sigh/why.

april, epping - pissaro
April in Epping (Lucien Pissaro)

April’s mutability is embodied in the trees:  their branches are still mostly bare, but, from a distance, they seem to be enveloped in a yellow-green haze.  Mutability and promise.  “Nature ‘s first green is gold” says Robert Frost.

April

Exactly:  where the winter was

The spring has come:  I see her now

In the fields, and as she goes

The flowers spring, nobody knows how.

C.H. Sisson (What and Who)

april sunshine - victor elford
April Sunshine ( Victor Elford)

But even how much I want to glorify spring, I cannot prevent myself from worry for Elder Girl and melancholy for the time “when we were young” (with A.A. Milne) and when we were roughly and rudely pruning the apple trees with laughter to please Mother on her birth day.

Wet Evening in April

The birds sang in the wet trees

And as I listened to them it was a hundred years from now

And I was dead and someone else was listening to them.

But I was glad I had recorded for him the melancholy.

Patrick Kavanagh, Collected Poems 

Time has gone by. Mother is dead. Elder Girl is aging. I am too.

GLAMIS VILLAGE - james mackintosh Patrick
Glamis Village (James MacIntosh Patrick

Flaming orange Pre-Raphaelite colour and black Malevitch square

Once upon a time … I blogged regularly – almost daily. Once upon a time … I could see properly. Once upon a time … there was a Little Family. Once upon a time…

I see that it has been almost six months since I wrote an entry to this blog. I would like to resume this activity to rule at least one thing from my list of “Once upon a time”. So let me explain briefly why I stopped and what has happened since November.

You may remember that my Elder Girl was diagnosed epileptic last October. In November, our doctor thought that she needed to have her treatment adapted to her condition under medical care, while I would have some respite by myself. The Girls were sent to the nearest cottage hospital for two weeks and I stayed at home.

It proved disastrous for all of us.

Was it relief, after looking after them for so long? I stayed in bed in the completely closed house, in the dark, and slept. I do not remember much. I know that I went to visit them and found Elder Girl sitting down on the floor of her bedroom with a mattress equally on the floor. It was a very dark Sunday in early December and I could not talk with the doctor or the nurse in charge of the ward. I planned to come back on the morrow. I went home and then I cannot remember anything.

Some time must have elapsed. One evening, there was loud banging on the kitchen door. I stumbled there and found the Head of the cleaning lady Agency with a Cleaning Lady. The Head seems to have decided to call the doctor in charge (ours was on holiday). I remember vaguely that I went back to bed and that I heard both Ladies doing the washing-up as our dishwasher had broken down a few weeks before. The doctor in charge came and probably made me an injection (I found the syringe later on my bedside table) and called for an ambulance.

I remember vaguely being carted from the house, telling the people around me which door should be closed last. I have no memory of the road to the main hospital, in Périgueux. I remember the lights when I arrived even more vividly because I was seeing a deep orange light in my left eye. I remember that I told this to one doctor, adding that it was gorgeously Pre-Raphaelite, and he wore a puzzled face. I remember that I waited a long time in a corridor, and then a box room, that there were analyses made and a scan test. I remember that I talked quite normally and fluently and did not understand why people seemed so eager around me. I remember there was a tight pain in my chest and then a sensation of gurgling water near my heart. I remember I was happy and at peace with myself.

Then there is a blank.

I awoke in a hospital room. I tore away the drip from my left arm and the contraption-like, ridiculous stockings into which my legs were encased. I went to the loo and a nurse came and severely reprimanded me, which I did not understand. Then there must have been a doctor and other tests. When I awoke again, the drip was there, in my left arm. I was attached to a monitoring machine. I could not move. I could not see with my left eye but black or darkness.

Little by little, I gathered that I had had a pulmonary embolism and what I thought was a severe migraine. It was nearing Christmas. I had no news from my Girls. I planned to have them with me on Christmas Day but was dissuaded of it. Christmas came and went. I had septicaemia with very high temperature. I could not read. I did not understand why it took so long to discharge me. I hated every day in hospital. I hated every night.

I had The Girls on the phone. They sounded very far away in their own private worlds and did not really understand me.

There was this disturbing black veil over the left downside of my left eye with bright flashes. The migraine was painful but did not want to explode and go away. I was given strong painkillers but with no effect.

