17 October 2014

Two nights ago I was waiting for sleep to come in a fabulously grand hotel room in Trieste's Borgo Teresiano, diagonally across from the building where a century ago, James Joyce lived with his beloved Nora and their newborn son for a while, penniless and by all accounts in dismal squalor. As I listened to the noises slowly dying down I could not stop thinking of Am's comment to my last post  - thank you!

Earlier that day sitting - as one simply must - in one of the gorgeous cafes overlooking the grand squares and seaside panoramas, I had read an interview (link in German) with Susie Orbach where she described how mothers will always - consciously or subconsciously - negatively influence their daughter's body image. 

I tried to remember a time during my childhood and teenage years when my mother expressed anything close to approval of the way her two daughters looked or dressed. Maybe there was such a time when we were really small, but mostly it was a hard and nasty competition between the three of us, which my sister and I continue to this day. The first thing we do when we meet is check, ever so slightly, who has put on/lost weight, what are we wearing and so on. Before we even greet each other, we exchange one quick look of absolute disapproval, just for a split second. 
My mother disapproved of diets, as a food and agricultural scientist she at least had the theoretical knowledge. Yet, her secret diet of cigarettes and valium - at times she was painfully thin - was a hard act to follow and she would sharply remark on any weight gain. She was the queen of thin and dear me, how she had to suffer all of the world's sloppy, spineless characters with belly fat.
 
I like to think I did it a lot better with my own daughter. Would she tell me if I messed up? I wonder. But I think she loves her body a lot more than I do or did, even when I was raising her.

Illness changes a lot. That is the lesson I have had to learn. Suddenly, my body has become precious, and above all, oh please, don't stop functioning, never mind what shape and form, just keep going.
Yes, there are days when I am disgusted with the way my body has let me down, the tiresome and constant readjustments to the drugs and their long litany of side effects. But mostly I try to enjoy the surprise bursts of energy and vitality when they do occur and for the boring rest of it, easy does it.

07 October 2014

This one goes down like sweet milk with honey because in last night's dreams I was looking inside my body and found a mangled mess of burst and rotting fruit, complete with maggots and rats.
Listen to me, your body is not a temple. Temples can be destroyed and desecrated. Your body is a forest -  thick canopies of maple trees and sweet scented wildflowers sprouting in the underwood. You will grow back, over and over, no matter how badly you are devastated.
 - Beau Taplin

found it here.

05 October 2014

Yesterday at midday I stood in front of the house where my mother was born. Through a large gate at the side I recognised the gabled roofs of the stables and barns of her grandfather's haulage firm. I tried to see my mother there, the way she balanced on a stone as a two year old. 


Today it's all overgrown weeds, a couple of cars here and there, and in the main building, an empty shop front with for rent signs. I have vague memories of visiting the town as a child but never this building. It was sold long before I was born.
My mother was happy here. I know that. In the stories she told us about her grandfather, he was a dashing hero lifting her up onto his horse and setting off in a wild gallop through the estate. 

I know there are other stories, too. Of too much drink and rowdy scenes and of course, the war. Always the war.

On the motorway, I was trying to explain all this to R who was having fun driving without speed limits. I think it came across all sentimental and hollywoodish anyway. Just then we drove under a bridge where someone had written in big white letters: Somebody loves you
(- how do they do this, hanging down from the railings in the darkest nights with a spray can writing upside down?). 

Before we left I was up in the attic looking through the toxic box my sister passed on to me after my mother's death. I throw out some of it whenever I sift through. Last time, I threw away all the legal stuff, the threats and insults my parents exchanged over years via their lawyers, court orders to pay more, to hand back this or that, all water under the bridge. One day, the box will be just an innocent collection of faded photographs of people no one will remember.

And as it usually happens, I dipped into a couple of other boxes to find my balance again and I found a letter from my mother-in-law, which she had sent to me when my six months old baby girl had meningitis. It is one of the world's most beautiful letters and looking at the smudged ink where my tears had dropped onto the paper thirty odd years ago I had to cry again. 

My own mother had not yet met her granddaughter and when a few weeks later, we arrived after that long hot drive across France and I held S out to her, she recoiled and quickly stepped backwards. 
I will never understand it all.




02 October 2014

...illness changes how one is in the world. Moreover, the world of the ill person changes; it transforms into a different landscape, filled with obstacles. Distances increase. It becomes uncanny. The world of the sick belongs to a different universe from that of the healthy, and the interaction between them is clunky, difficult, abrasive. ... The geography of my world is no longer a shared one. It belongs to me alone, and separates me from the people I walk with. The healthy ones who don't even notice they are healthy.

