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

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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?

Diary (7) – Mentally handicapped, mentally disabled, different

Virginia Woolf
circa 1933: English critic, novelist and essayist Virginia Woolf (1882 – 1941). (Photo by Central Press/Getty Images)

I was ten when I first met Virginia Woolf. I was something like ten and a half when I met Marcel Proust. These two meetings were to be decisive for my future life.

Of course, they were not in-person meetings. I may have already told you about them, but I need to remember them clearly today to help me go on in life.

***

I met Virginia Woolf when she was going “To the Lighthouse” and while I was in bed with the flu. It was winter. There was a bleary light in my room. I was half asleep and half awake, creating characters from the gathers of the trim cretonne. I could see noses, forefronts, eyes – all from the rays and flowers, small tight rosebuds, of the material and the plaster of the ceiling or the white light over the polished floor. It was a pleasant half-floating state, half between sleep and wakefulness, between consciousness and fever.

I had told Mother I had nothing to read anymore, and she came back from outside – a visit? – carrying a flaming book, all reds and oranges, with the black silhouette of a lighthouse and of a small boat going towards it. “Going to the Lighthouse” – Virginia Woolf.

It was a curious choice for a little girl being ill. However my parents always had curious choices. I dipped into the book as one dips a toe into the sea and I was hooked. I did not understand the story or even the sentences. I understood the words separately. I was rocked by the sentences. I was entranced by the mother, Mrs Ramsay, and I was charmed by the painter, Lily Briscoe. I was pleasantly rocked to sleep, rocked in my sleep, rocked in dull ache and semi-unconsciousness. I was happy, in a daze, losing track of hot water bottles, drinks, and meals. The characters in the flounces of the cretonne were those of the novel. It was an entirely new experience bordering unconsciousness or this drugged state when one is overwhelmed by fever and apprehends the world as something blurred, distorted, but all together far and pleasant.

When I awoke from that state and began to recover, I asked for my usual books and left Virginia Woolf for more congenial companions. Nonetheless, I did not forget her. I looked her up in the dictionary and asked Mother about her.

I gathered that she was dead, that she was one of the greatest writers of the twentieth century – and others -, that she came from an intellectual and artistic family, and that she had been ill all her life, suffering from either mental illness or acute depression, and that in the end, she would not bear it anymore and had committed suicide in 1941, in the River Ouse. Mother doubted I would understand her novels but she was allowing me to read them if I wished.

Thus began my story of love/repulsion with Virginia Woolf.

***

I met Proust in the kitchen, in the dark corner between the purring refrigerator and the pantry cupboard where the most useless articles were kept. There was a hardback wooden chair there, without arms and without cushions. I used to perch myself on the seat with my feet on the middle rung and pretend I was an owl.

There was an intense discussion around me, involving Father and craftsmen from the village, about a new washing machine. They were surveying the room and meeting regularly at the centre, around the big table. I was unnoticed and diving with delight in “Du Côté de chez Swann”. Proust and his family were walking on the road and he was watching Gilberte and hawthorn flowers.

Not very long ago, I told you about Mother’s love for simple flowers and among them hawthorn flowers. Therefore, I perfectly understood that one might be absorbed in their contemplation. What I did not understand was the subtle difference between the child who was absorbed in the flowers, the Narrator, and the real Marcel Proust who was all three and neither.

The description of the hawthorn flowers as a group and that of a unique flower were stunning. I was dizzy before so much beauty, so many nuances of white and pink, so detailed petals, such powdery stamens, such complex little leaves. And the whole mass of them was like a wall, a veil, compact and evanescent, strong in its full blooming life and still promises to come, and fragile as to the duration of this life.

I remember leaving my perch on the chair, brush against the walls not willing to be seen, and going out in the courtyard, blinking from so much light after my dark corner, dazzled by the sun of which I was feeling the warmth on my arms and my naked and grazed legs, lost in the sudden violence of colours, looking for a path where I had seen Mother adjusting a wild branch of hawthorn the evening before. There was the untidy bush in the full splendour of new May, with the wild untidy splendour of the meadow on the other side of the thorny hedge. For the first time I was watching herbs, grass, flowers, branches. I felt intoxicated and happy as I had been with the characters and the landscapes of the Lighthouse. This was my world. This was the world.

