18 October 2017

A genuine warrior has a lot of resources within herself, resources that are always there. Although you feel that you’ve run out of ideas, you’re not really running out of anything. You’re being attacked by your own cowardice. You can go beyond that and find further resources within yourself. Banks and banks of inspiration unfold constantly.

Chögyam Trungpa Rinpoche

Oh how much I want to be a warrior right now. Just for a short while. I'll settle for tonight, a glimpse of these endlessly unfolding resources, let me pummel that cowardice until there is hardly anything left.
This morning after another hectic night of catching whatever sleep I could in this mad circus of fever flares and shivers and a couple of other symptoms that I should know so well (but which take me by surprise every fucking time), with the first commuter noises from my neighbours and one surprising gently bird call, I tried to settle to the calm voice of Jon Kabat Zinn asking me to establish myself in a posture that allows me a mountain-like dignity.
It was lovely. I almost fell for it but the rough end of my self pity and the prospect of yet another diagnosis looming on the horizon won the day. For now. I am working on it.

early October forest

13 October 2017

never lose touch with the universe

"When the Manhattan Project scientists – half-mad from years of grinding out atomic-level discoveries in the race to beat Germany to the bomb – emerged from their Los Alamos lab one morning, they looked up in terror at a strange bright light in the sky. Among the scientists was an astronomer who reassured the group that it was only Venus."

as told by Daniel Magariel

There I was chewing over this quote, tossing and thinking - as you do in the early hours before sunrise - until I realised what bothered me.
Let's replace  'only' with 'the magnificent, the wondrous, the mysterious' Venus.

12 October 2017


"There must be terrible loneliness in that failure to perceive or value the humanity of others, the failure of empathy and imagination, to consider oneself the only person who matters. Caring about others, empathising, loving them, liberates each of us; these bereft figures seem to be prisoners of their selfishness before they are punishers of others."

Rebecca Solnit (read the full article if you have the time)

In one of these complicated discussions with several (wonderful and much adored) men I know about misogyny and why and how and are women to blame and how come and do you think your teenage daughter is less safe on the streets at night than your teenage son (in a small university town in Europe) and if so, why, and why should women watch how they dress and talk and behave while men etc. etc. there came the inevitable (male) moan, Oh stop, I can't be bothered anymore, I don't want to know, it's not my problem. I am neither a predator nor a misogynist. 


06 October 2017

In a sense sickness is a place, more instructive than a long trip to Europe, and it's always a place where there's no company, where nobody can follow.
Flannery O'Connor 

There are days when I have to tread very carefully to avoid this all consuming anger. 
Or maybe it is all consuming jealousy. Or this overwhelming feeling of life not being fair. 
And before I know it, I am stuck at entitlement and why me.

Most days, I catch myself in time, let it settle, recognise it and watch it fade, slowly. That's a skill I am working hard on accomplishing. Life long learning etc.

Other days, I am helpless but at least try not to show it. And then there are days when I let it all hang out. You better not come near me then unless you bear hand selected or at least mindful gifts of comfort and distraction. And I am getting very choosy. I am a veteran by now.

Once again, I sat for long hours in the blue recliner with the slow drip feeding into my vein. My co-sufferers of the day included a confused and newly diagnosed man on his first round of monoclonal antibody therapy. I made it my mission to inform him on the intricate aspects of auto-antibodies and immune suppression, night sweats and fever flares and fatigue, disability and early retirement and life expectancy studies. 
His response was: Hell, no way. Not me. But that was before the clemastine kicked in. 
While I listened to him snoring and gulping, I felt awfully superior and so much more advanced and educated about my/our shitty disease. And then my double dose of clemastine reduced me to counting the strips of the window blinds for the next six hours, over and over and over.

On the way home, I vaguely noticed the active world through the car window, cyclists, groups of elderly tourists queuing at the museums, kids chasing leaves and dogs, smart suited business people running or at least striding with purpose, all that healthy energy outside my little bubble of chronic illness. Not my world. Not anymore.

And later, I was lying on the carpet in the sitting room with the sun pouring in and the patio doors wide open. This glorious carpet is the most expensive item in our house, purchased on the spur of the moment from a smart young man in one of these come and go warehouses by the motorway, ('no child labour, madam, all made by ladies in my valley, look at certificate here') and I traced the intricate patterns with my finger. Apparently, you can identify a real handwoven Persian carpet by its tiny mistakes in the patterns, which are left there deliberately to show human humbleness in the face of god's perfection. Or something like it.

There is a metaphor here somewhere. 

28 September 2017

so much bigger than us

watch this on the biggest screen you have

18 September 2017

you bet

When the accumulation of wealth is no longer of high social importance, there will be great changes in the code of morals. We shall be able to rid ourselves of many of the pseudo-moral principles which have hag-ridden us for two hundred years, by which we have exalted some of the most distasteful of human qualities into the position of the highest virtues. We shall be able to afford to dare to assess the money-motive at its true value. The love of money as a possession—as distinguished from the love of money as a means to the enjoyments and realities of life—will be recognized for what it is, a somewhat disgusting morbidity, one of those semi-criminal, semi-pathological propensities which one hands over with a shudder to the specialists in mental disease.

John Maynard Keynes, “The Economic Possibilities for Our Grandchildren”,  published 1930

16 September 2017

Forever chasing that elusive present moment, while instead I am dwelling on the past and fearing the future. I can do that really well, multitasking etc.
In between sunny spells it has been raining hard, like some angry god throwing sharp pebbles down by the handful here and there.
Visitors are on their way, their train is on time, beds are ready and R is cooking. This will be a first for me, entertaining with vertigo. Or very early good nights. I often think of the people I know who suffer from  migraines and how much we have in common. Right now, it is the fifth attack in three months and it won't be the last.
There is no other word for it, I feel under attack and yet my body is doing it all by herself. After the last reprimand from the expert (be proactive, never mind prescription rules and side effects) and begging my bones to please remain strong, I am now helping myself to generous amounts of cortisone - I am not stupid, there is a protocol,  I will do this only for four days.

