Steve Dakin's Valediction for Diana

Diana – meditation on courage and thank you

Wednesday 24 April

It is 20 days since Diana died – early on Wednesday 4 April; 15 days since her funeral. I didn’t see her lie at home; her carers kept vigil. Almost a month since I saw her – 28 March.

 Her funeral was a cold day – clear, crisp and at the internment southerly clouds scudded across the Diamond Harbour cemetery; the call of the gulls and the cry of the mourners. All fitting.

 Diana was probably the most courageous person I have known. Many people, myself included, have acted well in face of adversity; have taken risks that others might shy from. But many of these actions, many risks are assumed without foreknowledge - in the heat of the moment, as circumstances dictate. For Diana though, her actions and the risks she took were entered into with full knowledge of the consequences. She refused drugs to maintain her clarity of mind; she refused institutional care to maintain her freedom of spirit; she refused idle words of comfort to maintain her fierce sense of sharpness and morality. Courage, true courage means speaking and acting in the glare of foresight - knowing the consequences but speaking and acting nevertheless. Diana showed true courage.

 I have just re-read her last few blog entries and this message is for all Diana’s carers, friends and family who sustained her courage through the days, weeks and years of her dying. Courage is always contained in a context. Diana’s MS and her community of carers were the stage and cast for her courage. You supported her independence, helped maintain her clarity of mind and left the legacy of her stellar writing. 

From Diana I learned about courage and I couldn’t have done that without you.

Thank you.

Funeral service

Hi to all,

Diana's funeral service will be held on this coming Tuesday 9th April, at 1pm at St. Augustine's Church at the following address:

5 Cracroft Terrace 

Cashmere
Christchurch 

The best way to reach the church is to head onto Cracroft Terrace off Dyer's Pass Road. Please click on the link below if you wish to see where the chapel is on google maps.

http://goo.gl/maps/heIju

Diana was brought home today and we (her carers) carried her into the house accompanied by a pair of fantails and under a light sprinkling of rain. She will rest at home until Tuesday; if you want to visit Diana during this time, please do so. There will be always someone in the house but if you prefer to call beforehand, this is the number: [64] (03) 3660 650

Thanks to everyone who has sent kind, caring messages either by email, blog or via the heart. We, her friends and family really appreciate the support. 

Warm regards 

Gabrielle

Diana has died

Today at 4 AM, Diana slipped out of this life. She had scheduled 15 April as the day she would accept morphine for the unbearable pain she was suffering. On 4 April, she asked for morphine, knowing that after all these years, her poor body would not tolerate it easily. I am told that she was lucid yesterday, and died in peace and dignity.

Her funeral service is likely to be on Monday at 11 AM.

(This note contributed by Rachel McAlpine.)

Update

My black humour, it seems, will follow me into the grave. 

I rather like the idea of dying like a French heroine lying back on a chaise longue bringing my hand to my forehead from time to time and sighing piteously. There are two problems in that: I can't independently move my right arm and I would have to buy a new outfit of clothes as well as a chaise longue. I could manage the sighs. But, I am finding that these last ten days or so are full to bursting with arrangements and re-arrangements: cancelling the fish delivery, setting up a new bank account for the carer's money so that, at the last, it won't be put into a frozen account. I even suggested to my nephew that I should contact the post office with a change of address. He found that dubious as I cannot be sure of what address. I've rather liked the idea of being “thrown into outer darkness where there shall be wailing and gnashing of teeth”. But, with the universe expanding at the speed which it is, it will have to an enormous throw and, anyway, the glittering galaxies would probably catch me up before too long. It's unlikely the post office would allow a worker to travel that distance to deliver my mail. And I've always wondering at the “wailing and gnashing of teeth”. Whose teeth? Mine, or will there be a theatrical cast of extras or would those of you left behind have to undertake these activities? 

It will be a lot easier to leave out the word “outer”. I could be thrown into darkness via a trapdoor being opened in the floor and that would certainly allow for the delivery of mail even if, as I will be in darkness I will not be able to read it. 