Havi Carel

26 September 2014

22 September 2014

And so they marched. I have no hope. This is distraction of the masses. All the drumming and singing and chanting and dancing, what a jolly good day for all. We are fooling ourselves, as if. 
I did get the point of the silent march in Berlin (climate change is silent etc.) but my marching days are over. In my helplessness I vowed again to do whatever it takes to cut my personal CO2 footprint, not taking the car unless absolutely necessary, no air travel unless it's a family emergency and never without offsetting the carbon, no palm oil produce - very difficult, no biofuels and so on. Some days, exhausted and scared, I just sit in the garden and look up at the solar panels on our roof and feel like a fool.
Yet, watching (on our national news channel) Mark Ruffalo marching next to Vandana Shiva cheered me up a bit. I hope they had a good time together.





20 September 2014

Thunder and sudden rain. Summer is going out with a bang. I am restless and tired, or rather: I am tired but I have things to do and should get a move on. 

I am supposedly subtitling a video in two languages. By now, I have watched it about a thousand times. It is an excellent short documentary about the right to food and women peasant farmers - who have been feeding the majority of the planet's population for ever. Yes, the majority of the planet's population. Not a bad job.
Over and over I watch the clips of these women, African, Asian, Latin American, digging, watering, harvesting, smiling, talking. About cooperation, family, childcare, seed sharing, organisation and mutual support. This is where I usually stop the tape and take a deep breath. For a brief moment I feel a strong sense of family, of being connected. I want to cheer and shout, women peasant farmers are feeding the world!
But of course there is more to come, the usual terminology: land access, tenure rights, gender discrimination, corruption, caste systems, land grabbing, biofuel corporations, palm oil plantations, struggle, evictions, globalisation and so on.
Enough to make any woman weep.

Yesterday, a friend involved in immunology research sent me some new findings about fatigue as a symptom of autoimmune disease and how to properly diagnose it and thus treat it more effectively. Actually, the bit about treatment is rather short, a mere suggestion to be active when you can. Suggested activities include walking and cycling. Start at an easy pace and gently build up some stamina, it says. Yet nothing about the reverse scenario for former ardent cyclists for whom even thinking about a bicycle feels like too much of a physical effort. It all ends with an appeal to not ignore fatigue. Nice one.

I have no idea how these two issues connect apart from the fact that I want to rest my head on my desk and close my eyes. Which is why I am now getting up to make more coffee.









19 September 2014

and then occasionally this happens




You meet an old friend, someone you used to spend time with, not a lot, but pleasant, always. For years it has only been the odd Xmas card or email but now it's face to face, nice. Why did we lose touch again? We laugh in disbelief. We talk but of course, the music is too loud, too many people and you only stay for a short while. 

The next day, you get a long and delightful email including an invitation to a garden party. 
Lovely. 

Only, you cannot go because right now you are exhausted and you know from experience that you cannot push your luck, that you need a couple of days rest. 

So you reply with your usual jolly mix of banter and regret and sort of by the way you mention that since the last time you met all those years ago, you have acquired this chronic illness. (In a footnote, you provide a link to a site explaining in basic terms what autoimmune vasculitis is.) And before you send it off, you invite him to come round to your place instead, one day soon, to sit in the garden, maybe, with a glass of wine, before the winter?

Within the hour he replies. He lists his pressing commitments in the weeks and months and years to come. Sorry.

I delete his reply. 

This has happened before. More than once. I am no longer mad and I, no, I don't think these were the wrong kind of friends either. I know it can be awkward, not everybody has a patient heart of gold. And don't come and make me feel I need charity or, worse, pity. 




18 September 2014

And above all watch with glittering eyes the whole world around you, for the greatest secrets are always hidden in the most unlikely places. Those who don't believe in magic will never find it.

Roald Dahl

14 September 2014

delving into neurobiology, cont.

Usually people freak out about the early childhood bit, my friend the biologist tells me. That and the stuff about the pre-natal experiences. Quite understandable don't you think? After all, we are grown ups who make important decisions every day and now you are telling me about unconscious memories.
What we don't understand - and therefore ignore - is the bit about the genes and that we inherit them. Well, we automatically think, we inherit characteristics from our parents and on a bad day, we obviously think about all their bad ones.
No, this is what you must do: Imagine your parents' genes as two long necklaces of pearls, many many tiny pearls, each one a different colour and a different shape. And you get to have all of these pearls but on a new string, in a unique and completely new pattern. 
This is the really mysterious bit, don't you think?

