"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."
23 June 2017
20 June 2017
17 June 2017
"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".
Ph.D., Magdalen College, Oxford (1993)
Blog: http://www.ecologywithoutnature.blogspot.com. Twitter: @the_eco_thought
16 June 2017
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
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.
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
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
I wish my father would have never explained to me about the water cycle and the importance of aquifers when I was a child who just wanted to spend a precious moment in time with him by the stream at the bottom of the field beyond our house.
I wish my parents never took it for granted with their books and science magazines and endless Sunday walks that I would recognise how everything in the natural world is connected, instilling in me, by the way, a deep respect for life on earth, from the dead lizard I carried for a while in the bib pocket of my overalls to the swifts nesting below the eaves and woodlice crawling inside my welly boots.
I wish I had spent my university time in a fever of mostly partying and never read a single sentence by Rachel Carson, James Lovelock or EF Schumacher. Never heard of the Club of Rome, A Blueprint for Survival, Fritjof Capra, Chico Mendes.
I wish I never went to the inaugural meeting of the Green Party, never heard Petra Kelly say that if we want a future, the future must be green.
How I wish I never met Vandana Shiva and Farida Akhtar, never listened to a word from Wangari Maathai or Jane Goodall, never watched David Attenborough.
I wish I never stood at the viewing platform of the Grossglockner glacier on a hot August day in 1983 with a sleeping baby in my arms, while R took pictures of the massive ice sheet that today has shriveled to a fraction of its size.
I wish I never let myself be carried by the strong warm currents of the Indian ocean, surrounded by mysterious schools of fish, floating above a paradise of colourful corals that are now dying.
But most of all, I wish I had never seen this:
31 May 2017
When you don’t hear others, you don’t imagine them, they become unreal, and you are left in the wasteland of a world with only yourself in it, and that surely makes you starving, though you know not for what, if you have ceased to imagine others exist in any true deep way that matters.
read her entire essay here
you will not regret it
28 May 2017
Yesterday was a vertigo and nausea blur, vague memories of eating delicious ripe apricots in the evening, balancing on my bed, carefully holding a paperback in my arms waiting for the letters to stop whirling and turning, telling myself that all vertigo attacks have subsided before as this one surely will, eventually.
These days it is blatantly obvious that I am simply the wrong person for this disease.
Assuming that there is indeed a right person to live with a serious chronic condition, the one with all the red warning lights and the overlap syndrome and B symptom caveats. In short, the kind which causes smart medical experts to sigh and get off their comfortable chairs, walk around their shiny desks to hold your hands. If they have ever heard of it, that is.
This disease that currently rules my life (it comes in flare-ups and I remain hopeful that like previous ones the current one will eventually subside, too) used to be called Wegener's disease, named after a German pathologist who first reported on this condition in the 1930s, a time when there was no treatment, the few patients he based his findings on had died quite suddenly.
It's just my luck that Friedrich Wegener was a nazi, and possibly a dedicated one. This from an investigation by Woywodt and Matteson in Rheumatology (Oxford) (2006) Vol. 45: 1303-1306:
The facts we have uncovered do not prove Dr Friedrich Wegener guilty of war crimes. However, the evidence suggests that Dr Wegener was, at least at some point of his career, a follower of the Nazi regime. Dr Wegener's mentor, Martin Staemmler, was an ardent supporter of the racial hygiene. In addition, our data indicate that Dr Wegener was wanted by Polish authorities and that his files were forwarded to the United Nations War Crimes Commission. Finally, Dr Wegener worked in close proximity to the genocide machinery in Lodz. His interest in air embolism is also troubling. Although we know that Wegener was a popular and skilled teacher and colleague, our data raise serious concerns about Dr Wegener's professional conduct.
In 2008, The New York Times wrote that a nazi past casts a pall on name of a disease. For a while, this story was my party piece, I told it with a grin, to take the edge off when I had to react to another round of never-heard-of-it remarks. I don't do that any longer. I am also not one who is hurt or insulted by the name of this shit disease. That's the least of my problems right now.
Today, I am mostly just mad and jealous of R and everybody who can walk without needing a wall to hold onto. But I am repeating myself.
27 May 2017
A couple of years ago, I would listen to this song every day and it drove my daughter mad. She banged her door in disgust and called me all sorts of names. I bet she doesn't remember.
