ALFIE EVANS

I’m sure we all must feel tremendous sympathy for Alfie Evans, the Liverpool child who has been the subject of court orders regarding his life support system. Physically he is a nice looking little boy and it must be heart rending to watch him grow as a child should (though perhaps he is smaller? I do not know) while his neurological and mental progress has been curtailed. Who amongst us does not look at the distraught parents with secret dread in our heart, and think, There but for the grace of God, go we; and how would we endure it? We know that like them there is nothing that we would not try in an effort to save our precious child.

We can have sympathy for the medical team too. In all my experience with the profession (and I am by no means an easy, docile or compliant patient) I have not met a single one whom one did not feel was doing his or her very best to improve matters for the patient. This team will have done their utmost to help the child and support the parents and in the end it has all come to nothing.

Clearly it would be wrong to expect the parents to be able to retain a detached judgement in such cases. That’s not what parents are for. The medical team has a difficult task in that it is expected to deal with the parents with kindness and compassion, but to retain a certain detachment.

I am not sure it has been entirely successful in this case.

It always seems to me to be extremely regrettable when such cases end up in court. At the point where the hospital begins to refuse parental requests to take the child home, or to try unorthodox treatment, then I start to lose sympathy with them. They should, I think, show more humility. They are not always right . Besides (and I don’t care what the law may declare) at the last resort (and we are surely there with poor Alfie) – it’s not the hospital who is responsible – it’s the parents.

Surely the consultant in charge should say to the parents (and God knows we do not envy him or her this task); we have done every thing we can, but we cannot effect any improvement. While we can prolong his life a little with life support, he will not get any better. It is our opinion that the quality of life he would have is too impoverished, especially when there will be no improvement in his condition. It is with great sorrow that we request your agreement to switching off the life support system. They should give the parents a few days to think about this, and then they should ask them how they wish to deal with the time from when the life support is switched off to the time of the death of the child, offering them every support.

No doubt in this case and in the vast majority of cases the hospital is entirely correct in its judgement but if the parents wish to take their child home, or to Italy for other treatment, then I think every effort should be made to help them. They are in extremis. Their child is going to die anyway. If anything can be done to ease their pain, then let it be done.   What difference does it make to the hospital?

If you were hard hearted enough you could argue that this case with its many legal battles has been a colossal waste of money, given the likely outcome that the child will die; but faced with such parental grief and anguish I certainly could not bring myself to support such an argument.

PS Alfie Evans died in the night; may his journey be easy.

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LOVE ONE ANOTHER

2018. Another new year, the 68th I’ve witnessed. I’m glad to see it.

I was reflecting that, in spite of the difficulties that can come with being older, this can be a very peaceful and happy time of life. You just have to accept your limitations, rejoice in what you can enjoy, and contribute what you can. You are old enough to realise that every age of life has its trials but also its joys.

I am continually surprised by the kindness of other people – from one’s nearest and dearest to complete strangers. As an older lady, clearly frail physically and often in a wheelchair, I’m an obvious recipient of offers of help, and I’ve learnt not to resent this. (Officious people insisting on ‘helping’ when you don’t require it can be a real trial, and there is a spurious form of sympathy which is covertly just congratulating itself on not having your afflictions which almost tempts me to unleash the Warrior Queen who still walks beside me but does not often appear. These kinds of people are rare however.)

I like to think that we who have some obvious physical impairment, carry the gift that we enable others to behave at their best.

You have to bear in mind as well that everyone suffers from some difficulty or other, perhaps not as obvious as mine, and you have to be prepared to offer help and support as well as to receive it.

When my 5 year old grandson questions me about my physical difficulties with concern and tact, and draws our conversation to a conclusion with encouraging words which I find remarkably up-building, or our two year old tenderly helps me put my slippers on and carefully moves toys out of my path, or my grand-daughters come and ask if they can help me or do I need anything, I find myself wondering what I have done to deserve such blessings. (And the answer is nothing; We don’t deserve our blessings. ) The kindness of my friends, the thoughtfulness and generosity of my children and their partners, plus the faithful love and support of my husband all make me feel l am undeservedly lucky.