I nod and get up to make some more coffee. We sit in the sun and talk about our children and pets and the summer almost gone and I forget to ask about how this is actually researched. I have read about three dimensional MRI and computer models and of course, I don't understand a thing. 

I remember watching my sleeping baby daughter, turning her this way and that, half closing my eyes, trying to imagine what she may look like in five or ten or twenty years. And of course, she is a complete and authentic and unique person despite the odd resemblances here and there, her grandfather's love of gardening and her granny's curls and her/my stubborn habit of wanting to have the last word and R's patience and cool and so on.

And yet, as I was stacking the dishwasher after dinner tonight I saw that look in R's eyes, the one that tells me that the moment I turn my back, he will rearrange the lot. He's got that from his father.

12 September 2014

delving into neurobiology

Three things determine the way we feel, think and act.

First, our genes and their activity patterns (while we inherit our billions of genes from our parents, we rearrange them ourselves, imagine a large mosaic that gets messed up and reassembled) which in combination with prenatal influences form our character.

Second, all of the positive and negative experiences from our first three years of life. We have experienced them consciously but cannot remember them because our brains were not quite ready for it at the time.

These two, our genes and the early childhood memories we cannot consciously recall, make up the largest part of our personality and to change this at a later stage is really difficult if not impossible.

Third, pre-conscious experiences from our late childhood and teenage and adult years which often influence us imperceptibly but which we are able to recall if necessary, albeit with difficulty. Yet, despite the fact that they represent our conscious existence and can be altered easily, their influence on how we feel and act is limited.

In fact, we are mainly driven by stuff which mostly comes from our experience but is not part of our conscious memory and if so, only intuitively. 

So, while awareness and thinking help us to adapt our basic motives of action to existing circumstances and to find alternatives and possible consequences, they are not responsible for our decisions.

The long version:


09 September 2014

To keep a distance, that famous professional distance. At least I rarely meet the patients described in the manuscripts. Medical language is so dry and detached, there is no space for feelings.
This works most of the time. In research territory, patients are usually cases, subjects, probands, grouped into cohorts according to specific characteristics and so on. No need to even use the term human. I am not complaining. 
But now and again, a case becomes a voice inside my head, my mind creates a person, I can see the hands gripping the wash basin, the shivering body inside the hospital gown, I am almost convinced I can feel the fear and now I have to watch out because before I know it, it becomes my own, my very own fear of death.
Sometimes, I do the sensible thing or at least I think it's sensible, the save and exit routine, what a blessing. Other times, I let the tsunami wash over me, gasping for air, bruised and shaken. I would make a terrible nurse.

08 September 2014

If you are distressed by anything external, the pain is not due to the thing itself, but to your estimate of it; and this you have the power to revoke at any moment.

(found here)


I am way overestimating things today. Unsucessfully trying to locate that power switch to revoke etc.


(A long time ago, I had notions of playing the recorder like a real musician, not just like the foolish amateur I was. In my dreams I wanted to be gifted. For a while I collected Frans Brüggen records. He died last month. He was a master of his art.)

06 September 2014

My view of the world, really, is that if you screw your eyes up and look at the world, it is an absurd and extraordinarily silly place, with everyone taking themselves very seriously.

Michael Palin

05 September 2014

Bad news, I knew it. Had to happen.

It comes in threes:

First:
Cocoa pod disease threatens chocolate supplies.

Second:
Coffee under threat.

Third:
The retreat of ice in the Amundsen sea sector of West Antartica is unstoppable, with major consequences – it will mean that sea levels will rise one metre worldwide. Quite rightly, this has been termed a Holy Shit Moment for global warming.

And that is before I started thinking about the bees. But the conference pears are fabulous this year, the figs are ripening and we have never had so many grapes. And, keeping fingers crossed, no tooth extraction.

03 September 2014

aaah Kevin



 Kevin Barrington

just in case you haven't a clue: Man Utd = Manchester United, a popular English permier league soccer club


02 September 2014

snooze all afternoon

Just as I was feeling a bit of a cheat, after I had mailed off the sick cert and started to deliberate whether I will actually go back to work anyway, by Wednesday the latest, never mind the forecast for a sunny week which I could easily enjoy at home, just about then I felt it first and still, like the fool that I am, I cycled off to the library and the whole food shop and by the time I got home and sat down, I realised, shit, you are ill.
So there. I take my pick and say, it's a virus. I mean, why not?






