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

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?
(Yes.)


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.

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

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."

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.

Also.

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:

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.

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.

(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:

childbirth
strong coffee
cigarettes
alcohol

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.

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

agapanthus

runner beans

borage

brassica

buddleia and tansy

day lily battles with pumpkin

imagine their smell

hidden pumpkin

petal confetti

first tomatoes in the greenhouse

sweet woodbine

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.

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.

"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

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.

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

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.

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.

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.

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:

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

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.

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.

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. 

"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

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.

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.

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

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:

 

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. 

"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 

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.

Another morning. I made it. Life shifts and changes gear once again and there is a pale sun shining on the frost damaged garden. We lost a row of potatoes, most likely. The wisteria looks like a badly hung curtain in need of a wash but blossoms are opening up in between. I just did my silly duck walk down to the river and back. I am alive it seems.

Thank you all for your kind comments, you are wonderful. 

Nights always shift everything out of proportion and no, it doesn't help knowing how this has been researched and confirmed by neuroscientists. But once in a while, I think I need to face the darkness with its terrors.
I mean, it's not as if I have much of a choice. My mother was an addict, she spent every night fighting her demons with whatever came in handy. When I was 13 and nervous about a school exam, she slipped a valium into my hand the night before, this will help dear, take it at breakfast.  She was never up when we left for school and I forgot. It only happened once. A while ago, I asked my siblings, did she ever offer you anything as well? It was a difficult conversation, fraught with jealousy and despair. As adults, we think, how dare she. As her children, we think she cared and why her, why did she not offer me one as well and all that fierce competition for her tiny morsels of affection.
We will never speak about it again. But at least that memory is no longer one of my night time terrors.

But there you are, this road is not open to me and so I work my way through my stash of distraction methods and valerian tea if the darkness roars too loudly. It all sounds so easy now as I write it down. It is not. As you know.

Yesterday was Earth Day. Which really is silly because, every day is earth day. We just forget. It's easier. I saw R off to our local march for science. He rarely does go for the crowds but this matters. Later, I met him halfway when he cycled back home along the river in the freezing cold wind.

And here is a short video of Emmanuel de Merode, director of Virunga National Park (Republic of Congo - a place I want to visit in my next life) training for today's London marathon where he is running right now to raise funds for this amazing sanctuary.




If you have the time and want to watch this documentary about Virunga, I think it's still on netflix.

Sometimes I wish I could type 'help me' into google. I wonder whether this is a sign that I am spending too much time online. Or maybe I want to stop thinking and feeling for a while. Hand it all over to a robot running on binary. Or whatever.

I am not joking.  It's just that I cannot sleep for a million reasons.

When I look across our quiet street from the windows beside my desk, I can see a row of terraced houses built in the 1950s. Our neighbourhood is one of the economic miracle housing estates, hastily built and quite ugly, semi-detached and terraced. Most houses have been revamped by now, some several times over. Larger windows, broader front drives, sun porches, small greenhouses, PV panels on the roof, insulation, all the mod cons of our fabulous times.
There is just the one in the middle that looks old and kind of drab but with a wonderful front yard full of flowers. Ever since we moved here almost 20 years ago, an elderly man has been living in it and we have tried completely unsuccessfully to be neighbours. I greet him every time we meet and he steadfastly looks right through me. It's not just me, he talks to almost nobody around here. Rumours are that his wife walked out on him, taking the children. Many years ago. Before my time.
He is a man of habits, obviously retired. In the mornings, I see him dumping his teabag in the compost bin, after lunch he wheels out his bicycle for a short ride, occasionally, he takes the bus to town dressed in his trench and wearing a hat. In the summer, he has a man in to do the garden and once a week, a young woman comes to clean. He must be quite old now, in his 80s, I guess. I last saw him on Good Friday walking carefully along the flowering lilac bushes at the end of the footpath.
But for the last two days, his blinds are down, the curtain of one of his upstairs windows is half drawn.
I think he died. Or is in hospital. Someone arrived and let himself into the house yesterday.
I don't know this man but I am shaken by waves of anxiety.
We are mortal. We may think we know it. But we don't.
I made R check his blood pressure twice today. 

