02 October 2015

01 October 2015

an exercise in futility

I never had much tolerance for moaners, people who throw their symptoms around like pearls and who seemingly spend most of their time concentrating on how miserable and unfair life is.

I still don't and I try hard to not do this in real life. 

In real life. 
In real life, I never lose my cool. I share jokes with the experts about the silly bruises on my body from the injections, the way my hair blocks the shower these days. I pretend that I am pragmatic, that I understand the science behind it all, the way the drugs interfere and reshuffle what my body has messed up. I pretend that I know about the importance of sleep and rest and keeping calm.  I play the games of relaxation and meditation and mindfulness and sometimes I even start to believe in their powers. I walk - carefully and slowly - through the garden making an effort to observe and delight and Be Here Now. I try hard to let go and allow my body and my mind to fuse into a meaningful blissful presence regardless of whatever. To admire the dynamics of my atoms swirling according to some deeper cosmic order/chaos.  (I know. Bear with me.)

But blogging? That's for letting it all hang out.
That's where I am the miserable cowering animal. 
Where I am mad and furious - energy permitting - at the unfairness of it all. 
Where I admit that I pace the garden like a caged animal ready to rip and tear. 
Where I roar that I am done with chronic illness, done with patience, with acceptance and all that crap. 

After a while even that becomes tedious. And sometimes, somewhere between and below all of that, the moaning and the whimpering and the distancing and the expert talk, I get a tiny glimpse of something pure and whole and complete and I try to touch it but then it's gone.


29 September 2015

waiting for life to seep in again as it surely will

27 September 2015

We are all in some way beggars in this lifetime. We are at the mercy of others and at the mercy of what will happen to us. Of course, we can chose how we respond to it, but we are always praying for something to happen or not happen in one way or another. We come with these empty bowls and there’s a great deal that is given to us … We are all vulnerable to whatever might befall us.
Ellen Bass

I have no patience right now.  No desire to wait this out. I wake up in a sweat, desperately trying to find the switch that gets me out of this. Fighting another wave of nausea, but too exhausted to panic. Maybe all will be well or maybe it really doesn't matter. Shreds of dignity here and there but barely so.
Oh heavens. Tough shit.

24 September 2015

Yesterday and today

You wake up early, long before dawn. 
You turn onto your right towards the open window. Only, there is no window. 
You think you are in a dream still. 
You get up - in a dream? You want to go out into the hall but there is no hall. Not where you think it should be. 
You hold onto a door frame and you cry out, where am I? Can someone wake me up?
Then you collapse. 
You are dimly aware of the sound of vomiting, the jolly voices of the paramedics, hi what are you up to so early?
You are asked to open your eyes and you briefly try to concentrate on what maybe is the face of a tanned young doctor with long dark curls floating around her face. But everything is turning turning turning. Faster and faster and your head wants to explode with a roaring pressure. 
You can feel a soft rain falling on your face as you lie curled up somewhere outside on a stretcher. You try to apologize to the jolly paramedics for vomiting all the way to the hospital.
You can hear R somewhere in a distance and of course you start to worry that he will be late for work but the world has lost all boundaries and for a short moment you feel the excellent beauty of floating and you let go of any striving. 
You close your eyes and all is amazingly and exeptionally as it should be.
Many hours later you open your eyes again to the tedious and sterile reality of a hospital room. 
You watch the cortisone dripping slowly into your vein and you know you are in for the long haul.

22 September 2015

30th August 2015, Budapest Keleti railway station, picture by Zsíros István

the story is here

And this is the soundtrack that started in my head when I saw it:

20 September 2015

19 September 2015

The other day we stood and looked out into the rainy garden.
We looked out in silence and autumn started to sneak in, right there before our eyes. The way it looks when you squint and try to block out the green and lush bits. It felt like one massive sigh.

Later, on my way through the traffic I almost cried. There was a sad song on the radio. It rained. Suddenly, this wave of self pity washed over me and I almost shouted, I was so angry. Give me one day without symptoms, you shitty universe.

Back home, I walked into the kitchen and R stood there, frozen. I just heard live 
footage from the Hungarian border and there was this piercing cry from a baby. They are using tear gas against babies. We just stare at each other.

At night, I am holding a child, a sleeping toddler in my arms. That smell, so close, so soft. I try and keep very still, I know she will disappear when I move and wake up.
In the morning R tells me that in his dream he was holding S in his arms, a tiny S, crying and tired, until she fell asleep.

13 September 2015

Human beings have hope built in. If they weren’t hopeful they would have died out a long time ago.

