Saturday, December 11, 2010

The Wind's Song

For Chris


I live with a double-edged sword;
like the earthquake which made us aware
our insignificance
in the general scheme of things
as well, made us acknowledge
the magnificence of that same scheme.
If the numinous is both beautiful
and terrifying, every day
of my life is numinous.
Old age and illness are bound with fear
but there can still be beauty: a sunrise,
a toddler playing in a birdbath.
I am buying two wind harps which will
ripple with the spirit of the wind harmonizing birdsong
and the rustle of leaves.
They will sing the song of my life,
they will sing the song of my death,
here in my garden.

Wednesday, December 8, 2010

Timeless Journey

My unconscious does not
acknowledge death as an ending;
as far as it is concerned,
it has gone on forever
and has no need to recognise
human transitions and boundaries.
The fact that my conscious mind
and, even worse,
my over-weening ego will disappear
makes no interruption
to its timeless journey.
I feel I’m being evicted from myself.

At times, I want to borrow
a long-ago, four year old’s rebuke,
and say: “I’m me and you’re you,
and you do it”.

Monday, November 22, 2010

Look out

I am being undermined by a poem.
I had a rigorous thought
and shoved the blame off
onto someone else’s shoulders.
Wallowing in self-righteousness,
I thought I’d try a poem;
but the poem took the thought
mulled it over and over
and re wrote it casting the blame
squarely back where it belonged
on my own shoulders.

Rule No 1: never trust a poem.

Drowning

I inhabit a watery
landscape;
like the man in the poem,
I am far too far out,
not waving, but drowning.

Drowning creates communication
problems; it’s difficult
for a bystander to know what to say.
She could venture a direct question:
“Why are you drowning?”
which might ellicit an equally
direct reply: “I’m out of my depth
and cannot swim.”
But the grammatical ambiguity
still remains: the present continuous,
“I am drowning” is never resolved into
the perfect tense “I have drowned”.
And an obscure answer might be better:
“With my crossbow, I shot the albatross”
or a metaphysical subtlety
“I am not drowning, life is drowning me”

Well, if you’re going to bring fate into it!
Fate never follows human timelines
No need to launch the lifeboat;
there’ll be no drowning today, tomorrow, not until the end of time.

Better just wave back and call out;
“have a happy day”.
If challenged later
to justify the crassness
of this remark
insist you’re not wanting to deprive me
of a moment or two’s happiness
before the final gulp.

Monday, October 18, 2010

Doubting

More than 55 years in one city
and only four earthquakes
until about six weeks ago
when there was a ferocious one
followed by, so far, 2000 aftershocks.
The earth, like an injured animal,
is containing within itself the pain
but from time to time
rears up against it.

With the earth jerking
and shuddering under our feet
and our houses cork-screwing
upon their foundations,
how are we to maintain
we are of any account
in the scheme of things?
We can rebuild our houses
but how are we to restore our shattered confidence?

Sunday, October 3, 2010

At odds

My poetry-writing self is wily
and very observant;
she’s in cahoots
with my dreaming self
and together they delight
in the mischief of undermining
my practical, everyday self.
Like Jung, they do not need to believe;
they know, whereas my agnostic self
lumbers from doubt to doubt.
They know that at death,
the body disassembles
its carbon, nitrogen, oxygen
into compost but they also know
that death is an enlarging horizon,
that the essence of self
cannot be destroyed.

I would like to die when I am dreaming
or writing poetry
instead of living
this incomplete fugue
where one part follows another
only to be interrupted
by a discordant jangle.

Memories that clutch and cling

The house did not contain a memory
of him arriving unexpectedly,
our sharing a meal,
listening to music together,
sitting on the floor giggling foolishly
as we played childhood card games.
These memories belonged
to a different house
in a different country.
But it did contain the memory
of his ringing one birthday
because as he said, correctly,
I would prefer a phone call to a present.
It also contained
the anguished-ridden calls
as his health leeched out of him.
When, after his death, the house
was up for sale,
I had no choice but to buy it.
How could I leave a house
where I had last heard his living voice?

Saturday, September 18, 2010

Euridyce

The story is indubitably one-sided:
look up Euridyce
and you’ll be directed to Orpheus.
That’s the problem of marrying
a famous musician, who charmed
people, animals, birds, fish,
set stones and trees dancing
and stilled the punishments of hell.

We know very little about Euridyce,
so let’s shift our point of view:
she was still-born,
her near-life experience mirrors
near-death experiences:
groping through darkness
towards a threshold
beyond which there is light,
warmth and brightness
only, at the last, to be drawn back
into blackness and delusion.

Life and death are not opposites;
it is birth that opposes death.
Birth and death
book-end our life’s story;
we call one a miracle
the other a travesty.
We do not mind not knowing
where we’ve come from
but we dread not knowing
where we are going.
It would be better if like Janus
we could face both directions
with equal grace.

Thursday, September 9, 2010

Stolen

It must be the most consummate
burglar of them all.
At the beginning, the thefts were basic;
walking, dressing myself,
turning over in bed.
But later, it removed my ability
to feed myself, to sing in a choir
and play the piano.
It seems the thieving is systematic;
when I spasm, I either go rigid
like a corpse or curl into a fetal ball;
my very beginning
and my very end are intact;
it’s the life in between
that is being dismantled.

Some weeks ago I had friends around
to honour a young man’s death.
Shubert’s “Winterreise” was sung.
The room was full of beauty and pain;
the human need to give comfort
was expressed by my friends
holding one another in close embrace.

Entrenched in my wheelchair,
like an armadillo,
I sat watching.
I could neither give
nor receive comfort.
The M.S had stolen
my human connectedness.
I was left with only words,
but words were not appropriate.
It was a double grieving
and brought with it the fear
that one day, even my words
might be taken away.

Tuesday, August 24, 2010

The outside of enough

My days are all the same:
every morning I have to summon,
against an erosion of spirit, the discipline
to confront the day’s routine.

I inhabit a sombre mood:
a Shostakovitch quartet,
with all four instruments playing
in the lower register of grief.

At the later stages of my life,
In the middle of the dark wood.
My only exit is death,
the cold silence of eternity.




The poem is obviously lying because my days are not all the same. This morning at 4.30am I was woken by a 7.1 earthquake centered about 30 miles from Christchurch and 7.5 miles underground. I live in a wooden house and they are very forgiving to earthquakes. This one happened in the dark but the last one was in daylight and I saw the walls bulge.
This morning in pitch dark I did not feel any movement at all, I just heard the most enormous creaking and in one of the many aftershocks, a shattering of glass which turned out to be two recycled wine glasses. Nothing else was broken and my chimneys remained intact.
What interests me is that I wasn’t in the least frightened. Yesterday evening I was quite caught up with watching the BBC version of Cranford. Between episodes I suddenly returned to the reality of myself. That was fear, a state of utter dereliction. But the earthquake did not phase me and very shortly afterwards there came a succession of neighbours, friends and carers checking me so I didn’t spend time alone in the dark worrying about what damage would greet my eyes at day break.
Christchurch itself has suffered extensively. Power is now mostly on but there will be considerable infrastructure issues with water and sewerage for several days and a massive rebuilding of facades of 19th century shops. It certainly was a big earthquake, but luckily no tsunami and so far no casualties.