30 August 2014

The summer is over, so we are told. But wait, I know that September can be wonderful with long sunny days full of colour and balmy winds. Still, R tells me that now is the time for ripening and rotting. In horticultural terms.
I am making a note to buy a black dress, you never know. Be prepared.
My new GP decides I need to rest for 10 days, at least. Do nothing, sleep and read, she says. I dream of crying babies, complaining teenagers, screeching brakes and wake to find the little blind and deaf cat beside my bed, wailing and stubbing her nose into the quilt, unable to climb up. Can cats feel lost? 
Often, I just watch myself fraying at the edges, the taste of blood in my mouth mixing with the bitter sting from the tablets in the morning. Touching the small round bruises along my abdomen from the injections, this one, three weeks ago, this one from last week, the new one from yesterday. Insignificant markers of being alive and well. Sort of.
My biggest fear has nothing to do with health. I know I will not heal. My biggest fear is loneliness.







22 August 2014

Angry? Sad? Frustrated? I don't really know. I have a rare disease, one of these things that happen to very few people. Apparently, the majority of sufferers of my disease are female and middle-aged, not as attractive as young children. Some of us will die early after diagnosis, most often of kidney failure, but basically, any organ can pack it in, any time. For most of us, drugs help us to keep up a semblance of our former active and healthy lives, but there is always the rumbling of the volcano in the distance. We don't look ill. We look lazy. 

As with all rare diseases, research is limited. And not necessarily because of funding. The pharmaceutical industry is already making a fortune from the drugs to suppress the immune system and from the drugs to treat the side effects of the immune suppressing ones. Why find a cure? 

Sarcastic, I know. 

But to be realistic - and I have read my stuff, plus I do know a thing or two about medicine - the idea of a cure is so far fetched, nobody in their right mind would set out to look for it just like that. It's complicated and maybe one day in the distant future, someone will find a link, the secret code to open the door to the immune system.

Of course I want this to happen. In my perfect world, I want scientists to research day and night on cures and treatments, regardless of whether the disease is rare or affecting millions around the world. 

But I also want improvement for today's sufferers because whatever researchers may come up with, it's too late for them. I want a share from every ice-bucket-generated money to finance better wheelchairs, better accessibility, computers, touchpads, phones, speech support, cars, the whole technical show of wonders, whatever. And while we are at it, annual holidays for ALS patients, families and carers, and never again any hassle with insurance costs or permits. 
But most of all, I want this to be self evident.

Only when the last ice bucket has been emptied over the head of another shrieking celebrity will we realise that ALS and hundreds of other rare diseases are still fatal. Or maybe not even then.




17 August 2014

Results of a weekend of tooth ache and the potential threat of yet another extraction include a decent batch of mirabelle plum and peche de vigne jam, two episodes of The Great British Bake Off - watched in one go - and lots of knitting, while the blind and deaf cat followed me around, sniffing me out and stubbing her nose into my legs.

And that's not all of it, but at times I am above the fog. I swear.


14 August 2014

What do you do when you are unhappy in pain?
Sit quietly for a few minutes and become mindful of your breath as it goes in and out. Then contemplate what you do when you’re unhappy or dissatisfied and want to feel better. Even make a list if you want to. Then ask yourself: Does it work? Has it ever worked? Does it soothe the pain? Does it escalate the pain? If you’re really honest, you’ll come up with some pretty interesting observations.

