Saturday, December 26, 2009

Difficult Choices

When I returned to Christchurch after Paul’s funeral, I stayed a few days with a friend who had three younger children. But I was too exposed and vulnerable, found being in a family atmosphere intolerably painful.

Gradually, I came to recognise what was the problem and to know that I was faced with a choice. If I decided, then and there, to shut myself off from my friends’ children, and later grandchildren, I was at the same time, amputating myself. Even a temporary shut down would gather momentum and run out of control. Consequently, I needed to grit my inner teeth and endure the pain, then, and even sometimes now, so that my life wouldn’t be abridged out of all recognition. I have been glad since that I made that decision and that friends can talk freely about their children, showing me photographs and more recently, bringing babies to see me. It has been all very poignant but very enriching.

In the same way, I have had to make a decision about Christmas. The first Christmas after Paul’s death, was a nightmare. By the second one, my father had also died. At a small get-together someone brightly wished me a Merry Christmas. My response must have annihilated her: “There are too many ghosts”. Luckily, one of my friends having overheard my comment rang me a couple of days later and said very emphatically: “HAVE A HAPPY CHRISTMAS”.

This gave me food for thought. I could go on separating myself from Christmas in a self-pitying, histrionic way, or I could take part in the general stream of bonhomie and good will. Christmas is about a birth, a beginning. It is about the human need for hope. I was as much in need of hope as anyone else. I bought a crib, a few Christmas decorations (although I have never wanted a tree since Paul died) and each year have given and received presents and cards. I have not made my friends uncomfortable and I have once more been part of Christmas, although it still does hurt. Christmas day is often quite delightful, but no longer feels like Christmas.

Christmas Pastiche

A skull at the feast is all very well
but not at a Christmas barbecue.
For those of us with amputated families
Christmas is a difficult time.
Memories can console only so far.
We are forced to assume
a mask of cheerfulness
as if the black hole at the heart of us
was decorated with fairy lights,
tinsel and multi-coloured baubles.
It's altogether a game of pretend.

Friday, December 18, 2009

Prince of Peace

As a young girl, I was delighted to read that Dean Inge had declared: “Originality does not consist of thinking of something for the first time, it consists of thinking it for yourself.”

Here is my ‘original’ thought.

In the Western world, at this time of year there are numerable performances of the Messiah. I have kept hearing about it as a forthcoming event and my niece has just enjoyed singing it.

In a recent dream, I was looking at a television screen with the last section of T.S. Eliot’s ‘Journey of the Magi’ but there was a gap between the last two lines and the last line was incorrect. I was anxious that people would get the wrong idea and asked a carer to write in the correct line. But what I chose came from the chorus “For unto us a child is born”; the line now read “Everlasting Father, The Prince of Peace.”

What sort of world would there be which contained a Prince of Peace? Before I had even turned six, there had been Auschwitz and Hiroshima. Obviously, there has been no peace in my generation, nor in any generations that has preceded me. Peace is either arrant nonsense or needs to be considered from a different dimension. Belatedly, I remembered “The peace that passeth all understanding” which must be a similar state to the Dao, nothing to do with peace in the Middle East or Northern Ireland.


Another area of life which requires us to think in another dimension is dreams. (For me, dreams contain considerable meaning.) Some years ago, I read a book detailing the dreams of a young woman dying of cancer. Her dreams pushed her to increased self-awareness and furthered her spiritual journey but did not deal with the cancer nor her approaching death.

In the same way, my dreams ignore the multiple sclerosis. They may have me in a wheelchair, stumbling, lurching on elbow crutches, standing or even walking but the dream itself has no connection with my condition. The nearest to a connection has been a dream which pointed out that I was struggling to keep in touch with my feminine side and this flaw in my nature might well be attributed to the responsibility/will power/control required of me by the M.S.

It would appear that the unconscious has no interest in our state of physical health but instead, extends us spiritually. What use is an evolutionary process towards spiritual growth that ends at our death?

Both these instances illustrate a view of the world which is not binary, not this or that. Instead, they emphasise this as well as that. Thus, M.S. is a heinous thief but has given me the gift of time wherein I can cherish my inner life and make contact with my own creativity. Paul’s death is both an obscene fact, but eventually my being forced to acknowledge life’s fragility bought me to an appreciation of the present moment and the belief that I was required to receive the beauty of the world both for me and for Paul. I had to make up for the fact that he wasn’t there any more

Not this or that, but definitely, this and that.

Saturday, December 5, 2009

Living Will

A living will is all right in theory. I don’t want you to intervene to save my life… in five years time, next year, even next month. But how about the day after tomorrow? I had always had a feeling that I would have wanted to retract, but then something happened.

