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.
Thursday, April 4, 2013
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.)
Her funeral service is likely to be on Monday at 11 AM.
(This note contributed by Rachel McAlpine.)
Tuesday, April 2, 2013
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.
Friday, March 8, 2013
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.
Thursday, February 28, 2013
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.
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.
Wednesday, February 20, 2013
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?