Gregg Allman died today. Much too early.
26 May 2017
The sun was not yet up, and the lawn was speckled with daisies that were fast asleep. There was dew everywhere. The grass below my window, the hedge around it, the rusty paling wire beyond that, and the big outer field were each touched with a delicate, wandering mist. And the leaves and the trees were bathed in the mist, and the trees looked unreal, like trees in a dream. Around the forget-me-knots that sprouted out of the side of the hedge were haloes of water. Water that glistened like silver. It was quiet, it was perfectly still. There was smoke rising from the blue mountains in the distance. It would be a hot day.Edna O'Brien (The Country Girls)
The past couple of days have been filled with sheer exhaustion and huge portions of the day I just spend sleeping or dozing. I try to not think why this is so.
And yet, I am so restless.
I hear my mother's voice somewhere from deep inside of me, her disgust with my lack of dedication, the way I just do nothing, letting myself go. In an attempt to shut her up, and like the good daughter I was I am not watching tv before sunset. She would certainly also disapprove of my laptop even if I showed her that I mostly work and read on it. Proper literature, serious news media and all.
In brief moments of absurd clarity I realise that I am no longer the person who needs to be afraid of her judgement. It's only a memory.
24 May 2017
"Altruism and empathy are what binds us together, and what defines us. We should let no one distract us from this central fact of our nature: neither terrorists nor those who, in response to them, demand that we slam our doors in the faces of an entire community or an entire religion.
Our humanity, in both senses of the word, is on display all over Manchester. You can see it in the queues at the blood donor centres, in the hotels and the private houses that have been thrown open to people stuck in the city after the concert, in the messages posted on social media to help people find missing members of their families, in the donations that thousands of people have made to support victims of the attack, in the taxis giving free rides to hospitals and homes.
But it’s not just Manchester: almost everyone, everywhere, behaves like this. And it is when horrors such as the bombing strike that we remember it. Our task now is not to become the society the terrorists want to create.
So let us celebrate what we are. Let us stand in solidarity with the victims of the attack, while ensuring that justice reaches the perpetrators. And let us not allow either a tiny number of psychopathic murderers, or those who in response to them wish to suppress our humanity, to distract us from the magnificent facts of our nature."
20 May 2017
As a start, I need to remember what day of the week it is and also, the actual date, the month, what season and what the next meal will be.
Next, I must put that phone call out of my mind, the one where my boss (the much lauded super important research scientist) told me yesterday that - as I am obviously neither getting any better nor any younger - he has started not only to advertise my position but to interview my prospective replacements.
I also need to laugh about the email from his secretary, the one where she invites me to attend the first interview on Monday at 9 am.
I have never wasted much time thinking of what my life would be 'later' when I am no longer working, when we're old. Not in any detail. Of course, there were the wild dreams of travel, years of travel, working odd jobs along the way, visiting places, people, ideas, getting wiser, more grey hair and maybe having slightly less energy, becoming more modest in our physical adventures. Stuff like that. Airy fairy stuff.
Whatever. But my health, I took for granted. Never wasted a thought on it.
But none of that really matters.
Early this morning I sat on the floor in a corner of our bedroom, blowing my nose after a spell of furious sobbing and kicking and hissing at life in general and me in particular when R opened the window wide and said, oh look, blue sky.
That's when I ran out of excuses. And the day has been quite lovely so far.
There have been many days like this one in recent years, reminding me that basically, I can be a positive confident person and that there is no place in my life - tough as it is at times - to be upset about losing my job and worrying about reduced financial means or moaning over someone's outrageous attitude to my illness and all that shit.
I still love a good cry, though.
16 May 2017
Will she be upset, sad, angry? Will she punish me, lash out at me, make my life miserable? What price will I have to pay for deserting her?
I was 40 years old, scared, the way a child is scared of being found out.
But it was only for a short while.
Often when I think of her now, I see her walking alone behind us the day my brother's youngest child was baptised. For weeks, my brother had been negotiating with our parents whether they would find it in their hearts to both be there. Regardless.
But no. They were adamant and in a bizarre way, for once in total agreement with each other. Either him or me, either her or me.
My brother cried, briefly, my father decided to get out of the picture and my mother got her hair done. That sounds harsh. It was exactly that.