Pema Chödrön

On a scale from one to ten, this pain is so obviously nothing. I have experienced much much worse. But on a grander scale, it is massive. It spreads from my lower jaw around my neck and deep into my heart. This, of course, is not really pain, it is my fear of it.
There was a time in my life, quite a long time in fact, when it would have been incomprehensible to let something so small stop me from being alive. I used to believe that everything was always just down to options, taking steps, brushing back your hair, getting a move on, etc.
To feel so utterly at the mercy of all those unreasonable terrors that found their way into my clear and pragmatic mind.
There is short moment in episode two of The Honourable Woman where we see one of the characters waking up and before opening his eyes, he whispers the Prayer upon Arising. Strange how this moment has stayed with me. Ever since, a little voice inside my head has been saying, if only I could whisper something mysterious and sacred when I wake up, surely my days will be... what? Better? Meaningful? Serene? Whereas my pragmatic mind just sighs, here she goes again.
In my sunny kitchen, I wash and chop big fat yellow pears. I have watched these pears from their early blossoms to full juicy ripeness, they are my spring and my summer. I fill the juice extractor and force my mind to stay still, watching, collecting, measuring, extra slow whenever my thoughts begin to race. One week, the dentist said. Let's try this gel and if it doesn't work, we take it out. He also said, x-rays can be misleading. Or maybe he said this another time or I read it somewhere. 
I pour the juice into the big pot and add the sugar, some lemon juice, star anise and cinnamon. I stir slowly, my  mind going in circles. I will need some time off work if the tooth has to come out, I need to ask my immunologist about painkillers and antibiotics, lab work, liver values. 
The house smells of pears, I fill the jelly into the jars, screw on the tops and turn them upside down. Beautiful jars of golden jelly, there in the sunlight on the window sill. 
Later at work, a friend calls. After complicated surgery earlier in spring, she is now thinking of coming back to work. We talk about pain and painkillers. I know she has gone through hell but still, I blurt out about my tooth ache in my most miserable whiny voice. Whatever happens, she tells me, don't allow it to seize you, to take over, to run your life. She cannot see that I am almost crying now.
On my way home, it has started to rain. I am late and the only person cycling through the dripping forest. The gorgeous dripping forest. I check behind me and down along the path in front, just in case, before I start to shout and cry and howl and laugh. By the time I am out of the forest, my face is wet. Rain, tears, whatever, it's all water. 
I push the bicycle down the small lane behind our garden, shaking off the hood, brushing back my hair with one hand.
I know, I feel, I must own this, must stop running from it. I am not quite sure how to go about it. Not yet.



13 August 2014

"Robin Williams could have tapped anyone in the western world on the shoulder and told them he felt down and they would have told him not to worry, that he was great, that they loved him. He must have known that. He must have known his wife and kids loved him, that his mates all thought he was great, that millions of strangers the world over held him in their hearts, a hilarious stranger that we could rely on to anarchically interrupt, the all-encompassing sadness of the world. Today Robin Williams is part of the sad narrative that we used to turn to him to disrupt.
What platitudes then can we fling along with the listless, insufficient wreaths at the stillness that was once so animated and wired, the silence where the laughter was? That fame and accolades are no defence against mental illness and addiction? That we live in a world that has become so negligent of human values that our brightest lights are extinguishing themselves? That we must be more vigilant, more aware, more grateful, more mindful? That we can’t tarnish this tiny slice of awareness that we share on this sphere amidst the infinite blackness with conflict and hate?"

Russel Brand in yesterday's Guardian. 

10 August 2014

I have a tooth ache and I am fighting panic. It's probably nothing but I am so very scared. I am 56 years old, I have done quite a lot of amazing things on three continents for the last 35 years and I act like a frightened child. Oh how I wish someone would come and tell me that all will be well, very soon. But when you are 56 years old, you are supposed to cope in these situations or at least not act like a child. You can listen to the regular breathing of the man asleep next to you. You can watch the cat watching you, only she is blind and just stares into space for a while. The moon so stunning earlier tonight is hidden behind a hazy fog.

I will feel like a right fool in the morning, I know. 

Earlier this week I hurt my back doing a simple exercise to strengthen my back muscles. Something I have been doing for years, the exercise I mean. My first back ache in 19 years but we recognised each other like old friends. It is actually hilarious, my GP laughed when I explained how it happened and sent me on to physiotherapy. 
That time, 19 years ago after the car crash when I had spine surgery. Nothing compared to having a tooth ache.

07 August 2014

trust

Watching R with our deaf and blind old cat this morning brings back memories of our early parenting years when I went back to work and he stayed home. Maybe replace memories with revelations.
Quite often, I would find pebbles in her nappies (diapers), her wellies with a puddle of water inside, dead woodlice in the pockets of her dungarees. But there was also my red cheeked smiling toddler with unkempt hair holding out her arms and unwashed hands to me. Wisely, R never really told me what went on in the garden, which at the time was a very big walled-in space with large overgrown patches full of brambles and broken bottles and ancient waste. Come to think of it, there was a time when S would bring me old batteries. In any case, the house mansion with all its faded grandeur and sweeping staircase and all the gaping wounds that 100 years of neglect bring about was a minefield for anybody. Whatever possessed us?!
And: There was a large water tank way back in the garden. I know it was roughly shoulder high, toddler shoulder high. As I was rescuing the old cat this morning from inside the small bit of bramble hedge we have here, while R was digging up the spuds across the lawn, I saw my toddler throwing stones into the water tank, 30 years ago, pulling herself up to the rim to watch it splash and my knees gave in.
You are overreacting, R tells me. That cat has a great sense of smell, she would have found her way out in time.

