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.