New Year’s Day came and went. The main doctor in charge of the service where I had been transferred came back from his holidays. Things and exams were brisker. At long last I had a brain scan. And the doctor’s conclusions.

I would probably never recover the eyesight of my left eye as I had had a stroke. It was no migraine and it had happened when I was seeing this gorgeous orange Pre -Raphaelite light the night when I arrived. I had also had a heart attack. I would probably have to be careful all life long and take a heavy treatment. It had been a close brush with death. There could be others.

He was ready to send me back home but I did not feel equal to leading my old life with The Girls yet and I said so. He seemed surprised. I told him that I had been in touch with the cottage hospital where The Girls were and that I was awaited there.

Thus I was discharged and arrived at the cottage hospital on a sunny January day.

The Girls were grim at best, apathetic at worst. I was appalled at the way they were dressed. I was appalled because they did not show any sign of joy at our being reunited. I was appalled because Elder Girl did not walk anymore.  She was on the floor and was walking on all fours. She did not want to eat. I understood from the hospital doctor that she would not sleep. They were little animals.

That first evening, I said that we would have dinner all together in my room. I had to feed them, spoonful after spoonful. The whole meal. By the end of the day, which is eight o’clock pm in French hospitals, I had seen that there was a hard job before me if they were to behave normally again.

We spent a month in that cottage hospital. We could not go out because it was too cold. I was allowed to go to an ophthalmologist, and another time at home to have some cleaning-up done, trees severely pruned and the new dishwasher delivered. It was awfully cold as I guessed all fuel had been used. I emailed The Girls’ financial guardian to ask for some more to be delivered before we would come back and the boiler seen to.

While we were at the cottage hospital, it was decided that we would receive help: a nurse every morning to help the girls wash and dress, and every evening to help them go to bed. Meals would be delivered while I was not able to cook. Daily help from the Cleaning Ladies Agency would be provided, as well as driving help to go shopping as I cannot drive anymore. It seemed all miraculously too good to be true.

I enquired again and again to make sure that all these wonderful provisions would be there when we left the hospital. I was assured that everything was ready.

When we arrived at home in the first fortnight of February, no fuel had been delivered: it was icy cold inside the house. There was nothing in the fridge and only two meals had been delivered: for The Girls only. I have no recognised existence to be granted this facility. Nurses would not come morning and evening: they were over-busied. The number of hours dedicated for help to The Girls was (and still is) the same as before: four hours a week. The situation was the same as the one we had when we were all healthy.

The Girls have been traumatized by their extended stay in hospital. Elder Girl has been driven to the emergencies in Périgueux hospital twice since then. She relapsed to non-eating, non-walking, non-getting up. She is now in hospital somewhere at the other end of the département and I have both no news and no means to go there: I cannot drive and there are no trains or buses.

I am slowly drowning back into deep depression. I mostly stay in my bed, in the dark, reading and “webbing” the days and nights.

Once upon a time there was a Little Family… Then, there was Flaming orange Pre-Raphaelite colour. Now there is a black Malevitch square.

In need of a word of comfort

I have started writing to The Little Family during the last month but I cannot end the post. Feelings are too raw and I am overtired.

Elder Girl had to be dashed to hospital after a fit where she convulsed and badly hurt her head and scalp. She had a scan, a electro-encephalogram, various tests, was examined by various doctors and a neurologist, and diagnosed epileptic, which is often the case when DownS persons are ageing and heading towards the end of their lives.

I shall not write about life at home. I shall do this another time. Later. Life is difficult, bleak. I do not know how to cope. I do not have the means to cope and help is distilled drop after drop when I shriek for it.

I am tired of advice from people who do not know what I am going through and what about what The Girls are going through. Fortunately, I have a few kind friends on Facebook who have helped me through last week ordeal. Others are living in their own  intellectual private sphere without a shred of understanding.

If you read this, would you please be kind enough to wave, say hello, show that you are here. No more. I feel alone and lonely. I try to be brave but I am NOT brave at all. I am frightened.

Thank you.

Some news from The Little Family

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It has been a long time since I posted my last words on all my blogs. I think the middle of July is the last date for “Sketches and Vignettes from la Dordogne”, when I talked about a play at the Avignon theatre festival. And it was even sooner than this for “Lights and Shades”.

I have not left off blogging. I simply had no time. I have not much time left for blogging, writing, reading, or for myself.