The day was glorious, a perfect summer's day in the Franconian countryside, a baroque church in a small village among rolling hills, a long line of tables under the thick, cool canopy of walnut trees, singing and laughing, food and wine. And later, after too much food, a walk down to a small river. Setting off in small groups, talking, joking, children running ahead, the adults passing babies and toddlers from one set of arms, shoulders to the next.
My sister puts a hand on my shoulder and whispers, look back. I turn and there she is walking all alone, already some way behind us, my mother in her elegant suit, her expensive handbag, her high heels, despite her condescending smile she appears almost lost, helpless.
I look at my sister and I swear, we are about to turn and walk towards her. I can feel her pulling us, her two dutiful daughters, coming to her rescue, keeping her company, making her life bearable - or at least trying to.
No, my sister takes my hand. No, let her walk alone. Leave her, she is almost shouting at me. We are running now. When we reach the river, my sister has stopped crying.
Much later, my mother carefully sits down beside us and lights a cigarette. Silently.
15 May 2017
And now more diagnostics.
May be this.
May be that.
Maybe just bad luck.
Try not to think ahead.
. . . what ancient and obdurate oaks are uprooted in us in the act of sickness . . .Virginia Woolf
10 May 2017
Week two of the rehabilitation program and the earth is still turning. Today I actually walked out of the building in relatively high spirits, delighted with the prospect that I if I can manage seven hours of this, I may be able to attempt working four hour days in my office again. Eventually, i.e. in
I drove home, a cheerful sun was shining at last, I let myself into the house and promptly collapsed onto my bed. But hey, I am barely half way. Many - tons of - more exciting hours of physiotherapy and muscle rebuilding and nerve stimulation and whatever else are ahead of me.
Walking of course is still a euphemism for what is actually happening when I lift one leg in front of the other. It does look like it from a distance, in slow motion, for a short while. Which is better than nothing. And I can get from A to B.
As of today, I am trying out a snazzy looking but rather complicated velcro concoction that I strap around my ankle and foot - with no noticeable effect (yet?). There is a selection of alternatives, which I am going to work my way through under the watchful eyes of a jolly occupational therapist who is also going to bully my employer into providing an electronically height adjustable desk with matching state-of-the-art desk chair. If the next session with the good rehab doctors results in them considering me fit for work (incl. getting there and back), that is.
The coffee is decent, the food is disgusting but luckily, I can bring my own. The company is delightful. Today, I spent one hour with three bus drivers, we were cycling in a pool of hot water up to our necks, talking about our surgeries and the best ways to get our spouses to do more or less all of the heavy lifting before racing each other to the finish. I won, which means that I can choose the music for the next session in two days time. (The bicycles are stationary. The music was hard rock.)
So, all in all, life is surprisingly different all of a sudden.
While shit happens all over the place.
And now for something completely different:
04 May 2017
30 April 2017
The word of the day is rotten. I feel rotten. Physically that is, the mix of symptoms is yuk. Could be anything. Could be nothing. Probably something. I shall not be asking dr google again. Instead, I will just continue on the endless path through the complicated maze of diagnostics reserved for people with autoimmune diseases.
I could dwell on it in detail but apparently blogging about illness is not the thing to do. In terms of clicks and readers. But that's not why I blog anyway and it doesn't stop me from rejoicing about every single comment, wonderful readers.
So, against all trends and warnings, I shall just mention that I am spending this sunny Sunday lying on the sofa, distracting myself watching British tv thrillers, reading spy novels, solving cryptic crosswords, booking expensive flights to Portugal in eight weeks time - as one does.
And yet, yesterday evening, we cycled along the river just before sunset. The air was blue and pink and still and clear, the water was moving gently. People smiled. All was well(-ish).
If I can do that I can fly to Portugal. Not?
Last Friday, I had my first day at the rehabilitation centre. This is going to be hard and great fun. In my worst dreams I see myself failing dramatically, as in passing out and exiting the place on a stretcher. In my best dreams, I am walking out of there in three weeks time like a young deer, skipping and jumping. I am already deeply in love with the staff of experts and miracle workers. Anyway. Three weeks.
A few nights ago, I watched I am not your negro (because reading James Baldwin as a teenager changed my world) and from my distant and insufficiently researched and highly opinionated vantage point, aka high horse, Baldwin's argument here (from his 1965 debate speech at Cambridge University’s Union Hall) explained to me why that trump geezer got elected after eight years of Obama.