Monday, July 26, 2010

Mistaken





I am mortified. I not only have to admit I was wrong, but I have to make this confession on the world wide web. I knew rabbits would not obey the incest law; I did think the shortest day would be a breeding deterrent. But not so.

One and one did not equal three, it equalled five. But Tuzi didn’t stick around very long after he had impregnated his sister. He disappeared back across the road or she packed him off as being no longer necessary. For around four weeks we were fooled, but then one day there was a large quantity of white rabbit fur in the outer enclosure and Teresa thought to investigate the inner hutch. She found a ball of breathing fur which she took, correctly, to be baby rabbits.

We were initially disturbed as, Tuzilina never seemed to be with her offspring, but a google search revealed that baby rabbits do not give off any scent so the mother in the wild keeps her distance in order not to attract predators. As well, rabbits feed only twice a day, early in the morning and early in the evening, it’s the babies’ shared warmth, not any warmth from the mother that keeps them alive. Our ones grew rapidly and within the week were acquiring fur – one white and black like the father, one white and charcoal like the mother and one completely charcoal – by the second week their ears were becoming more and more developed. They emerged from the hutch successively two days apart, so that by the time they were three weeks old, they were all in the inner enclosure and starting to venture into the larger fenced area. At that stage, we were bringing them inside so that I could have a lapful of baby rabbits.

Tuesday, July 13, 2010

The skull at the feast

Apart from his music, I know very little about Brahms:
a handsome youth, with unfulfilled love for
Clara Schumann, and perfect pitch.
There is a story that he was visiting a house;
he remembered the street name
and that the metal door scraper
sounded E flat but had forgotten
the number. A quick foray
up and down the street
settled the problem.
But this story is surely apocryphal:
why was he not arrested
for loitering with intent?
And do all metal door scrapers
play their own individual notes?

Anyway, the final story is true.
Brahms liked to compose
with the skull of Josef Haydn
beside him.
The skull had undergone adventures.
Filched from its grave
by an eager phrenologist,
but scrupulously returned
to Vienna when the phrenologist died,
it had traveled far.
The story may not be apocryphal
but it still leaves questions hanging.
Was Brahms seeking inspiration
or a reminder of his own mortality?
Inspiration – a breathing in;
conspirators need to breathe together
in a small room; they would not shout
their messages of subversion
across a windy moor
where the words might be blown away
and blazoned across the sky.
Inspiration – of the air
but a skull is earthbound,
of the grave. Was Brahms hoping to gain
inspiration from Haydn
to compose a work that would rattle
his reluctant audience
into acknowledging
their own mortality?
Nor does the story tell
what ultimately happened to the skull.
Did it join the body at Esterhazy?
But there had been a fraudulent skull
of an old man placed with Haydn’s body
which would then need to be removed
into the darkness of its own
anonymous grave.

Thank God, I need no skull on my desk.
The best of my poems seem to come from the air,
as if they are writing themselves;
and my illness offers its own
momento mori.

Thursday, July 8, 2010

Life without music

“Life without music would be a mistake.”
- Friedrich Nietzsche

I couldn’t agree more. After lots of fiddle-faddling, I managed to start learning the piano when I was eight (Dad had to stop smoking to pay for the lessons and I had to practise initially on a neighbour’s piano). I started with Step By Step to the Classics, books one to six which introduced me to the company of simple Bach, Haydn, Mozart, Beethoven, Schumann, Scarlatti and they have been my companions ever since.

Some of the music I listen to is 400 years old, Monteverdi’s Vespers or Sch├╝tz’s Christmas Story, music that was written while Shakespeare was writing his plays and Cervantes had just launched Don Quixote out into the world.

I love belonging to a community of people over so many centuries who have listened to and loved and played and sung these works. In Clara and Robert Schumann’s The Marriage Diaries, she mentions his love of the “great B Minor Mass” and especially the “Et crucifixit, Et resurrexit and the Sanctus”. I love sharing such a passion with a great composer.

I have often tried to decide what work I would take on a desert island, but have never managed to agree with myself until I worded it differently. What work is there in the world that I couldn’t bear never to hear again? It’s not necessarily the greatest, but I couldn’t be without the Bach B Minor Mass. I had four to five weeks of joy when I lived in Melbourne and I sang it with a small choir; every rehearsal you could hear the texture of the parts.

Another work which is for me, a close runner up is the Bach St. Matthew Passion. Recently I had been trying to find the right adjective to describe the opening chord. I could hear it in my head and ran through about 20 possible words such as ‘resolute’ or ‘solemn’. The night the doctor had told me of the dire effects I could suffer from a bowel blockage, I played the first C.D of the three C.D set. Two or three notes in, I knew the word I was looking for was ‘foreboding’. This work always makes me weep and at first I wept for myself, but then like all great art it removed me from the particularity of my own pain and fear and made me weep for the world at large. King Lear with its final line exhorting us to: “Speak what we feel, not what we ought to say” would have had the same effect, but this time it was the music: the grandeur of the opening chorus, the disciple’s grief at going to sleep in the Garden of Gethsemane and the wonderful duet plus chorus of “Moon and stars have for grief their light forsaken”.

The weeping was healing, but somehow full of joy. Life without music would be an appalling mistake.

Wednesday, June 30, 2010

The race of life

I have one complaint agast Aesop:
he concentrates on the hare
and the tortoise,
on their differing personalities
but gives no indication
of how long the journey will take.
We do not know how often
the tortoise draws level,
only to find the hare has woken up
and sprinted off once again.

So think of me, lumbering
under that great weight of shell,
towards an elusive finishing line.

Saturday, June 26, 2010

Crying Wolf

This M.S dying is a long process. It’s not meant to be a terminal illness, but, as a consummate thief, it steals to good purpose. Four and a half years ago, my doctor warned me that my intercostals (ribcage) muscles were collapsing which would mean I couldn’t cough and any chest infection would cause pneumonia. He is somewhat amazed as the pneumonia has proved elusive.

However, collapsed muscles bring about another result. They are curving me dramatically and the compression is having a disastrous effect on my digestive processes. So much so, that my doctor informed me last week that the end result could be a blocked bowel.

A couple of years ago, spurred on by a friend, I had reluctantly asked my doctor about a colostomy. Quick as a wink, he had said I wouldn’t survive the operation. So that remedy is out of the question.

Choking is one of the dying options for M.S patients. I have tried it and don’t enjoy it very much. I have also, at the time of the compression fracture, tried a blocked bowel and didn’t enjoy that much either. The last time I had pneumonia was about 70 years ago and I still pulled through despite limited medication in those days. It’s beginning to look as though all options are unlikely or unpleasant.

If any of you have been kind enough to put in a good word to the Almighty to help keep the pneumonia at bay, I would ask you to slacken off a little. My doctor had said that he hoped the chest infection would come before the blocked bowel, so maybe you could have a hand in helping me to it.

All of this looks as if it going to take a long time. Almost 40 years of vegetarianism and yoga and a very good genetic background make it likely that I will live to a ripe old age. In fact, I will probably see most of you out.

