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


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


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.


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,

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.