To punish, to show all those liberal and open minded and diverse people who's boss after all.
Tell me I am wrong, tell me I am ignorant. Whatever. (But watch the film if you get the chance.)
"I remember, for example, when the ex Attorney General, Mr. Robert Kennedy, said that it was conceivable that in forty years, in America, we might have a Negro president. That sounded like a very emancipated statement, I suppose, to white people. They were not in Harlem when this statement was first heard. And they’re not here, and possibly will never hear the laughter and the bitterness, and the scorn with which this statement was greeted. From the point of view of the man in the Harlem barber shop, Bobby Kennedy only got here yesterday, and he’s already on his way to the presidency. We’ve been here for four hundred years and now he tells us that maybe in forty years, if you’re good, we may let you become president."read the source
watch the clip
27 April 2017
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.
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.
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.
23 April 2017
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.
17 April 2017
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.
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.
15 April 2017
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,
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
supposedly in a limbo
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,
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.
13 April 2017
10 April 2017
|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.
06 April 2017
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.
02 April 2017
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.
29 March 2017
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.
26 March 2017
No supernatural powersClive James
Need be invoked by us to help explain
How we will see the world
Dissolve into the mutability
That feeds our future with our fading past:
The sea, the always self-renewing sea.
The horses of the night that run so fast.
After seven years I am almost used to living with this disease. Almost. In other words, I am not and I doubt I ever will be.
But there is such a strong desire to relax into this state of imperfection, of all the quietly murmuring threats and sudden periods of unrest, of never quite getting there, of frayed edges and dark holes I might drop into at any moment.
I want to feel all this without being frightened, without feeling diminished or less alive. Living with a chronic illness does not mean that my luck has run out. It's just a different kind of luck for me now.
There have been times - and now is one of them - where I have been so washed out and overwhelmed by symptoms and additional events and all the tests and treatments etc. that doing normal stuff ever again seemed almost impossible and as a result, it took me weeks and weeks to regain my confidence. Last week the physiotherapist praised the way I can now spread my toes and hold my leg. When afterwards I tried to explain this to R I could not find the same enthusiasm for what suddenly felt like only a minor achievement. After all, the recovery from the spinal surgery is as good as completed. In moments of weakness, I let out brief sobs of frustration, as I may never recover the full use of my right leg again but it feels more like a small mechanical glitch (as long as I can cycle). But in the bigger picture, the one where ANCA vasculitis rules, this is truly nothing.
No cure, only The Cure:
This morning on the phone to S, I overheard R mentioning for the first time the possibility of me never going back to work. I am not so sure, I shout.
24 March 2017
In 1999, I actually shook Bill Clinton's hand. Nothing to get excited about, I was part of an invited group of onlookers (the things you do on a Saturday afternoon) and he decided to mingle unexpectedly. He was much smaller than I had imagined, his nose was big and red and I didn't think much of the speech he gave. In fact, I had come to listen to another speaker.
Anyway, I am neither here nor there as regards Bill Clinton.
But when I listened (on the radio) to his eulogy at the funeral of Martin McGuinness a few days ago in Derry, he got to me. It was a moving speech, full of humour and great feeling, personal and honest. Not some scripted garble read from a teleprompter. It's only 11 minutes long but worth listening to. And I couldn't help but compare. With that nasty excuse of a president across the pond. Whom I cannot imagine spending sleepless nights on peace negotiations in a small country across the pond, whom I cannot image to even have respect for someone like Mandela. To work for a future where we need to expand "the definition of ‘us’, and shrink the definition of ‘them'".
- Taoiseach (pronounced: teeshock) = prime minister of Ireland
- President Higgins = Michael D. Higgins, current president of Ireland
- Gerry = Gerry Adams president of Sinn Féin, life long companion of Martin McGuinness, both were active leaders of the IRA during the Troubles in Northern Ireland
- First Minister Foster = Arlene Foster, leader of the (protestant) Democratic Unionist Party (DUP) in Northern Ireland. Both her father and herself as a teenager survived bomb attacks by the IRA.
- What the sitting Taoiseach said in the US = St. Patrick was an immigrant
- Ian Paisley = Protestant religious leader in Northern Ireland, life long active (and vicious) opponent of any peace process in Northern Ireland became friends with Martin McGuinness when they were both elected as leaders of the Northern Ireland government in 2007.