I heard Father’s step beside me and I turned to explain and share my exhilaration and exaltation. There was no mocking, no smiling, no laughing. He was glad I had discovered another door to this world that was precious and essential to live and to survive, as he had explained two or three years ago when he had had me visit a concentration camp. He hoped I would live the same while watching paintings and listening to music, or playing music, or singing – as it painting myself was rather a lost cause, wasn’t it, Squirrel? And he smiled.

Did I know about Proust? When he was writing this hymn to nature, he was confined in his cork-lined room, suffering from asthma, neurotic, going out only when it was night, a little queer. Was he like Virginia Woolf, I asked, remembering the tall, angular lady of whom Mother had talked with such reverence. Father said, they had lived at the same time, had never met, and were different. Yet, they had both made a revolution in literature, a revolution with their thoughts, with the words, the grammar, the vocabulary, the style. That was what I was experimenting now, probably as I had experimented it when I had read “To the Lighthouse”.

But was he depressed or mentally ill? He was … different. Some might have thought he was neurasthenic. Or not “normal”. But what was being “normal”? Was it to follow the others and do the things they did, think the thoughts they thought? Father was wishing that I would never be “un mouton de Panurge”, and, at the risk of seeming abnormal and weird, would think my own thoughts, follow my own path and live my own life as best as I could. The norm was defined by the greatest number, which did not mean it was just and right. Were I to be absorbed in literature, the arts and music, I would certainly be deemed bizarre. I would also have times of feeling that I was losing touch with “reality”, times of great sadness and of great joy. But at least, I would live.

Thus began the story of my fear of being different and not different.

***

I need to say this today, once more perhaps. I need to hear Mother speaking of Woolf and Father of Proust. I need to re-assert my belief that Woolf and Proust were different, that they suffered but created, that they give a sparkle of life to their readers. And that I am one of these readers. I have received this sparkle of life – a tiny one – that makes me weird and bizarre in The Village, towards the Bureaucracy.

All right. They may need to put me in the box “mentally disabled” or “mentally handicapped”. But I have to be persuaded that I am not. That I have been depressed but have come back from this inferno again, and again. That I am well. That I am different and not different.

Boxes are useful: they are pens for the moutons de Panurge, which I am not. This might be disturbing for Dr Quack, the “socialising lady” and the social workers. What do I care? I am free to accept or to refuse the box. If it is dangerous for The Girls – and for me, as I do exist myself -, we shall manage differently. There must be a way to care with intelligence.

For now and forever, give me Woolf and Proust and all the others.

And let me live my life.

Different.

AVT_Marcel-Proust_2054

The Caretakers

This is a blog by Theodora Gross that I thought fit the situation of The Little Family, including mine – and perhaps yours.

The Caretakers

The year I was finishing my PhD, I would go to a therapist once a week. I was trying to manage depression, which honestly I think is pretty normal when you’re finishing a PhD. That sort of intensive work, for that long, can be so difficult — you spend your days staring at a screen, trying to make the words and ideas fit together, and then you try to manage the rest of your life at the same time. It was one of the most difficult periods of my life.

Anyway, we talked about my childhood, and one thing she told me was that I was a “caretaker.” I think she said that partly because when I was about twelve years old, I became responsible for taking care not only of myself, but also my little brother. Then later I started babysitting, taking care of other children. Even later, I worked at summer camps. Almost all the jobs I had before going to law school involved taking care of people, in one way or another. But it started with taking care of my little brother.

There is another way of being a caretaker. Somewhere along the way, I was taught to do what we now call emotional work: that is, taking care of the emotional needs of other people. Being not only responsible, but also responsive. This is something a lot of women are taught, of course. I think I learned it because I was raised in a Hungarian family, where you were not only supposed to do the appropriate thing, you were also supposed to feel the appropriate thing. To respond in a way the family thought was appropriate. If you didn’t, you were called an ungrateful American child. Or spoiled. I’ve been called spoiled many times in my life. It’s an interesting word, with an implication of rottenness — if you don’t behave or feel the way you should, you are somehow rotten. I think a lot of people were raised this way, although it was starting to change when I was a child — there was already a sense that children should develop their own sense of self, should learn to stand up for themselves, to create their own boundaries. But that was not part of my upbringing.