A few weeks ago I had a laryngitic bug which went down into my chest. I don’t often get infections and when I do the M.S. plays up a treat. I say that it doesn’t like not taking centre stage, or to change the metaphor, I have only a limited number of troups and if I have to deploy them elsewhere that leaves my flank exposed. My flank was, metaphorically speaking, very exposed on a Saturday and Sunday when I couldn’t get the doctor. The M.S. went through the roof. Normally, I can move my right elbow up a little but then, I could not do that, I could not drive the wheelchair, I could not clean my own teeth. All that I could do, was turn my head to left or right against the headrest. I spent the evenings drifting in and out of a Brother Cadfael DVD.

The next morning, despite the fact that I had a hideous, phlegmy, chesty cough, the M.S. had returned to what it regards as normal. The doctor came in the evening, tested my lungs and found the infection had got down to my trachea but not as far as the lungs. Because of the living will, he asked me what we should do. The M.S. was picking up so I said to him that a carer from seven years back was on her way to New Zealand from England and I didn’t want to die without seeing her, that a dear friend had just had a tragic loss and I didn’t want her to have any more grief at that time, but he said I needed to consider me. But my will to live had been restored and I didn’t want not ever to see again the early evening light painting the upper branches of the walnut tree pink and gold or the white roses at evening coming towards me out of their arch as the greens of the garden merged into two dimensions; I wanted to finish my current book; I had many friends I wanted to connect with again. If he had asked me on the Sunday I would not have spared a thought for the walnut tree, roses, book, friends. Nothing mattered and I could have quite willingly slipped into death.

I find this astonishingly comforting. When I get pneumonia and I say when, not if, advisedly, given how the compression is restricting my breathing, then the M.S. will reduce me to such a state of nothingness that I will not mind the dying. I will not be dying with a great urge left towards life. I am immensely reassured.

Saturday, November 28, 2009


A scabrous blot: a labour camp
in the ice of the far north:
inmates deprived of food, warmth,
freedom, hope and joy.
Tomorrow is so unlikely
that the word “tomorrow”
has become synonymous
with for ever.
That is the reality.
But, at night, from a nearby hill
the snow-bound camp is transformed
into a jeweled crown.

This is the paradox:
a crime against humanity
and a tiara of light.

No Reception

Blog is an unfortunate word.
If I said I was updating my journal
I would receive smiles
of interest and approval.
But I am blogging
and it feels as if
I am addressing an empty hall.
I do not require rounds of applause
or even Rite of Spring riots,
just a nod of acknowledgment
to reassure me
that someone in the hall
is listening.

This poem is now out of date as dear Rachel is rechristening my ‘blog’, ‘journal’. It shows the power of poetry. One poetic complaint and the world has changed.

Saturday, November 21, 2009

The Trick is to Consent

Like the dog chained
to the chariot wheel
I have no choice.
It makes no difference
whether I am dragged
claws screaming and scraping,
or whether I trot docilely;
I travel the same distance.
The trick is to consent…

I’m not quoting my own poem because I think it is particularly good although I do think it is one of the best I have written; I’m quoting it because even an image I came up with many years ago can help to lessen a mood of desolation.

The last two months have been emotionally draining: what should have been my sister’s birthday followed two days later by the anniversary of my brother’s death; the anniversary of Paul’s death which now makes him dead longer than he was ever alive; setting up this blog which revealed to me how little of my thoughts and feelings I have been able to communicate since I stoped typing with one finger, the death of my last canary – the canaries in their confined space had always been a spiritual symbol of my own confinement and constraints; a laryngitic infection which started to go down into my chest and set alarm bells ringing which made me realise that the health experts around me – doctor, district nurse, occupational therapist - all share the notion that I am much more frail than I have ever been willing to admit; an occasion which I would have dearly liked to have attended but the multiple sclerosis firmly vetoed.

This brought me to a state where I had even started to admit to others that I was rotten with grief, pain and fear and could see no way out. As well, I was blaming my friends for not realising the desperateness of my condition. I muddled on for several weeks avoiding turning inwards by uncharacteristically watching over and over DVDs of Brother Cadfael and Lord Peter Wimsey. It was only when I allowed myself to half listen to Radio New Zealand Concerts of an evening that I could climb out of my spiritual inertia.

