Irish word of the day

Iarmhaireacht 
the loneliness felt at cock-crow
(pronunciation here)


I cannot speak a word of Irish, which is the official language of Ireland, in use - so to speak - at least for the last 2,500 years, outlawed by the British in the 19th century, an act that eventually, during the fight for independence in the 20th century, lead to the modern era Celtic Revival including a sudden deep interest in the Irish language. So, thank you Britain.

All I know is trivia, that there are no Irish words for yes or no, but at least three for woman. Also, three different sets of numbers, one for humans, one for non-humans and one for the maths.

My Irish family can speak Irish, some better than others, some mumble along if need be. Most of them have complicated Irish names like Caoilfhoinn, Rionagh, Eavan, Aoife, Oisin, Tadgh - and these do not even include what my man's R stands for or our daughter's S, but both are equally mysterious.
My Irish family has a great time listening to non-Irish speakers trying to pronounce their names. They all hated  - more or less - having to learn Irish at school and university where it was compulsory. R had to sit his Irish exam twice before he was allowed to teach science.
My Irish family couldn't give a damn whether anybody speaks Irish or not as long as they speak up and share what's bothering them.

As for cock-crow, this is the time in very early morning when it begins to get light.  Just in case.

Whereas loneliness is up for individual definition.
But when you bung it all together, cock-crow, loneliness, early morning, a distant single bird waking up with a chirp, your lack of sleep, the human silence everywhere, that big knot of fear in your stomach, an inconspicuous little box of dreadful drugs on the bedside table, there's that one word for it in Irish. Just in case.


Ancient Irish traditional tune in support of my post:

Through the open window I can hear R digging out one of the compost heaps, the dull sound when the spade hits the sieve. He will be busy all afternoon, spreading the fine compost on the beds now that the potatoes and onions have been harvested.
Earlier, he picked the black currants and later, I will top and tail them for the freezer and on a cold day in the autumn, we will mash them and boil them and strain the pulp through a fine mesh and add some mint and vanilla sugar and a shot of gin.

Last night was awful, colicky and sweating, I walked and sat and got up again trying to find a less painful position, counting the hours it will take for whatever is tormenting my digestive system to pass through. I have had nights like this for many years on and off, maybe once a month, a gift from the immune suppression medication. And there have been nights when at 4 am I was ready to get rid off all my life saving drugs just for a few decent painless hours of sleep.

I have never been very good with sleepless nights. All this tossing and turning, feeding on buried anger, unsolved problems resurfacing, I would get so mad at R and the entire sleeping world out there, oblivious to my discomfort. And even now that I have mastered the techniques, the breathing, the progressive muscle relaxation, when I return to making lists in my mind, rework the details of pleasant memories floating in the Indian ocean, I still fell I deserve better, that all this is not fair.
If I don't watch it, these nights can be tricky, with many hidden traps, a lonely tunnel opening full of suspicious thoughts, unresolved conflicts, too many questions, ancient fears. And before too long, I am reduced to doubts about everything and nothing and furious with myself and anybody I can blame.

Next morning, sluggish, nauseous but more or less pain free, I get up carefully, slowly, yet full of hope and the night, it's just another memory.

A bit over seven years ago, when I had wept with relief that there was not only a diagnosis but also medicines to keep me alive, I just smiled at the expert who listed the most common side effects and risks and what I need to watch out for and so on. Fine with me, I nodded foolishly. I can handle that.

After all, the terminology is nothing but benign, side effects, something you have on the side. As in: Oh, by the way, you will develop chronic gastritis, your gums will constantly bleed with ulcers, your skin will bruise easily and you will develop an endless series of festering cuts and nicks and tears anywhere on your skin but generally in places where band aids won't stay put, and beware, they will take ages to heal (if at all).
Most of the time, I also forget to remember that over time the side effects 'have been known to worsen'.  I remember thinking, have been known, what a preposterous concept and of course, I dismissed it immediately.