Saturday, June 19, 2010

More thoughts

I have been thinking back in order to discover the ways in which the yoga/meditation/mindfulness have benefited my life.

It all starts back in 1985, the 300th anniversary of Bach’s birth and so a year full of music, but otherwise, a devastating year. It started with the M.S coming out of remission and entering the secondary progressive stage where it just dwindles little by little. In April, I was rushed into hospital one evening (I would like to say at midnight, or the wee small hours but actually it was about 9.30pm) with an undiagnosed stomach ulcer. Then, in September Paul started the malignant course of liver failure which led to his death at the end of October.

But it’s the stomach ulcer time I am talking about now. Before they worked out what was really the matter with me, they gave me pethedine which made me float above the pain and revealed to me that pain killers don’t take the pain away; they shift your awareness in relation to the pain, so you perceive it differently and, no doubt, perceive other things in the world differently. I decided that if all it was going to do was make me float above the pain I would use my yoga, meditation, yoga breathing skills to do that myself. At that stage, I didn’t have the massive M.S discomfort/pain that I have to deal with now. M.S is variable and I have been granted the condition of allodynia, which means an indivisible pain that can obviously not be measured. The word is not in my dictionary but I suspect it is the opposite of anodyne: rasping versus smooth and emollient.

What I have to do is a reverse of Brueghel paintings where in the foreground there is, for example, the flailing of St. Anthony and in the background it is tranquil with there is someone skating and someone climbing a tree. I have to do it the opposite way with the turmoil in the background and the tranquility – birds at the feeder, light on the walnut tree, interaction with friends, what ever I am thinking about or reading and the music I am listening to – in the foreground.

This is how I manage not to take M.S pain killers during the day. As I cannot change position at night I do have to give in and take something to help me sleep but during the day my mind is clear and watching, the Buddhist mindfulness put to another use.

Sunday, June 13, 2010

Further meditation thoughts

It’s not meditation that I am mocking, but rather all the ballyhoo that surrounds it. I have been meditating for years and really value its effectiveness.

In 1968, I was in London; there was all the hype about The Beatles and Maharishi. I wanted to start meditating and so I followed the Transcendental Meditation technique and decided to give it a one year shot before taking stock, by which time of course, I was hooked.

I was given a three syllable mantra which, it was suggested, was suitable for the person I was. Despite Paul’s coaxing, I have never shared it with anyone or said it out loud so I cannot vouch for its suitability.

Meditation, it is claimed, is about emptying the mind.

Here are some of my experiences: when I first closed my eyes and started on the mantra, I mostly felt as if I had dived deeply inwards. I have no idea how long this feeling lasted because in that state you have no idea of time. When I returned to the surface, it was as if I was in the middle of a small pool and crowded around the edges were banal housekeeping-type thoughts, like “Did I write balsamic vinegar on the shopping list?” or “Is my library book due back yet?”; soap opera-thoughts: fabrications about what happened yesterday and what will happen tomorrow and whether he meant that when he said it or whether he meant something else and what I should have said back (played over and over again) and why she hadn’t been in touch.

My uninvited guest
chatters endlessly,
constructing fantasies
of rejection and denial
on no more evidence
than an empty mail box
and a silent phone.

Later my extreme M.S sensory discomfort was added to all these thoughts and together they absorbed more and more of the pool until I was standing on dry land once more and the process had to begin again.

Another way meditation worked was that the three syllables would extend so that all I was thinking was, particularly, the final syllable. Despite this rigmarole there were good results. I had always been trying to change my husband for the better, but the meditation changed me, which changed the mix and things between us did improve.

About 18 months after I started meditating, I got involved with Iyengar yoga. Iyengar devotees thought Maharishi looked like a used car salesman and Maharishi followers thought Iyengar yoga was too vigorous so I kept my own counsel. Maharishi had been surprised that, in the West, meditation had produced slower results so he had recommended simple yoga which I had dutifully practised. But, once I started Iyengar yoga I found there was a great difference between putting my head on my knee by bending forward from the shoulder blades and lying along my knee so that I was bending from the hips. (Once, at one Iyengar weekend seminar I could even kiss my ankle bone.) This ability to bend from the hips still stands me in good stead when I need to be brought forward in the wheelchair.

Yoga requires a great deal of watching. Question: how am I standing, with the weight on the ball or on the heel? Have I locked my knees or my elbows enough? Have I dug in between my shoulder blades and relaxed the back of my neck and amoungst “all these multitudinous instructions, don’t forget to breathe”. All these questions had to be answered simultaneously; this led to the practice of what the Buddha mindfulness. Eventually, I was applying the same mindfulness to my meditation and watching the strange performance that went on in my head. Somehow I was outside all the activity, not judging, merely observing. That meant I could never say: “I don’t know what got into me”, because I always did and had to take responsibility for it. Apart from a short spell when I was doing more intensive yoga and not meditating, I have meditated for more than 40 years.

But in September 2008 I suffered a spinal compression fracture and my meditation ground to a halt. I no longer had the initial diving downwards sensation, but I am discovering that I am still practising the mindfulness. As an example, here is what happened one morning: counterpointed on the M.S pain/discomfort there was a monarch caterpillar transforming itself into a J. The room was numinous. At this point a neighbour who suffers from severe brain damage after a bicycle accient turned up. She needed to unload a whole succession of stories about some street kids she had recently encountered. Each of her stories brought associations into my mind from other stories I had heard or from literature particularly Dickens or Dostoevsky. Throughout all this my mind was still registering the light on the walnut tree and the bird feeder. My mind was abuzz. In visual terms, my mind contained innumerable circles with tangents attaching them to still more circles.

In no way could I claim I was emptying my mind. Rather, it would be true to say my mind consisted of layer after layer of activity. So you can see I am not knocking meditation but would you actually say I was achieving meditation?

I know that many schools of thought recommend that we “let go” our emotions as they are the cause of mental pain. I always feel such techniques border too closely on denial or suppression. I prefer to go deeply into an emotion so I can transform it. My way of meditating helps me to achieve this.

Wednesday, June 2, 2010

Meditation

If a succession of full stops
constitutes a straight line,
then I am meditating.
But the function of the mind is to think.
Concept formation is important
for the human race. I have watched
a toddler who had learnt that an animal
with four legs and a tail was a dog,
greet my cat with a triumphant
woof woof. I have known of an old woman
whose concepts were unraveling
present milk tokens at the shop
and placed them in her teapot.
Despite this, we believe that an empty mind
furthers our spiritual development.
We focus on our breathing, a mantra
or a candle flame. I have tried
listening to a familiar
and well loved piece of music:
the Kyrie from the B Minor Mass
but do not succeed.
The empty part of my mind is squeezed
by thoughts such as: ‘ I am not thinking’,
or taxonomic statements like
‘ this is a wax eye’, ‘a green finch’,
‘I have cold feet’, ‘I need a drink’.
My illness requires me to concentrate
on the smallest action or I cannot do it.
I concentrate only in snippets;
I meditate staccato.

