21 November 2017

Stuck in traffic on a dark wet evening. Before I succumb to the usual moaning I try what a friend has offered me this morning, take ten mindful breaths and see where it gets you. I struggle and cheat a bit (eight, ten, wait, concentrate, was that twelve?) and then I resign and fiddle with the radio stations.
A report about an art exhibition. In one of the big wonderful cities on our planet. All of the eight artists have been prisoners and most of them for the last 15 years without trial and from the little I know this will remain so for most of them. In recent years, they have been given the opportunity to attend art courses and this exhibition is a first show of their work.

I listen as the reporter tells me that these men paint the sea, again and again, that in fact, almost all the work on display concerns the sea. Yet, none of them can reach it, none have been able to see or hear or smell the sea in all their years of imprisonment.
I also hear that the work is considered controversial, that it was scrutinized at length for secret, harmful messages and that not all of the intended paintings were accepted by the authorities.

And I hear that none of the work can be purchased or will be given back to the artists or their families.
No, the government of the country where this exhibition is currently on show has decided to burn all art from this exhibition and all other work from these artists.

Burning art, paintings, sculptures, drawings. In the 21st century, in a democracy. Back home, I find the website and scroll through the artwork, looking for any dangerous secret messages. In vain. But what do I know.

Eighty-four years ago, In Mai 1933, the nazis staged the first of their massive book burnings. Five years later, in 1938, they banned all art they deemed degenerate. Not so long ago.

more here

19 November 2017

Awake in the dark I watch how my thoughts wander and get lost. I am thinking this and that and the darkness just sits there around me, unrelenting. I hear my father's voice from our last phone call, the way he mentioned that - by the way - his back pain is now under control. He describes briefly how he solved this particular problem, the way he solves all problems, by defining its cause. I listen to his short lecture on pelvic muscle exercises, delivered with all the confidence of someone who is in no doubt that I certainly wouldn't know the first thing about it. 
And on we go. Once you know the cause, the rest is easy etc.: Once you can confirm it's a virus, you wait for your immune system to get rid off it. Once you identify the error in a specific calculation, you go back to the step you need to correct. Once you realise you said something rude, you simply apologise for it and move the fuck on. How often have I listened to this. Did it ever make sense.
Did I know that my brother, his youngest child (he is 58), has been suffering from back ache for years (yes)? And what has he done about it? Obviously nothing. What is wrong with us. And so on.

In other people's families I have often observed the moment in time when the parent, the father, becomes the child, when his adult children start to explain things to him the way he once explained life to them (and not just about the internet). When the adult children wait - impatiently or patiently - for him getting on with old age. And depending on the secret coordinates of a lifetime, developing a new state of empathy, friendship, gratitude even.

We haven't reached that stage yet. I doubt we ever will. When I wait for him to get out of the car and slowly walk up the three steps to his front door, the same three steps that made him fall down twice in three years out of sheer spite or maybe due to an architectural error, I am just three steps behind the man who has commandeered us around and who has never shown patience or any sign of leniency. He has no time to discuss my sister whom he stopped talking to (or vice versa) months ago. He has identified the problem, female hormones, and come to think of it, the symptoms have been obvious for a long time. So no, nothing he can do.  A simple equation, identify the problem, define the solution. Move on. Leave her behind. 

I catch my breath but in a way so he cannot notice. Better stay neutral. What if I am next. Or maybe I have already been solved out of the equation. Your voice sounds perfectly healthy, you always had a vivid imagination, he tells me. Always had a hard time accepting the science behind a problem.

My daughter, however, his first and most distant grandchild, this enigmatic young woman who moves freely across the globe, working in far away places he never showed any interest in, switching between languages he cannot speak, she can twist him around her little finger, scold him like a naughty boy and he flirts, clumsily and hopelessly. They don't meet often but when they do, I watch with envy.

Today I am tired. In ten days, I will turn 60. Winter is here, dark and damp and cold. I should allow my memories to become gentler, softer. I know. But today, there is nothing I am looking forward to. 

compulsory Sunday walk in the rain

16 November 2017

There are so many things, too many things, that occupy my heart and mind with worry and sadness and yes, anger.

This morning in the waiting room of the ENT doctor (another attack of vertigo requires a medical certificate and once again I am reminded that I would not need to sit here, nauseous, the artwork on the walls and the fish tank in the corner reeling and turning, if I had the courage to apply for early retirement) I met a women from Sudan, a scientist attending the UN climate conference. All week she tried to ignore an ear infection. But after yesterday's lukewarm and non-committal speech by the German chancellor, she gave up. We don't matter, she hissed at me. You affluent countries will just look after yourselves and won't give an inch while we in the poor South are suffering the consequences of your careless lifestyle.  And then she apologized. And thanked me for my city's hospitality. Briefly, we whispered about alternatives and what about women rising but then she was called in and I quickly wished her well and a safe journey home.