All this having to take responsibility is making me live in a third person novel. I'm having trouble getting in touch with the first person. What exactly am I feeling?

Well I can tell you this: I've experienced a pregnancy craving. I found myself longing for souvlaki. The longing was fortunately, at a reasonable time of day when the Greek shop round the road was open, so my longing could be satisfied. Birthing and 'deathing' would seem to have something in common. 

Throughout all this rigmarole I need to say something about my carers who have been endlessly supportive. The difficulty in getting me supported so that the sling, which will catapult me from the bed to the wheelchair, can be inserted is horrendous. Every time I remember the speed with which my two morning carers complete this task, so that I am not in such dreadful pain for more that 2 – 3 minutes, brings tears to my eyes. So that puts me in a first person novel. I feel such love and gratitude. 

"Give sorrow words"

These days when I'm on my own,

thoughts about death and dying elude me.

They seem to have dried up, like all the tears

I should be shedding for myself.

A veritable torrent of tears. 

They've dried up too; the most I can muster

is moisture in an eye when I hear

something especially poignant:

The BBC recorded a nightingale in a Sussex wood;

the peon of joy rang out

but it was 1942 

against the non-stop background of British bombers

droning their way, at their own risk,

to annihilate German cities

and civilians. Worth a tear!

Sometimes, I feel like Shakespeare's Macduff

with my hat pulled down over my eyes.

“No”, you say; “he was told to give sorrow words”.

But what have all these book of poetry been

if not to give sorrow words!

“No”, I disagree. Theres been an age old 

distinction between telling and showing. 

I have no trouble with telling;

showing is a different story.

Perhaps it all comes from living on my own

for so many years; no one to get

irritated at, vent spleen upon,

share joy and grief. Anyway,

I am now 74, too late to change.

Besides, I'd rather share yesterday's miracle

when three monarchs emerged on one day.

One sat on my hand for 30 minutes

occasionally opening and shutting it's wings. 

Transformation, of what a friend's toddler

calls 'catybillars', which has more 

significance for the world than any 

account of my pain and loss.  

Heartbroken

Heartbroken                 

The days are zipping past unforgivingly. 

Soon it will be March - my birthday month - 

and the start of autumn. 

Already, I have lived through 

my last January, my last February

and my last season of summer.

The words seem but a fiction,

subsumed, as they are, into a greater grief.

When I can no longer endure the morning

torture of getting from bed to chair 

and the return journey in the evening,

I will be bed-bound and have to say goodbye

to a view I have loved for over twenty years:

Zipadee a newcomer, always birds at the feeder

and the change of light on the walnut tree.

Then I will have no need

to wait for my body to give up:

I will die of a broken heart.

Coping

My illness has been so limiting,

I haven't been able to break free 

or ride the four winds.

Now it's making visitors hard work:

I want to talk about death and dying,

they want to talk about their daily happenings.

I suggest a compromise:

Read me Winnie the Pooh,

or Treasure Island.

Clarity over comfort

I have received so many loving and supportive responses to my DEATH IMMINENT blog.  It would take too many weeks to reply individually so please forgive me for sending a general thank you.

The nurses seem to think I won't get to September which means I won't need to starve myself.  That sounds quite a good idea.

I have always regarded M.S. as a parasite and I have had to concede reluctantly that it has a right to exist.  But it is not obeying the rules of a parasite: keep the host body alive.  Instead, it's producing dire secondary effects.  The scoliosis is extreme, pushing my stomach and inner organs quite out of place which makes eating very difficult, not to mention drainage.  The nurses are surprised I've gone this long with a catheter and no bladder infection.  I am losing weight drastically which is making me merely skin and bone and prey to pressure points.  At the moment I have four ulcers, three on my back and one on my bum.  They are determined to enlarge either by spreading outwards or inwards which puts me at risk of osteomyelitis and/or septicemia.