I am working on losing that fear of having back problems forever, I am not very successful. I am not in agony, but for reasons totally out of my control I think I should deserve no pain whatsoever. The other night I watched a talk by one of the eminent medical specialists who peddle their expert knowledge on the media incl. books and dvds and stuff. He looked impressive and fatherly standing there, first on his left and then on his right leg, demonstrating how this stance improves the strength of the entire back and that we should all brush our teeth standing on one leg. Then he had the audience bounce on their heels and after another 20 mins of positive vibes and hilarious exercises,  I felt a lot better. Also, his purple trainers looked good in combination with his little round belly. On his website, he provides impressive statistics and after 20 years of proofreading medical research papers, I have developed a considerably awe of statistics. Rather: I haven't a clue. If two thirds of my fellow citizens suffer from back pain at least once every year, I should be able to handle this. That and the fact that only two percent of back pain events require surgery. Plus, I think I am owed extra credit in that category, having had spinal surgery twice in the space of 21 years.
So on good days, I am slowly getting there. As regards the back. We went walking in the woods twice now and I survived. Yesterday, I slipped and fell on my bum, hard. And I survived.
As for the other symptoms of which the ongoing weight loss seems to be most alarming to some, I quietly list them as per instructions for the next medical appointment.

They don't bother me as much as they do R (I am as brainwashed as the next woman when it comes to surprising weight loss) but overall, things are a bit all over the place and I am grateful for a world of distractions.

We may not have an anthem

we may not have a flag
we are the world of
people who move,
people who move on


we are called migrants
immigrants, refugees, asylum seekers,
stateless, no papers,
on the run...
we are, they say, a diaspora
we are, they say, between cultures
or a mosaic of cultures
sometimes we are, they say,
rootless cosmopolitans
or citizens of nowhere

sometimes they say
or we say
we are in exile
but that asks us to imagine we are spending all our time
looking back over our shoulder

we are
supposedly in a limbo
lacking something
that everyone else has got
and the only solution is for us to join in the anthem
and grab the flag
only then will we become the real deal:
a full human being

up until then they say we are divided, split people
people who are less than whole
just hanging, suspended
in a state of longing for what’s been before
and longing for something here
that we can’t ever have
no matter how hard we try

but there’s no need to try:
this ‘true state of being’
that can only be true
when it’s a Not-migrant, Not-immigrant
state of being that we have to long for,

we can say we are the travellers and movers
the sometime settlers,
the migrants, the immigrants,
the diasporas,
we exist
we live, we work,
we eat, we breathe
we may look after others
we may be looked after
we may find love
love may find us
but we don’t need shame
we don’t need guilt
we don’t need to hide
we don’t need to apologise
we don’t need to beg or grovel

we are the world of
people who travel
we are people who leave
people who move,
people who arrive
Yes we can say
we have arrived
but we may leave again
and arrive again
you cannot sum us up
as purely of one place
simply because we are in that place
your snapshot of us may say
we are here
it may say we are there
here or there
there or here
but in a life
we might be both here AND there.
in a family across generations
parents, grandparents, children
we might be both here AND there
there AND here
and we are not less for being so

Michael Rosen, yes, THE Michael Rosen who wrote We're going on a bear hunt and all these wonderful poems for children to keep a clear head and get on with the wonder of life.

The link to the video is here.

Killary Harbour/An Caoláire Rua (Atlantic coast Ireland) 2009

Reclining on the blue leatherette space chair, I fiddle with the remote control for a while, figuring out which way to lift the various leg support options and how to keep my back straight, where to plug in my phone and how to avoid getting the headphone cord tangled up with the iv drip tube. I put my flask of chamomile tea on the little side table, together with the container of porridge with fresh blueberries R made earlier (I eat it cold in the end, my bp was too low to wait for someone's help with the microwave), the paperback (I never opened) and the stack of consent forms I had signed earlier.
And for the next eight hours I am surrounded by calm, kind efficiency. By people who wake up in the morning and get ready for a meaningful day, taking blood samples, adjusting infusion speeds, monitoring bp and heart rate, who run down aisles and hold hands and untangle cords and show off their colourful socks to make me smile. All day I was showered with dedication and purpose (which in my case was to administer the next round of monoclonal antibody therapy). I loved them all.
There I was, feeling broken and pretty useless, my life's purpose and dedication gone out the window (at least for the time being) and for a moment, I wanted to shout, don't waste your beautiful, efficient energy on me, I've had my share, go and look for what needs fixing so much more urgently.