Last night, R was out having fun with friends who asked about me and he described me as social recluse. When he told me, long after midnight, I got really angry a bit upset and ready to protest. But yes, that's what has become of me. This disease has too many surprises to pretend it doesn't change the way I live. And it is me who sends R out into the world on a Friday night. And it is me who waits for him to come back with funny stories and pictures and the smell of drink and laughter on his breath when he kisses me.

So what. Did I mention that he is cooking right now? Something with porcini mushrooms and Spanish cheese. Last night I finished book 17 (Single & Single) of my annual challenge of (re-)reading all John le Carré novels in chronological order. Seven to go, plus his autobiography. Don't let it be known that life isn't good here.

Earlier, my father called and made a most generous offer. I tried in vain to refuse (so far) and I am hoping he'll forget. It involves money, obviously, and in my dysfunctional family, this could develop into (legal) warfare.  He has a point,  but one that will never be accepted in court.
Also, my sister has stopped communicating with him or maybe he did. Both claim to be 'immensely' relieved with this dreadful situation, while I can feel their hearts breaking.
I wish that my heart was cold and hard, that they leave me out of it, that they let me mediate (never!).
But most of all, I wish we could stop dwelling on the past, fearing the future. That we could all find the elusive present moment where nothing else matters.

09 September 2017

Presently, I am going through another period of  tsundoku, which is Japanese for "the act of leaving a book unread after buying it, typically piling it up together with other such unread books".

Of course, I have my reasons excuses, which are mainly the four horsemen of the bookalypse: fb, twitter, instagram and blogs. Plus obsessively reading online news. (I am so with it, I am almost ahead of it all.)

My parents would not approve. And as a balancing measure, just in case my mother, in whatever shape or form she is currently haunting me, looks in and also to be prepared for my father's sharp comments that this in-ter-net (a dirty word in his vocabulary) surely spells the end of civilization, I have started to read three short aphorisms by Georg Christoph Lichtenberg (1742 -1799) every morning.

My noble intention is to let them settle in my mind for greater clarity during the day. Thus, making me even more clever and to add wit to my conversations with society as a whole. I am kidding. There isn't a cat left in the neighbourhood I could talk to these days. Also, I am on triple antibiotics at the moment which make me nauseous and in dire need of distraction. Plus, vertigo is back, surprise, surprise, and I shouldn't really go about crashing into furniture or falling down the stairs.

My source is an actual - slim - book, albeit made of extremely lightweight paper, I inherited from my grandfather, complete with his faint penciled notes on the margins (mostly exclamation marks).

This is today's ration:

  1. The great skill of holding small deviations from the truth for the truth itself, is also at the same time the basis of our wittiest thoughts.
  2. Maybe our earth is a female planet.
  3. There are many people who are more unhappy than you. While this little sentence doesn't make your life any better, the shivers it sends down your spine make it worth repeating from time to time.

08 September 2017

"Our planet is not fragile at its own time scale, and we, pitiful latecomers in the last microsecond of our planetary year, are stewards of nothing in the long run."
                                                                                                                                                                                 Stephen Jay Gould

We took a break and packed the bicycles in the car and drove west to the flat land to look out at the sea. It was reassuring. On very sunny days, we cycled on top of the dikes and on bumpy cobble-stone streets through villages where every front window is washed and sparkling. A clean front window without curtains, my Dutch friends explain to me,  is a message to the world that we have nothing to hide, that our souls are pure.
We watched the sun set every evening in absolute perfection, and we felt very small and insignificant.

We ate stroopwafels sitting on the jetty with out feet dangling, watching the sailboats. I forgot to put on sunscreen. I forgot the lab report that was waiting for me on the kitchen table back home. 

31 August 2017

Sometimes, the most I can do is nothing.

As I have no god to plead to for mercy, I depend on human kindness and medicines. Once again, this fact leaves me dumbfounded most of the time. At night, I am woken by one or more of these: my rumbling intestines or bloated stomach, aching finger joints, dull throbbing sinusitis, the taste of bleeding gum tissue, my angry bladder, confusing thoughts, dreams too complicated and possibly too frightening to remember, a cackling bird, the binmen clanging the gates along the street, the tinny whirr from the headset of the newspaper delivery guy, gentle male snoring.

At night, my world goes through hard times, but I am only vaguely aware of it, while I carefully hold on to whatever remnants of dozing, sleepiness I can grasp, breathing slowly, relaxing my fingers and toes, anything to soften the full onslaught of whatever is out of tune, waiting to hit me, to push me over the cliff.

And then I wake and the daylight is soft and pink. The garden is wet with shiny dew, a flock of rose-ringed parakeets noisily breakfasting in the branches of the tall hornbeam.
I run my hand through a bowl of ripe greengages, each a sphere of sunlight and sweetness, testing for the softest, the most perfect one. All of summer is in that fruit, that shape, that colour, that taste. My daylight world is calm, I am in a safe, good place. Wonderful things are happening in my family. Love is all around.

Tomorrow, I will get up much earlier, to give myself time to prepare for a meeting to discuss my future as a working person, someone I want to remain but who I may no longer be and who the big important boss wants to be gone. I can already taste the bitter anger at the back of my throat when I think of facing him. But I know that this is not the way to do it. He has no power. I am protected, not only by labour laws but by being confident and alive.

That's the great challenge of my life, without promise of solution, the insight that I need all my strength to be weak. 

17 August 2017

This is no time to Count Your Blessings
this is no time for Private Gain
This is no time to Put Up or Shut Up

12 August 2017

Three years ago, I crossed the 5-year survival threshold reserved for 75% of people with my diagnosis. It meant nothing. Life ahead of me seemed endless.
(Still does.)
This summer, I have reached the half-way mark of the latest, statistically confirmed life expectancy. Do I care?