- John Hume = former leader of the Northern Ireland Social Democratic and Labour Party (SDLP), co-recipient of the 1998 Nobel Peace Prize.
21 March 2017
We are on a ferry travelling to Heligoland. The ferry is crowded and noisy and we have a hard time keeping track of each other. On land, I have an appointment with a surgeon who makes two large incisions in my abdomen. His operating theater is the back room of a pub. He remembers something he must get and puts a large brown sticky bandage on my abdomen.
I wait for a while but I know that he is not coming back. I get up and try to find R and the friends we have been travelling with but the crowds push me towards the railway station and I take a train home.
When I walk into the house, R and all his things are gone.
I rarely remember my dreams. This one felt like a cold wind when I woke from it and I had to get up, wrapped myself into a blanket and went downstairs where R was going through his early morning teacher routine (listening to the world service, reading on his phone and drinking black tea). Like a child who cannot keep a secret I blurted out my dream and he looked at me and said, it's just a memory of your mother, go back to bed.
In the late 1980s, my mother repeatedly tried to kill herself - unsuccessfully. I wasn't there, I have no idea how serious she was, how much of it may have been due to whatever mix of drugs and drink she was trying to shake off. I had left all that behind me years ago. I was safe and sound living in paradise.
My sister eventually forcefully persuaded her to spend some time in a fancy clinic on the North Sea coast and when she returned home after several weeks, probably sober and with good intentions, my father had packed up his stuff and left like a thief in the night.
Years later during one of our rare visits she told me that while in the clinic, she had read a travel guide to paradise and had made inquiries about airline tickets and vaccinations, putting all her hopes of recovery, of saving her marriage, into visiting the daughter who had abandoned her and who was now living in a tiny African country. And while she told me this, she started to cry and then she pulled the travel guide from the bookshelf and threw it into my face and I left. That was not a dream. That was how we communicated.
Heligoland is a rather dismal place, a small island in the middle of the rough sea, crowded with day visitors buying duty free booze. At least that's what it looked like in the summer of 1978. But i was seasick and supposedly chaperoning a group of troubled teenagers. A job I got through the student union.
18 March 2017
Spring is just around the corner. The spuds are in the ground. Pulsatilla, almond trees and the little quince tree are busy flowering. The hedge is greening and the blackbirds are messing through the compost. Sitting outside for my solitary lunch today I spotted a butterfly, a painted lady (Vanessa cardui) just like the five we released last summer and decided that it had migrated back to us. And why not.
I am in a strange place. Hovering in between my spectacularly crashed house of cards, aka rehabilitation program, and the dreary reality of upped meds and a week of diagnostic testing ahead of me incl. hours pretending to read meaningful literature on my phone in waiting rooms.
In other words, the immunologist suggested I was not exactly fit enough for three weeks of six hours/day of physio and massage and jogging under water and whatnot and gave me the sternest of looks across her monitor and a short snappy lecture on treatment priorities and the dire potential of my current display of B - symptoms. Of course I crumbled like a stale pretzel and almost apologised.
Part of me feels like a fake (what if these symptoms are only figments of my imagination?), while the remaing pitiful rest is trying to run away from admitting that I may have asked for too much.
That whole patience stuff? I'll never get it.
Whereas R - bless him - insists that I have been here before and will crawl out of it again, successfully (with the help of the next round of monoclonal antibody therapy).
Meanwhile. I cycle along the river. Thirty minutes (or 6 amazing km) at a time pushing against the wind. I may not be able to walk with two legs but who cares. Keeping up appearances. My mother taught me as much.
PS. I am not in pain any longer. Not really. Just finished week 12 of sick leave and the German health system based on the principle of a society of mutual solidarity (as opposed to charity or lottery or profit margins) is paying 90% of my salary. However, the required paper work is incredible. Who reads all these forms? Is this meant to be a new form of therapy?
14 March 2017
So do the romantics, the people who have visited to see the land of their ancestors or the concept sold by Irish pubs worldwide or whatever, and found shamrocks and strange dark beer with creamy tops and maybe some deep Celtic mystery, but more likely leprechauns and jolly dancing and all the other stereotypes.
I was one of them, many years ago. Now, I only want to visit and when I do, I fall in love with it, landscape, people and all, and want to move back, immediately. But my Irish man will not hear of it. He does have the bigger picture. Believe me. He loves Ireland, too.