05 August 2014

Stuff happens, life goes on. In the mornings I read about Gaza and at work I hold the hands of a furiously crying Palestinian postdoc, her mascara running down her face in black lines. She feels helpless, she tells me. And I want to reply, helpless? Try me. But instead, we sit for a while longer before she tries to make some more calls.

I also read that amazon is starting to send out stuff to people they might want to buy but haven't yet ordered, all based on their preferences and reviews and wish lists and whatnot's. In my case, this could mean a deluge of second-hand books and contact lens cleanser.

Can I write one paragraph about a terrible war and in the next, make fun of one of the myriad trappings of our consumer society?

I don't know. In fact, I mostly feel that I haven't a clue. About most things. How come we do all this? How on earth do we let hurtful things happen? Last week I commented on an article about epigenetics with my usual spiel that guilt is not hereditary but that guilt feelings are and about neuroscience and the unconscious transmission of war trauma and guilt from one generation to the next. But I wonder, it seems so slick. Obviously, I have done a fairly good job shaking off my mother's trauma or else I would drown myself in drink and valium by now the way she did.

And yet, I know, being German and with that grandfather, I better keep my mouth shut when certain issues are discussed because these days, sooner or later, someone will mention the war. I grew up at a time when nobody ever did that, mention the war, well, not in Germany. So imagine my clueless surprise at age 14 when I arrived in a sleepy town on the east coast of England (where I spent three months hating the school uniform and watching telly) and was greeted with the outstretched hand salute and that little gesture with the two fingers under the nose to indicate the moustache. Great fun for some.

The baddies and the goodies, how easy it could be. But remember: this will never work.

Instead, yesterday in London:

source: http://www.ibtimes.co.uk/

But most importantly, this: 



31 July 2014

Some days, I think what I do is a bit like probing with your tongue for the rotten tooth you know you will find. But still...

It's a plastic world - English from It's a plastic world on Vimeo.

29 July 2014

Yesterday during breakfast my 85 year old father explained his method of getting on his new bicycle without too much pain in his knees. I haven't seen him do it but it sounds practical and possible but then again, he has always been a convincing public speaker.
It takes him several minutes to get in or out of my car and only if I help lift his feet in their enormously large shoes (hand tooled from best leather no less). Once on solid ground he totters along with his walking sticks which he will use frequently to point out some architecturally or otherwise culturally or historically important landmark whereupon he will deliver one of his lectures.  This he usually ends with a slight grin asking me to check on my laptop if they got it right as well. He believes that there is some shady pretend authority that feeds my laptop from some obscure place with information.
Sometimes I think he's got a point there.
He tells me that he recently bought a book that explains computer basics to ordinary people - to catch up on the vocabulary for the crosswords - but it was so poorly written that he dismissed it after the first couple of pages.
In moments like these I feel a great tenderness for him but obviously, it would be out of the question to show even the slightest hint. Tenderness is not part of his repertoire. At least not with his children and certainly not when they try to explain something to him. After all, he paid for our education and can recite the Iliad in ancient Greek. That way we all know where our places are in the order of things.

25 July 2014

How many times did we watch our daughter walk through those gates, often holding the hand of a smiling female airline rep, waving back excitedly, ready to meet granddad at the other end. Other times, trying to catch a last look of her somewhere in a group of friends and sometimes, just her back slowly walking away, not turning because she is crying. 
I don't sleep when she is in the air, never have. And I know we will watch her walking through those gates again and again.
So much of our happiness and sanity as a family, as parents, depends on travelling, flying across vast continents, crossing time zones, feeling safe inside a pod made of aluminium and fairy dust.
I don't dare imagine the grief and the anger. I know it could be ours.


22 July 2014

After the road workers cut through the cable that seemingly connects us to the rest of the world, i.e. internet, landline telephone, radio and tv, after it got very very hot, humid and rainy, we went into paradise mode but without the pestering insects of the rainy tropics. 
For the entire time we lived there without radio, tv, newspapers and all the other stuff we now pretend are our social connections I don't remember ever being bored or at a loss the way it felt for a brief moment when we stood by the kerb with the two bits of cut cable sticking out. In fact, I admit to a tiny wave of triumph washing over me.  Ok, I had just read The Circle by Dave Eggers, but still. 