Elder Girl has turned 57 on the 21st of July. I know that when she was born, and later still, she was not expected to live so long. Now, people suffering from Down Syndrome have a life expectancy of an average of 60 years. When she was born, it was at best 30 years. Therefore she has surprised everybody by outliving the supposed limit of her life. Congratulations must be addressed to her parents who took care of her when she was a baby, a child and a young lady. She had breathing difficulties that were remedied to. She overcame all childish illnesses. She was made, and kept, fit. She was attended to. She was taught to drink, eat, stand upright, walk, move, read, write, count. She was given friends. She was given social relationships. She was taught a job, helping to take care of little children in a kindergarten. She has had a full life – as much as her family was able to give her and as much as she could take in.

The counterpart was all the sacrifices that were made for her. Her patents gave most of their lives to her and for her and her well-being. They both died of cancer but mostly of exhaustion from having supported her as they did. Collateral consequences were then for those who have had to support her until now.

But she has been a grand lady.

Shortly after her birthday, I was awoken by a thud on the floor of her bedroom. It had already happened that she slid from an unperfectly made bed while having a nightmare. So, I was not that surprised. However, I was not prepared for what was waiting for me. She was lying on the floor, convulsing, thrashing legs and arms, eyes rolling, scum around the mouth and tongue protruding. I briefly thought of Mother dying in my arms almost the same way, and remembered as a reflex more than as a real thought what was advised for epilepsy crises. I cannot remember how long it lasted. It seemed hours but it was certainly more a matter of minutes. Then, I put her back to bed, and rang up the doctor. 

To be qualified as epilepsy, there should be other crises. There have been none. But some days, there are small electric jolts that last a fraction of second. After each she does not remember what she was saying and doing. There have been fainting fits – one of which was vicious as she banged her head on the corner of a shelf and cut her scalp. She now forgets things: she forgets the time, she forgets what she reads, she forgets to read, she forgets the days, she forgets words. She plays endlessly with her blue pencils – blue only – and never goes anywhere without less than three or four of them in her hand. She lives according a sequence of events whatever the hour. Therefore she woke up one day at two pm, took half an hour to be ready to get up, then had breakfast, wished she had her time for hugging, took her shower, got prepared and clothed, was ready by five o’clock, did not want to listen to her radio programme as in her mind it was not the proper time, but was infinitely surprised that we had no lunch and were closing the shutters when night came. She did not understand it was dinner time, TV time and bed time. She thought she was somewhat cheated of her day.

She forgets where she is and asks to come home, hears her mother, arrived one day saying “Mother is back”, took me once for her mother’s sister (one of her aunts), does not remember where things are in the house, gets glassy eyes, falls asleep in front of TV, sleeps a lot, cannot go up some stair steps. And I might go on and on.

Getting an appointment for a cerebral scanner test and an appointment on the same day with a neurologist at the nearest hospital in Périgueux is a “tour de force”. Considering that she is not a productive person but one suffering from a mental handicap, receiving a State allowance, and being 57, our Western Liberal society is not very much interested in her. She does not produce anything and she does not consume much. What is the point of keeping her living? So tests and appointments are forever pushed back in time. There are more “important” people to see to before her.

Life at home revolves around her now and we live at her own pace. Not much time to read. No time to write or blog.

Anyway, I would be glad if you ever had experiences like mine of any advice you could give and share. Many thanks for your support and help.

gossamer-threads

Turning back

AVT_Marcel-Proust_2054

In the post before last, I told you how I met Proust when I was ten and a half while he was taking a walk near Combray, admiring hawthorn and Gilberte Swann. Anecdotally, he helped me look at hawthorn flowers: he mostly helped me look around me, look differently, read, and respect difference. As did Virginia Woolf.

I was no genius and did not understand “A la Recherche du Temps Perdu”. I did not even read the whole of it this spring and summer. I read “Du Côté de chez Swann” and was interested by Marcel because he was a child. I remember the stained glass of the church window with Geneviève de Brabant and la duchesse de Guermantes, a long passage where the Narrator was telling how Tante Léonie liked her potatoes – and that testifies both of my greed and of my fascination for the length of the passage (over two pages for one sentence!) -, the description of the sound of the bell over the rusty gate at Combray, Gilberte au jardin des Champs Elysées, these small things that were close to my life or that I could experience.