Margaret Atwood

10 September 2015

Last night we got an email from friends of friends asking for any extra bedding as more than the expected number of refugees had arrived at the former school which is one of the first call places here where incoming refugees are  given shelter. So we drove out into the night with a car load of blankets and duvets and a big box of cookies and whatever we could find in the spur of the moment. The security guard helped us to unload and eventually, a few young men in shorts and T-shirts approached us with shy smiles. R started talking to them, where are you from, what would you like to do next and so on.  I was at a loss for words, all I could say was, welcome and I hope it will all work out for you.  And then we all cried a bit, the security guard incl. while more people arrived, my fellow city people, young and old, carrying more bedding and blankets and we quickly drove off. Today, people have been asked to not bring any more as there is too much already, food, bedding, toys, bicycles, medicines etc. and volunteers are now put on waiting lists. Still, it felt like nothing, a car load of bedding, and it is nothing and yes, I realise that my government has ulterior motives. Germany has the world's lowest birthrate and the industrial sector has been crying out for skilled and unskilled workers. Add to this the number of children who will be educated and trained here and do your maths. But at the same time, we - and I say this with a swelling heart and a lot of emotion - we Europeans are discovering humanity. To some extent, enough to make me weep every time I watch this video. If it will not open below, click on this link.

07 September 2015

This week I will meet the HR woman who deals with people like me, people with too many sick certs but who cannot be fired (just like that). She is in charge of this fabulous program which is helping people getting back into work after a long illness. I sent her a short rundown of my state of being, aka the volcano scenario, and we shall see. An exercise in talking at cross purposes, something about two parallels never meeting etc.
Meanwhile, I am holding my breath (in short supply as it is) waiting for yet another bunch of lab results, while working up the courage to make that phonecall for the appointment to have all sorts of stuff stuck into my throat, i.e. a laryngoscopy. Silly me checked it out with dr google and it made me gag. Way to go if you want to have an even hoarser voice than the one I have now.
As for September? Windy and rainy all of a sudden. Last week's heat has evaporated. The evenings are getting darker and I am reminding myself that this is just the way it is. Perfectly normal. Nothing to get worked up about.

06 September 2015

no one leaves home unless
home is the mouth of a shark

you only run for the border
when you see the whole city running as well
your neighbours running faster than you
breath bloody in their throats
the boy you went to school with
who kissed you dizzy behind the old tin factory
is holding a gun bigger than his body
you only leave home
when home won't let you stay

no one leaves home unless home chases you
fire under feet
hot blood in your belly

it's not something you ever thought of doing
until the blade burnt threats into
your neck
and even then you carried the anthem under
your breath
only tearing up your passport in an airport toilet
sobbing as each mouthful of paper
made it clear that you wouldn't be going back

you have to understand
that no one puts their children in a boat
unless the water is safer than the land


Warsan Shire

05 September 2015

03 September 2015

For more than two years we have been fed horrific footage from Syria. On our screens, we are shown what a terrible place Syria has become. For more than two years, we could have tuned into expert discussions about who and why and what.
All, ALL!, agreed that civilians are suffering tremendously and beyond our understanding. But for some reason nobody ever imagined that people who have suffered so much will need to escape, that Syria is no safe place for children, for families, for anybody. It was ok as long as they squeezed into the by now hopelessly overcrowded camps in the neighbouring states of Lebanon and Jordan. These are UNHCR emergency camps and for anybody who has never seen one: tents meant for emergency not for long term occupation in all seasons. Anyway, that was ok with us, watching from our comfy European homes. But since these desperate people have started to look for refuge here with us, we quickly shut any legal and safe route, we deny them visa, we will not permit airlines to take them on board, we force them in the hands of smugglers who put them on unsafe boats, into overcrowded vans and who drop them in the middle of nowhere or on the hard shoulder of the motorway. We do all this to protect our homes and our comfy compassionless lives.
All morning yesterday at the Serbian-Hungarian border, I saw Syrian parents determinedly walking with their children – trying to remove them from the horrors of the slaughter in Syria, which have been allowed to continue for four years, and to the promise of security in Europe. Those parents are heroes; I admire their sheer determination to bring their children to a better life.

Please read more here.

02 September 2015

Today, I had four very pleasant taxi rides between two railway stations and one clinic and our one and only home. It cost a bomb but I only do this twice, maybe three times a year. I swear that the taxi drivers all somehow guessed that this was a difficult day for me and they all tried to cheer me up. 

The Kurdish one during the 8:30 am traffic jam demonstrated his newfangled shiny purple reading glasses which fold into a small square and pop up just like that! He also told me that organised religion was the root of all evil and that we need to teach our kids to always keep their hearts and minds open. I totally agreed and it went from there. When we finally reached the station, he thanked me for a lovely time.

The Azerbaijani grandfather who dropped me at the clinic three hours later sang me the wedding song he has been rehearsing for his youngest daughter's wedding to a German policeman next week. It was a very long song and as I sat there watching him with his eyes closed and head thrown back, the clouds opened and all was shiny and golden sunlight around us.