I didn’t come up with a new image to describe my mental state. Instead, an image I had realised some twenty years ago surfaced in my mind. At the time that I wrote the poem I had thought I had consented once and for all but over the years, as the MS had deteriorated, I had discovered I needed to renew the consent at the very least, once a day. Over these last two months I had neglected to do this. As soon as I started to blame my friends for their lack of perception I should had realised what I was doing. Self pity, a devious way of feeling rejected, is always a warning sign. But this time, the accumulation of harrowing feelings closed off my self awareness. It is not possible for my friends to realise how bad it is for when they never see me being got out of or put to bed. Consent does not require witnesses, it is something between me and my Maker. It is something I do when I am listening to music or in my garden surrounded by trees and birdsong.

Once I had quoted the poem to myself I felt a lot freer and the weight of self pity had lifted. The dog chained to the chariot wheel image is the Stoic description of free will. I still will travel the same distance, and it may well be long and arduous, but it is up to me whether I chose to be dragged or to run freely with the chariot of my fate.

The trick is to consent,
to act as if I have chosen
this particular journey.
Therein lies the transformation
of my inner landscape.
Falling precipitous cliffs
Become smiling meadows;
claustrophobic sycamores
no longer invade my space
but shelter, gently,
a skirmish of sparrows.

Sunday, November 15, 2009

The Subtleties of Multiple Sclerosis.

There have been three major obstacles in the way of my accepting what it meant to have multiple sclerosis.
Even though I already knew about the condition because of a family friend and understood that not only would it not get better, but it would get worse, I still have found one part of my mind has refused to accept these facts. Rationally, I could state them without denial, but it still was the case that on the odd occasions when I had a slightly better day I would find myself thinking: “Now you’ve turned the corner.”
One part of me was still refusing to accept the reality of the condition.

In the same way, I found it very difficult at first to accept that my body could be so out of control that I would spasm viscously at the least provocation. I’m ashamed to admit that at the beginning I occasionally cried out: “What did you do that for?” to some hapless carer who had done nothing out of the ordinary. My mind was very reluctant to acknowledge that my body could play such tricks on me.

It also happened that it took me a long time to accept that I couldn’t expect to be comfortable when I was put to bed. I would ask the carer to move me this way, that way, turn me a little more or pull me across the bed because I really believed that there was a magic key that we could turn that would make me comfortable.

I no longer feel that I have turned the corner so I have at last accepted the reality and it’s only occasionally that I will make the mistake of blaming someone else for my body’s ability, out of the blue, to make me uncomfortable.


I do love dreams.

I’ll need to fill you in on the background first. The powers that be have decided that after seven and a half years of one wheelchair I need another one which would open me out further and ease the compression. It was explained that it would steer differently, rather like my very first wheelchair where if you pushed the joystick to the right the back wheels would spin to the left and vice versa. So that, at least, would be familiar but, otherwise, after spending seven and a half years looking at the one control panel I felt as if I would be leaving home. So here is the dream:

I am moving back across the road and find that the flat is larger, brighter and has more sophisticated accoutrements. I try and make contact with my neighbours but they are scarcely affable and the one I already know is not at home.

So my new home, alias wheelchair, is larger, more sophisticated with brighter prospects but I will need to get to know my neighbours, for example, there is no pommel and the arm rests are not appropriate.

Wednesday, November 11, 2009

Images that transform

I’ve always been struck by Jung’s advice about how to deal with emotional problems: don’t work on the problem, but find an image and work on that. I think he was generally meaning that people should draw or paint their states of mind. I was never any good at either, and anyway, now I can’t use my hands. But many years ago I had a dream where my piano was at risk of being stolen. This distressed me very much and by the end of the week I knew I needed to work it out, so I tried drawing the piano. I can’t draw. I couldn’t get the keyboard at right angles to the back of the piano; my drawing was all on one plane. That didn’t matter. As soon as I got my strange version of a piano down on paper, I realised what the dream meant: the piano represented my emotional depths and I was allowing other parts of me to steal them.

So ever since, I have known that Jung was right and that images can be transforming.

Blogging/commenting advice to friends

This is Rachel’s advice as to how to respond to a blog:

To solve it, the easiest way is to get a Gmail account, if you don't have one already. Just go here, and click on the button "Create an account": ask for a Gmail account. Be sure to remember your login details! (You never need to use this email address again, and they won't bother you.)Then you can easily comment on Diana's blog, then on the button "Comment on", select "Google Account". It'll be very, very easy now!

Please, some of my friends think that now I have entered Bloggdom, it is the only way I will communicate. But it just that I will use it for general messages and poems. Anything personal and private will still be sent by email and I have no trouble reading my friends emails.