We used to get a new edition of the local phone book every year. Before the internet and smart phones took over. There would be a card in the letter box which you handed in at the counter of your local post office to collect the new one. You'd quickly check whether your entry was spelled correctly and put it in that spot reserved for it somewhere by the phone.
We don't do this anymore. The books have become thinner and full of ads and are delivered once a year to the doorstep in the early hours. This morning, we got the 2018 edition. I leafed through it on my way to the paper bin.
The warning is still printed at the bottom on the first page where all the emergency numbers are listed. That it is advisable for women to not list their full first name but if they wish to do so, to not list their address. For safety reasons, it says. 
Later on, I read in a new essay by Rebecca Solnit
"What would women’s lives be like, what would our roles and accomplishments be, what would our world be, without this terrible punishment that looms over our daily lives? It would surely rearrange who holds power, and how we think of power, which is to say that everyone’s life might be different. We would be a different society."
In the afternoon, in a conversation with a friend. I mention the phone book warning and we laugh our sarcastic laughs and then she remembers her teenage years and the priest shaming her from the pulpit for dressing indecently and not braiding her long hair. And how her father slapped her on the way home. I tell her of the time when a potential future boss, then a celebrity in the Dublin alternative scene, forced me to sit on his lap and drink whiskey from the bottle he was pushing into my face (physically, chipping my front teeth) to prove I had what it takes and when I didn't seem to have it, asked me to crawl out the door (physically, on my knees) and when I didn't do this but burst into tears instead, throwing my bag out and down the stairs and how I ran before his foot could kick me.

And all during dinner, I argue with R and get more and more angry and he just looks at me trying to make sense. Where is all this anger coming from, he asks. I don't know what to tell him, where to start.

Caitlin Moran

13 November 2017

today at the UN climate conference

After this flashmob by members of the alternative US delegation (www.wearestillin.com), the room was fairly empty. Only a handful stayed on to hear the preposterously titled presentation of the official US delegation ("The Role of Cleaner and More Efficient Fossil Fuels and Nuclear Power in Climate Mitigation"). Outside, the crowd of protesters included representatives from all participating nations. In the footage I spotted Amy Goodman and Dallas Goldtooth.


08 November 2017

Many years ago - and this is important because even back then we thought things were bad but little did we know - a friend said to me, I give up. I don't believe we are able to handle climate change. We are too stupid, to selfish, too comfortable.
Some days I know that this must be true.  That we are programmed for destruction of our habitat. It fits my general mood. Like the next best climate change denier, I bury my head in the sand. But instead of rubbish arguments based on wishful thinking and outright lies I moan about our failures and impending losses. I have run out of ideas and for a moment while watching the young and healthy masses at last Saturday's climate march (25,000), all those eager people with their dreadlocks and vegan snacks, their inventive signs and colourful flags, the salsa drummers and the pretty young women shaking their long shiny curls, I had to swallow the derisive comments waiting to fly out of my cynical heart.  And then I felt ashamed.
Meanwhile, R feels far more confident. Humans adapt, he tells me, the always have. You are just scared of change. Humans will tolerate a lot and then reach a tipping point and start acting.
I am not so sure.

Anyway, our city is currently hosting COP23, the UN climate change conference and there is a low humming buzz. But people hold back, we are cool. Next week, Leonardo is due to come, we shall see how the masses react. For a few hours each day, we follow a session of two, online. Everybody is very polite.

I met her on Saturday, the Marshall Islands poet Kathy Jetnil-Kijiner, she stood right in front of me and I could see how tired she was. I was just one of too many who shook her hand. I am glad we did not have a chance to speak. What should I say, sorry your islands are disappearing because we burn massive amounts of fossil fuel and love our cars and cheap flights? So sad your baby daughter won't have a homeland?

03 November 2017

"Maybe none of this is about control. Maybe it really isn’t about who can own whom, who can do what to whom and get away with it, even as far as death. Maybe it isn’t about who can sit and who has to kneel or stand or lie down, legs spread open. Maybe it’s about who can do what to whom and be forgiven for it. Never tell me it amounts to the same thing."

Margaret Atwood (The Handmaid's Tale)

31 October 2017

There are moments - and I write this without any sense of melodramatics or self pity - when I am certain that I am balancing very close to the edge, when I feel the frailness of my existence in my breath, when I run my fingers along the bones and muscles of my arms and wonder what it is that keeps me alive and for how much longer.
I have no reasons to despair, I am not terminally ill, I am hovering in between, mostly waiting, for good days, full of energy days, everything light and easy days.
And when it happens - and oh, it happens! - I am waiting, as much as I try not to, for it to end, inevitably, for the familiar roar of illness to catch up with me again.
On really bad days, R says to me, just wait a bit, love, you'll get better. While on really good days, my inner voice says, wait, this cannot last.