The young Afghan who drove me back to the station offered me a cup of chai from his elaborately decorated flask and it was very very sweet, both the taste and the gesture, because it stopped me - just in time - to fall into that deep miserable hole of self pity and why me and all that stuff.

The last trip back from the station was a short German lesson because the Iranian driver had only arrived four months ago, for love, he told me, and so we went through a few phrases on his language app and after I had paid him, he showed me his young wife and his tiny baby daughter, gently wiping with one delicate finger from one image to the next on the surface of his phone. I would have asked him in for tea had I not been so exhausted but I took his card and promised to call him for my next trip, silently hoping that by then he will have passed the language exam to continue studying medicine.

On the train journeys I met:
A very heavily pregnant Japanese woman living in Cologne on her way to meet her parents at the airport, preparing herself for the inevitable onslaught of the expected Japanese misunderstandings regarding the European approach to birth. She was very flustered and I hope she and her parents made it home in time.
A former heroin addict who found jehova and the joys of keeping fish in various types of aquariums (aquaria?). Well, I now know a lot more about hard and soft water and African perch and why zebra fish prefer the company of neon fish or maybe not. 
About 20 preschoolers or their way to the Roman museum for really important stuff as one of them informed me. He also told me that under no conditions should I try and swim in the river because of the big strong currents and I promised that I will remember his advice. He then gave me a grape. 

With all this social encounter going on I managed only one picture. I didn't get that right, it's one river bend before the Loreley (yes, the Germans write it with a y) but it looks almost the same, only there are more tourist boats and flags. 

I also met my lovely immunologist and she did not like the look of things at all. Plan B has not worked out it seems, so it's Plan C for eight weeks with Plan D lurking in the background. Plan D is not nice, so keeping all fingers crossed for Plan C to do wonders. Eight weeks.

01 September 2015

At the risk of coming across all melodramatic and absolutely irrational, after all it's raining heavily (and there is a damp patch in the basement that worries me still regardless of the reassuring statement of our clever builder friend) and my balance organs, those tiny spirals inside my inner ears, are throbbing with the effort of keeping my world at a somewhat even keel, there is a tiny light at the end of one of the dark tunnels I have been staring into. Or have been staring at me? Anyway, it's really all down to maths. If 800,000 people fleeing war and persecution and poverty and hopelessness or whatever are coming to Germany, that's 1% more in a country with a population of 80 million wealthy people. Get that in your head you scaremongering xenophobes.

I would love to embed a beautiful video but I fail, so please click here to watch. This video was made by a Syrian refugee arriving with a busload of other Syrians in a small (and very conservative) German town where they have been given initial shelter. See what I mean? Yes, we can.

The music video is an extra.

30 August 2015

. . .  (migrants) are “exceptional people”. Over centuries, . . . , it has been immigrants and refugees who have been part of the alchemy of any country’s success: they are driven, hungry and talented and add to the pool of entrepreneurs, innovators and risk-takers. The hundreds of thousands today who have trekked across continents and dangerous seas are by any standards unusually driven. They are also,  . . . , fellow human beings. To receive them well is not only in our interests, it is fundamental to an idea of what it means to be human.

reading in the Observer today

20 August 2015

My sister is coming for a short visit in 48 hrs and I just finished cleaning the cooker. I made a list of what I need to do next: bathroom, guest beds, patio, lots of deadheading of flowers in the garden, washing the kitchen floor and getting rid of as many spider nets as possible. There will not be enough time to weed the flower beds, clean the fridge or the windows. Then there's shopping, she has celiac disease, at least I know what not to get. The last time she came, she called out as she walked into the house, aah that peculiar smell, like mould in Ireland.
As if she knows anything about that.

18 August 2015

Music for a massive gum inflamation, I wonder what keeps my teeth in place. There is nothing nice about the taste of your own blood. I have tried. Believe me.

14 August 2015

resignation vs acceptance
maybe I am not wise enough or not clever enough or maybe it's still too early but really, what's the difference anyway
someone who has just been diagnosed with my disease (it's getting easier to write that, at least) contacted me and after I had offered her my personal spiel on it she couldn't find enough words to praise me and how I cope so fantastically and how positive I am and so on I almost shouted at her to shut the fuck up
but instead I put on my generous smiling face and walked away and into the sunset at the end of the rainbow
thinking this is getting out of hand

Summer is over. We are back to work and those brief exchanges of when will you get home over breakfast. But outside of course, it's still summer, heatwave after heatwave, breaking one record after another.

I would like to be at the sea right now, running into the surf.

10 August 2015

. . . the lesson of Lacan is, living by your wants will never make you happy. What it means to be fully human is to strive to live by ideas and ideals and not to measure your life by what you've attained in terms of your desires but those small moments of integrity, compassion, rationality, even self-sacrifice. Because in the end, the only way that we can measure the significance of our own lives is by valuing the lives of others.

08 August 2015

What is the most important lesson life has taught you?
That humour is the best answer in times of deep sadness.