It has been raining most of the week or maybe only for the last two days, I lose track. Most evenings, we manage to fit in a short cycle along the river in between downpours, watching the fog rise from the small valleys on the other side. The fact that I have enough energy for cycling makes me so giddy, I forget to take pictures. Next time, I tell myself, there will be a next time. And one after that and many more and so on.

03 August 2017

In life, . . . , it's the luck of the draw, who you meet and when and how much you have left to give, and the point at which you say, To hell with everything, this is where I go the distance, this is where I stick.
John le Carré

02 August 2017

Sam Shepard

"When you hit a wall - of your own imagined limitations - just kick it in."

A late night in the early 1990s, I cannot sleep and move into the sitting room, switch on the tv and find myself in the first act of True West, John Malkovich's whiny voice while he picks his nose. I sit mesmerised through the kicking and fighting until the kitchen has been destroyed and the typewriter flung across the stage.

Before that, I had fallen in love with the actor playing Chuck Yeager, possibly because of the way he wore that leather jacket and his laugh. Then there he was Walter Faber and so much more than the man I had imagined when we read the novel in school. And obviously, he wrote this monologue. I don't remember how often I watched Paris, Texas because he wrote it but I am glad I did.

And now he is dead and how can that be. Playwright, actor, musician, magician, eternal cowboy.

"I hate endings. Just detest them. Beginnings are definitely the most exciting, middles are perplexing and endings are a disaster."

01 August 2017

A humid rainy day, thunderstorms on and off. We dawdle. It is very pleasant to dawdle on a humid rainy thundery day. Presently, I shall make coffee and grilled tomato and cheese sandwiches for lunch.

Before lunch, I usually persuade myself that I am fit and healthy and really should go back to work straight away. I organise stuff around the house, clean the shower and do all the physio exercises as instructed.
After lunch, I usually fall asleep for a while and dawdle some more until it's time to watch the next two episodes of the Spanish thriller we are hooked on right now. After about 30 mins of subtitle reading, I fall asleep again (I read the recaps online in the morning).

Meanwhile, R - on eternal holiday at last, he will now be 65 forever - is entering all my lab reports from hell into a massive excel spread sheet. He is an example of data entry diligence and soon enough will present me with the appropriate tables and columns and all the other graphics shit microsoft has invented for genius people like him.  Every night before sleep, I pray to all gods and demons of this and all the other universes begging to please please please always keep him healthy and happy. (Or at least for as long as I am alive. I am a selfish bastard.)

Yesterday, we stored the onion harvest in the cold frame on the patio. It was an easy task, R cutting off the chaff and me smoothing away any dry skins before placing them in neat rows inside the box. If we have two a day, we'll make it to November.  Later, in my favourite spot, stretched out flat on the patio stones, I watched the swifts in the sky and from time to time lifted my fingers to my nose to smell the fresh onion aroma, while across the road, my neighbour had a short argument with her son about his car running idle. They were yap yap yapping back and forth, she in Filipino, he in German. Ok, ok, he finally shouted, I'll do it, I turn it off, but just for you. And she laughed and replied, who else!

Earlier, the quiet young woman came to clean all our windows. She hummed and smiled as she moved through the house. My mother would not approve. Paying someone to do that kind of work. Tsk. Tsk.  The kitchen window boxes had to be replaced for a while.

A well meaning learned friend sent me a scientific article on gingival hyperplasia swollen painful gum inflammation as a sign of recurrence of granulomatosis with polyangiitis my shitty disease.
Ah well, I knew it all along. What's next? There are days when I can read that stuff like the next best person, research it further and get proper references and quotes, reassuring tables and figures and all. But then there are days when it makes me want to slam my fist into the wall and shout the house down.


Reading these two word: old paperbacks makes me feel happy.

Reading this, however, makes me want to cry:

Researchers find that economic, emissions and population trends point to very small chance Earth will avoid warming more than 2C by century’s end

Watching this short film, makes me think and wonder:

Listening to this song, makes it all better:

21 July 2017

Things have not improved overnight as hoped. Changed, yes, certainly, and unfortunately. There is seemingly no end to the stuff that can pop out of my box of surprises.  I am now back in the all too familiar territory of heavy vertigo (plus sudden onset sciatica or what the heck), only this time it's not the world that's turning but me who is tottering and reeling like a common and garden drunk towards the left when I don't watch myself.  After the first 24 weird hours, R dragged me to the GP this morning where we debated a trip to A&E with all that this entails. In the end, we decided on the old familiar wait and see method with strict instructions when to call an ambulance. This will pass, no doubt, I am far more confident than the rest of them.

Because, I have learned that I need to live all I can because it would be a mistake not to (thank you Henry James).  But I have learned that pity and being considered poorly gets massively in the way.
What makes it extra hard sometimes almost always is that I seem to have to defend my needs and hopes and wishes in the face of my diagnosis. The labels chronic and reduced life expectancy are a powerful and nasty curse. As a result, I need to be more convincing about my goals than I needed to be while I was well. But that was years and years ago. Maybe I am embellishing here. I have never been superwoman.

In my ideal world, illness would be just another characteristic of an individual and not the one that everybody thinks as the defining one. Being ill has forced me to figure out a whole new set of skills and some of these feel like obstacles that a healthy society has created to put me in my place.
I get it, though. I used to be that healthy person dishing out advice on diet and lifestyle, impatiently waiting - if at all - for someone a bit slower and more out of breath, never considering how medical appointments and treatments can rule your life.
Don't get me wrong, I love advice and pity can be a balm on a hard day. Unless when it clangs, when it's all there is - seemingly. (I am probably getting this wrong.)

Rest assured. Occasionally, I reach a stage where I am beginning to realise that we are all struggling, healthy or ill. And that health - whatever we think it is - has little to do with.