Later, I came back to “La Recherche”, book after book, with stumbles, hesitations, darts forward and re-reads, misunderstandings and non-understandings. One does not exhaust the reading of “La Recherche”, as of other great fiction. But I read the last volume, “Le Temps Retrouvé” with awe. It applies to my life, to my attitude to life, and I find it relevant to our days.

The Narrator is an adult and rediscovers a number of people he has known since his childhood, from afar or closer. And le baron de Charlus makes a sort of roll call of the protagonists, from the past and present, as some are dead and others … decrepit. All previous books have tended towards this moment. Time is “found back” (retrouvé) in the present. All that was before is the past. Only the last pages capture the essence of THE moment. But is Time found back or is it now lost?  With a supreme irony, when Time is found, it is definitely lost. The quest to recover it (“A la Recherche du Temps Perdu”) is to find that it was lost while the Narrator was living it. And now that we are at the end of the quest, what we find is … nothing. Or, in any case, not Time as it was before. This is definitely lost.

I often turn back to my past. It was a time…

Yes, it was a time when I had a family, great-grand-parents, grand-parents, parents and other collateral members. Yes, I was a child, a young girl. There were summers that seem warmer than these summers. It was an easy and graceful life. It was a life of books and of music. A life of discussions. A life with friends and neighbours. A life where there were laughs, long shadows in the evenings, short shadows at noon, a cool house, a lovely garden, children shouting and running, flowers, pruned trees and fruits. What a life it was!

But was it?

What do I remember? Do I remember right? Was there truly such a time? There could not have been days like pearls on a perfect necklace of summery days. There could not have been only laughs. And if there was a cool house and a well-tended garden, there were people who did that. It could not have been plays, and music, and books only. The Little Family was already there: some people must have coped with their needs.

I remember Lost Time and would have it Present Time. But this is impossible. Like the Narrator, I listen to a roll-call of deaths: human beings, places, facts, they have all gone and perhaps never existed as I figured them out.

I remember them as I wish they would have been because I need them. I need to comfort myself with a dream that might have been true.

I turn to British (English?) novels that talk of this past time or a time that reminds me of “my” time: Mrs Thirkell’s “Chronicles of Barset”, Miss Read’s “Thrush Green” or “Fairacre”, novels of a time that was written in the first part of the twentieth century. Novels of past fights, of nostalgia, and I forget that, when they were written, they either already were fluffy eiderdowns or were talking of a reality which was not that cosy.

I forget that when these novels were “revived”, in the 1980s, the initiators of this revival wanted to root the present in the past. And, indeed, it is desirable to know the past in order to understand the present and to prepare the future. There is this maxim that one of my conservative great-aunts used to tell me: “the more you adapt yourself to things that change, the less these things change”. I discovered later that she was citing the Antonines and Lampedusa’s “The Leopard”.

Things must move on. We cannot hold time. It slips through our fingers like water or like sand. It does not repeat itself but in scrolls: never exactly different, never exactly the same.

This is a lesson for my personal life that I learn everyday with difficulty, in cahoots, with tears, with pain, with hurts.

This is also a lesson for countries and societies. We shall not come back to an idyllic time that was embellished by … time itself. The Antonines knew that they lived a moment of balance but that this balance was precarious. The Barbarians were to come and destroy the Roman world to build theirs. But were they Barbarians? And what did the Romans do to themselves? Were they not in part their own Barbarians? When Lampedusa makes his Prince Salina advise his nephew, Tancredi, about adopting changes to maintain the possibility of Salinas and Tancredis, what share of responsibility do the Sicilian aristocratic families carry in their own fall?

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What is the West’s – and I mean all the First World nations – load of responsibility in its decline? What is Europe’s load of responsibility in its vagaries – and I mean the Continent Europe, not only the European Union -? Have we dreamt our pasts?

Better look at them squarely, learn from them, and go ahead. There is no point in dwelling fruitlessly upon the past. It never comes back.

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Diary (8) – Anne-Fleur’s tears

 

Tuesday was the first warm summer day of the year. Yesterday was better – or worse: it depends how you like your temperature. Around 2 pm, it was flirting with 35° C. There is no air conditioning at home but good isolation and a subtle play with the opening and shutting of shutters and windows, according to moments of the day and the course of the sun.