Johnny Rotten/Lydon in today's Guardian. 

07 August 2015

Last week, my father explained to us his strategy for remaining healthy. When you don't think about it, he told us, the symptoms just go away. My brother sighed and later on, long after my father had driven away in his big silver car, we agreed that while he is doing quite well - considering his rapid weight loss and the blue-black bruises on his hands and shins - he must be scared shitless. Don't mention the d-word, my sister added. Not allowed.

Meanwhile, it seems that sitting seven hours in a comfortable air-conditioned car, looking at other cars, trees, hills, rivers, wind turbines and distant church steeples, while R drove skillfully and generally not too fast - it seems that this was the most exhausting thing.  So much so that I am reduced to lounging on horizontal surfaces, trying not to fall asleep. My latest lab report has arrived and I am completely healthy apart from one or two things. Nevertheless. Oh that word. Nevertheless, I have received orders for more tests and whatnot's. One of which took place early this morning and because I was only half awake, this carefree version of myself hopped on my bicycle for the half hour journey along the gorgeous river. By the time I got home, well let's say, I was not my usual youthful self. Oh dear. I had completely forgotten about that business with my lungs. Still, I am confident, sort of, that there is a plan B yet to be discovered because, no way will I give up cycling. No. Way. 

It helps, massively, to remember that less than two days ago, we swam in this glacial lake, morning, noon and evening.

03 August 2015

One of my grand nieces had golden sandals. When I told here that these were the best and most beautiful shoes in the world she decided there and then that we must climb trees together. We had a fabulous evening.  

The Alps always sneak up like the biggest surprise of all. Suddenly we are surrounded by towers of rocks and fog. And then the lake.

30 July 2015

There are . . .  no such things as curses. There is luck, maybe, bad or good. A slight inclination of each day towards success of failure. But no curses.
Anthony Doerr

At this stage I wouldn't even know the difference between success and failure. But I accept that my days are not and never haven been cursed. Today, I am mostly staring into space and wishing there was a way to compare the person I seem at present with the one I was 12 months ago.  My own control study, complete with Tables and Figures and the statistical work up. Then and now. Trying not to hiss at myself, what the fuck has happened. You call this energy? (The Alpine lakes are looking very far away at this stage.)

Still, R has asked me politely to drastically reduce my use of swearwords. We discussed it for a while, politely, and agreed that a short shout of fuck or fuck this is acceptable when, e.g., you drop the honey jar on the kitchen tiles because due to mysterious circumstances the lid was not screwed on tightly or when for unknown reasons beyond your control the handle of the compost bin breaks before you reach the garden (i.e. spilling the contents on the sitting room carpet) and, extending beyond the gravity scenario, when computers/printers/scanners/cell phones etc. act up. Which is where he has on occasion uttered the odd curse. God forgive him.

When I first met R's parents, these two very mild mannered and generous people who taught me that a stranger is always a friend you haven't met, I was pretty arrogant. I think so now. They probably thought so, too, but their hearts were so much bigger than mine was then. I took me several years of proper family dinners (all the trimmings and side plates!) and hideous parlour games and watching soccer or Wimbledon on tv together before I realised that they never ever used a swearword at all. At all. I mean, they exclaimed all sorts of stuff, holy mackerel, holy josephine, cripey, crispy crospy holy malosky and so on, while there I was all, jeez this and god no that and oh shit all, over the place. Of course, R doesn't curse either and now, after 36 years, he tells me. Jeez.

Lifelong learning.

28 July 2015

I have been grounded by my GP once again and tomorrow she wants to do the full check-up whatever that is. I am due at 9 am without my breakfast but with my urine sample. I feel like a fake. Or: I wish I could feel like a fake. There is hope for a simple explanation but also not denying the fact this year has been rather shitty and my sick days are mounting up. Already got one letter from the personnel dept. offering me assistance with occupational rehabilitation. I got such a fright, I tore it up and stuffed it deep into the kitchen bin way below the yukky bits so that I wouldn't even attempt to fish it out again. 

Instead, I doze or try and follow the plot in True Detective (I have no idea what's going on but Colin Farrell is doing a great job with the eyebrows). Occasionally, I freak out and wash the kitchen floor or clear away the stuff in front of the damp patch on the basement wall that looks so much bigger in my imagination than in reality. Still, there it is and we are arguing about its significance and whether the house will start to subside or rot away underneath us. We disagree wildly here and no longer communicate about it face to face. Instead, we send each other emails with drastic illustrations (me) or silly pictures (R). 
Looking after an old house can be quite a job, a bit like looking after an elderly overactive relative.