Of course it’s not all plain sailing. Some days I fall off my perch and can’t maintain my usual positive faith in the power of love and the bounty of life. The people who surround one have their off days as well; none of us is perfect and some days the trials of life are just too much for us. We should make allowances for this however. One can always start afresh the next day.

In my fiery youth, my judgement, though I strove to be just and fair, was not merciful, and I could be, if sufficiently offended, remarkably unforgiving. I am not suggesting that I have been somehow reformed into a placid, good-natured creature (the leopard does not change his spots after all), and I do not regret any of my past decisions but I have come to understand that love which does not encompass the capacity to forgive is not love. It is merely a temporary alliance for mutual benefit, and that is unlikely to be sufficient to survive the storms that everyone will undoubtedly meet on their journey.

St John is reported to have condensed the whole of Christ’s teachings into three words. Let us follow his suggestion.

Love one another.

SUN RISES IN THE EAST

UN RISES IN THE EAST

The sun rises in the East, and I am happy that our bedroom faces in this direction. I am most decidedly a morning person, so this arrangement suits me, and now I come to think about it, our bedroom has often caught the morning sun in the various houses where we have lived.

John pulls back the curtains at 7 am, and I lie, warm and snug under my covers, the back of my bed raised behind me, and I watch the dawn develop. Sometimes (not often in England) the sun rises in a perfect fiery ball and roars its way upwards into the sky. Usually you just glimpse its golden brightness visible through lines of cloud; or the blackness of night gradually seeps away leaving banks of colour, from a liquid gold, fiery or blushing pink, to a pale green… On occasion however it just lightens from impenetrable black into a dull and sullen grey. However in general it is very beautiful, different every day and no two days are ever the same.

Sometimes (again, not often here) there are cloudless skies, but more usually there are clouds forming and moving, of infinite variety. I have always been a cloud- watcher I used to lie on my back on a steeply sloping field next to our house and watch them scudding over, generally in the same direction (from South West to North East I presume). Every so often it would vary in its disciplined propulsion and then I would rush off and say to my mother, Clouds are going in the wrong direction! She never looked as if she was as perturbed as I thought she should have been.

There are trees in our own and our neighbours’ gardens but there is one very large and spreading tree, now bare of leaves in a further away garden. I enjoy watching the birds occupy this tree. They too watch the wind and the clouds for anything useful. They fly off one by one, in different directions. Yesterday there we were seven mirds in the tree; today not a solitary one.

I find ‘MEditation’ incredibly difficult to do – so boring, mind rebels – but it occurs to me that this sitting, peacefully observing the sun rise yet again, and being thankful for this miracle which has happened everyday since the beginning of time, and will continue to happen until the end of time – which day will surely come – only I will not be there by then- is as good a form of meditation as anything.

Lastly, behind the Tree of Seven Birds, so distant that I could not reliably identify them, but biggish so probably crows, a flock of birds filled the sky for a brief moment. A murder of crows, I thought; and then reflected on the probable origin of that unkind and unfair phrase.

For about ten days of the year, the sun strikes a mirror which reflects onto another and shines full on me as I lie in my bed. Although this is entirely a fortuitous event, unplanned by me, I feel as thrilled and delighted as my Celtic ancestor, standing in Maes Howe, the beautifully built tomb on Orkney must have felt when the sun shone down the entry tunnel and illuminated the dark interior.

May the light shine upon us.

TEN THINGS I COULDN’T GO WITHOUT

TEN THINGS I COULDN’T DO WITHOUT

I was tidying out a drawer of my desk (to be truthful, I was looking for something in it) and I came across some writing that I produced for writing class (which I left at least ten years ago.) It’s interesting comparing your 10 years ago self with your present day one. I would still stand by by the list, but I find myself less certain on world issues, and much more sceptical than I was then (and I always was fairly cynical; no starry eyes optimist was I).

Anyway here’s the list which remains the same even if the commentary is slightly different.

I find myself, to my surprise, agreeing with that old misogynist, St Paul: there is nothing without love. I paraphrase, but he said it at length. (2 Corinthians, 13, )  It may be money that makes the world go around, but its love that ensures it continues. If you were denied every other joy and comfort, but there was still love in your life, you could survive.