Totally unrelated, we welcomed two small lemon trees (one Sicilian, one Meyer) and a sturdy feijoa tree to the garden commune yesterday.

16 July 2017

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.

11 July 2017

(weeding is overrated)

Some mornings while the air is still cool and the pigeons are cooing outside I make my lists. I have been making lists for as long as I can remember. Lists of all my new year's eves, my class teachers, the names of the streets I have lived in, my toddler daughter's shoes, our holiday destinations, lies I have told, promises I have kept and promises that I have broken.
Then there is the list of things I can no longer - do, experience, feel, eat, drink and so on. I only started it today:

strong coffee

Oh well. I start with the obvious and head straight to the household drugs.
Someone recently told me in great detail how he will start smoking and drinking again 'when the time comes'. This way, he said, I will have something to look forward to. And never mind the consequences.
I wouldn't rush to start on cigs and booze, I said to him. Come to think of it, they weren't all that nice anyway.  For a while, we dwelt on memorable hangovers occasions and drifted into our teenage wilderness years but in the end, we agreed to maybe give psychedelics a try. Eventually, 'when the time comes'.

Yesterday, while I tried to explain the levels of exhaustion to my GP (jelly legs? weak knees? drowning?) she asked whether I was sad. Not as in depressed, she explained, just, you know, sad. Without thinking, I replied, no way, I love my life. Just checking, she smiled.

This song was the soundtrack of my teenage rebellion, originally by Ton Steine Scherben, (one of them went to school with me) but this nice version is by Wir sind Helden,  who are part of my second teenage rebellion old age soundtrack, and here is an English translation.

10 July 2017

the garden is bliss

Fools hurry, the clever wait, the wise enter through the garden gate.
Rabindranath Tagore

We have reached that stage of sloth which - combined with the heat and humidity - completely cancels any desire to enter any garden-of-the-year competition. At this stage the veg simply grow by themselves anywhere, all we need to do is actually find them in the wilderness and harvest. I no longer notice the weeds (what weeds?) that push up through the patio stones and our surprise find of several envelopes of ancient collected pumpkin seeds in March, which we dutifully sowed and planted,  has resulted in pumpkin basically growing everywhere.
So take your pick, this is our wilderness.

one of the vines

the onions drying with my bicycle

petunias on the way to the laundry room

this is the corner for the bees


runner beans



buddleia and tansy

day lily battles with pumpkin

imagine their smell

hidden pumpkin
petal confetti

first tomatoes in the greenhouse

sweet woodbine

05 July 2017

Rise up from out your bed
There are dreams in the air
Harvest light for the day ahead
And shine it everywhere

Lemn Sissay

Our summer visitors came and brought happiness and made excellent pizza. In exchange for a missed holiday in Portugal. Not a bad deal. They filled the house with laughter, serious debates and overflowing suitcases. Now, they are sending snaps from China. The world is their homeland.

Back on the endless routine of doctor's appointments, physio, lab tests. I wake up every morning feeling great and ready for what ever. By lunch time, reality has caught up with me and I try not to think of what's next.

The garden is bliss.

28 June 2017

bits and pieces

That expectation that life should proceed in a straight line. Preposterous really - and everything I have learned about life up to now confirms that - yet deep down, I want it that way and most of my disappointments in life are based on this being so impossible.

Listening to a pleasant Sunday morning radio show, a chatty interview with an Irish author/musician, I feel a jolt of fear passing through me when he mentions with a sigh that most of his life is behind him now, that aged a bit over 60, you never know, it could all be over sooner rather than . . . and so on.

Before sleep, I read Do No Harm by Henry Marsh, which is quite brutal, almost like a thriller. I hold my breath and race through the pages to find out whether a patient survives. And with the relief when it happens I feel a short wave of anger wash over me. Recovery, complete recovery. How distant, impossible, almost mean, nasty these words have become.

I remember a friend who - many years ago - insisted we teach her everything about vegetable gardening, now, because she had been told that she only had months to live. All afternoon, we walked through the garden and she took elaborate notes about soil and compost and mulching and crop rotation. Later on, we got drunk. It wasn't a day for tea and biscuits.

Yesterday, a man approached me outside our local supermarket. He looked friendly, tanned, dressed in stylish sports clothing, with a well equipped touring bicycle. You are a housewife, he asked and I laughed, not really. Look here, he said and held out a stick of lard. For two weeks, I have been eating one of these every day, with onions and salt, and my skin got smoother, I feel much younger and healthier. Pig's fat? I ask. Yes, I boil it until all the bad stuff has evaporated and eat it right before bed time. We went on from there, covering the essentials, as you do, from factory farming, antibiotics in animal feed, hair dye, DNA sampling, white flour, exhaust fumes, the difference between fluorine and fluorescence, which brought us smoothly to the subject of migrants and there I bid my farewell. You meet all sorts, my grandmother often told me, if you have the time.

This morning, my daughter gave me her pep talk about my future. She's very good at it, pointing out where I have already, secretly, unbeknownst to me, made my decisions and how to follow up on them. She makes it all sound dead easy. And why not.

Today is our 35th wedding anniversary. We googled and learned that in Germany, this is the vellum (or maybe canvas?) anniversary, whereas in America, it is a coral one. For us, it's the what-day-is-it-again anniversary. It was a mad time and a wild day.

I think I got it all covered now, a cliche about life in general, a brief contemplation of my usual self pity and anxiety, bits of memory, local folklore, family chit chat, love and a link to an older blog post.

Ok. Maybe a bit of glam rock to spice it up. That's it for today.

23 June 2017

"This not about sharing a burden. It is about sharing a global responsibility, based not only on the broad idea of our common humanity but also on the very specific obligations of international law. The root problems are war and hatred, not people who flee; refugees are among the first victims of terrorism." 