Anyway, after every bout of activity I am met by what my GP calls a significant loss of physical energy and it takes me a while to un-wobble my knees, so to speak. Which admittedly is a bit weird but - see above - hopefully with a simple explanation. I try not to think about it too much and spend my sleepless hours listening to our new neighbour across the road who sits outside at night skype-ing with someone faraway speaking foreign languages in a deep baritone. There is occasional laughter but he sounds lonely. I contemplate all sorts of explanations and even consider inviting him over (this is not the thing to do here, believe me) but in the mornings, his blinds are down, his doors are shut and I am not sure. Maybe it was just a dream.

Tomorrow, the second set of our three sets of summer visitors is arriving, probably full of energy. Theoretically, we are going to do all sorts of stuff. Including a very long scenic drive on Sat. to celebrate a birthday followed by a week swimming in and frolicking around clear Alpine lakes in Austria. Theoretically.

Meanwhile, the garden, oh the garden is bliss. 

22 July 2015

the terminator speaks up

If action is not taken immediately my grandson will live in a world suffering heat waves, severe droughts and floods. Cities like new York and Venice will drown. We are on the brink of catastrophe but the solution to the climate crisis cannot be left to governments alone ... People are taking the lead and demanding change. We must not fail them.

Arnold Schwarzenegger at the world’s first summit of conscience for the climate yesterday

20 July 2015

one week in the mountains way out east

It did feel odd, strange, a different place. Maybe I am super sensitive with all the negative media (xenophobia, racism, the attacks on asylum seekers etc.) but this was not the Germany of my childhood. And not just geographically. Unfamiliar.
Very hot, too many detours and well, my father knows how to lecture. Incl. trick questions. I managed to not disappoint, rattled off names and dates of various emperors and battles, after all he sent me to the proper school. If only for this reason it seems. To regurgitate history lessons.
Some of it very pretty, mostly the doors and the gardens.

16 July 2015

gone east

Stolberg, Harz mountains

Day three of travelling with my 86-year old father. Already, I have greatly disappointed him. It all started out quite well despite the fact that we arrived late (43 min!). As I got out of the car I could hear him clapping his hands all the way from his observation post in the deep armchair of the hotel lobby and before I had climbed the stairs, I could see the glee in his eyes. We continued from there. I tried to remain patient and all but some time after dinner last night I almost lost it. There are times when life seems too short to debate the finer details of classical Greek lyrics. Debate is not exactly the correct term either. I could see myself shrinking back into my angry teenage self, the one I thought I had left behind forever about 40 years ago. Silly of me, I know.
That and feeling unwell. I blame the heat for the time being and have spent the day in this very comfortable hotel room bed dozing and occasionally exchanging messages with R who is following him around and on top of mountains and steam trains and much more I am happily missing out of.

Still. This could be his last summer. It doesn't feel like it, his energy is overpowering despite the fact that he hardly eats or drinks and the condescension in his voice is as sharp as ever.

always running behind him

12 July 2015

Last week, a colleague told me that she will not eat sugar for one month to purify her true self or something like that. She said we all need to cleanse our bodies every couple of months. It vaguely reminded me of the way R's father explained confession and sins over Sunday dinner so many years ago, when he was still hopeful to have me properly baptised and saved and all that.

I like the idea. Cleansing sounds good. During my final exams at uni, I fasted for 16 days, just tea and a bit of carrot juice. I wanted to impress this guy, a former bf who was studying medicine, he called every day to cheer me on and check my blood pressure. Much later, he confessed that I was one of 12, that I had been part of a study for his PhD thesis. His experimental design was a bit flawed regarding the informed consent but I remember feeling great, apart from very cold feet and a furry taste on my tongue.

Every morning I take five different medicines, two of which I also take every evening. On Tuesdays, I take medicine number 6, on Thursdays, number 7 and on Friday, I add number 8. I keep the crumpled up instruction leaflets to each of them in a box somewhere. Early on, R offered to make a spreadsheet of all the possible side effects. I begged him not to.

But I wonder. What if I just stop them for a month to purify my true self. To rediscover my body raw with illness, to watch what happens, to find that thin line again, between what's left of myself and being ill.

I mentioned this to one of my learned friends, someone with years of medical research behind her. I told her sort of by-the-way, as if I was telling a joke. I even laughed. She just put her hand on my arm to stop me and silently shook her head.

So yes, I hardly eat sugar anyway.

11 July 2015

01 July 2015

It's early morning, very early morning. When you are weaning yourself down to the lowest possible dose of cortisone, all according to the carefully designed protocols, sleep is more of an irritation than the restorative deep space it usually should be. That and the heat. And the man on holidays while you slave away at your desk. 
You make a cup of tea and walk around the garden. Of course it's all gorgeous, dewy innocence,  the first rays of sun so gentle, so benign, not a hint yet of the merciless heat it will throw down in maybe two, three hours. The garden smells like the boudoir of the queen of Sheba. Just out of interest and maybe for the Guinness book of records you start counting the flowering lilies (in myriad colours) and you stop when you reach 85 or maybe 95. He planted them, that same man you got so mad at last night because. Because. Because he was so healthy and fit and jolly after his glass or two of some stunning red wine (you guess it tastes stunning but of course you don't know because your drugs are prescription medicines and while you are required to combine all kinds of chemicals to remain human, alcohol is not permitted in the mix)  and he never even guessed the urgency in your eyes when you asked for whatever it was you asked for because you knew if you could not get this or that done now you would not have enough energy later on. Or something other, all so incredibly unfair and why-me-ish. That endless game.
And so here he is, all fresh from his sleep, ready to cut the hedge on maybe the hottest day of the year, the century. We're ok love, he reassures me.