So I became a caretaker, and for the most part I remained one. As I lawyer, I took care of clients. Later, as a teacher, I took care of students, and of course I still do. In some ways, it’s like taking care of your little brother. It doesn’t mean giving him everything he wants — it means making sure he heats a healthy dinner, does his homework, goes to bed at the right time. Taking care of students means sometimes giving them things they don’t want, like grades they will be unhappy about — because hopefully they’ll learn from getting a “bad” grade, and do better. It means doing what you believe is best for someone else.  It also means listening, intuiting what is not said, caring.

There are good things about being a caretaker: if you’re doing it well, it’s helpful to other people. It makes conversations and interactions better, smoother, easier. This would be a difficult world without nurses and teachers, the types of people who are tasked most directly with caring for someone else. I don’t just mean helping — a surgeon can help you without exchanging a word with you. But nurses do both the emotional and physical work of caring, and that’s really what I’m talking about.

The danger of being a caretaker is that it can consume you. Taking care of other people is one of the most exhausting things you can do, as anyone with small children knows — in that situation, you are responsible for all their needs, physical and emotional. When my daughter started daycare and I went back to work,  I was surprised by how much of a relief it was to do that sort of caretaking instead.  I loved being with my daughter, but taking care of undergraduates, even sixty of them, was so much easier than taking care of a single two-year-old! That was of course because two-year-old children have no boundaries at all, physical or emotional, whereas teaching creates boundaries as well as connections — the emotional work of interacting with students was much easier.

Most women will know what I’m taking about when I say that caretaking requires emotional work, different amounts depending on the situation. Women are usually taught to do that work as they grow up — they are taught to be caretakers, to make others feel comfortable. They are taught to agree, to be agreeable. To defer when they are told they are wrong, to respond when a response is asked for. They are taught to take care of homes, men, children — and anyone they are in conversation with. If you’re a woman reading this, you probably have an instinct, in conversation, to make sure the person you’re talking to feels comfortable. It’s like putting a pillow under someone’s head. Smoothing a coverlet.

There are good things about that kind of work — another word for it is politeness, and back in the nineteenth century, gentlemen, as well as ladies, were praised for their ability to do it. Somewhere along the way we stopped asking men to do that sort of emotional work, and in male discourse we began to value authenticity. Speaking your mind became a masculine trait, although in women we still valued the ability to soothe, to make comfortable, to take care. That’s changing, although we’re at the point where women are being given the advice to speak up and ask for what they want, then penalized for doing so. It’s a confusing time. The bad thing about it is that, once again, it’s exhausting. Have you ever been in a conversation with someone you disagree with, but that person is also someone you need to treat with respect and politeness — maybe an older relative? Nodding, smiling, saying the soothing thing? Not getting into an argument? And ended up with a splitting headache afterward? Yeah.

What I want to say here is that being a caretaker can be a good thing, but you can’t do it all the time. You lose too much — to much energy, too much of yourself. There are times when you have to draw boundaries, when you have to retreat behind your own walls. You have to take care of yourself. That’s a cliché, but it’s true. There are times when you have to prioritize your own work, your own needs and desires, or you will burn out from trying to provide heat and light to other people. And caretaking can become a place to hide.  A substitute for finding your own way, doing your personal work. It’s so easy to say “Everyone else needs me” and ignore yourself. It’s so easy to find emotional fulfillment in meeting everyone else’s needs, at least for a while. Parents sometimes realize that as their children grow older and they think, wait, what was I going to do with my life again?

Caretaking is not enough. Taking care of other people’s needs isn’t enough. Even saving the world isn’t enough if you lose yourself in the process. Although saving the world is a very good thing to do, of course. Society needs caretakers, and honestly we could probably use more of them. Some of the people who are supposed to be caretakers aren’t doing a very good job (politicians especially — anyone remember that they’re supposed to advance the common good?). But don’t let yourself be trapped in being a caretaker. That’s not good for you, or ultimately anyone else.

Take care of yourself too. It’s not new advice, but I think it’s good to be reminded of it every once in a while.

Image by Jessie Wilcox Smith

(The painting is by Jessie Wilcox Smith.)

 

Source: The Caretakers