A young woman writes to me, her partner - equally young and formerly a successful business man - has been diagnosed with my shitty disease and started to self medicate with pain killers and drink because he has lost all confidence in medicine anyway. She is hoping I can help. A pep talk on attitude, self-respecting resignation, wisdom even.

It takes me a few days before I realise how angry her request makes me. How angry I am with my helplessness. I feel such a fake. There is no cure, I reply. You can change doctors but the treatment protocol is the same. Find an expert you both like, maybe it helps. I write, try distraction, meditation, relaxation, stay informed, all that useless rubbish, complete with links.

I once lived a wild life, in a big house full of people, mad ideas and loud wonderful music, we baked bread and the bathroom had a large hole in the floor boards. We celebrated very big parties, wild parties, spending most of the day moving furniture to create space, stacking albums in large towering piles, covering the floor in the attic with mattresses and blankets for the kids, cooked vast pots of kidney bean chili with brown rice and of course, the drink, the drugs.

I lived in Africa, I have been to India, I have climbed mountains and swam in vast oceans. I slept on beaches and trains, I milked goats, made cheese, mixed cement and built walls. With my hands. I danced all night.

Today, I cycled for almost 15 kilometers through the forest, R tells me, he checked the distance. We stopped for coffee and cake. My hands were shaking, my knees like jelly.
I know I am waiting.
So what.

26 October 2017

The new medical expert has a very quiet voice and I have to lean forward a bit in an effort to hear what she is carefully explaining. I think I like her. She doesn't make a face when I pull out my phone and open the list of questions I had prepared earlier. What app are you using, she wants to know before she whispers her detailed answers.
I know she said that I look well and healthy, that there are certain tests and examinations she wants to carry out, but that I need to take this medicine for ten days beforehand, that she will make a note in my file for the switchboard to give me priority when I am ready to call her, that I should not think of the t word or the c word. And that she wants me to consider maybe not working the three hours I have managed - poorly - in the last couple of weeks.
We part almost as friends for life. 
Outside, the air is mild, people are eating ice cream, I walk into the bookshop and briefly hold that bestselling book on miracles in medicine in my hands. It has a nice cover. I don't dare to open it, gently put it back on the shelf. Instead, I read a few pages of Noam Chomsky's Optimism over Despair
When I go to unlock my bicycle I notice the Roma woman sitting on the steps to the tourist office, begging, with a curly haired toddler in her lap.  She looks at me and I hold my breath. For a moment, I want to run over to her with open arms, hands full of food, care and love. But I turn and walk around the corner and quietly phone my friend at the women's centre. Don't worry, she assures me, go home, one of us will come and have a look now.
I cycle home through my beautiful neighbourhood, the tree lined streets, the colours of autumn. I smile at friends I meet and they wave back and the wind blows the tears from my eyes.

25 October 2017

Fats Domino

He was one year older than my father. But my father always shouted upstairs, turn that music down.

20 October 2017

On Sunday morning a friend sat with me in the garden and while we entertained each other with benign stories of our daughters and partners (her health issues are way beyond your or my imagination, let's just say, it's a miracle she is alive today), she suddenly jumped up and pointed to the exceptionally clear blue sky. Red kites, look, a flock of red kites. Look at their forked tails.
I struggled to see a few dark dots - the sun was very bright and I was not quite fully awake - while she busily counted, 12, 14, whoaah 17!, and confirmed that these were on a stopover from their journey to Africa for the winter. She is a biologist and I am not. It shows.

Birds have played a big role in my life. I am not afraid of them in that Hitchcock kind of way. Also, it's not that I watch them. I am very bad at identifying any apart from blackbirds and the odd blue/black tit, a robin at a push. Some birds just look at me, they do, I swear, and I look back and I know. That they don't care, that I am nothing to them and that it doesn't matter. And it always feels good.

My mother was a keen bird watcher and on winter mornings when we got on her nerves, she would hand us her illustrated bird books together with paper and pen, move the bird house and the feeding tray on the snowy patio, open the curtains and declare the contest open. Whoever counted the most species won. And you had to be very quiet and concentrate.
She was a clever one, my mother.
Occasionally, she still visits me as bird. Not as much as she used to. I wrote about it here. But she was up there, one of the red kites. I am sure. She never looked down at me and I didn't need to look back at her. It felt good.

If I had a bucket list (I don't), it would include witnessing a murmuration. I have seen small ones but I want the real thing, like this one:

or maybe this one, on a lake in a canoe:

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 surprisingly gentle 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: