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This poem is now out of date as dear Rachel is rechristening my ‘blog’, ‘journal’.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.