It also raises the question of pain killers.  Up till now, I have chosen clarity over comfort.  I am bearing today's pain because I bore    the pain yesterday. I doubt I would otherwise, but my pain threshold has shifted as the pain intensifies.  I know from experience that pain killers merely shift your mind away from the pain and I have had a great deal of practice in doing this without medication: I repeat a mantra or fill the room with music like the Bach Brandenburg with it's lovely forward momentum.  Besides, I have become very used to my mind and am loath to part with it at this stage of my journey.  I know morphine would have no effect on my allodynia, the intensification of my sensory responses.  I have always thought the word cognate with annodyne. My sensations are rasping not smooth.  The other drug the nurses have offered has the side effects of drowsiness, constipation, nausea and itchiness.  I think the pain might be the better option. And if I let my mind go woozy I wouldn't be able to organise the carers and you just wouldn't believe the number of instructions I have to give when I am put to bed as we keep having to change the routines to accommodate new stages of new M.S. damage. The one thing I have to make sure of while I make this decision to avoid painkillers, is that I don't become snarky with my exceptionally good carers.  There are about 12 times a day lasting no longer than ten minutes, when the pain levels are really through the roof but it seems illogical to zonk myself out 24 hours a day just for those times,  but I do warn my carers that if I do yell through these times its the M.S. and blessedly they do understand.

I'm not afraid of losing my words.  The last poem was about the difficulty of communication in its intimations of immortality.  Several sections of T.S. Elliot's Four Quartets deals with the inadequacy of language to express such intimations but he perseveres notwithstanding. Wordsworth uses the metaphor of the ocean for eternity which would be anathema to any self respecting fundamentalist sect.  I will also run out of words in that way as indeed will each and every one of us.  Otherwise, I probably won't lose my words unless I end up delirious with a nasty infection. 

I am dying, learning to live without a future.  Then I receive a phone call enquiring about my order for winter fire wood.  As I don't know when I will die and am very thin and therefore very cold I was forced to order my supplies for the winter, very aware of the irony:  planning for a non existent future.

The problem - even for those of you who get to see me - is that I don't look ill enough yet.  One of my carers has said that if I stopped sitting in the sun and picking up a healthy glow, if I didn't have the bone structure to support the thinness of my face and if I didn't wear bright colours, then my friends visiting this pallid, gloomily arrayed person would see the changes.  Yes, I am short of breath but my mind is still as active and alert as ever.  So I seem a fraud.

But I am dying and it's very sad. I've just thought 'Happy Birthday' to my father for the last time but I am also getting bored with dying.  I have no new intimations of immortality to keep to myself.  I just have the daily round with the peaks of pain, the smudgy eyesight  and the need to be pleasant to my carers.  Who wouldn't wish the quietness of the grave?

My poem is not suppose to be about me only. None of us has the vocabulary to talk about what will happen after death. We are all stuck with fantasies and images and metaphors. And if the metaphors matched their wouldn't be so many fights between world religions.
As I get worse my careers, will find it just as easy to read blog comments or emails to me. I will be grateful for either.

Thwarted

Spiritual insights can be mangled

by language, which seeks to define

even that which is too fragile 

for definition. Thus: “In my end

is my beginning.”, which sits

uneasily on the page

because of the possessive “my”,

implying, as it does, both

space and time. 

Here's another version: 

“There will be an end followed

by a beginning.” More abstract.

I know I am dying, dying enmeshed

in hesitations and intimations

which cannot be shared.

Metaphors can cause confusion.

How do you describe 

the ineffable? So, I am 

approaching my death in the 

knowledge that, sooner or later, 

I will run out of words. 

Out of kilter

I have discovered that this dying process had created a great imbalance. I am still mourning for Margaret and my dear sister-in-law, Bev, and from letters and conversations with friends I have gathered that I will be missed in much the same way. 

But, I am losing all my good friends, and that's only the half of it. I have lived in this house and garden for twenty years, leaving it since 1999 only twice. In all those years, I have loved the light through the leaves in the changing seasons and at different times of day, that will also go, as will my pets, the books and music that have sustained my life. And even more difficult, I will be losing my memories like the ones of Paul's first breath, his first sneeze and his first yawn. 