Ireland is complicated. But Ireland is European, fiercely European. And Brexit is not. And that is going to be a huge problem. Something to be afraid of. Because there is the matter of Northern Ireland, that small upper right hand corner of the island of Ireland. And I ask myself these days, does Theresa May actually have any idea?
To illustrate my point, first Seamus Heaney (Nobel Lecture 1995)
One of the most harrowing moments in the whole history of the harrowing of the heart in Northern Ireland came when a minibus full of workers being driven home one January evening in 1976 was held up by armed and masked men and the occupants of the van ordered at gunpoint to line up at the side of the road. Then one of the masked executioners said to them, "Any Catholics among you, step out here". As it happened, this particular group, with one exception, were all Protestants, so the presumption must have been that the masked men were Protestant paramilitaries about to carry out a tit-for-tat sectarian killing of the Catholic as the odd man out, the one who would have been presumed to be in sympathy with the IRA and all its actions. It was a terrible moment for him, caught between dread and witness, but he did make a motion to step forward. Then, the story goes, in that split second of decision, and in the relative cover of the winter evening darkness, he felt the hand of the Protestant worker next to him take his hand and squeeze it in a signal that said no, don't move, we'll not betray you, nobody need know what faith or party you belong to. All in vain, however, for the man stepped out of the line; but instead of finding a gun at his temple, he was thrown backward and away as the gunmen opened fire on those remaining in the line, for these were not Protestant terrorists, but members, presumably, of the Provisional IRA.
Second, Martina Anderson, Member of the European Parliament, today (I am generally not a friend of Sinn Féin, her party, but she does have a point):
09 March 2017
PS: The grape hyacinths are lovely this year. Well done.
07 March 2017
Her posts made my heart leap and open my eyes to the intricate beauty of nature again and again.
In April 2015, she wrote
The calamity was a brain hemorrhage and she died some weeks later.There's nothing like a sudden calamity to bring things into perspective.
Her blog is still online and I hope it will remain there for ever as a celebration of Paula's gifts and insights. You can get lost there, reading and thinking for hours.
The blog is here.
Today, her partner posted a link to a review of Paula's poetry and oh my, she was an amazing poet.
…We, who boast of souls, can't countenance
the gray and small, the commonplace and humble.
Yet watch the squirrel flow along the fence,
feet grazing the pickets, impossibly nimble—
he does not amplify his self-display
in social media, or leverage
his brand, consultant-honed; does not employ
a life coach, guru, shopper, trainer, mage.
Undisturbed by thoughts of betterment,
he gazes back at me through window glass
with such a pure and cold indifference
that it could swell and fill the universe,
replacing profit, noise, ambition, greed
with something truer than the love of God.
06 March 2017
I went into a bit of a huff last week. Sliding into a dark pond covered in duckweed, knowingly and yet, the way it makes you feel. Guilty and couldn't care less at the same time.
Oh poor me and so on. But shhhh, nobody was looking.
And then I cycled. Twice. Short cold windy distances. Terrified I should do harm to my back. But, oh the freedom.
My application for the medical rehabilitation program has been approved, starting next week Wednesday, six hours/day, five days/week for three weeks. I expect nothing short of miracles. Seriously. Or else. (I am scared shitless it will come to nothing and I shall remain a stranded beetle forever).
04 March 2017
01 March 2017
Our assessment has been sent out to you by post today. Details on our decision are not communicated by phone or email.Jeez, I am not good at waiting.
If they refuse, R reassures me, we'll get you into it privately, we'll have something figured out by the end of the week.
I have seen worse cases, my GP tells me, believe me.
Be patient, the physiotherapist lectures me, peripheral nerve damage repair can take a year or longer.
In my mind I am
My bicycle could be ready tomorrow.
28 February 2017
Let's take a look at Ludwig and Margarete, my father's great grandparents. Don't they look serious? Yes, of course, having your picture taken was serious and momentous. I wonder what was the occasion. Maybe they were just showing off their status.
The book in her hands is a small collection of poetry and sentiments, one for each day of the year. It's downstairs on my bookshelves somewhere. Someone long ago used it as flower press, whenever I open it, small trembling bits of disintegrating flora flutter to the ground.