As I said, I nodded foolishly. You learn an awful lot, I admit that. Mainly, that you need to get up in the morning and welcome the day, regardless.

People tell me: do that, ask your doctor for that, insist on test xyz now. Don't wait, demand this new treatment. Do you have any idea how complicated this all is? How difficult it is some days to call and ask for an appointment. Should I let it get worse? Is this bad enough? 

Some days, I just want to move on, never see another waiting room, ever again. I could write a book on waiting room decorations, it would end on a tragic note. No more carefully rehearsed questions that fail to express what I really wanted to explain anyway. I gave up on lists some time ago, it makes you look like a hypochondriac nerd with issues. 

Some days, I just want to walk in there and look across the inevitable desk and roar: I feel ill, just do something. Whatever. Just let me lie over there on that stretcher and get on with it.

No more cheerful thank yous and smiles all round because I want to remain in the good books  when the shit hits the fan. I want to be the good patient, the one who is on the ball while at the same time understands the constraints of time and money, who can come up with short precise descriptions and not asks too much. In my ideal world, every person with a chronic illness deserves a personal assistant who organises appointments, tests, insurances, dinner dates and holidays, incl. cancellations and sick certs. I would settle for a robot.

And some days I want to test fate, just let things happen, just wait and see. What would happen if I pretend to be stuck somewhere without doctors and labs and pharmacies and all those shiny diagnostic tools. (After last week's x-ray, the young intern said, please remember to record it in your x-ray data card. Oh sweetie, I almost replied, nice try but I've lost track long ago.)

But whatever it is - panic, fear, worry or simply the fact that I love being alive just that bit too much - I cannot do that. 

And then there's this thought: I know I can look within and watch the stuff coming up - the restlessness, anxiety, impatience, fear and tears, the lot - just watch it come up and don't get involved. I know by now how it rises, how it eventually passes away. I know it requires patience, self discipline, sometimes distraction, sometimes a cup of valerian tea, a walk through the garden at night. I know that sometimes it takes ages and sometimes it can be just a matter of sleeping through it. And yes, I know that in the end I will be where I started: a woman with a serious chronic illness.  But what else is there? This is it, my gorgeous life. And I mean it.

This day 33 years ago, we got married.

new word of the day

uhtceare : Old English noun meaning pre-dawn anxiety or lying awake before dawn and worrying.

Sitting in the kitchen at 4 am, me and my old pal gastritis, we have been here before. Too often for my taste but who am I to complain. In the cup in front of me yet another herbal concoction with a fancy name.  I've tried them all. It's all the same, I could just as well drink a cup of tap water. Maybe next time. 

A hot water bottle in my lap, I try to concentrate on the novel I have been dragging around for the last week.  Nobody would notice if I just read the last page and get it over with. But of course that's cheating. I cannot recall most of the stuff I read anyway these days. Seriously, what is my problem here?

The moment of resigning. Unnoticed almost. One day you wake up and the territory has become familiar, the fear suddenly bearable, death has become a distant possibility again. The unthinkable has become routine. You have become slow, to the point of being lethargic. You withdraw, you spend time doing nothing. Sometimes doing nothing is all you have the energy for. None of this used to be acceptable. And so you have become a person you never liked. When you still had this abundant arrogance of being healthy, you felt - no you never even felt that, you took it as a given - that vitality was a birth right and - worse - an option.

Last week my immunologist told me that maybe I should be monitored a bit more closely, more blood tests, a couple of x-rays, lung function testing, the works. I successfully negotiated a compromise and we will compare notes in January. She mentioned that only 1500 people in this country have my level and combination of autoantibodies. Based on annual figures of diagnoses or whatever. Statistics. I have no idea but I wonder all the same, if ten percent of them have stomach cramps, that's possibly 150 people sitting in their quiet kitchens with a cup of herb tea waiting for daylight unable to finish a decent novel.