You might ask why, in that case, I need to die. But, as it turns out, my weight loss has become so excessive that my key nurse is quite sure I won't make it through to September anyway and I will be also losing the pain, the blurred and cataracted sight and the endurance which I have become too fragile to cope with. 

The third bell

I have sprung a leak, am taking on water.

Perhaps in my sleep, I drifted across

a ragged rock or coral reef.

It's not yet dangerous: no sound

of swooshing in the hold.

But it's only a matter of time.

I have presented myself

with an arbitrary date: forty weeks,

a spiritual pregnancy.

The bell rang for my birth and marriage;

it's time now for the third bell.

I have to learn how to die,

to die with dignity; not sign off 

a snarky, snivelling wretch.

I am practicing stoicism.

I am loving more deeply

the things that matter: visits from friends,

music, light on the walnut tree.

It's been several years since I have seen

the night sky; so I will be taken out 

to drink my fill of moon and stars.

“Virgin namesake, moon-Queen at night fall.”

Or, the Duchess of Malfi's magic words:

“Look you, the star shines still.”

My mind wavers and I wonder at times 

whether I can retain my stubbornness.

But then I remember the hardship

of each days waking,

remember I can no longer consent

to the pain and endurance,

nor transform them into any

meaningful pattern.

I am asked whether I will find it hard

to say goodbye.  But, consider

how many times I have already said it:

feeding, cleaning, dressing myself

turning over in bed

walking, singing, playing the piano,

cooking, stitching my tapestry,

hugging my friends from their or my need.

The list could go on forever.

I have lived, so far, nearly three 

of the forty weeks yet to come.

There will be only one ending,

an ending I must learn to trust.

"...that is the question."

I'm turning into a hardened flirt; 

several hours of every day,

I'm dreaming of surrendering myself.

It's a great temptation.
But, in the meantime, I'm holding 

to the straight and narrow, 

by sharing twilight with a friend

as we talk over the week that's passed;

by delighting in a brass consort,

Venetian music

from four centuries ago.

I delight in feeling connected

to all those who have 

performed, listened to and loved

the same music

for every year of that four hundred.

Thus far, I'm remaining virtuous.

But, winter is coming,

with oppressively leaden skies;

I will be cabin-fevered,

so I'm not making any promises.

Twang

In the end, I stayed in bed only one day and that was hideous on the back  of my head, my arms and legs, not to mention three of the four ulcers which are on my back. Both the nurse and OT wanted me to rest, but not bed-rest. The only problem is, that the hardest part of the day is getting me out of bed. So I came up with a new plan: half a valium, one Panadol and loud Baroque trumpet music to distract me. With their help, I've managed to get up the last three days but, when I'm on the wheelchair, I'm cast.

In normal circumstances the injury I have sustained either from a pinged cartilage or inter-costal muscle or a cracked rib would heal within six to eight weeks. But how normal is M.S.?

However, the pain and the helplessness have not dampened my poetry. Below, are the latest snippets. I'm disappointed that my last poem, "Massacre", appeared in the middle of the Christmas rush as I really wanted to know how other people had fitted the shootings into their belief systems.

I'm very grateful for all the loving support I have received. Because everything is done through an intermediary — holding a landline to my ear, setting up Skype or writing an email— I very rarely initiate, but mostly respond. The blog entries are my way of communicating.

The mathematics of living

Quadratic equations seem not to work

in my case; x = minus b

plus or minus the square root etc

sits uneasily against

achievement, privilege, illness and loss

which cannot be corralled into one pen.

This seems too great an imbalance.

Dumbfounded

I'm running out of metaphors

in the prolonged dispute

with my illness. It's like arguing

with a fundamentalist preacher

who has all the answers, even

before I've framed the questions.

I hate to acknowledge defeat,

especially when it's to do with words

but I must admit

I'm going tongue-tied.