As it turned out, I read four books back to back in the last two days. As in: finish one, put it down, pick up the next, read the first page, make more tea, read on, etc.

If I had one thing that worried me while we were living in paradise it was that I may run out of books to read and on my visits to the two small but quite well stocked public libraries I sometimes tried to calculate how much reading time I had left and when I would have to start learning French or resort to those fat James Michener novels someone must have donated years ago.
(I didn't. Run out of books. improve my poor French or read the Michener tombs.) 

Whereas R doesn't read. I sounds awful and even after so many years (35 in fact) I have not given up hope. He conned me during our first couple of months when he told me that The Magus  was one of his favourite novels. I am still waiting to find out about the others. 
But we are different, he enjoys teaching maths for goodness sake, he gardens like the god of all horticultural scientists and his poetry is the periodic table of the elements. There was a brief time in our early romantic period when we attempted reading to each other - in bed, no less. It lasted exactly one half of a chapter of Lord of the Rings before we both fell asleep. And this was during our active romantic period!

But last Sunday, as I was starting on the second chapter of TransAtlantic I started to read bits out loud because not so long ago, we both stood up there by the monument in Ballinaboy overlooking the bog where Alcock and Brown  landed in 1919. And like the young boy he must have been once, mad about flying and still dreaming of becoming a pilot, he was lying there next to me, his eyes closed, listening and when we came to the bit where the plane took off, he whispered, chocks away, chocks away. And we both watched them flying off and out across the Atlantic.

Anyway, the cable has been fixed and we are back to the world of lit up screens. And apart from reading as if my life depended on it, I also got down on my knees and cleaned the stained stone tiles in the downstairs hall. Only I used some godawful stuff that apparently contained a minute amount of acid and now it looks worse and dull and blotchy. Any ideas?

15 July 2014

Truth isn’t always beauty, but the hunger for it is.

Nadine Gordimer
obituary

I read her books with a fierce hunger for more.

13 July 2014

Motherhood brings you to your knees in a way that doesn’t leave room for you to judge others. It makes you see that there’s no ideal – a constant struggle, constantly compromising, but ultimate love.

Maggie Gyllenhaal in today's Observer.

08 July 2014

a Luka morning



rain, lots of rain, lush doesn't cover it when I look out over the garden

07 July 2014

four stunning hours



not just beautifully crafted but also a timely reminder of poverty, oppression and emigration
not too long ago

06 July 2014

It is hot and humid and the next minute, the wind picks up and dark clouds appear and we run to get the laundry inside. A strange day. I am out of sorts, it's like an itch that's driving me mad.
Most of the weekend I worked on one of those manuscripts that makes no sense to me, something about DNA research, way beyond my limited mental faculties. I can still proofread the stuff, but even after the fifth read through, I remain baffled and just hope that the authors have a life of fun and enjoyment outside the laboratory. Or that they indeed are reaching the hypothesised break through in cancer diagnosis. Or both. I used to worry about our postdocs, pale and overworked and all the empty pizza boxes and soft drink bottles accumulating in the hall corners.
On Friday, a young woman crashed into my car or rather into the car behind me which then crashed into my car. Nobody was hurt and I managed to skilfully hit the breaks and neatly avoided crashing into the car in front of me.
Anyway, I have been dreaming of not hitting those breaks and driving down cliffs and various harbour walls etc. in paradise (where the roads were treacherous to put it mildly) for the past two nights. To be expected, no?

In between these dreams, memories of Jenita surfaced from long ago.

This is the woman I let down. What makes it worse is that she probably didn't even notice. This is one of those stories about women and poverty and inequality. And not just gender inequality but racial and economic inequality and the rotten taste of failure and inadequacy.
In the first days after we moved into our little house in paradise and everybody around us was done with watching us from a safe distance people started to ask for work. Not directly, nobody was that blunt and it took us a while to get the hints. After a decade of happy-go-lucky communal living, food co-ops, shared gardens and whatever, we were now expected to employ servants. Which was out of the question, not just because there was no garden to look after, nothing to guard, no elaborate dinners to cook, nothing much to clean or wash and so on, but also because we were anything but the rich expats who lived in their guarded compounds across the mountains. Some of our local neighbours lived in similar little houses with occasional electricity and running water, some even had tv sets, a telephone, chickens, pigs, certainly dogs and cats. But we were different, we were the white Europeans, we had books and a typewriter.