This causes problems to The Girls: they do not know how to play the game and will stay in outstanding heat without closing their shutters and windows, without thinking of the water spray and the water bottle I gave them each, and being long in understanding that they must quit their winter clothes for summer ones. On Tuesday Anne-Fleur insisted on going shopping with jeans and a polo shirt, high socks and winter shoes. I could not make her change into something lighter. Yesterday, she stayed barefoot in her winter slippers, still with the jeans and the polo shirt. Today, I have convinced her at long last that she could put on a bermuda, a T-shirt, and be barefoot in summer canvas shoes. But she clings to her winter nightshirt and bedclothes. I guess she will allow me to change them towards the end of the week. Meanwhile, I have to be cautious and regularly oversee that she is well hydrated.

 

Add this intolerance to high temperatures and heat to my current worries and you will easily understand that my temper is frayed. I am stressed and strained. I am exhausted. I try to stay quiet and calm, to understand what is not understandable and not logic, to listen to what The Girls have to say, to be as “normal” as possible.

 

But people with Down Syndrome have an extraordinary sensitivity. And antennae.

 

Therefore it did not take long for Anne-Fleur to feel that something was wrong and that I was not “normal”.

 

***

The immediate reaction is fear. The deaths she has lived through have not frightened her and I have wondered why for a long time, until, after long circumvention, I understood that she had thought(?) / felt(?) that she would not be left alone but will always stay with her family. Nowadays, she knows (and I am sure it is a knowledge) that I am her only family. After me stands the unknown: a paid family that would take care of her? An institution? In any case, a place where she would not know anyone, where she would not have her furniture, her books, her CDs, her radio set, her routine, her life.

Is this so different from what I feel? In honest truth, no. I would not like to be transferred to the house of totally unknown people or to an institution where I would live at the same pace as a whole community. Proof is that I bear with lots of difficulties the fact that I have lost my life-from-before and dislike The Village life all year round. I dislike not having my furniture, my crockery, books, CDs and DVDs left in Paris. I am uncomfortable living at the pace of The Girls and not my own.

 

How would it be with you?

When she is afraid, Anne-Fleur is still rather rational. But when she gets frightened or scared, she loses her wits. These days, she is out-of-wits.

 

She does not know where are her room, the bathroom, the loo, the kitchen. I find her lost in the middle of the corridor wondering where she is going and where which room is. She does not know anymore how to set the table. She will give me no cutlery and no glass but keep the whole on her table mat. She does not talk. When she does, she stutters, loses her thread, begins a sentence, stops short after three words and cannot remember what she wanted to say. She has almost forgotten what she learnt in Paris. She does not know the day, the date. From one second to another she does not remember what she was looking for. She stands with a glassy stare in front of the TV set, gets lost, starts to nod. I watch, frightened that she would slide down on the floor. Sometimes, she forgets how to eat bread, meat and vegetable together and starts eating her bread alone.

 

She regresses.

 

Two, three, four times a day, she starts to cry and comes to me, puts her arms around my neck and sobs: “I don’t want to leave you”.

 

***

Anne-Fleur is between 1m35 and 1m40. She is thickset, some would say (and have said tactlessly to her face) big. She has brown short hair (short when I have implored the finance administrator to give me some more money to take her to the hairdresser’s), hazelnut slanted eyes that can be “bright, light and sparkling” like those of Elizabeth Bennet, a high forehead with a light fringe – and she puts her forehead against mine saying “we are like deer” -, a nose that turns up at the end, and thin pink lips. Her hands are like little starfishes, warm in mine, cut in two by a line in the palms. She loves to sing and sings flat, is almost tone deaf. She smiles a lot. She laughs. A few things, she learns quickly, like art history or geography; others, she will never understand, like money. She loves some people and dislikes others. She likes long, big hugs. She is stubborn. She is irritating. She is lovable. She is a child. She is an adult. She is complex.

 

She is a human being. Like you and me.

Is it right to put a human being in a slot and, according to this slot, when labelled “mentally handicapped / Down Syndrome”, to move him or her around without asking his or her opinion?

 

Because this is what will happen if I am labelled “mentally handicapped” myself. Beyond what will happen to me, there will be what will happen to The Little Family, to Anne-Fleur. And this is about these facts that she is scared, and regresses, and cries.

 

Wouldn’t it be more just and right to give me, her carer, a status as such, than to put me in the already existing “mentally handicapped” box – which would be a fraud -?

 

Why not, then?

Because it might cost more money?

What is the price of Anne-Fleur’s happiness?

What is the price of a human being?