I know you read this. In same strange way I feel your presence, your critical eye cast over my writing, careful dissemination of the style, vocabulary, sentence construction.

I’m sure you know this quote:

 

To look life in the face, always to look life in the face, and to know it for what it is, at last to know it, to love it for what it is, and then to put it away [...] always the years between us, always the years, always the love , always the hours ...

 

Just wanted you to know that I know, and that I’m glad of your presence, even such a distant one.  You may not like all this “mushy” stuff, but i don’t care anymore, i have the comfort of saying what i want to say: i miss you.  At the time, i couldn’t have done anything different, and neither could you.  We both fell victims of the circumstances, the timing, the need to familiarise ourselves with the sudden monumental changes of our separate lives.  Why did it happen simultaneously?   Now, after all this time, i feel deeply sorry that this was the situation.  No part of it was your fault – and had i to live through the same time again, i would have done what i did, i would have asked you to leave me.

 

I just hope that wherever you are and whatever you do, you are happy.  This is why i couldn’t bear to have you stay: because I knew that see me descending into increasingly worse pain, dependency and inabilities, yet not being able to do anything at all to ease it, would not make you happy.  Yes, i was selfish in that:  i knew that in the future, being the obvious reason of your unhappiness was, would be, is too much to cope with. 

But it doesn’t change the basics. I miss you, miss talking to you, being with you, miss air-crossing of our texts, seeing you coming in to the house, i miss your cooking, miss the throw on the kitchen floor, the stars above the front of your hose.  So many things have changed since.  You have no idea – nobody has – how much i would like to share all of that with you.  But you are somewhere else, hopefully happy, and – fortunately or not – one remains the same: there are” years between us” and within us, there is “always the love” and “always the hours” and i can’t be “just a friend”.  I still love you, despite everything.  Always will, i suppose.

I dreamt I died and told you
I may not have been
the best of partners
but I really loved you

my body walked away
until I met the death herself
on a roundabout
she told me to take time
before I decide where to go
I still have ten days she said
to decide if I want to be buried
                                  and where

I had a bath in the preparation room
two Jewish attendants in clean shirts
black waistcoats and metal-rimmed glasses
patiently didn't answer questions
afterwards
                  we were free to go

I knew I died
I wasn't angry maybe sad
but some tried to call
their loved ones
some were furious
cursing the bath attendants
who kept washing patiently

and then the room became suddenly
crowded with kids young teenagers
a plane went down nearby
one of them sat on the edge of the bath
it was nearly his turn when he asked
if I think he could stand up
because his legs are crushed and trapped
I told him he would walk fine now
they didn't know they died

I went back to the house
to watch TV reports of the crash
my mother met me at the door
and half indifferently half disgusted
with my brash audacity to go there
turned me away from the family grave
but it was the telly I went to see not her

so I went back to the preparation room
to keep the others company
they needed me more than those
I shared blood line with

I woke up happier
with just my dog for company
then I've ever been with them


copyright Nikki Darman, 12.01.2013

The last three days passed in a strange daze of 'couldn't-care-less-ing', to the extend that even the dishes managed to pile up in the sink and I wasn't able to put them into the dishwasher.  What's even worse, is that it's only today that I managed to pay the rent: just wasn't able to stay awake long enough to get onto the internet banking and transfer the money. Lame an excuse as it might sound for some, this is exactly as it was.  I had one day - last Thursday - when I managed to stay awake from 10 am to 11 pm; otherwise, for every one hour up I spend 3-4 hours asleep.  And not a healthy, healing sleep at that: pain wakes me up every few hours, but I'm too exhausted to get up, so just try to move and shift to ease it a bit, and fall asleep again for another while.  Have strange dreams thou, very strange.  Last night I had to get up and write one down, or I knew I would continue along the same lines - and I didn't fancy it.

What's tiring when I'm awake is that I keep finding and feeling these lumps - size of ping-pong balls - of hard muscles, hurting as they are, and hurting even more when I start to attack them to break the muscles into something more resembling the 'string' of the muscle fibre, rather than a knot...  Awfully exhausting.

And there is still no legal assisted suicide in Ireland: the brave MS sufferer, who brought her case before the court, lost.  So far.  She might appeal the verdict.  What annoyed me the most was how the judges were 'moved' by her suffering, and how they assured her that should anyone be accused or tried for assisting her, then because of her 'unimaginable pain' they felt the prosecutor 'would take this aspect into consideration'.  Meaning what, may I ask?  That she may ask her partner never to do it, or that her partner is free to help her and the prosecutor would look the other way?  Why can't we decide to be brave for once and put it straight: euthanasia is wrong, because somebody else decides who is to live who is to die.  Assisted suicide is when I decide to commit suicide, and just because I don't have sufficient power in my limbs to administer some fast-acting poison into my bloodstream, or can't take lethal overdose of something - I ask someone else to deliver it to me.  Because if you are fit and healthy, you can do it yourself - but if I'm in constant agonising pain without any chance of ever getting better, then I have to shut up and stick it?  Hello?? Equality???