-UN Secretary-General, António Guterres

20 June 2017

Here I am, almost 60 years old, exhausted, ill and world weary and yet, every morning waiting for my life to begin, for something new to happen to me, for more of the same wonderful surprise.

17 June 2017

This is one reason why my grandmother is muttering inside my head.

"There you are, turning the ignition of your car. And it creeps up on you. Every time you fire up your engine you don’t mean to harm the Earth, let alone cause the Sixth Mass Extinction Event in the four-and-a-half billion-year history of life on this planet. But harm to Earth is precisely what is happening. Part of what’s so uncomfortable about this is that our individual acts may be statistically and morally insignificant, but when you multiply them millions and billions of times – as they are performed by an entire species – they are a collective act of ecological destruction. Coral bleaching isn’t just occurring over yonder, on the Great Barrier Reef; it’s happening wherever you switch on the air conditioning. In short, everything is interconnected".

Timothy Morton

Ph.D., Magdalen College, Oxford (1993)
Timothy Morton is Rita Shea Guffey Chair in English at Rice University. He gave the Wellek Lectures in Theory in 2014 and has collaborated with Björk, Haim Steinbach and Olafur Eliasson. He is the author of Dark Ecology: For a Logic of Future Coexistence (Columbia, 2016), Nothing: Three Inquiries in Buddhism (Chicago, 2015), Hyperobjects: Philosophy and Ecology after the End of the World (Minnesota, 2013), Realist Magic: Objects, Ontology, Causality (Open Humanities, 2013), The Ecological Thought (Harvard, 2010), Ecology without Nature (Harvard, 2007), eight other books and 160 essays on philosophy, ecology, literature, music, art, architecture, design and food. 
Blog: http://www.ecologywithoutnature.blogspot.com. Twitter: @the_eco_thought

16 June 2017

That kind of day, when I hear my grandmother's voice inside my head, muttering under her breath while doing the dishes, oh god, oh god, oh god.

13 June 2017

Sunday was a hot day with the powerful scent from the hundreds of lilies flowering in the garden.  It was too hot to think in long sentences. My back started to hurt a bit and all afternoon I frantically reassured myself that yes, it's muscle and no, I will not need more spine surgery. That's about the level of sanity I am currently entertaining.

Every day, I go through my rituals of back exercises as instructed and then out of boredom and because I have this stupid idea that I am missing something, I branch out, using nifty gadgets and online videos. Afterwards I freak out for a while because you know, I could be doing it all wrong. But, hey, movement is best, yes?

The last lab works were rough but some of it I can hopefully remedy with supplements, some of it does explain the weak knees and the bp in the low 80s and all that fatigue stuff but no real clue as to  why and how but I told them I was not up for anymore abdominal diagnostics for the time being. Give me a break, I shouted whimpered.

My daily medicines now come as a big box of colourful sweets in fancy shapes. And that excludes the one I refuse taking at the moment because it's contraindicated when taking immune suppressants. I asked WTF and they said, let's try it anyway for a couple of weeks and I said no and then I felt a bit like a fool but also a lot like a stroppy woman and I needed that. I also pushed my clenched fist into the clinically charged air between us while clutching the instruction leaflets from all the medicines with the one million side effects highlighted in neon colours. Alright, I didn't do the last bit, the fist raising, but R had marked the side effects earlier and when I told them, they shrugged their shoulders and offered a cheap grin, worth a try, they mumbled.

In the evening, I was lying flat on the hot patio stones and for a long time, watched the swifts catching insects in the sky above me. Earlier, we had cancelled the very expensive flights to Portugal. So what. I could probably have made it there and back. But. I could not persuade my health insurance, which is currently paying my salary, that gallivanting around Porto is part of my treatment.
So. There I was. Watching the swifts and the beautiful evening clouds above me. I felt small and insignificant and at home. Nothing seemed more important than this right now, hot patio stones, birds, insects, clouds, the vine growing above the sitting room windows.
Then a warm gentle wind started rustling the tall poplar trees, I closed my eyes and listened.

Much later, we watched Manchester by the Sea  and I couldn't speak for a while afterwards.

06 June 2017

this is for Robin

In March, you told us the story of a rose and this morning, look what I found in our garden. We bought the rose bush last summer in Italy in a small garden center off the road in the South Tyrolian Adige valley on the sunny side of the Alps.
I have been thinking of you and your rose story today.

02 June 2017

On a day like today, I wish I was dumb and naive and blind. That I could spend my life in a golden tower of happy ignorance, never getting lost in a forest, never watching the sky for rain before I hang out the laundry.
I wish my father would have never explained to me about the water cycle and the importance of aquifers when I was a child who just wanted to spend a precious moment in time with him by the stream at the bottom of the field beyond our house.
I wish my parents never took it for granted with their books and science magazines and endless Sunday walks that I would recognise how everything in the natural world is connected, instilling in me, by the way, a deep respect for life on earth, from the dead lizard I carried for a while in the bib pocket of my overalls to the swifts nesting below the eaves and woodlice crawling inside my welly boots.
I wish I had spent my university time in a fever of mostly partying and never read a single sentence by Rachel Carson, James Lovelock or EF Schumacher. Never heard of the Club of Rome, A Blueprint for Survival, Fritjof Capra, Chico Mendes.
I wish I never went to the  inaugural meeting of the Green Party, never heard Petra Kelly say that if we want a future, the future must be green.
How I wish I never met Vandana Shiva and Farida Akhtar, never listened to a word from Wangari Maathai or Jane Goodall, never watched David Attenborough.
I wish I never stood at the viewing platform of the Grossglockner glacier on a hot August day in 1983 with a sleeping baby in my arms, while R took pictures of the massive ice sheet that today has shriveled to a fraction of its size.
I wish I never let myself be carried by the strong warm currents of the Indian ocean, surrounded by mysterious schools of fish, floating above a paradise of colourful corals that are now dying.