Some nights you wake up at 4 am and you remember what you forgot to include in your tax returns. For a very brief moment you consider the consequences in minute detail before you realise that you have no idea. Other nights you wake up to your child's laughter, you are driving the ridiculously unsafe old car and you watch her in the rear view mirror, her damp hair curling around her face while she talks to the puppy dog on her lap. Then again, you wake up and you are nowhere. You find your breath and you place your hand on your chest to feel your heart beating and as you exhale this sudden jolt is going right through you. And once again you understand, this is not something you just run under the cold tap. This  will not go away.

dream

Sometimes the MTX nights are really odd. Last night I was tossing and turning in and out of sleep for the most part and this dream kept on resurfacing where I was giving a speech in front of a huge audience dressed like the guests in the Rocky Horror Picture show, all outrageously fake diamonds and tight dinner suits, while I was standing there in my washed out jeans and R's scratched old Blundstones holding up a gold coated Superman figurine, shouting at the top of my voice, "From the people who gave you Bad Bank and Greed, from the producers of Outsourcing and Landgrabbing, here is their new blockbuster: Vulture Funds!" And the crowd went ballistic. And I woke up in a sweat.

Think I better try and watch more silly romcoms for a while.

the great dentist disaster

After cutting a neat incision into my barely healed gums and flipping back a short section of it, the oral sugeon is using a tiny sharp scalpel to scrape back and forth along the now exposed bone surface of my upper right jaw. With neat little pliers he then proceeds to clip off a small bone fragment that has been  protruding into my gums after all of my upper right molars had been surgically removed during the previous eight weeks, slowly, one by one, due to an infection that had spread from a piece of tooth root left behind by sloppy dentist work a few months earlier. Somewhere along the lines, during the three months with a gaping wound inside my mouth, a nerve was irreparably damaged.

All this happened in the first half of 2007. It took several months and very heavy medication to check the pain to a bearable degree. However, the nerve damaged meant that I continued to suffer from waves of neuropathic pain on and off, more or less all the time, and over the next two years with the help of a fabulous pain therapist/anaesthetist I was able to slowly taper off the medication for that. It sounds gruesome but I should remember that during that time I climbed Mount Etna, did several long-distance cycle trips and translated some of my best work - and lived a wonderful life.

For the last two weeks due to a more extensive case of inflammation of my gums - a side effect of the immune supression - a phantom scalpel has been scraping along the bone surface. Most of the time.

I haven't the slightest idea how to fit all this into my present precarious set up. Sometimes I just want to kick my head against the wall or wail like a wounded dog and stuff like that. But I know that's not going to help. Not one bit.

Breath in.

Breath out.

And pin my hopes on medication once again. May all gods and godesses bless my health insurance and doctors - and R, of course, for holding me in the nights.

small hours

There are times in our lives

when patience is more important than efficiency,

when it is better to cope with pain that to get on with work,

when acquiescence matters more than being in charge,

when it is more important to handle the loneliness of a long night

than to be up and talking during the day.

These are the times when we find out who we really are. 

2 am

S told us yesterday that she has been having weird nightmares recently. So I promptly wake up in the middle of the night in a wave of panic - and need to get my bearings, take a look at my surroundings, try out my voice and hearing, touch R's sleeping body and sink back to sleep.
A huge wave of gratitude and relief for being here and knowing that should S wake up like that she is safe also and has B's sleeping body next to her.

late summer

The nights are getting cold, not that I notice much because I sleep like a log for about five hours most nights seemingly waking up in almost the same position I was in when I fell asleep. Long may it last.

Grapes are ripening, some of the summer blooms are already finished, we are picking tomatoes and peppers and aubergine and radish and sweet corn in the garden.

R is back at work. I miss him badly during the day. But this first week of solitude passed quickly. I try to have a reason to get out - struggling at times - every day.

Today was/is rough, I feel feverish with a beetroot red face and a roaring dizzy head, stiff neck and shaking and shivering in between. But I took the little cat to the vet to get an infected wound cleaned out (the old lady fights a lot) and even managed to translate part of a paper on some novel orthopedic surgical technique and I will charge loads for it once it's done.

