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?