But most of all, I wish I had never seen this:

31 May 2017

When you don’t hear others, you don’t imagine them, they become unreal, and you are left in the wasteland of a world with only yourself in it, and that surely makes you starving, though you know not for what, if you have ceased to imagine others exist in any true deep way that matters.

Rebecca Solnit

read her entire essay here

you will not regret it

28 May 2017

Another very hot day with only a hint of a passing thunder storm this late afternoon. Breakfast outside was ok but for lunch we opted for the cool inside. Half an hour ago, R emerged from his study where he has been grading papers all weekend, stretched himself and suggested a short spin on the bicycle. Like a fool I got up and looked for the keys and my phone and made it exactly as far as the back steps.

Yesterday was a vertigo and nausea blur, vague memories of eating delicious ripe apricots in the evening, balancing on my bed, carefully holding a paperback in my arms waiting for the letters to stop whirling and turning, telling myself that all vertigo attacks have subsided before as this one surely will, eventually.

These days it is blatantly obvious that I am simply the wrong person for this disease.
Assuming that there is indeed a right person to live with a serious chronic condition, the one with all the red warning lights and the overlap syndrome and B symptom caveats. In short, the kind which causes smart medical experts to sigh and get off their comfortable chairs, walk around their shiny desks to hold your hands. If they have ever heard of it, that is.

This disease that currently rules my life (it comes in flare-ups and I remain hopeful that like previous ones the current one will eventually subside, too) used to be called Wegener's disease, named after a German pathologist who first reported on this condition in the 1930s, a time when there was no treatment, the few patients he based his findings on had died quite suddenly.
It's just my luck that Friedrich Wegener was a nazi, and possibly a dedicated one. This from an investigation by Woywodt and Matteson in Rheumatology (Oxford) (2006) Vol. 45: 1303-1306:
The facts we have uncovered do not prove Dr Friedrich Wegener guilty of war crimes. However, the evidence suggests that Dr Wegener was, at least at some point of his career, a follower of the Nazi regime. Dr Wegener's mentor, Martin Staemmler, was an ardent supporter of the racial hygiene. In addition, our data indicate that Dr Wegener was wanted by Polish authorities and that his files were forwarded to the United Nations War Crimes Commission. Finally, Dr Wegener worked in close proximity to the genocide machinery in Lodz. His interest in air embolism is also troubling. Although we know that Wegener was a popular and skilled teacher and colleague, our data raise serious concerns about Dr Wegener's professional conduct.

In 2008, The New York Times wrote that a nazi past casts a pall on name of a disease. For a while, this story was my party piece, I told it with a grin, to take the edge off when I had to react to another round of never-heard-of-it remarks. I don't do that any longer. I am also not one who is hurt or insulted by the name of this shit disease. That's the least of my problems right now.

Today, I am mostly just mad and jealous of R and everybody who can walk without needing a wall to hold onto. But I am repeating myself.

27 May 2017

Ahh help me baby, or this will surely be the end of me, yeah.

A couple of years ago, I would listen to this song every day and it drove my daughter mad. She banged her door in disgust and called me all sorts of names. I bet she doesn't remember.

Gregg Allman died today. Much too early.

26 May 2017

A hot day. Let's call it summer. The wisteria has finally recovered, busy new growth has almost completely overtaken the frost damage. All of the roses are in bloom, the first veg are harvested. I am married to a gardener.

The sun was not yet up, and the lawn was speckled with daisies that were fast asleep. There was dew everywhere. The grass below my window, the hedge around it, the rusty paling wire beyond that, and the big outer field were each touched with a delicate, wandering mist. And the leaves and the trees were bathed in the mist, and the trees looked unreal, like trees in a dream. Around the forget-me-knots that sprouted out of the side of the hedge were haloes of water. Water that glistened like silver. It was quiet, it was perfectly still. There was smoke rising from the blue mountains in the distance. It would be a hot day.
Edna O'Brien (The Country Girls)

The past couple of days have been filled with sheer exhaustion and huge portions of the day I just spend sleeping or dozing. I try to not think why this is so.
And yet, I am so restless.
I hear my mother's voice somewhere from deep inside of me, her disgust with my lack of dedication, the way I just do nothing, letting myself go. In an attempt to shut her up, and like the good daughter I was I am not watching tv before sunset. She would certainly also disapprove of my laptop even if I showed her that I mostly work and read on it. Proper literature, serious news media and all.

In brief moments of absurd clarity I realise that I am no longer the person who needs to be afraid of her judgement. It's only a memory. 

24 May 2017

"Altruism and empathy are what binds us together, and what defines us. We should let no one distract us from this central fact of our nature: neither terrorists nor those who, in response to them, demand that we slam our doors in the faces of an entire community or an entire religion.

Our humanity, in both senses of the word, is on display all over Manchester. You can see it in the queues at the blood donor centres, in the hotels and the private houses that have been thrown open to people stuck in the city after the concert, in the messages posted on social media to help people find missing members of their families, in the donations that thousands of people have made to support victims of the attack, in the taxis giving free rides to hospitals and homes.

But it’s not just Manchester: almost everyone, everywhere, behaves like this. And it is when horrors such as the bombing strike that we remember it. Our task now is not to become the society the terrorists want to create.

So let us celebrate what we are. Let us stand in solidarity with the victims of the attack, while ensuring that justice reaches the perpetrators. And let us not allow either a tiny number of psychopathic murderers, or those who in response to them wish to suppress our humanity, to distract us from the magnificent facts of our nature."

George Monbiot

20 May 2017

basically, it's a gamble

Things are falling apart around me, on sick leave since forever.  I think I need a plan.
As a start, I need to remember what day of the week it is and also, the actual date, the month, what season and what the next meal will be.
Next, I must put that phone call out of my mind, the one where my boss (the much lauded super important research scientist) told me yesterday that - as I am obviously neither getting any better nor any younger - he has started not only to advertise my position but to interview my prospective replacements.
I also need to laugh about the email from his secretary, the one where she invites me to attend the first interview on Monday at 9 am.