Saturday, May 29, 2010

Disappearing

There is no escaping.
As I grow older, the landscape
of my friends is flattening out.
Where there used to be a small hill,
a stand of trees, a distant cathedral spire
there is now no definition.
Or, to change the metaphor;
on a rocky out crop, I watch
as, little by little, the waves encroach
until, in the end,
the ocean engulfs me.


Now, didn’t I do well?
I talked about flattening,
loss of definition,
disappearance.
I invited you to imagine an artist
painting from different vantage points.
You neither cringed
nor turned your head away.
I never once mentioned the word “death”.

Friday, May 21, 2010

Hopefully

Recently a friend asked me what I felt about my own dying.

I fluctuate between three responses to the idea of my own dying and death: fear, acceptance, hope. Several of my poems deal with the threshold between acceptance and hope, but I know many people are allergic to poetry so I will risk repeating myself.

The fear relates more to the dying than to the death and it relates more to the effect of the multiple sclerosis. Because I cannot turn over at night, I have to take a pill to get to sleep which doesn’t work gradually. Rather, I am lying there fully awake and then I am still fully awake but it is morning and in the missing bit I must have fallen asleep. I have become anxious that I will stay awake all night. So I lie there, virtually in rigor-mortis; sometimes my legs feel as if I’ve been standing in a glacial lake; it is pitch black and I am waiting. On the worst night of all I felt as if I was already dead: ram-rod stiff, bitterly cold, it was dark with an eternity of waiting. It was only the cat’s warmth against my shoulder that reassured me that I was still alive.

Even after the bad night, the fear had diminished in daylight, but I still live with its residue.

My usual state is acceptance. I have no trouble with the physical body being mulched into the earth and coming up next spring as grass, explored by birds and insects; the minerals and salts of my body becoming part of the world as long as our planet exists.
This idea of the cycle of existence has been very much part of belief systems for centuries. For me, it was Loren Eiseley who pointed out that Christianity changed our thinking by introducing a linear perspective. There is a beginning, a middle and an end. A human life is the middle and we know nothing definite about the beginning or the end. Shakespeare describes it as “undiscovered country” which still suggests co-ordinates of place and time. We have no language to describe the unknown and have to resort to the familiar.


All the great religions have attempted, with varying degrees of success, to find words to describe this unfamiliar experience for which we have no words, the experience that our human life is but the middle and that the beginning and the end go on for ever.
I have experienced moments when time has seemed to stop, or there has been another dimension of light, or that I am so much in the present moment however mundane the activity I am engaged in, that I am fully focused. These moments of awareness are not something which I do myself; they always feel like gifts.
From my own experiences and what I have read about other peoples’ I have glimpses that this life is not all there is. The acceptance is always with me, occasionally darkened by fear and, more often brightened by hope.

The Unknown

In the days when the earth was flat
was it considered limitless
infinity backwards and forwards?
Or did the sailor set out
into the unknown
unsure whether he would arrive
at an ultimate boundary?

As I approach my final years,
I am facing the same ambiguity:
where is my beginning, where is my end?
My ancestral beginning
is lost in the mists of time.
Of my caesarean birth
I have only a fictionalised account;
my mother's pain
and my own outrage
at the abrupt eviction
have been edited out.

As for my ending:
like the sailor venturing
into the unknown, I do not know
whether I will achieve a landfall.

Monday, May 3, 2010

1 + 1 = 3

In January 2009 I acquired a rabbit. I am the year of the rabbit so I called himby the Chinese word for a rabbit: Tuzi, the first syllable pronounced like the whoo of tu-whit-a-whoo, the 'z' pronounced as if tz and the 'i' becomes a mute e. Initially Tuzi was contained in a smallish hutch but more recently, in a larger wire enclosure. A few weeks ago, he discovered that with judicious digging or biting through wire, he could escape back over the road to where he came from. My neighbour has several other rabbits. After a week where Tuzi was getting out twice a day and then again the following morning, I enquired at a pet shop and was told rabbits like soft toys for company so I dutifully bought him a soft green dinosaur which he had the good taste to ignore. So my neighbour bought over one of his rabbits to keep mine company. I have called her Tuzilina.

When Tuzi wasn’t escaping he was mooching rather a lot, so I was expecting to have twice the mooching. Instead, there is a great deal of rabbit activity now that he has his sister for company. He has heard that people breed like rabbits so he wants to too, but at the moment, he is not humping her, just chasing her energetically. So I have discovered that one rabbit energy plus another rabbit energy does not equal two; they equal three.

The world of mathematics has been turned upside down.

Post Script

This is in the nature of a post script; the last two journal entries came about because of my feelings after my friends’ son died. I chose to talk about my grief for Paul but could also have dwelt upon the daily attrition which comes from living with a consummate burglar, multiple sclerosis.

I wanted to share my belief that grief belongs with other inexpressible human feelings, feelings that require us to use an ‘as if’. I have to say: “I ring with joy” when I enter a great cathedral. In the same way my poem stated that I was hurled, winded on to the beach. Both experiences require metaphor.

So here is another metaphor: A life full of grief need not be stunted or maimed. I have a very tall garden where almost all the trees compete upwards for the sunlight. But one of my trees, unexpectedly called a smoke bush, has chosen a different journey. The trunk is only about 20 feet high and from it extend at a 45° angle to east, north and west, branches that are 20 - 40 feet long. At this time of year, the tree is turning dramatically, so along these extended braches there are red-gold, orange, yellow and green leaves. The area of colour is greater than if the branches had gone upwards.
So, in a life that contains the poignancy of grief, the growth may still be dazzling.

Tuesday, April 27, 2010

Metanoia

In my most recent journal entry, I talked about happiness, which obviously suggests unhappiness. But that is not the right category when someone has just lost a beloved child. That category is desolation/anguish/misery as opposed to joy/elation/euphoria.

Desolation/anguish/misery all relate to loss and therefore grief. In the months after Paul’s death I found that on those occasions when I honoured the grief – thinking, feeling, remembering – I felt close to Paul. But on those other occasions when I allowed myself to be distracted by busyness, Paul was fading away from me like the shade of Eurydice. Despite the pain of the grieving I needed to persevere if I wanted to feel close to him. As a result of the thinking, feeling, remembering, I talked a great deal about him. At first my friends looked taken aback, not to say embarrassed, but they got used to it over time. I had lost Paul’s future. I didn’t want to have also lost his past. This has meant that friends and carers can speak of him as a real person in the same way that I can speak about their loved ones even though I haven’t met them.

There is a strange element in grief. Just as tears and laughter may be close together, so grief and joy may also be connected. Once, in tears I was walking in the rain through bush at Lake Brunner. I had no need to wipe the tears as the rain was adding to them copiously. I stopped for a moment, looked up at a punga (tree fern) against the sky and suddenly I was flooded with joy. It was like a see saw; the misery had completely gone. I believe this experience of a total reversal of mood is called metanoia.

Grief has a strange poignancy; it heightens contrasts, black becomes blacker and white becomes whiter. Both grief and joy may serve the same purpose: they enlarge the ego, pushing it beyond its limited boundaries. It’s easy to see how joy can achieve this, but harder to understand the paradox that grief can also function this way. Somehow grief that has been honoured, relativises us. We are bought face to face with our microscopic insignificance as part of a crowded world in a vast, ancient universe. Paradoxically this may act as an enlargement.