29 June 2015

I just watched this short clip in the hope of hearing something positive. Not really.
Instead, I have been carrying this quote below inside of me like a heavy dark stone:

In a recent interview the Nobel prizewinning psychologist Daniel Kahneman, the leading scholar of cognitive biases, was asked about our brains’ limitations when it comes to understanding the dangers of climate change. “I’m not very optimistic about that,” Kahneman replies, despondently sipping tomato soup. “No amount of psychological awareness will overcome people’s reluctance to lower their standard of living. So that’s my bottom line: there is not much hope. I’m thoroughly pessimistic. I’m sorry.”

28 June 2015

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.

26 June 2015

the lungs

Breath from The Mercadantes on Vimeo.

Another lung function test, another diagnosis to accommodate into my fabulous life. Shit happens. Summer is gorgeous.

23 June 2015

Watching footage of desperate migrants from the illegal camps near the Eurotunnel in Calais trying to board lorries, reading the report from a commander of an Irish navy vessel on their latest rescue efforts in the Mediterranean Sea, listening to one of my colleagues arguing that basically they are all scum, only looking for free welfare. I want to hang my head and cry. Seriously.

Listen, I want to shout, we are all descendants of one tribe, one family. This planet is our home, not yours alone. But of course, it's more complicated than that. Obviously. It must be. Once again, I am too naïve to get the point.
That's home. That's us. On it everyone you love, everyone you know, everyone you ever heard of, every human being who ever was, lived out their lives. The aggregate of our joy and suffering, thousands of confident religions, ideologies, and economic doctrines, every hunter and forager, every hero and coward, every creator and destroyer of civilization, every king and peasant, every young couple in love, every mother and father, hopeful child, inventor and explorer, every teacher of morals, every corrupt politician, every "superstar," every "supreme leader," every saint and sinner in the history of our species lived there--on a mote of dust suspended in a sunbeam.

The Earth is a very small stage in a vast cosmic arena. Think of the rivers of blood spilled by all those generals and emperors so that, in glory and triumph, they could become the momentary masters of a fraction of a dot. Think of the endless cruelties visited by the inhabitants of one corner of this pixel on the scarcely distinguishable inhabitants of some other corner, how frequent their misunderstandings, how eager they are to kill one another, how fervent their hatreds.

Our posturings, our imagined self-importance, the delusion that we have some privileged position in the Universe, are challenged by this point of pale light. Our planet is a lonely speck in the great enveloping cosmic dark. In our obscurity, in all this vastness, there is no hint that help will come from elsewhere to save us from ourselves.

Carl Sagan

21 June 2015

today's science lecture

don't worry, it's subtitled

19 June 2015

In order to test my stamina and the recovery status of my impaired balance organs I decided to clean R's study. Well ok, it just happened, I didn't plan it. As I was opening our insurance folder, I absentmindedly brushed away the quadruple layer of dust on the shelf and before I knew it, one hand was holding a bucket of water, while other one was washing one of the slightly immodest Kenyan ebony bookends - one of the many souvenirial artifacts so skilfully put on display here. Hence, one thing led to the next etc.

The study is a small room of pleasing rectangular shape, facing south and overlooking the garden. For probably another two years, the wall paper may be considered white in colour and the deep rich green of the organic linoleum floor reflects the mindset of dedicated nature lover, an image that is often reinforced by an urgent reverberating sound not unlike an approaching small herd of, say, wildebeest but which upon closer acoustic inspection reveals itself to originate from the rollers of a humble office chair. It is furnished in R's unique style, i.e. start at the bottom right hand corner and work your way up over the years. To the uninitiated viewer, it may indeed look somewhat messy or even haphazard and careless. But once you allow your visual capacities to let go of western cultural limitations - all those sad preconceptions and prejudices fostered by ikea and Martha Stewart - the open and indeed anarchic spirit with its garage-like ambiance will hit you with liberating vengeance.
As it has been sufficiently proven in recent years that most men suffer from refrigerator blindness, (aka selective loss of visual acuity in association with common foraging behaviour) and that this functional blindness extends to the display patterns applied in studies and esp. on large desks,
I was extremely careful to maintain the underlying order of all things with the obvious exclusion of recent nail clippings and about a car load of dust mites. 