I have never wasted much time thinking of what my life would be 'later' when I am no longer working, when we're old. Not in any detail. Of course, there were the wild dreams of travel, years of travel, working odd jobs along the way, visiting places, people, ideas, getting wiser, more grey hair and maybe having slightly less energy, becoming more modest in our physical adventures. Stuff like that. Airy fairy stuff.
Whatever. But my health, I took for granted. Never wasted a thought on it.

But none of that really matters.
Early this morning I sat on the floor in a corner of our bedroom, blowing my nose after a spell of furious sobbing and kicking and hissing at life in general and me in particular when R opened the window wide and said, oh look, blue sky.
That's when I ran out of excuses. And the day has been quite lovely so far.

There have been many days like this one in recent years, reminding me that basically, I can be a positive confident person and that there is no place in my life - tough as it is at times - to be upset about losing my job and worrying about reduced financial means or moaning over someone's outrageous attitude to my illness and all that shit.
I still love a good cry, though.

16 May 2017

For a short while after my mother's death I would wake up with a start, thinking, what if she can watch me now, all the time, day and night, everywhere, what if she can read my mind, hear me talk, see me get hurt and how I hurt others, lie to people, cheat with my taxes, eat the wrong food, make mistakes. What if she finds out that I am glad she is dead, that I am relieved, that I can sleep much better now.
Will she be upset, sad, angry? Will she punish me, lash out at me, make my life miserable? What price will I have to pay for deserting her?
I was 40 years old, scared, the way a child is scared of being found out.

But it was only for a short while.

Often when I think of her now, I see her walking alone behind us the day my brother's youngest child was baptised. For weeks, my brother had been negotiating with our parents whether they would find it in their hearts to both be there. Regardless.
But no. They were adamant and in a bizarre way, for once in total agreement with each other. Either him or me, either her or me.
My brother cried, briefly, my father decided to get out of the picture and my mother got her hair done. That sounds harsh. It was exactly that.

The day was glorious, a perfect summer's day in the Franconian countryside, a baroque church in a small village among rolling hills, a long line of tables under the thick, cool canopy of walnut trees, singing and laughing, food and wine. And later, after too much food, a walk down to a small river. Setting off in small groups, talking, joking, children running ahead, the adults passing babies and toddlers from one set of arms, shoulders to the next.
My sister puts a hand on my shoulder and whispers, look back. I turn and there she is walking all alone, already some way behind us, my mother in her elegant suit, her expensive handbag, her high heels, despite her condescending smile she appears almost lost, helpless.
I look at my sister and I swear, we are about to turn and walk towards her. I can feel her pulling us, her two dutiful daughters, coming to her rescue, keeping her company, making her life bearable - or at least trying to.
No, my sister takes my hand. No, let her walk alone. Leave her, she is almost shouting at me. We are running now. When we reach the river, my sister has stopped crying.
Much later, my mother carefully sits down beside us and lights a cigarette. Silently.

15 May 2017

I didn't make it. All that aqua cycling and deep muscle fitness building, the physio sessions, the hydro jet massage, the pep talks on proper posture (incl. exercises) and how to run a conference without too much unhealthy sitting down, the practical lessons on how to load a dishwasher after spinal surgery and why pillows can be bad. In the end, I just caved in, my legs folding under me ever so slowly. And whoosh, I am out. Regulations, my dear. So sorry.

And now more diagnostics.
May be this.
May be that. 
Maybe just bad luck.
Try not to think ahead.
. . . what ancient and obdurate oaks are uprooted in us in the act of sickness . . .
Virginia Woolf

10 May 2017

Week two of the rehabilitation program and the earth is still turning. Today I actually walked out of the building in relatively high spirits, delighted with the prospect that I if I can manage seven hours of this, I may be able to  attempt working four hour days in my office again. Eventually, i.e. in the distant future three weeks.

I drove home, a cheerful sun was shining at last, I let myself into the house and promptly collapsed onto my bed. But hey, I am barely half way.  Many - tons of - more exciting hours of physiotherapy and muscle rebuilding and nerve stimulation and whatever else are ahead of me.

Walking of course is still a euphemism for what is actually happening when I lift one leg in front of the other. It does look like it from a distance, in slow motion, for a short while. Which is better than nothing. And I can get from A to B.
As of today, I am trying out a snazzy looking but rather complicated velcro concoction that I strap around my ankle and foot - with no noticeable effect (yet?). There is a selection of alternatives, which I am going to work my way through under the watchful eyes of a jolly occupational therapist who is also going to bully my employer into providing an electronically height adjustable desk with matching state-of-the-art desk chair. If the next session with the good rehab doctors results in them considering me fit for work (incl. getting there and back), that is.

The coffee is decent, the food is disgusting but luckily, I can bring my own. The company is delightful. Today, I spent one hour with three bus drivers, we were cycling in a pool of hot water up to our necks, talking about our surgeries and the best ways to get our spouses to do more or less all of the heavy lifting before racing each other to the finish. I won, which means that I can choose the music for the next session in two days time. (The bicycles are stationary. The music was hard rock.)

So, all in all, life is surprisingly different all of a sudden.
While shit happens all over the place.

And now for something completely different:


04 May 2017

the butterfly thief - a poem by Kathy Jetnil-Kijiner

read the story of this poem and the background to it here on Kathy's blog. 

30 April 2017

"I can't be a pessimist because I am alive."

Let me start with a bit of music from Iceland. Just because.

The word of the day is rotten. I feel rotten. Physically that is, the mix of symptoms is yuk. Could be anything. Could be nothing. Probably something. I shall not be asking dr google again. Instead, I will just continue on the endless path through the complicated maze of diagnostics reserved for people with autoimmune diseases.
I could dwell on it in detail but apparently blogging about illness is not the thing to do. In terms of clicks and readers. But that's not why I blog anyway and it doesn't stop me from rejoicing about every single comment, wonderful readers.

