Your reading and writing comments or a “like” was a surprise for Dr Quack and the local Red Tape. As a consequence, a gardener has come twice and spent five hours and a half in the garden, pruning the demented wisteria, several offshoots of cherry trees, walnut trees, oak trees, making big piles of branches, and cutting part of the grass. A cleaning party is now decided for the 21 July – the whole day with three or four ladies and the gardener to move furniture and book boxes around.
Why is that the consequence of your action, will you ask? Because it is the first time they all here encounter an international public mobilization. You have a weight.
Thank you for your advice as well.
And where is The Little Family?
Anne-Fleur is sick at night. She is still scared to be torn from me. She stressed and strained. Every night she wakes up and is sick before she reaches the loo. She goes under the shower. I clean her. I clean the floor. I put her back to bed. I hug her. I rock her. I try to send her back to sleep, telling her that things will be well.
As to me, after asking various French organisations reputed to help handicapped persons and their families, I am back where I started.
No one has been able to tell me if “carers” existed in France. If they exist, which seems more and more dubious, do they receive a remuneration? This seems even more dubious. Should I have a “compensation” for taking care of Anne-Fleur? Who knows? No one. Each organisation tells me to ask the other. And they send me back where I started.
Meanwhile, I know now – and this was something that I was not intended to know: the person who said it was sorry to have done so -, I know that The Shopping Lady is paid €20,80 per hour to go shopping with Anne-Fleur. And she has told me she does not like it.
If I do a quick calculation, what might I earn? €20 x 8 hours (I will not count the night hours and the meal hours and part of the “being together” hours; I make it an ordinary working day). That makes €160. Shall I make a monthly estimate, taking out the weekends? Let’s say I work 20 days a month: €160 x 20 = €3.200.
This is not bad. Even with half the amount, I would be happy!
But this is a dream.
Even for my lawyer, this is no legal issue.
As to my being declared mentally handicapped, this something that is never ever talked about. Never ever mentioned. Therefore, it is never said whether Anne-Fleur would remain with me or not.
It seems that the handicapped persons like Anne-Fleur are dealt with by our society when they are children. Then, when they become legally adults (in France, when they are 18), they are declared mentally handicapped, given an allowance, put under guardianship, and, most of the time, steered towards a job, staying with their parents while these are able to take care of them. When the mentally handicapped person grows old, she quits her job and her aged parents (or these die), and she is steered again towards a paid family who will take her on board, or towards a specialised institution until his/her death. There seems to be no one from the family after the parents. Brotherly or sisterly care? A void.
What am I to do?
I will need you again. Please, show that you read this blog. Please, tweet it. Please, re-blog it. Please, put it on Facebook. Please, make it known on the social media. I do not want to lose Anne-Fleur and Anne-Fleur does not want to leave me. We want to stay “The Little Family”. So, please, SHOW YOU CARE. You may make the difference when I write to our MP, to the minister in charge of handicapped persons, and to the media.
Compared with the Brexit, with the wars, with the refugees, with elections, with democracy, with all the noise and the rush of the world, we are a wisp of straw, a mere nothing. However, the world, the countries, the nations, democracy – all this is made of wisps of straw, of mere nothings.
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?
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.
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.
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 -?
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.
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.