But just in case, I send him a careful message, beginning with "do not be alarmed" and ending with the rather more cheerful note of "I am confident that you will be able to cope" - to which he just replied, "cut the sarcasm". 

18 June 2015

about the cats

Since you've been asking. 
We have had a couple of cats to date but we are cat-less at the moment - or as R calls it, cat-free.

First, there were Kieran & Donal, two black-ish toms, wild and vicious. The idea was that they would keep down the number of rodents in the basement of the big crumbling mansion that was our communal home in the south of Ireland - they didn't or maybe the rodent population was too big. We were a very poorly organised crowd with endless house meetings and an activist agenda but little time for pets. S would occasionally try to pull either of the two misfortunate animals by their tails up the grand staircase. As a result, both cats went into hiding when kids were around. And since I spent most of my time with S attached to me, I had little cat interaction. Before you think too badly of us, somebody did take care of them, incl. food and vet etc. But I have no memory of what eventually happened to them.

When we lived in paradise, we soon found out that local people disposed of kittens the same way they disposed of old car batteries or broken transistor radios. Also, the kids in our neighbourhood liked to play with kittens the same way kids in Europe play with teddy bears. This being a small island, cats - and dogs for that matter - are highly inbred with a poor life expectancy. 
But all this could not stop us from saving Minnie from a fate worse than death, or so we thought. Yet, Minnie was a lost cause. Not only did she pass on to us a huge variety of parasitic worms, she also made it her aim to attack us at any given moment, especially while asleep. It's not easy impossible to cat proof a small bungalow in a tropical location. Take my word. I am not going to tell you about Minnie's fate. But we had a couple of really nice dogs there.

Back in Europe, things improved. We got Molly. We picked her up from a friendly home where she had been the tiny runt of the litter and for the first three years of her life, she was an indoor cat in a city apartment. When not climbing up the xmas tree and sitting on top of the tv set with her tail swishing across the screen, she was polite and generous. And shy. 

Then came Ronia. She was an emergency. Friends hat discovered a tiny abandoned kitten, almost dead, in their barn and, well, put two and two together. We did. But those two hated each other. From day one and for ever. Lucky for them and for us, we were about to move into the house with the garden in this quiet suburb with cat-friendly streets and neighbours. Plenty of space to get lost in, trees to climb and be unable to come down from, mice and moles and squirrels to present as early morning gifts and so on. Soon, both cats had developed into fierce outdoor creatures with a busy nightlife away from us, winter or summer. Molly became huge and pompous with an occasional mean temper. Ronia was always slightly daft, and I mean this in the nicest possible way.  
I believe they were both extremely happy.

Molly died four years ago at age 16, Ronia was 17 years old when she died last November. We gave away all the cat's things only last month. But the basement doors are permanently fitted with cat flaps. You never know.


15 June 2015

I showed this to R because it's the 150th birthday thing all over the Irish media and also because, well there is a fire in my head at the moment.

So, he watched it with the usual slightly bored yet generous patience he reserves for people who go all ooh and aah and generally fall over themselves gushing about Ireland as if it was a place of poetry and music and artists, many with red hair etc. But at about 1:38, he got all excited. Oh look, he called out, Ben Bulben in winter. Must climb that one again.

13 June 2015

W B Yeats, 150th birthday today.

Come away, O human child!
To the waters and the wild
With a faery, hand in hand,
For the world's more full of weeping than you can understand.

12 June 2015

This much I can do:
sitting outside with a cup of early morning tea
listening to the birds
waiting for the day's heat to build up
reading for a while
changing the sheets just because I want to and feeling like a fool afterwards, shaking and sweating
eating fresh strawberries
missing my cats
waiting for the thunderstorm and the heavy rain supposedly hitting us in a couple of hours

Music and talking is not so easy but I watched tv last night for a while, some drama about the Danish Prussian war, excellent acting I have been told, it just went past me in a blur of beautiful images. For that I can recommend it.

I am still walking on water, waiting for the swells to calm down, hoping to reach steady ground eventually.

10 June 2015

elephants in the forest

First, I think it's a scam. Then I want to shout. Don't. No, hey wait! But my voice doesn't seem to work and I am sucked out through the open door of the plane and now I am in free fall, rapidly spinning through cold air, hot air, sluggish fog, icy wind, my tears freezing on my cheeks, my stomach churning in protest, shrill deafening noises ring in my ears, the air smells of burning pine needles.
But suddenly I can see my hand resting on the handlebars of my bicycle, the forest in all its deep greens around me, the sun is breaking through a small opening and shines straight onto a small pond, birds singing around me. I don't know where I am or what has happened and I feel the noise growing again so I take a quick picture. Frogspawn on an almost dried up forest pond.