My grandmother always and with pride mentioned that Margarete was from a mill estate on one of the meandering Franconian rivers. I found this picture of her childhood home on wikipedia:
My father tells me that as a child he used to cycle there with his friends during the summer, to watch the water mill and look for tadpoles. After the war, it was a hotel for a while, with a popular beer garden. Today, the big house is a retirement home.
When Margarete lived there as a child, the online census data of the kingdom of Bavaria also lists 13 cattle on the property. My grandmother always mentioned Margarete's father, the old W, the big mill owner and butcher. In Franconia, you do show off your wealthy relatives. It's all part of who you are.
But doesn't Margarete look exhausted, and much older than her husband (who was in fact seven years her senior). Between 1859 and 1874, she gave birth to nine children, six boys and three girls and lost two of them during the typhoid fever epidemic of 1872.
Ernst Friedrich, her fourth son, ran away from home when was 17 yrs old and according to my grandmother's handwritten records, he emigrated to the US that year. I think I found him, a tin smith, a painter, a carpenter, working first in New York and later for the railroad in California. Shipping records list him arriving in 1887, as 'Norwegian' albeit with German as his native language, his father and mother living in Bavaria. The last census records tell me that in 1930, aged 60, he lived as a lodger, single, in employment, in Los Angeles. If it is indeed him.
I have no record of Margarete's death but judging from that photograph, she probably did not live to a ripe old age.
Ludwig, who looks slightly pompous here, certainly well fed, comes from a long line of prosperous metalworkers, blacksmiths, locksmiths, you name it. The oldest record of the family business that I have found dates back to 1562 and Daniel, Ludwig's eight-times-grand-father, registered as a blacksmith at the same address where my father's cousin are living now. Ludwig died when he was 64 years old, which was well above the average life expectancy at the time. (His oldest son, Karl, inherited the family firm, where my grandmother, Karl's oldest daughter, sharpened her business skills during WWI.)
Ludwig was well off. And Margarete must have been a good catch. I wonder, did they fall in love? Or was it all a shrewd bit of matchmaking? I suspect the latter. We are in Franconia, after all.
27 February 2017
Slow life report seven weeks after surgery. The birds are very noisy and busy. I counted three (3!) of the 100+ snowdrops of previous years in bloom. When I accused R of of having dug them up last summer he did not deny it. In fact, he gave his usual spiel about useless plants taking up valuable space. I grow veg, he says.
Seriously. This is what the world has come to.
At this stage, I am ready to sell my soul for an evening in the old armchair, all crooked and rolled up, legs hanging over the side. Instead, I watch an old Endeavour episode, lying on my side, while R tells me what I am missing from the plot because, well, it is a completely different angle.
Last night, I watched American Honey, which you can watch from all angles and still find amazing and sad and strangely hopeful.
But. But. But. I am able to walk down to the river and back and every day, I add another very tiny loop through our quiet neighbourhood to extend the distance. I am allowed to sit for an hour max at a time (albeit no sofa or armchair). Twice a day, I diligently do my exercises as directed by the physiotherapist. I even cook dinner occasionally. In fact, I am discovering the many things a person can do while keeping an upright back but without twisting or bending: ironing, hoovering, washing the kitchen floor, cleaning the bathroom sink (but not the bathtub or the shower), moving tomato/pepper/aubergine seedlings into larger pots, cleaning the fridge - all suddenly delightful activities for a formerly and still somewhat stranded beetle.
Also, at some stage next week, my bicycle will have been fitted with state-of-the-art saddle suspension and elevated handlebars and I shall be able to cycle again - only for short flat and therapeutic distances, don't hold your breath here.
However, the right leg remains stubbornly limp and I continue to walk the sloppy way of a duck that has one paralyzed foot (wait, that's me). The outlook is meagre but apparently not hopeless which is why we are waiting for a letter from the powers that are, aka health authorities, in reply to my request for a specific rehabilitation program. In my dreams, I am already there but in reality, there are all sorts of obstacles. It's complicated. I am impatient. I want this to be over. I want things the way they were three months ago. I know, silly.
23 February 2017
21 February 2017
Maeve was the oldest sister of my beautiful mother-in-law. A strong, gutsy woman. I have written about her here.
Now there is only Nuala left from that generation, the second oldest sister and she is not well, both in mind and body. But she is looking forward to the funeral mass. Nuala is a devout catholic, she believes in miracles. She speaks to her saints regularly on all our behalf. I have a stack of mass cards from her. Proof that she prayed for me. That my soul is safe.