I am forced to resort to the language of mysticism:
to be full, we must first have been empty:
to be free, we must first have been imprisoned:
to be chaste, we must first have been ravished:
to be light, we must first have been dark.

Obviously words are inadequate purveyors of such truth so I will resort to those of a great poet, T.S. Eliot:
“a condition of complete simplicity,
costing no less than everything.”

Wednesday, April 21, 2010

Storm-tossed

Where does it come from,
this yearning we all have,
for halcyon days,
this dogged denial
that life is an ocean where,
at any moment, unplanned
and unprepared for, a wave
may dash us gasping
on the shore?
Rather than outrage
at our being singled out,
undeserving, we need
to feel grateful for the mercy
of calm weather.




The son of friends’ has just died and remembering how I felt beached with grief after Paul’s death, my heart has gone out to them. But then I thought about the surviving families of the earthquake victims from Tibetan China, Haiti and Chile and I wondered whether we in the West have not acquired a wrong expectation that our life is supposed to be happy. Maybe when people are struggling for survival, all they can do is hope for happiness: they have no expectation, but can merely bless the days of happiness that come their way.

Friday, April 16, 2010

‘Exotic’

This morning I spent two exotic hours in my garden. The word ‘exotic’ to me means rare, unusual, and brings with it all the hot spicy atmosphere of the Orient. I come from the bottom of the southern hemisphere; maybe New Zealand appears exotic for people in the Middle East.

I have always had trouble with ‘exotic’ when it means ‘coming from another country’ but when I looked it up in the Oxford Dictionary, the first meaning offered was ‘introduced’ and the second was ‘rare and unusual’. So what I had thought was a colonial obeisance to political correctness turns out to be good English usage.

Therefore, the familiar birds of my childhood – blackbird, starling, thrush, sparrow – are all exotic. Geraniums red, delphiniums blue, chrysanthemums yellow and white, and ‘a rose by any other name’ are all exotic. Fruit trees, oak “planted in defiance/of evergreen bush and a bell bird’s song” silver birch, poplar, elm, plane, willow and the nearly 60 year old walnut tree in my garden are all exotic.

Apparently, exotic means introduced by human agency, as the welcome sparrow, which has flown quite easily across the Tasman, is regarded as a native, as is the wax eye which appeared in the 1850’s and is called ‘stranger’ by the Maori. But the wax eye is a very small bird with a swooping tree to tree flight and it is difficult to imagine it could have flown such a distance. If it had hitch-hiked on a sailing ship for a journey of several weeks it still would have required apple, sweetened bread, dripping, alias lard or suet, or aphids. There would have needed to be enough birds to create a viable colony, so I have always suspected some anonymous human to have bought the wax eye across the Tasman.

The word 'exotic' when applied to these introduced brids and trees always sounds pejorative, but how long do you have to live in a country before you belong?

Now before I tell you about my exotic hours in the garden, I need to fill you in about Christchurch weather. Christchurch is built on a swamp which means that I am probably a cathedral depth below sea level, as sea level is the top of the Anglican cathedral spire: It is bordered by the Pacific Ocean, nestles against a great volcanic bump called Banks Peninsula (named after the naturalist on Captain Cook’s ship) and some 50 miles away from the foothills of the Southern Alps of which the highest mountain, Mt. Cook, is a little higher than two fifths of Mt. Everest. The Alps may be much lower, but they are still rugged and avalanche prone. All these conditions make Christchurch weather inconstant and changeable.

On the day in question we had just recovered from a week when the temperature had plummeted from 26° to 16° to 14° to 12° and when it was at the lower temperatures it was grey and blusterous. On the exotic morning it was mostly clear with scudding clouds; I found it a great relief to be outside and to listen to the ground swell of ‘exotic’ birds – sparrow, hedge sparrow, finch, blackbird – all the birds, also, were glad at the relief from cabin fever.

Then I had the first of my three ‘exotic’ visitors; they are native to New Zealand, occasional visitors in the autumn and always a delight.

First it was a bellbird right in my garden; it did not just give one or two peals but a complete chime of bells, a sequence of five ringing notes. The bellbird rang on and off for about ten minutes and was followed by a fantail, the most regular autumn visitor, almost regular enough not to be exotic. Fantails are insect eaters and immensely coquettish. They seem both fearless and friendly but actually I constitute an insect magnet having either disturbed or attracted the insect around me. They chatter excitedly between each mouthful. So even if I can not see them pirouette, I know a fantail is there.

The last of my exotic visitors was a grey warbler, a little grey bird, sparrow shaped but much smaller, with a trill of piercing sweetness. The volcanic bump, Banks Peninsula, must have originally been an island because it has different flora and fauna. I am most familiar with the Banks Peninsula grey warbler with its three descending semi tone trills. But the one on my special morning was either a visitor from some where else in New Zealand, a mutant or a young one rehearsing its song. It sang and sang.

Once I was fortunate enough to watch a grey warbler sing. It's whole body vibrated with the intensity of the song and I knew without a shadow of doubt that the whole world, at that moment, depended for it's existence of that song, you, me, and the rest of the teeming billions. From then on I can never hear a grey warbler without grateful acknowledgement the world is underpinned by some such moments, a bird's song, spider web, or act of generousity.

So who's going to tell me that I did not have exotic visitors on that bright clear morning.

Thursday, April 1, 2010

Pathetic Fallacy

Today, if nature had been truly
sympathetic, there would have been
a driven storm and blinding rain.
Instead, there was blue sky, not much wind
and a tinnitus of crickets.
I was consumed by self-pity,
a great perverter of reality,
an egocentric wallowing,
no room for beauty.

Fortunately I stayed outside,
and little by little, the integrity of trees
erased the word self. “Oh the pity of it!”
allows compassion, welcomes beauty.
The trees had done it again,
I was healed.

*****************

I am living dangerously,
pursued by a runaway poem
which tells glaring lies.
Sure, I berated the pathetic
fallacy for being pathetic
but tree-centric as my garden is,
in the end it wasn’t the trees
themselves that made me feel better,
it was my writing a poem
about the trees making me feel better
that made me feel better.

The poem was sophisticated,
quotes Shakespeare, knows the difference
between coherence and correspondence,
is well versed in Romantic twaddle
about man and nature, but unwilling
to go out on a limb
about woman and nature.

This is a sorry case of an unreliable
narrator, but please remember
it is the poem who is the narrator.
You are faced with a choice:
which poem to beleive.

Thursday, March 25, 2010

Wistfulness of memory

Today, a new Monteverdi;
as the Magnificat rings out
I am transported back forty years.
Young and full of hope
window-sill perched, delighting
in crooked brick walls, London plane trees
and narrow gardens
I am not for a moment aware
of the stifling shadow
when, bereft of my son,
I dwindle towards my death.


The music, triumphant in its own right
with its celebratory trumpets,
and antiphonal choirs,
containing now
this double reality—
the ever-hopefulness of youth,
the diminishment of age—
has acquired a wistfulness,
an echo that will remain
until my end of time.

Tuesday, March 16, 2010

“How all occasions do inform against me.”