Last week I completed my first TED translation and have done a couple of TED reviews. No money but stimulating work at my own pace. Lots more work there for me.

Also had the meeting with the legal advisor regarding disability and pension and my employment situation. He was impressed that I have been called to show my case to an expert panel, thinks it looks likely I'll be granted a favourable disability status (i.e. high which means tax rebates and bargaining power when negotiating to have my working hours reduced)

If ever, if ever...

R has recently started to listen to swing and blues, mostly old stuff. At the moment, he is cooking something spicy and steamy, while the Hep Cat Daddies are belting it out at full force.

high summer

It has become really really hot. After a short trip (on bicycle!!) to the farmers market and a quick cup of coffee we buried ourselves inside the shuttered and closed house. In between rests and rehydration sessions I tried to help R finish up the renovations downstairs.

At midnight temps were still around 30°C and I was stretched out on the patio stones (which were almost as hot as an electric blanket) looking at the stars. Searching for cool and restful sleep we moved around the house with blankets and pillows meeting up here and there. Eventually I slept surprisingly well in the laundry with the door to the garden wide open, vaguely registering the heavy thunderstorm sometime in the early hours and if any stray cats came to visit I never noticed.

There was a refreshing breeze for a while this morning but I almost failed to notice as I was battling waves of nausea and worsening of various symptoms - all the time trying to avoid being hit by this oncoming train called panic. I had a good (?) cry and tried to sort myself out, as in what have we got here: side effects of MTX, maybe a little flare up due to the heat, tension, blocked nose, need to drink more, calm down, breathing, breathing, breathing... and as it happened before this image of A came to mind battling viral encephalitis after her bone marrow transplant thinking of her small daughters and I feel such a miserable pityful whimp - and elated because I am so much alive. So much alive. So much alive.

Expectation

Like a child before Xmas I wake every morning hoping it's over. And after the first joyful moments of expectation I give in and settle for relief that at least I am not worse or that I did have a good couple of hours sleep or a visitor to look forward to.
But hey! At least I am not worse.

spring

Down across the bottom of the garden I can watch a neighbour's forthysia about to blossom. The snowdrops are yesterday's news and so are the crocus. Today's star is the purple pulsatilla. The birds are very busy and my two elderly cats watch their hectic activity with envy. There are tiny dark leaves sprouting low on the valerian plant which must send out a strong message as cats in all shapes and colours come and rub their noses in it.

Last night was rotten. A heavy hand has been pressing onto my chest. Many times I woke with my mouth wide open and dry as a brick, gasping for air. There was no real sleep. Fear of suffocating.
Today is bitter. The roaring in my head howls out, the vice has been turned even tighter and my heart struggles along irregularly. My head is so very heavy and my teeth are chattering. I am nauseous. My hope is for a deep sleep tonight but I fear I'll jinx it if I write this.

This morning instead of breakfast I took down names and phone numbers of female psychosomatic experts within reasonable distance and phoned about 10, one after the other, looking for an appointment. This was urged by lovely Dr F yesterday. I left my name and number on numerous answerphones, got a couple of sorry-we're-full messages back and two appointments for next week of which I have to cancel one. And I have to postpone the ENR appointment again. I hate having to make these calls.

It's hard enough trying to get there.

It would be so great if someone could help me organise all this. It is such hard work.
Then again I try hard to convince myself: You are not as helpless as you think. You are stronger than you think you are. But it's hard. I want to fall back into a deep sleep for a long long time, switch off my mind and only take in glimpses, short presences, no more thinking please ever.

impermanence

I live in a rainbow of chaos.
"It is important to understand" - but how and why is it so damn hard! - "that impermanence is not a negative aspect of life. Impermanence is the basis of all life. If what exists would not be impermanent life could not go on", says Thich Nhat Hanh who must know it. But he is a smooth and careful Buddhist monk and I am a chaotic control freak with multiple health issues spinning me out of gravity.
At least I slept a solid night's sleep even if waking up meant facing the same intense symptoms as yesterday.