I do appreciate that some of my 'deeper-beliving' friends may have a problem with the concept of suicide.  But faith is one of these things which I agree to disagree about: I'm delighted for you that you found yours, and that it keeps you happy/strong/etc/etc.  Just accept that you are your own person, and I am me: be delighted for me for who I am, and don't tell me that 'there are miracles', and that all I need is to pray...  We all pray, one way or another.  We all believe, one way or another.  Even lack of religion is a religion.  And right now I really don't feel like analysing my religion (or three of them), or my faith, or lack of any if I so feel.

But I did empty the sink and stacked the dishwasher.  Eventually.

I don’t really like to make any old year / new year stuff, but this time I thought it might be beneficial to show the yearly progress (regress?) of my dearest companion, fibromyalgia.  Last January I could walk with just one stick – now I need zimmer frame on wheels.  I could get up by myself, have a shower, get dressed and eat some proper food.  Now I can do none of these, and to add insult to injury, I can no longer even undress myself in the evening, so when I go to bed I just lie down in my cloths and wrap the side of the blanket of top of me.  I don’t remember when was it last that I slept in the bed rather than on top of it.  With eating, the list of what I shouldn’t eat is far longer than the list of what I’m allowed to; in fact, during 2012 I had six surgeries to keep the lower intestine “open”, plus a gastroscopy, when they had to knock me out and, funnily enough, they found a large sciatical hernia sitting (hanging?) just beside my stomach, so the result is that when I eat, the food sometimes goes into the stomach, sometimes – into the hernia.  And yes, I can tell the difference... 

 

What else is new? I have breathing problems which I didn’t have before; my varicose veins have spread from the calves to entire length of my legs; I lost feeling in the tips of my fingers, especially in the morning – it’s just pins and needles, nothing else; the right shoulder keeps jumping in and out of the joint; and the pain in my legs and my back (which is not helped by the fact, that one of my upper-lumber disks started to ‘click’ very painfully in and out) is so bad sometimes, that despite the fact that my pain threshold is very high – I can’t help crying. 

 

In fairness, if not for my friends and the assistance I get from the local Health Centre (I have assistants coming three mornings a week, to help me get up, shower, and get dressed, plus they do some shopping for me and some basic housework, which I no longer can do myself), my life would be one hell of a real hell on earth.  The strangest thing of all is that fibromyalgia is – by some doctors – regarded as “a condition” rather than “an illness”.  But this “condition” is proving far more difficult to live with than many illnesses that I had a doubtful pleasure to go through, chronic migraines or cancer including.  Yes, I do mean what I just sad: I had cancer before, I survived it and I survived radiation, which to say the least was not a pleasant experience.  And yet, it was and is much easier to cope with and to live with than “the condition” of fibromyalgia.

 

Anyway, for the moment I’m still alive, despite odd times when I feel I have had enough of this circus and I’m ready to go...

It's nearly two weeks now that I can't manage the simple tasks - writing letters, reading documents, staying on top of my shopping needs, 'coordinating' cleaning...  even watching TV or reading some really good books is tiring so much, I can't do it for longer than half an hour in one go.  It just somewhat changes from whatever I'm doing into a growing monster, which is towering above me, ready to crush me flat - my breathing is getting more difficult, and each task is demanding more and more energy and effort to carry out...  I feel nearly too tired to live any more.

Fourth day in a row of fever, nausea, difficulty with eating anything (feel sick after), balance problems, over-average muscles pains, and this most strange of all feeling that when I move my head, my eyes don't seem to follow immediately... I don't know what it is, and to be honest I don't even care any more - just whatever it is, would it ever please stop...

I'm following the test-case for assisted suicide in Ireland.  The retired lecturer suffering for 20+ years with MS... If she wins (and as rare as I pray, I do pray for that mercy for her), I know a certain retired lecturer suffering with what I describe is the exact opposite of MS, who hopes to be able to use the same route when the time is right... fancy that, ha?  But it's next to impossible to understand what does it mean to have constant pain, day and night, when even sleep gives no relief, because the pain wakes you up and makes it too difficult to move and change position into - what you hope - would ease it, but you are far too sore, paralysed with pain, to move...  No, unless you get to that level of pain, please do not tell me - do not tell anybody - that assisted suicide is immoral, wrong, or whatever other rubbish you think you have the right to proclaim.  You don't have any right.  Not until you experience it.  And then pray to whatever deity you pray, that you would never ever experience it yourself.