“How all occasions do inform against me.” The above quote from Hamlet shows how relevant Shakespeare can be but I am sure he wasn’t imagining how slight the occasion might need to be.

A week or so ago one of my computer friendly young carers posted a journal/blog about my doctor's use of metaphors to describe my condition. By focusing on the metaphors I now think I was trying to distract people from what the words actually meant. But I had not allowed for one of my ex carers/friends who has now moved to Melbourne and who, as a fine arts student, had inevitably retained a strong visual, kinesthetic image of me. She ignored the metaphors and posted a comment in response to what the doctor really meant. My first reaction was such a comment was private and needed to be removed from the blog. But then the other reactions set in and I discovered that I need to consider 1. My way of presenting my self and my illness and
2. My attitude toward the internet. These considerations will meander “with a mazy motion” but will make sense in the very end.

When I was a small child, we lived for five years next door to my aunt in a flat that was part of my grandparents’ house. My mother was frail: probably a saucer hip socket undetected in 1903 had brought on osteoarthritis, lack of exercise had lead to drastic varicose vein problems which necessitated two operations and as well she had an irritable bowel. My brother was born in 1934 and Mother was told that if she was careful she could risk another child 5 years later, which was me. Caesarian births in those days didn’t bother about bikini lines, but were a wholesale cutting open and I think that probably for my mother, the second birth was touch and go.

Taking responsibility

As I grew up I internalised a constant adult injunction from my father, aunt and grandparents, “look after your mother”. Later difficulties and the having a child meant that taking responsibility for other people was firmly entrenched in me and manifests itself now in how I present my illness. I feel the need to protect people against the harshness of reality, submerge myself in black humour and other forms of verbal irony rather than speak out about how it really is. I act this part so well, I even convince myself. So, on those days when self-pity gets hold of me and I feel grumpy that my friends don’t seem to understand, I am forgetting to remind myself that I don’t seem to understand either.

My objections to the comment about my living on the knife edge reveal to me that 1. I had not sufficiently protected Monique (as she put me to bed two or three times a week for nearly two years, it shows how stupid I am for trying to protect her as she was only too aware of my fragility and muscle weight loss) and 2. That I am actually a lot worse than I think I am. My doctor is a very good listener which has the effect of my hearing what I have just said, so after one of his visits I briefly have to take my condition more seriously.

Internet and privacy

My attitude towards the internet is somewhat more complicated as like other people of my generation, I feel it invades my privacy and yet here I am using it. So I’ve done all sorts of thinking and this is where I go meandering: if I had lived in a nineteenth century village everyone would have known my grandparents and my grandchildren, when I had my breakfast and probably what I actually had for breakfast. There would have been no privacy.

In 1940’s, Christchurch, New Zealand, living in the family situation I described above and with another aunt and uncle a 5 minute walk away and the second grandfather 10 minutes walk away there was still very strongly a sense of place. I was located within a family and there would have been little privacy.

When we went to London, we lived in a long street with four to five storey terraced houses, each floor one separate flat. Very few people had cars and so we encountered one another on the street all the time. Three years after living there I had to take to my bed for six weeks with my first M.S assault and my splendid milkman would bring the milk in every day and put it in the refrigerator. London had a village feel about it, and I didn’t mind the loss of local privacy even while I loved the anonymity of London as a whole.

Now back in New Zealand the single storey, one family houses are set back from the road with fences, trees or shrubs and nearly every one has a car. There are very few street encounters. As well, the population has greatly increased and there is upward mobility. For the forty years my brother lived after he was married, we were in the same city only for nine months.

Add to that the changes in transport: no longer sailing ships which took three months or the five week sea journey we undertook to get to London, but an approximately 36 hour air trip. Mail, instead of, at the best, a 6 month round trip now, with email, is virtually instantaneous. We rang New Zealand from London once in over nine years: it was expensive and we had to speak so loudly it was as if we were shouting the distance. Now there is Skype and text messages. Instead of place, what is important is time. A friends’ daughter in Sydney looking at a rainbow receiving a text from a Melbourne friend who was also looking at a rainbow. Instead of a village or extended family, we have a global family and in my case there won’t be that many people surfing the internet to discover a website with the key words, multiple sclerosis and death. Monique’s comment on my website showed the generation difference. She is a third of my age and had no trouble at all writing what she did on the net. My removing of her comment was high handed, but at least revealed to me in Shakespearian ways, why I initially objected to it. I was moved and felt this should be a private emotion, but in a village it would have been public property.

The inner significance of each one of us is increasingly threatened by changes in life style, the population explosion and new knowledge of the age and extent of the universe. There are enough galaxies out there for each of the billions of us to have five apiece and then there would be some over. We are no more important in the scheme of things than a leaf from last season’s walnut tree. For those of us lucky to have computers, our access to the internet is able to fill some of the empty spaces created by this insignificance.

All this, from one comment on a website.

Wednesday, March 3, 2010

Words and their meaning

People are feckless with words. They toss them over their shoulders as casually as they would a cigarette butt. I, on the other hand, am a word scavenger. I collect them, polish them into brightness, display them, gloat over them.

So when my doctor some 20 years ago described me as living on the edge, I immediately came up with images. I was teetering in the wind on a high cliff. Below me I could hear the roar of the sea but I didn’t dare look down. I could only hope there would be some outcrop of rock that would break my fall. Or, I hoped that, like the blind Gloucester, in King Lear, I would fall over the edge only to land in a meadow with exclamations of wonder that I had fallen so far, floating like thistle down, and yet had sustained no injury.

But on his most recent visit, the doctor said I was on a knife edge. Now that’s a much more violent image. I’ve had no training or experience in tight rope walking. Who, anyway, would venture out on a knife edge, unless she was trying to escape something horrible. In which case, there would be no point in turning around and going back. I would be like a toddler just learning to walk who lacked the necessary balance to turn round. So I would have to go on, but how far and what would be my destination? M.S never gets any better; my point of arrival might well be worse than my point of departure.

My doctor had hoped it would be quick, my being on the knife edge, I assume he meant. So did he want me to fall off and to fall off on to what? Would there be a safety net? Or would there be Gloucester’s meadow? Or did he just want the journey to be short and was kidding himself that at the end of it I would have reached the Elysian fields? More likely I would fall across the knife and whether it was sharp or not, it would cut me. I think I had better opt for Gloucester’s meadow, and his sad recognition.

“I have no way, and therefore want no eyes;
I stumbled when I saw.”

Friday, February 26, 2010

Poetry as Fiction

Lately, I’ve been feeling like Josef Grand in Camus’ The Plague who spends an interminable amount of time rewriting the same sentence about the beautiful horsewoman riding through the Bois du Boulogne on a May morning, or was it riding on a May morning through the Bois du Boulogne.

I have been trying for days to catch a particular feeling in a haiku. Below are two versions I have come up with.

The cry of sea gulls
and I am a child again
in holiday mood.

Sixty years later –
the cry of sea gulls recalls
summer holidays.