But believe me, at the same time, I urgently wanted them to spend it all on me and me alone. And yet:

We already have everything we need. There is no need for self-improvement. All these trips that we lay on ourselves—the heavy-duty fearing that we’re bad and hoping that we’re good, the identities that we so dearly cling to, the rage, the jealousy and the addictions of all kinds—never touch our basic wealth. They are like clouds that temporarily block the sun. But all the time our warmth and brilliance are right here. This is who we really are. We are one blink of an eye away from being fully awake.

Pema Chödrön

If we want to support each other's inner lives, we must remember a simple truth: the human soul does not want to be fixed, it wants simply to be seen and heard. If we want to see and hear a person's soul, there is another truth we must remember: the soul is like a wild animal - tough, resilient, and yet shy. When we go crashing through the woods shouting for it to come out so we can help it, the soul will stay in hiding, but if we are willing to sit quietly and wait for a while, the soul may show itself. 

Parker Palmer

Mostly, I am angry and I am the first person to point out that it's not something to dwell on. And I couldn't even identify a particular reason. I just get mad at about everybody and everything.
Like a ten year old I am looking for the icky nasty whatever to blame and lash out at.
Seriously, I almost feel like laughing. This must come to an end. If only I wouldn't be so mad about it.

Spring is exploding around us and the garden is in top shape thanks to none of my personal efforts. Although I did move the lawn mower around for a while yesterday while R pointed out all the bits I missed. There is fresh asparagus waiting to be cooked, rhubarb ready to be picked for a crumble, the pear trees in full flower and so on.

My physio program is showing excellent results, I feel like Michelle Obama when I stretch my upper arms. Alas, the right leg remains a stubborn and pretty useless piece of unresponsiveness.

Tomorrow, my boss wants a telephone conference and I have been rehearsing one hundred ways to tell him that my health is none of his business. But I will probably cave in and let him walk all over me as usual.

It doesn't matter, really.


This here is the current president of Ireland, Michael D Higgins. He is just a nice guy, a published poet as well. His role is basically ceremonial and representative, his political influence is marginal, a bit like royalty. Here, we see him at a funeral, consoling the son of a Coast Guard pilot who died when a rescue helicopter crashed two weeks ago during poor weather conditions.
I wish every country had a president like him. Anyway, this picture makes me feel less angry.

Picture source: Eamonn Farrell/Rollingnews.ie

Europe is currently bound to the North by populism and to the South by refugees drowned in the sea. To the East, by Putin's tanks, to the West by the Trump wall. In the past by war, in the future with Brexit. Today, Europe is alone more than ever but its citizens do not know it. Europe is, however, for that reason the best solution (. . . ). Globalisation teaches us that today, Europe is inevitable, there is no alternative. But Brexit also tells us that Europe is reversible, that you can walk backwards in history, even though outside Europe it is very cold. Brexit is the most selfish decision ever made since Winston Churchill saved Europe with the blood, sweat and tears of the English. Saying Brexit is the most insidious way of saying good-bye.
Europe is not just a market, it is the will to live together. Leaving Europe is not leaving a market, it is leaving shared dreams. We can have a common market, but if we do not have common dreams, we have nothing. Europe is the peace that came after the disaster of war. Europe is the pardon between French and Germans. Europe is the return to freedom of Greece, Spain and Portugal. Europe is the fall of the Berlin Wall. Europe is the end of communism. Europe is the welfare state, it is democracy. Europe is fundamental rights. Can we live without all this? Can we give this all up? For what?

from a speech by Spanish member of the European Parliament Esteban González Pons on the 60th anniversary of the Treaty of Rome on 25th March 2017

Seriously, Theresa May, you have no idea what you've signed away.