I cannot find a word in English to encompass the whole of what I mean in my second quality. I sought the word in religious essays but they were invariably vague. I refer to that state of spiritual well being when you and your god are in harmony. It’s when you know that in spite of your lamentable short-comings, you have struggled to live according to your highest principles. You know that you have done your very best and that you haven’t sacrificed your principles for greed or vanity, and you are entitled therefore to hope that those facets of the quality you were unable to comfortably discharge will be imputed to you. It’s a kind of spiritual health. I have no time for the so convenient and arrogant ‘state of grace’ that some religious groups pretend to possess. This is a battle ground that must be contested every day, but if you go out each day with a humble but a valiant heart and a courageous but contrite spirit, there is little that will be able to stand before you.

When I wrote this originally, my beloved friend Carolyn still walked he earth, and she reminded me of this third quality for I had taken it for granted. This refers to one’s physical gifts, which one received at birth and are in no way earned nor as we ‘entitled’ to them. This would include one’s health, one’s intellect, one’s beauty and charm, and one’s natural gifts and talents.

Fourthly comes one’s family and those people whom one loves. I count myself fortunate that I had parents who loved me; a tender brother who shared my rich (in ways that mattered) and restless childhood; a husband who is both reliable and exciting; loving children; considerate step-children; wider family of good calibre; many grandchildren each with his or her unique personality; generous-hearted and loyal friends. There’s never a dull moment in our lives. I’m not an especially demonstrative person, and it’s not easy to overcome my defences and enter into the space reserved for intimates, but those I love, I do so with passion. I’m not looking to expand my inner core of Beloveds:I just wan to keep them.

Fifthly I would place the execution of whatever one’s talent is. It is good for us to strive to accomplish things that we find difficult but there is joy also in the exercising of a natural talent that you know you’re good at. I imagine people who can mimic others, or dance, or sing (none of which I have any facility at) enjoy doing those things much as I enjoy writing.

Sixthly, perhaps controversially, solitude. I would hate to be absolutely alone, but if I had only the choice of being alone or continually with crowds, I would choose the solitude. When the door closes behind the last member of the family to leave the house, and several hours of sole occupation

lies enticingly before me, I feel my spirits rising. But in those days I wasn’t entirely alone for at this point our cat would emerge from wherever she had been hiding and come running to me with a little rrrint of pleasure. Just us, she would say, purring when I picked her up and patting my face with her paw. And I knew just what she meant.

Seventh, friends. Although I value the friendship of men, it is often hedged around with difficulties. The friendship of women is relaxing. They are easy to talk to; they are tender when you’re feeling low; they offer practical as well as emotional assistance. They laugh with you. They know that it’s important you get a scarf to match your jumper. They have wisdom and understanding. They give you advice tactfully and they know when to keep silent and when to look away. In the little things of life, as well as the large, they are always with you. I don’t think in my callous youth, I valued the friendship of women highly enough, but I certainly do now

My eighth choice is the glory of the earth : one’s joy and appreciation of the natural world. I rejoice in its fragile beauty. The wood I used to walk the dog in is a living organism. The eye of the blue tit as it hangs upside down and roots for peanuts is bright and intelligent. The rose slowly unfolds in the warmth of the sun, changing colour every day, and releasing its fragrance into the summer air. In all the seasons with the passing of the sun each day as night slips into the garden, as the winds rise and fall, as summer drifts slowly into autumn – I love it all. I am an earth-dweller on a planet whirling through space, and I see in every living thing the majesty of the creator and the wonder of life. If you were religious, you could feel that even the worm as he oozes his necessary way through the compost heap, is glorifying God.

My ninth choice is beauty. I love beautiful things in all areas: the beauty of the world; its people; of everyday well crafted objects; of works of art; of music. Beauty is a kind of harmony. It soothes the eye and restores the spirit.

For my tenth choice, I’d take books. The feeling of warm anticipation as you stagger out of the library with an armful of books, or even as you load up your kindle; the look forward to the quiet hours, lost in those other worlds. Entering a good book shop is like going into a holy place.