Monday, November 9, 2009

Marginalised by Multiple Sclerosis

Marginalised by Multiple Sclerosis

Here is a hypnagogic image to end all hypnagogic images:

For a while I was training a young Chinese woman who drove a brand new, bright yellow VW which she parked up the drive. One morning I woke with the image of her car in my mind. At first, because my legs had been misbehaving so that I was waking with them bent, not straight, I thought that the shape of the mud guard was duplicating the shape of my legs. Then I remembered Kafka’s Metamorphosis in which Gregor Samsa wakes one morning to discover that he has been turned into a giant dung beetle. Helpless and marginalised by a hostile political environment. I also lay on my back, cast, helpless, dependent and marginalised by a hostile illness. I had become the beetle.

Creativity: Loneliness becomes Solitude

Creativity: Loneliness becomes Solitude.

In 1979 I went to take up an appointment at Melbourne University. I would be living on my own and had not long been told I had multiple sclerosis. One of my friends gave me an article to read which places toxic loneliness, the sort that drives people away at one end of a calibrated scale and at the other end was solitude. It suggested that creativity was what was needed to convert loneliness into solitude. It didn’t need to be of epic proportions; I found trying a new recipe or setting out petunia plants on my window sill tipped the balance.

All I have left is words.

As the years have passed and I have been constrained by the multiple sclerosis I have found creativity can also help against desolation and grief. The multiple sclerosis has stolen from me most of my ways of being creative: singing, dancing, playing the piano, cooking, gardening and stitching at my tapestry – but it has left me words.
All the energy of my days
is now contained in language.
I think passionately,
feel ideas,
breathe metaphoric connections.

Creativity or Medication.

But last year it was discovered that my spine had become so compressed that it had developed a fracture. For several months the doctor and I experimented with medication but nothing seemed to reduce the resulting spasms. The nervous system seems to be a circle and if you introduce an anti-spasm or anti-epileptic drug, it doesn’t eject the problem, it merely shunts it round a bit, so that instead of 2-3 spasms within 30 minutes, with 20 minutes of relative comfort, I was sitting on the brink of a spasm of the full 30 minutes, which when it came, was enormous. For the first few months all that was left of me was pain, grief and helplessness and only very gradually creativity stirred within me like an occasional bubble rising to the surface of my mind.

The particularity of pain
takes over the mind
right to the very edges,
an amorphous sludge
which leaves no space for poetry.

A poem requires connections,
they need to move freely.
Only occasionally, a snippet
struggles to emerge.

Then for some weeks, my mind was taken over by a blankness and emptiness. A friend tried to reassure me that was a significant spiritual state, but I was wasn’t fooled.

Emptiness, an attenuated self;
that’s how it was for several months.
My sense of self had almost disappeared
and there was only emptiness.

Emptiness had filled me.
That sounds logical enough,
but a self is defined
against another self,
emptiness, like nothingness,
is without boundaries.

This works only
if seen as a metaphor.
It was if the boundaries of self
were being eliminated;
as if I were crossing a threshold.

This is the language of mysticism,
reminiscent of The cloud of unknowing,
where the image of God is without form
without co-ordinates of space and time,
and must be defined by negatives
such as not here, not there, not up, not down.
This absence of God becomes a presence
to be welcomed with wondering love,
not as was happening to me
recoiled from, resisted.

The emptiness that assailed me
was not of my choosing;
defined by negatives,
even the word ‘engulfed’
implies location, movement
and belongs to the self, not to emptiness.
Without form and void,
there was no glimmer of light
heralding the approaching Spirit.
This was not divine nor demonic,
just incurably wrong.
A drawn out hypnagogic image
of a fractured spine,
a fracture that will go with me
into the grave.

Once the poem had written itself, I understood what was the matter. I often find I only understand what is going on when I have read the poem. The emptiness was not a state of being emptied out waiting to be filled with the light of God, it was my body’s way of processing how it interpreted the fracture.

Once I understood, my creativity was released and I could write again. The burden of grief and desolation had been lightened.

Saturday, October 31, 2009

Paul’s Death

Today is the anniversary of Paul’s death. He was twenty-three when he died; it has now been dead for twenty-four years. I find it intolerable that he has now been dead longer than he has been alive. This anniversary has joined other hideous memories from the first year after his death; he died yesterday, last week, last month, last year (a particularly nasty milestone), a year ago.