The problem is that neither of these captures exactly what I am looking for. When I was a child my grandfather owned a bach (New Zealand equivalent of primitive cottage) with rain water, no hot water system and an outside dunny that had to be emptied. If, when I hear the sound of sea gulls I close my eyes, I am on my way to that summer bach. The train from Christchurch has just arrived at Lyttelton, I am on the wharf smelling salt and diesel, about to step on to the launch which is going to chug the 15 – 20 minutes across the harbour. Every time I hear sea gulls crying I have that memory but I can find no way, in a three line poem, to indicate that one moment can be repeated again and again.

One of my friends finds it difficult to compress an idea or feeling into a three line haiku because she needs a “Once upon a time…”. My poem about the sea gulls also requires a “Once upon a time…”.

And this next one is no better.

sitting desolate
in an autumnal garden –
then a grey warbler

The only way I can indicate the wonderful lifting of mood I experience when I hear a grey warbler is to suggest that I was desolate first. But I can feel as happy as Larry and then be immensely elated by the sound of a grey warbler. Again, when I hear one, I am running down the track to the beach past the high grass with the smell of dry hay and broom seeds popping, round the corner and under the cool of the pine trees, over the stile, and down the root-sculpted path. So once more the poem tells only half of the story and not even the right half.

Thus it can be seen that all poetry is fiction.

Tuesday, February 16, 2010

Haiku Moments

the dark midnight hour
my body rigid and cold
the cat snuggles closer

no good harping on and on
I’m alive not dead
let’s talk about the light

as the sea mist rolls in
I trace out the shape of my life –
the cat inscrutably sleeps

a life in waiting –
Michelangelo’s slave
straining out of the stone

I pause at the threshold
which direction shall I look?
back to the past or onwards

late afternoon
light on the walnut tree -
the balm of living

criss-crossing water
morning barge passes
soon pure reflection

looking up from book
music peach blossom seagulls –
the whole world stands still

Saturday, February 6, 2010

Ramshackle

Straight-lined people repudiate
vigorously the world of curved-liners.
With set-square and ruler
they seek to measure and quantify;
trying to show, once and for all,
the inherent geometry of things.
Straight-liners see patterns
in a succession of items,
while curved-liners
see a pattern in the whole,
loving the curl of a wave,
the arch of sky, the flickering
brightness of flame, preferring
a wilderness of garden
to the statutory distance
between plants, a subtlety of hue
to primary colours;
never minimalists,
they want to be absorbed
into a polyphony of sound.

This poem appeared after one of my new carers got me safely out of bed one morning, but as she left put in the mailbox her letter of resignation, which took effect from the very moment I received it. The poem constitutes my efforts to understand that she found the job lacking in structure. After all, working for me cannot be a regimented activity when there must be space for the unexpected visit of a friend with a boisterous three year old grandson or a missing rabbit.
Her replacement carer wishes to bring her horse to graze on my overgrown lawn. I feel confident she will be suitably curve-lined.

Saturday, January 30, 2010

From a comfortable middle-class armchair

It’s all very well being able to focus on birdsong when the rawness of my grief has settled into painful scar tissue and when I live in the tree enclosed security of a New Zealand garden but it would be crass beyond belief to suggest birdsong or sunrise to a survivor of a Haitian earthquake who had just witnessed the lingering death of family and neighbours. 85% of the population of Haiti were already below the poverty line and are now living with no guarantee of food, shelter, warmth or as one BBC announcer put it, comfort.

We can turn to the writings of the poets, for example, from Macbeth: “Come what, come may:/time and the hour runs through the roughest day” or Gerard Manley Hopkins’ “Comfort that serves in a whirlwind:/each live death does end, and each day dies with sleep.” But these are only on the surface of comfort; all they are telling us is that life continues, not that tomorrow will be better. Paul’s death was hideous, but the very worst was waking the next morning and knowing he was dead. It’s the scale of the disaster that appalls us.

200,000 deaths are strictly speaking, no worse than one death repeated 200,000 times within a few months, the deaths arouse in us compassion, and I trust, no suggestion of prurience and maybe: “There but for the grace of God go I”, which appears just to be saying that I am fortunate and other people are so unfortunate (an elderly woman said that to me several times until I asked what it was saying about me and the grace of God). But if you unpick the saying completely, it is implying that God’s grace is on the side of some of the inhabitants of the world and not on the side of the others, an echo of the nineteenth century belief that if you were wealthy, it proved you were in God’s favour.

In the end it is probably the fact that we are so totally out of control that shocks us, that the world we live in is not gracious and generous towards us. Instead, we are at its mercy.

Monday, January 25, 2010

And the birds sing

It was suggested to me recently that blog was an elision of blurb log. While I was mulling this over, another friend told me authoritatively that it was web log.

The internet obviously extends everywhere and catches people and objects. A web is more aesthetically pleasing but has sticky fronds. It reminds me of: “‘Will you walk into my parlour’ said the spider to the fly.”

When you come into my parlour, there will be no small talk but there will be lots of stories:
A friend’s very young grandson neglected to say thank you. His mother asked: “What do you say?” To which came the enthusiastic reply: “Amen.”

My recent piano tuner plays the cello. About three times a year the state of the world, either his own world or the world at large, requires of him that he go out into the streets and play. Most recently he attracted a young man who happened to have a violin in his backpack. The two of them played to an appreciative audience for some two hours and people bought them cups of hot chocolate.
A friend recently visited with her daughter, who last week was a baby and now is a toddler. Three steps and plonk, unless her mother was at the end of the plonk, where she took five steps. Her greatest delight was to hold her mother’s fingers and run at full tilt across the carpet.

Another friend brought a matchstick sized goldfinch she had rescued from the road. She sat there patiently scooping canary soft food into an ever hungry mouth.

I notice all my stories are on the positive side. I am not mentioning my concern at the sluggishness of my peristaltic activity nor that yet again, and I mean yet again, mucus has blocked my catheter, which necessitates that it be removed and another one inserted.
Am I failing to mention these details out of maidenly (at nearly 71) modesty? Or because of a life long habit of protecting people and taking responsibility (“Human kind cannot bear very much reality”) or because news these days has to be immediate and sensational and repeated problems are neither immediate or sensational.

There are two intractable facts: Paul has now been dead longer than he was ever alive and I have now been battling through the secondary progressive stage of multiple sclerosis for nearly 25 years. Years ago, I wrote of grief:
“It is a life lived continuously
in a minor key,
a lingering bass note
endlessly sustained.
On this minor bass note (timpani, trombone, double bass) I have to counterpoint a musical structure from the higher register (woodwind, baroque trumpet and the upper strings). Some days I manage very well, especially if it’s sunny and I have sat out under my cherry tree: others, I manage only a short piccolo note.

Recently I wrote a poem:
“Sleeping or waking,
the nightmare remains:
yet a sparrow is busily
feeding her young
and a blackbird is singing.”


Somewhere, anywhere, at any time,
a person is being born.
Somewhere, anywhere, at any time,
a person is dying.
The birds sing.

When you visit me, I will try to concentrate on the singing birds.

Do come again; there will be no cucumber sandwiches nor bone china for the cups of tea. But there will be talk.

Monday, January 11, 2010

Piano

If Yeats could opt for a tower as a symbol
I have chosen my grandmother's piano.
More than a century old,
it has a decayed elegance,
pitched a semi-tone
below a concert grand.
Its mellow romantic timbre
would have suited Chopin
or Tchaikovsky and not the Bach
and Haydn I imposed upon it.
The upper and lower registers ring
but the middle octaves twang dismally.