There’s my choices then. I’ve got some preferences I shall just register as indulgences, things I’d be loathe to do without: cats, clothes, chocolate. And children – other people’s and in small quantities.

As for things I could cheerfully do without. Ironing. Cleaning the bath. Stupid people. Pain and discomfort. People with loud voices and no volume control. Cars with radios too loud. Overbearing guides in National Trust houses who sweep you along as though you were a criminal come to steal something and tell you gossipy stories about Lady X, instead of concentrating on the artefacts. People who talk endlessly about themselves. Undrinkable wine in plastic containers. Incompetents who take up your time and never get to the point. Religious humbugs. Hypocrisy of any description. Telephone sales persons. Men in antique shops who take up too much space. Ditto men in ladies clothes shop. Really badly behaving children and their endlessly indulgent parents. Politicians of all colours. How rich we are conversation, and how much our house is now worth. People I don’t know who call me by my christian name. Putting the clock back. How long have you got?

ON WORRYING

ON WORRYING

In my youth and prime of life, I enjoyed a luxury and privilege that I was insufficiently grateful for; I did not suffer much from either guilt or from anxiety.

On guilt, I still largely hold the same position. I generally think before I take action and I decide that I’m comfortable with the damage I may be about to inflict. Or I decide it’s disproportionate, and then I pass quietly by. As I get older, I pass by more often than I used to do. I no longer demand or expect near perfection in others. I know I don’t achieve this myself, so why should I expect it of anyone else? But I still think guilt is something people indulge themselves in. They should have thought of that before. Or else they should attempt to make reparation.

I did of course get nervous like anyone else before interviews, making speeches, setting out on long journeys; but I also was confident of my ability to steer my way out of most difficulties, so I just dismissed these anxieties as trifling and carried on.

I have suffered from Parkinson’s disease for the past 20 years or so. If I get my drug intake wrong; if I make a mistake; if I forget the time; if I’m physically unwell; if I suffer an emotional blow; if I have to expend too much emotional or spiritual energy, or even if circumstances cause me to become extremely tired, then power can drain out of me like water from a breached dam. Then with hardly any notice I can find myself floundering, unable to move or to go from sitting to standing, with shaking limbs without power, couldn’t retrieve an object from my bag or put on my coat without assistance, and in extreme cases I am unable to power back up for several hours. I don’t lose mental capacity. I can still think my way out of the difficulty, but I need help from other people. To someone like me, accustomed from a very early age to depend upon my own judgement and although I have always been fortunate in my travelling companions I never-the-less had a clear sense that in the end, you stood or fell alone; this is a grievous calamity.

I’ve become aware that my anxieties are increasing, so that of late I’ve been unable to sleep for worrying about ridiculous things, which my logical self knows are stupid. Even the prospect of baking a cake – something well within my capabilities – can cause hours of anxiety. Tranquilisers are quite useless at fixing such a problem. They don’t deal with the root cause; in my case they adversely affect my balance; and you worry about being dependant on them and them rotting your brain. Come daylight, I can see that these anxieties are, if not entirely without foundation, exaggerated to an unreasonable extent. But by then I’ve not slept well, so you’re already not in peak condition, so more likely to suffer collapses. You begin to feel depressed, something I’ve never suffered from.

I came across a book – Anxiety Relief and Panic Attacks by Matthew Lewis Ph.D. – which appealed to me. The author writes clearly and sensibly about anxiety, with sympathy but not minimising the difficulties. One of the suggestions he makes, which I could really identify with, was that you had to call up your best self, and hold on to that self, as you tackled these various problems. He didn’t say it was going to be easy.

I’ve tried, from time to time throughout my life, various paths to relaxation and meditation. I’ve always found them tedious in the extreme. Relaxation tapes where someone talks become irritating after you listen once or twice – you already know the tale; the narrator’s nasal twang annoys you; it’s a colossal waste of time. Doing a body search where you concentrate on various parts of the body merely highlights minor aches and pains you were previously successfully ignoring. Reciting a mantra – Om – makes me feel I’m part of a cult. The thinking overview, detached and observant, that is always present in me, observing and judging, which in normal life is such an asset, simply judges these processes as silly and unnecessary.