When my mother in law was dying (much too soon, much too cruelly), we were instructed to not say a word and nobody did. And so she was never told that she had pancreatic cancer, that she had only months to live and that we all knew. Even her husband, the love of her life, the ever charming JC, he would not, could not tell her. Not to himself, either.
For short while, I was furious but what did I know, me, the heathen foreigner.
But of course she knew. She prepared her death carefully.
Often, when I close my eyes, I see her on that Sunday morning when I opened the door, her smiling face, would you wait a little while, love, while I finish talking to Sean (the family lawyer). And after Sean had shook my hand and left, I combed her hair and held her hand while we watched mass on the closed circuit tv.
On Sundays, I was always the first visitor and I would leave when the next family member arrived. The grandchildren came after lunch, alone or in twos, bearing paintings and flowers, being ever so good and adorable, everybody loved granny. My father in law had the evenings and on one of these, he brought a priest along and they quietly renewed their vows.
During the week, I'd sneak in a short visit on my way home from work to exchange gossip and take instructions about the dogs or the garden or what to take out or put in the freezer.
And then driving home in the rain, waiting at the traffic lights by Blackrock shopping center, crying while the rain washed over the windscreen and Walking in Memphis on the car radio.
And then that day when I could not reach her any longer, when all I could do was moisten her lips with that lemon scented sponge. For a brief moment, she opened her eyes and said, thank you Maeve. That's when I stepped back. For the next few days, I minded kids, prepared endless pots of tea, cooked dinners nobody really ate, answered the phone, looked after her dogs and did whatever was necessary so that her daughters, her son, her husband, her sisters and brothers could be with her while she was dying.
Later that week, when we visited her laid out in a bed of flowers, surrounded by the letters and paintings from her grandchildren, R showed me her wrists. She had asked for them to be slashed after her death. Why? I asked. To be sure, he said, she was afraid. Just like we are. Afraid of not dying and afraid of death.
For a moment, I felt a sharp pain washing through me.
But we were young then and our lives were stretching out in front of us, endlessly. What did we know of fear, of death.
18 February 2017
16 February 2017
Another mysterious wedding picture from my father's stack of photographs. I can identify three people, my grandmother in the back next to the bride, the little boy in front is her first born and I think she is pregnant with her second child. Her mother, my great grandmother is seated holding on to her handbag in the front on the left.
The date is 1923. I made a copy of this picture and sent it to my father and we had a longish conversation over the phone. He does not recognise anybody else. We agreed that it must have been a once-removed wedding, a distant cousin from my grandmother's side, maybe not even a relative. The groom seems to be a fair bit older than the bride and I think the elderly mustachioed gentleman in the front row could be his brother.
My father thinks it was most likely a day trip, hence the large handbag and the absence of my grandfather. This was before the time of family cars. Living and working in a small provincial town required maybe a truck, tractors, definitely a couple of horse drawn carriages for the business, but families had no need to drive around in cars back then. It is definitely a rural setting. The towns had much better road surfaces. My father thinks his mother and grandmother probably hired a car with a driver for the day.
In the past weeks I have emailed this picture to every country hotel and restaurant within a 150 km radius from my grandparent's address at the time. I found only three country house hotels, as they are now called, with the same (or a similar) name as this 'The golden cross inn', but no, it's none of them. The managers of all the other country inns and hotels of a similar age that I contacted must think I am slightly mad. One in a rather godforsaken spot replied with a lunch voucher for two.
I also contacted a couple of historical societies and received a few polite replies from what I assume are retired teachers who basically confirmed what my father said over the phone: forget it.
The name of the proprietor is incomplete and I haven't even started to look into this.
Rural Franconia was not dramatically affected by the war, so it is unlikely that the building was bombed or burned down. My brother suggests I write to the local papers. Maybe.
This picture is utterly Franconian. I can hear the accent and the noises from the kitchen. I imagine that they will all sit down to eat Fränkische Hochzeitssuppe (beef consomme with lots of different vegetables and semolina dumplings), Tafelspitz mit Meerettich (beef with horseradish and apples), Eiernudeln (home made egg pasta, fat ribbons), Apfelküchle (apple pie), Franconian wine, the locally brewed beer, coffee for the women. I wish I could sit down with them.