Similarly, I am battered,
subdued and of a long gone style.
I resonate to the extremes
of joy and sorrow
but am out of tune
for the commonplace and banal.

The tuner is coming tomorrow.
I cannot speak for the piano
but hold out no hopes
that i will change for the better.

Beyond Recognition

If the observer alters
what is observed,
my coterie of carers
who never take their eyes off me
have changed me
out of all recognition.

I am lost in the outskirts of a maze.
Unlike Theseus who required a thread
so he could retrace his safe steps
to the outside world,
the outside world has dispersed me
so without a thread to guide me
I will never return
to the centre of my being.

Saturday, January 9, 2010

Rigmarole

The M.S doesn’t just steal movement and activities associated with movement, it interrupts other aspects of life: perception of time, language, private space/boundaries. There will be other illnesses that do exactly the same thing, but multiple sclerosis is the one I know about.

Perception of Time

My days are full of regular routines. I do the same thing, in the same way, in the same order, and probably the same time of day, every single day. The rigmarole I have to face before I go to bed this evening makes tomorrow seem a long way off. The rigmarole I have already endured today makes yesterday even further away. If I contacted you four to six weeks ago and you haven’t replied, it feels as if you have been silent for months even though in your busy life with family, holidays, travel and other occupations, very little time has passed. By now, I am at least 150 years old and when people suggest I might live another two or three, they are dooming me to another few centuries.

Language

In recent years I have been learning the dialect of disability. Unlike sign language, it does not have its own grammar and syntax, nor a particular pronunciation. Rather, it stretches the words of the mother tongue.

Thus, I say: “I stand up and walk across the room.” Now if walking means being upright and travelling from A to B, then yes, I walked. But if walking requires lifting one foot off the floor and bringing it forward, I did not walk. I stood up, turned around and slid backwards.

Then again, when you say you have cleaned your teeth, presumably, you mean you moved your arm so that the toothbrush traveled backwards and forwards against your teeth. What I mean is, that once the toothbrush is prepared and I have it in my mouth, I turn my head from side to side, so I move my teeth backwards and forwards across the toothbrush. This does produce the same effect but the words mean different things.

A friend who has to listen to talking books says she reads. I say I walk and I clean my teeth. We are using language out of habit and to be economical. To do otherwise would be pedantic.

The problem can also go the other way. I have said to a new carer: “If you go on doing it this way, you will make me spasm.” She retorts that she is not trying to make me spasm. In order to remove any suggestion of intentionality, I have to rephrase my remark: “Doing it this way will cause a spasm.” Spasms are vicious, like electric shocks and it is difficult to believe that my own body has become so inimical to me. Initially to my shame I was accusing my carers: “What did you do that for?” When I managed to hear what I was saying I could at least apologise. Spasms are an issue therefore, both for my use of language and the way the language is received.

Boundaries and Personal Space

My physical boundaries have been completely invaded. When I cannot dress myself, it would be foolish of me to complain about being dressed. But what I do complain about is people treading on my clothes, wiping sticky fingers on my face towel or touching the nozzle of my drink bottle. These seem legitimate causes of complaint. But lately I have noticed I am also protesting about the way people are removing my very fine hair from my eyes. My physical boundaries have obviously become even more sensitive.

But if they are sensitive, they are nothing in comparison with my psychological boundaries.
Because I am so encroached upon physically, my psychological boundaries go right to the edge of my tree-enclosed property. When you enter the gate, you enter my personal space. You are not given the chance to negotiate where in the room to position you chair so that you can maintain a certain individual distance. You are already trespassing.

To make it harder for you, there is also my much more conspicuous fragility. I have lost so much weight, it is harder to ignore. You have to decide whether to mention the weight loss or ignore it: if you ignore it, you have to decide what to do if I mention it. Are you willing to engage in a difficult conversation or do you think what is required of you is to cheer me up and distract me?

And to make matters worse, I write poetry. Poetry is condensed and cryptic and what is worse, it may well deal with personal feelings. It is a decidedly anti-social activity, which some people may prefer to ignore.

And then again, my hand, like Lear’s, “smells of mortality”. I am so compressed my oxygen intake is limited and so I have to live constantly with the knowledge that my own death could be imminent. As most of my friends are elderly, they also are facing their own mortality but may prefer not to dwell on it. But as another one of my traits is that I am very direct, you may find yourself partaking of a conversation which discusses what sandwich fillings are suitable for a funeral feast, or even whether it is appropriate to cut the crusts off the same sandwiches.

So when you come in the gate, even before you have rounded the flax, it is required of you that you take up a position relative to my directness, mortality, fragility and extended personal space. It is a very great challenge.

Multiple sclerosis has a lot to answer for.

This is all there is

One of my friends has trouble with my ideas about the “peace that passeth all understanding”: She requires a peace that relates more practically to world affairs. So I’ve done some more thinking.

A grief that is honoured, and with the obscenity of Paul’s death and the depredations of multiple sclerosis I know all about grief, such a grief does not leave the mind grey and sludgy. It confers a poignancy, the black is blacker and the white is whiter. In such a state of mind, I sat under my cherry tree.

This is all there is:
far removed
from the world's dereliction,
a bee in a foxglove
persistently exploring
with me, caught in the sunlight,
watching.

The peace that this confers, is a peace that offers certainties, certainties that all questions will be answered; it offers connectedness – that I am connected to all living things and am therefore in my right place – a peace that cannot be explained.

If I am “far removed from the world’s dereliction,” I am also removed from the world’s cruelty and greed. So this spiritual state, however tenuous, has an ethical dimension. Although this is no more substantial than a glimpse of a monarch butterfly out of the corner of the eye which, when I turn my head is no longer there, it is satisfying to the heart and intuition.

It is the mind that asks the unanswerable questions. Such a state requires time and solitude, both middle-class attributes, which have no part in crowded, bustling, working-class lives. My response to beauty whether the beauty of classical music, great literature or nature, requires me to inhabit a certain world. I live in this tree-enclosed garden because I inherited money; I have the necessary education and exposure to high culture.

This is one caveat, the other is even more telling. What part would such experiences play in a concentration camp or an area devastated by ethnic cleansing or suicide bombs? How solid can a spiritual structure be, when it is erected on such a flimsy foundation? Does that mean my experience is relative only to me and could not apply to a victim of Auschwitz or Baghdad?

The difficulty is that these experiences are accumulative; they are a reason in themselves and create a yearning for more. You only have to read the later poems of Wordsworth to see his grief that such experiences have vanished. I am nearly 71 and rejoice that I can still be so totally absorbed by the sunshine, a bee and a foxglove.

That I am not the only one to feel this way is attested to by the following poem:


"Folk Tale"

By R. S. Thomas

Prayers like gravel
Flung at the sky's
window, hoping to attract
the loved one's
attention. But without
visible plaits to let
down the believer
to climb up.
to what purpose open
that far casement?
I would
have refrained long since
but that peering once
through my locked fingers
I thought that I detected
the movement of a curtain.