But Lewis just suggests you deal with the anxieties by blocking them out. So you just acknowledge your anxious thought with a gentle nod, and you concentrate your energy on your breathing. You breathe in, counting in your head to 4, you hold for 2, and you exhale for 7, and then you start the next breath. When your next anxiety rears its head, you acknowledge it – you don’ t try to chase it out, nor do you beat yourself up for having it; you just make it quietly welcome and then you return your attention to your breathing and counting. You do this for as long as it’s necessary. I find I’m yawning after about 4 breaths, and even now typing this out, I’ve already yawned three times. Perhaps you’re just boring yourself to sleep but I’ve no issues with that. You’re in charge of the process; you can do it anywhere. You don’t need equipment. You make no attempt to understand the thinking process or alter your conclusion: you can certainly do that if you wish but you must do that in you working day. Above all, it’s all under your control and subject to your own judgement. The sleepless thinker is slightly sceptical but has been willing to suspend judgement. She’s not offended by the process and her defences are not breached.

I find it difficult to refrain from meddling in the actual examination of the problem on the spot, but I’ve promised myself to wait until next week. And behold – a miracle. I fall asleep, and into a deep sleep, and if I get up in the night I go back to sleep swiftly. And this has happened now for several nights.

Thanks be, variously, to God, to my essential self, to my long suffering husband, and to Dr. Matthew Lewis.

Hallelujah!

THE SONG OF THE NIGHTINGALE

I’m sitting, on Mother’s Day, in the coffee shop of the National Trust’s property at Ightham Mote in Kent. John has gone outside to wait for Elisabeth, Robert and William to arrive. We’ve bagged a table and obtained a high chair. I’m sitting in my wheelchair as it’s more comfortable, and we’ve wedged a toy we’ve brought for William in the high chair. It’s a very large gorilla – we can only just stuff him in; with an engaging face and bright yellow eyes that follow you round the room. His long arms dangle down. It’s interesting how other visitors, after an initial startled glance, resolve into an attitude of calm indifference, as though a lady in a wheelchair accompanied by her pet gorilla in a baby’s high chair were quite an ordinary sight. (When William arrives, they relax and come over to us and enjoy the joke. He is a very engaging gorilla! And boy, of course.)

For the past few days, we’ve been wakened by the song of the nightingale. This, I regret to say, is not the unmitigated joy one might suppose! We haven’t heard them for a few years, so of course we’re delighted that they’ve prospered enough to be back. I have actually seen the nightingales here, only once, on the feeder. They were slightly larger than a thrush, a nondescript brown with some red in it. I had always supposed, before I heard it (they do not venture as far North as Scotland) that their famous song was of a joy and sweetness comparable with the thrush, robin or lark. Whereas in fact it is a long and complex series of shrieks, twizzles and other strident noises delivered at extraordinary volume.   It completely drowns out all other birdsong. The nightingale, I thought, is the Maria Callas of bird song. One is glad that nightingales live amongst us, but after about ten minutes uninterrupted shrieking, you’d secretly prefer just to turn it off.

I’m not really a fan of opera. It’s too emotional. It slips past your rational, logical persona and attacks your undefended emotional response. I once attended a performance of Rigoletto which was memorable for two reasons. The opening scene took place in a brothel, and the ladies of the chorus (or so I supposed) were dressed in rather jaw-dropping outfits where the bosom of the dress was made of see-through net, giving the appearance that the singers were topless. I whispered to Carolyn that I was surprised that the ladies of the chorus had agreed to dress like that. Carolyn snorted. “These aren’t ladies of the chorus,” she replied. “They are just floozies hired in for the tits.” The second unexpected reaction was my own, when Rigoletto sings his doomed song of love for his daughter, and how he hopes to keep her safe and hidden, and suddenly from nowhere I was overtaken by an entirely surprising and unwelcome storm of weeping for the pity of it and how impossible his wish was; and how his possessiveness was likely to destroy his daughter’s love. As I said, opera is too subversive for me.