How calm, how beautiful, summer in the forest, I try and convince myself. But now a herd of noisy elephants is racing towards me, I can taste the dust on my lips already and I fall on my knees, cradling my head.
Later on, while we watch the slow drip of a massive cortisone infusion, the doctor still cannot believe me: you came here on your bicycle? I must have, I can see it locked outside the surgery.
And much later, after R has smoothed the sheets, opened the windows wide to let in the sweet evening air, after I tried unsuccessfully to keep down a bit of dry toast, panic seizes me like a force I thought I never knew.

08 June 2015

passing the buck to future generations is not going to solve this

We've been had, sarcasm dosn't even cover it. 85 years? You must be out of your mind.
Who are these people? What planet do they live on?

05 June 2015

There is a man downstairs painting my kitchen walls. He tells that me he lives in a tepee during the summer. Yesterday, he showed me the scar on his neck where he had a tumour the size of a grapefruit removed last year, 38 radiation sessions. But you know, he said, I just got back onto my horse - which in his case is an imported US van. He smells of woodsmoke and sings church hymns while he works.
His daughter, he informs me, is afraid of the open skies and refuses to visit him.

Meanwhile, my daughter calls and we talk for a long time about everything and nothing. When people ask me how I manage what with my only child living so far away, I try to come up with a clever answer.  Because honestly, I can't tell you. What would it be like if she came through this door from time to time and put the kettle on in the kitchen? Would we talk about the same things? Would we have a different relationship? No idea. When I am awake, I know she is asleep and when she is up and about, I am asleep. We meet at the edges of our days. She is always 12 hours ahead of me. If in rare moments, I need comfort, I know she is not alone. That she is married to a wonderful man.

Do I miss her? Complicated. I just love what she is doing, has done with her life. I could not for a second ask her to abandon it. And no, we have not driven her away. If anything, we encouraged her.
This is where most people start shaking their heads in disbelief. I like to think she had a great childhood, what with the different countries and continents and schools and all that chaos. Or even despite of that. I know I made a mess of being a mother, many times. I think we all do. I told her that much.

Watch us, a small family of three, two adults, one girl, so close at times, we could walk with our eyes shut, holding each others' hands. One tiny shift of chin, one short stare and we know what's up. Even via skype. Beautiful and scary at the same time. We will never be without each other.

I can tell you this: she knows how to cook, grow food, swim, cycle, teach yoga, climb mountains, manage entire government departments, speak diplomacy, she is a ferocious reader, loves fiercely, and she has never ever been afraid of the open skies.

I could not ask for more.

She'll probably give out to me now for telling.

03 June 2015

Tomorrow the very skilled man is coming to paint the walls downstairs, some of them. It would make sense to have all of them repainted but we are finicky and stingy and who cares anyway.
It coincides nicely with the heatwave followed by thunder storms with heavy rain predicted for the next couple of days.

This morning I cleaned away various flora and fauna behind the shelves and sofas and where the pictures were on the walls and of course behind my great grandmother's sideboard. The spiders etc. all ran like hell and I hope they found homes elsewhere by now. The ants, I'm afraid, didn't make it. I could have rolled the dust bunnies into a large ball and spin it into gold but the hoover gobbled it all up.

Next week, after R will have perfectly reassembled the shelving, my task will be to put what feels like thousands of books back into some order. I am very tempted to chuck out most of them. I know, I know, books are holy and so on, but some are not so holy anymore and it's time to start clearing spaces, unloading my baggage so to speak.

Last night I foolishly started to calculate our meagre pensions and once again stared into the dark tunnel of poverty. Which is really quite arrogant because we will find a way to make ends meet, surely. And now my mind just brought me back 35 years when we were clearing out the attic room in Heidelberg. We had lived in this tiny room with its very crooked walls for almost a year while I was trying to figure out what to do with my university career and R was getting restless. In the end and for lack of options and cash, we decided to free ourselves from the shackles of careers and academia and start a new idealistic life in Ireland - or something like that, it was a long time ago, we were young and foolish then.

As a start, we decided to give away most of our earthly possessions - because hardly anybody wanted to pay money for it. The rule was: keep 20 books, 10 records, one bicycle and one rucksack with clothing and essentials per person. To this day, I still regret the 10 records rule and miss my Joan Armatrading and Cat Stevens collection and the fabulous Joni Mitchell live set, oh, and John McLaughlin's "Electric Dreams".

So we'll see what will happen to the books next week.

01 June 2015

the question

When the great ships come back,
and come they will,
when they stand in the sky
all over the world,
candescent suns by day,
radiant cathedrals in the night,
how shall we answer the question:
What have you done
with what was given you,
what have you done with
the blue, beautiful world?

Theo Dorgan

From this online collection: Keep it in the ground, a poem a day. There are 20, but try and don't gobble them all up at once, they will linger.

31 May 2015

the view from the kitchen window today

and the dining room

I am pretending to be perfectly healthy.