So, against all trends and warnings, I shall just mention that I am spending this sunny Sunday lying on the sofa, distracting myself watching British tv thrillers, reading spy novels, solving cryptic crosswords, booking expensive flights to Portugal in eight weeks time - as one does.

And yet, yesterday evening, we cycled along the river just before sunset. The air was blue and pink and still and clear, the water was moving gently. People smiled. All was well(-ish).
If I can do that I can fly to Portugal. Not?

Last Friday, I had my first day at the rehabilitation centre. This is going to be hard and great fun. In my worst dreams I see myself failing dramatically, as in passing out and exiting the place on a stretcher. In my best dreams, I am walking out of there in three weeks time like a young deer, skipping and jumping. I am already deeply in love with the staff of experts and miracle workers. Anyway. Three weeks.

A few nights ago, I watched I am not your negro (because reading James Baldwin as a teenager changed my world) and from my distant and insufficiently researched and highly opinionated vantage point, aka high horse, Baldwin's argument here (from his 1965 debate speech at Cambridge University’s Union Hall) explained to me why that trump geezer got elected after eight years of Obama.
To punish, to show all those liberal and open minded and diverse people who's boss after all.

Tell me I am wrong, tell me I am ignorant. Whatever. (But watch the film if you get the chance.)
"I remember, for example, when the ex Attorney General, Mr. Robert Kennedy, said that it was conceivable that in forty years, in America, we might have a Negro president. That sounded like a very emancipated statement, I suppose, to white people. They were not in Harlem when this statement was first heard. And they’re not here, and possibly will never hear the laughter and the bitterness, and the scorn with which this statement was greeted. From the point of view of the man in the Harlem barber shop, Bobby Kennedy only got here yesterday, and he’s already on his way to the presidency. We’ve been here for four hundred years and now he tells us that maybe in forty years, if you’re good, we may let you become president."
read the source
watch the clip 

27 April 2017

my grandmother, three weddings and two wars

summer 1914
Look at the young woman sitting in the front right, my grandmother in her white dress and her fancy shoes with the pretty bow, she just celebrated her 22nd birthday. A few weeks ago, the archduke of Austria and his wife were assassinated in Sarajevo, an event that triggered the first world war. I wonder how much she cared about it. There, in her picturesque little Franconian hometown. At the time of this wedding, the war has already begun. Five of the men are in uniform. Did they worry? Did they feel enthusiastic,  heroic or even patriotic? The two brothers of my grandmother are not in this picture.  Maybe they have already joined the royal Bavarian army of king Ludwig III, who pledged allegiance to the German emperor, maybe they are well on their way to fight in the battle of Lorraine.
I find it hard to imagine that Franconia at the time was not part of Germany, that all the schmaltzy stuff, the gossip and stories about the glamorous lives of the Bavarian kings, the sugar coated Disney castles by the lakes shadowed by the grand panorama of Alpine mountains, where today the tourist buses queue for parking, was at the center of adulation of my grandmother's youth.
During WWI, with her brothers and her father in uniform, she managed the family's hardware shop, the blacksmith's forge, she became a coal merchant and a haulier. She often talked about this time, she was happy, the war and the men (who put her in her place) were far away. And she was good at her job.
Her hometown did not suffer any damage. Her brothers returned unharmed. She handed over the business to them in excellent shape and got ready for what was considered her real life.

summer 1919
The war over, five years later, here she is at her sister's wedding to the owner of the local brick factory.  An excellent match for the town and the two families. Franconians tend to think that way. Newly married herself, she is standing behind the groom, who initially had asked for her hand in marriage but she turned him down (too slick, never liked that mustache, she claimed). Instead, she holds on to her own precious catch, my grandfather, who read law in Munich and was already on his way to become a judge. This was not a love story. I don't think she looked for one. She wanted - and found - status, financially and socially. Everything was going to plan.
The wedding party is gathered here in the courtyard of her sister's future family home. My father has many stories of childhood holidays in and around this courtyard, climbing onto the kitchen window ledge to ask for a slice of fresh sourdough bread with jam, chasing chickens and piglets across the cobblestones, carriage horses being fed and watered, bicycle races with cousins, lanterns illuminating summer evenings with family gatherings, charades, amateur theatre and singing.
My great grandmother looks tiny, as if she is hiding (5th from the right in the front) but I am sure, she was on top of the world, both her daughters now in good and prosperous hands. And that short fellow - with his ears sticking out - standing next to the bride, he became the great tragic love of my father's sister. Since childhood and forever. But she wasn't even born yet and their sad story would not unfold for many years. 

summer 1939
Leaping forward twenty years and another war is on the horizon. By now, my grandmother has achieved what she set out for - and more. Her husband (not in this picture) has climbed to the top of the career ladder, the family is living in the house that she designed herself (where my father is living now), she has a large garden, an orchard and a maid. She now has three children, the third, my father, an unfortunate and unwanted late surprise. She is standing behind the bride of her younger brother. Her first born, my godfather, beside the bride, is wearing the uniform of the Reich Labour Service, a compulsory duty introduced by hitler for all young people aged 18 to 25. He was in his last week and due to start university in the autumn. Next to him, his sister, my wild aunt. Her tragic love story already heavy on her heart.
Behind the groom, we see the groom from the previous picture and his wife, the young bride from 1919 now wearing glasses, their three teenage children in the row below her.
My great grandmother, much aged, sits beside the groom.
Where were you?, I ask my father. He cannot remember. And your father? He probably had to be elsewhere. As usual.
The young people in the second row, my godfather, my wild aunt, their three cousins next to the groom, they all went to war, one way or another. One did not come back, Hardy, third from the right. He is missing in Russia.
But today, everybody in this picture is dead.