The Relay Race of Life
With his dying, he confiscated my talisman for the future. Watching my friend’s lives, I see them like a relay race. They are passing the baton onwards to their children and grand children. I received the baton from my grandparents and have splendid memories; I know the name of the plant Solomon’s seal. from following my grandmother around her garden when I was four; when I was fifteen and she was in her late eighties I remember taking her for walks. She carried an umbrella even on the brightest of days, not against the weather but so she could hide inside it little cuttings of plants she had nicked from peoples’ front gardens. She was an inveterate gardener. I’d say to her; “what will you do if it rains?” and she’d giggle. I remember my grandfather shaving with his braces hanging down his legs or playing patience at the desk I now own. So I certainly received the baton but I have no one to pass it on to. I will reach the finishing tape of death on my own.

A Grief Time Will Never Heal
Obviously I don’t sit here dwelling on this but, nevertheless, it is an aching grief that time will never take away.

Sunday, October 25, 2009

Destination Unknown

Texting and emailing seem really amazing to an old woman who comes from the days of surface mail or air letters that took 5 to 7 days to travel from Christchurch to London. I can really appreciate the instantaneousness of them.

But although I have a blog, I confess myself puzzled. I feel I am writing a message and enclosing it in bottle, tossing it into the ocean without checking tides and currents. I have no idea what the destination is, or even if there is a destination. If I walk pass the same piece of shore three weeks later and discover my bottle, I do not know if the bottle has been opened and the message assimilated.

Tuesday, October 20, 2009


At the very moment
when she was looking
at a rainbow, she received
a text from a friend, far, far away,
who was looking at her very own rainbow.

yet, spatial boundaries,
here, there, everywhere
had evaporated.

It first felt like I was an eavesdropper
but then I found myself very glad
to be sharing the moment
when two friend, cities apart
gazed at a rainbowed sky.

I’m 70 and came late and cautiously to the internet but am beginning to get the idea.

A Garden of Grief

Now is not good,
but it will only get worse.

The illness is squeezing me
like a piano accordion
into a tighter and tighter note.
Only with the utmost vigilance
can I swallow food and drink
past the pleated folds
of my stomach.
I do not know how it is
that my last breath hasn’t already
echoed thinly in the air.

One is not a family:
it’s a solitary fugal voice
faltering as other entries
fade into nothingness.

This morning I took these griefs outside;
with flagging breath
and dereliction of body
I cannot rant or wail.
I just hoped to release
a trickle of tears
against the pain.
But I hadn’t taken the garden
into account: the integrity
of a fifty-eight walnut tree,
a vibrancy of bird song
bellbird, thrush, canary, sparrow
each claiming their own
spring time territory.

I felt like a sailor setting out
in expectation
of fierce winds and crashing waves
only to find myself lulled
into halycon days;
calm skies, sunshine
and the promise of spring.

Saturday, October 17, 2009

Who’s going to remember me?

This haunting cry could belong to any of us, surrounded as we are by teeming millions and vast reaches of space and time. But it came from the heart of a 14 year old dying of leukemia. He collapsed before breakfast, was diagnosed at lunch time and dies that evening with no time to prepare his mind for his approaching death.

Hunger for knowledge

Charlie had run away from a dubious foster home when he was nine and lived on the streets for over four years with a group of similarly disadvantaged children. Then in the last few months of his life he had been given the chance of a normal education, which he responded to as if he had been starved of knowledge for years. It even turned out that he had, during his street years managed regular visits to the public library where he had read The Three Musketeers.

The importance of little things

Activities we take for granted became for him miracles of living: he was beside himself with joy at riding a bicycle. He just wanted to be ordinary. The head teacher of his school acknowledged Charlie had seen more evil than everyone in the school put together, but Charlie wasn’t one to indulge in self pity. He gave those who knew him the gift of himself and touched the lives of people who merely had heard his story.

Charlie, you will be remembered.

Friday, October 2, 2009

Particularity of pain

One of my most significant writers is Loren Eiseley. In one of his essays he studies his hands admiring their dexterity.

He asks us to consider " their first painful venture on the pebbly shore" and immidiately my mind travels back to that probably ugly, not yet amphibian creature struggling out off a puddle of water, not for scientific exploration, not from a sense of adventure but from bland necessity to find more water.

This is the journey we are all on and it makes my suffering trivial and takes away the particularity of my pain. I am part of this journey even if the human race becomes extinct because of drought, famine, greed or just playing human foolishness and ends up like the sabre-toothed tigers locked in death with a tooth in each other's skull.

Pilgrim's Progress

I am lucky enough to live in Bunyan St and so have my own pilgrim's progress but whereas Bunyan's Christian seems to have a fore-ordained end, my journey is more tortuous it winds back on itself, repeats itself and never seems to get anywhere. It is the labyrinthine journey of the inner life.