And I was never a Callas fan. It seemed to me she strained too hard; she couldn’t just stand in her place and let the music flow through her; she was always striving to be the loudest.

And yet one evening, having delivered my children (and others) to Horsham for orchestra rehearsal, I was driving back alone through the hammer ponds, enjoying the fragrant summer evening, not really listening to an opera programme on the radio when suddenly Maria Callas was singing. I do not even remember what the aria was, but she was utterly magnificent. I drew my car into the side of the road and listened in rapt attention, shouted Brava! with the audience at the end, applauded and wept a little. Finally I could understand what people saw in Maria Callas. She was a diva, and whereas when she did not manage to cover herself with the mantle of the goddess the result was tawdry, when everything came together she became the goddess, if only briefly, and you felt yourself to be standing on holy ground. And all this in a lay-by as the sun went down somewhere between Horsham and Haywards Heath!

The gorilla when he makes his cry that resonates throughout the forest, and the nightingale when he drags us to wakefulness at 5.30 am are delivering the same urgent message.   Let us enjoy being alive!   Life!

 

THE VERY HAIRS OF YOUR HEAD ARE ALL NUMBERED

THE VERY HAIRS OF YOUR HEAD ARE ALL NUMBERED…

(Luke 12:7, King James version.)

You may recall that I injured my back and have since retired from view as it were. As pain levels rose from present but not really bothersome, through actually quite painful in places, to the implacable intolerably painful, continuous, and quite unbearable, I could see my own behaviour slip into patterns that I myself looked at disapprovingly as if I were the mother of a troublesome child. (Normally I identify with the mother but this time I am the roaring child.)

Try and stay calm and be pleasant, my mother self says, ineffectually, as I sob quietly (well she would probably say noisily) in my chair. “What do you know about it?” I snarl at her and she goes away, shaking her head. When someone calls, I just think, Tell them to clear off. The telephone rings and I say, before I even know who it is, I don’t want to talk to anybody. I don’t want to eat either, and I can’t sleep, and I just want to sit in a warm place, not move, or answer questions, and be left alone.

Eventually John and the physiotherapist coax (force) me to seek an appointment with the doctor. He sees me fairly promptly and John made the appointment and I wonder what he actually said. The doctor suggests some neuropathic drug to take which should ease the pain and enable the damage to heal. It’s probably rotting my brain as we speak, but it certainly relieves the pain, bringing it down to a manageable extent. Maybe I will live after all. I begin making lists of things that need doing (but not, it should be pointed out, actually doing any of them.)

Just out of interest my hair was in a dreadful state during the worst few days of that crisis. It’s another thing we should remember : to try to be grateful for gifts we take for granted. I’ve always had very undemanding hair. In my youth it was a dark brown, entirely without red in it, and I wore it shoulder length or in a ponytail. This suited me and was cheap and easy. I used to swish it over my naked babies after the bath. It had a slight kink in it that made the ends flick. From about 21 I had a small fountain of grey hairs from the middle of my forehead which I left as it was. (My hair became grey quite prematurely. I think this is an Isle of Lewis gene. My grandfather had white hair as a young man and my son has a pronounced wing of white hair.) Sometime in my 30s I decided I was too old to have long hair and had it cut short (in Aberdeen of all places.) This made it very easy to look after. For more than 30 years I’ve had it cut short. The absence of weight makes it curl; so I shower, towel dry it, put on some moose, run my fingers through it to style it, leave it for 10 minutes to dry naturally, then comb it out, a little spray, and it’s an attractive hairstyle. It’s never been permed or coloured. I doubt if it’s care costs me more than £200 a year. But last week it just sulked and whatever I did, it lay, lank and unlovely on my head. I got very exasperated with it and wondered whose horrible, lank, ugly hair I’d got and who had stolen my own desirable easy wavy hair. Wonder of wonders it has returned and when I look in the mirror it is I myself I see, still queen in my own kingdom.

My back is by no means recovered, but there is hope that it might improve.

Thanks to those who put up with me last week, especially my irritable but supportive and loving husband.