Diary (9) – Please, help!

" I have Down Syndrome... What then?

Dear friends and readers,

Positive things first.

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. 

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.

Please, help!

Turning back

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.