In the end, we compromised and hired Jenita.


At some stage we did agree on a whole string of jobs she enthusiastically suggested, picking  up S from school, ironing, washing the dishes, cleaning the floor including coconut husk polishing, shopping for fresh fish and the best mangoes and so on.

In reality, it was all quite different and complicated. But we had long chats sitting on the steps of the house watching the kids play. Her three kids from three different fathers, all long since disappeared, the German tourist, the North Korean sailor, the Italian photographer. We talked about the lack of food, real food like the meals served in the five star tourist hotels on the beaches, about mothers who leave their children and grandmothers who take you in and make you work for your keep, about birth control, about men who are lazy and drink too much and about living with them just to have a roof over your head and fish to eat. Jenita explained to me how the size of fish is related to how high up on the hill a woman lives because naturally, the man has so many women to visit when he brings his catch home.
One minute, Jenita would talk to me about her life of poverty, abuse and exploitation and in the next minute, she would fall over laughing about a silly joke or try and braid my hair, jump up to teach me a dance, blow bubbles with the washing-up liquid, play tag with the kids, leaving me confused and lost with my overblown ideals.
I did try to find her more work, real work but she carefully and deliberately avoided all my attempts and by the time I realised that the ironing was in fact done by one of her ancient aunts because Jenita did not know how to iron and certainly would never touch our electric iron, we were in our second year. By that time, this had gone wrong in so many ways, it didn't matter any more. On our last day, we pushed one of the three tea chests we had arrived with down the hill to her granny's hut where Jenita was living at the time, stuffed to the brim with our bits of cutlery, china, plastic pots, sheets and towels, toys, a lamp shade, the children's books, the quilts I had made for our beds, the machete and the fan. She was in tears and would not stop hugging us. The best day of her life, her granny assured me. 

29 June 2014

It has been raining for the last 24 hours, nice and steady, long overdue. I sent R on his way to inspect and discuss various new solar energy gadgets at one of these gatherings where people teach each other how to save the planet or cut their electricity bills, whatever. I am usually too impatient to do this and am prone to sarcastic comments. 

You know the joke about two planets meeting in space? 
The first one: "How are you?"
"Not so well", the second answered "I've got the Homo Sapiens."
"Don't worry," the other replied, "I had the same. That won't last long."
Well, that's me these days and I better not dwell on it.

Instead I should be working my way through a riveting piece of publication on the latest groundbreaking research in laboratory methods to detect early prediabetes. 

But as usual, there is so much to organise on my desk and in the kitchen and so I dawdle and mess about like the next best teenager.
And there is my child's tired face to think about, the way she smiled at us this morning from the other side of the planet. She works hard long dedicated hours, she is skilled and smart and she has the bigger picture right in front of her, she is changing the world. I just hope her health is up to it.

Here she is aged nine months after R taught her how to read maps.



23 June 2014

The little old cat, blind and deaf as she is, had a touch of diarrhoea, to put it mildly. She succumbed to it in the dining room and most of downstairs in her gentle quiet way before she wandered upstairs - leaving a neat trail of footprints - while we were enjoying a most pleasant cup of tea outside before watering the garden. 
Things went on from there and soon I was on my knees washing the hall and the kitchen floors and basically every surface and by the time I got to the stairs I suddenly remembered the time when I sanded down the banisters and the steps and the smell of wood, which was quite some years ago now. 
Upstairs I could hear R talking on the phone to Nuala, who is also quite deaf now when she wants to: So, I hear you went walking down the East Pier? What was that? Someone stopped you? Oh, your walker got stuck on the bus? A Spanish student, you say? Ah, people are so nice. He kissed you? Well, aren't you the lucky girl. Sure, of course we'll have a grand party for your 100th. 
And so on.
Life.

22 June 2014

We think that the point is to pass the test or overcome the problem, but the truth is that things don't really get solved. They come together and they fall apart. Then they come together again and fall apart again. It's just like that.

Pema Chodron

20 June 2014

World Refugee Day



This picture was taken by Stanislav Krupar who earlier this month joined a group of refugees from Syria on their harrowing journey by boat across the Mediterranean to Europe. Here, we see the group stranded on a small island off the Egyptian coast waiting for the trafficker to return. They were left without food or water.



 



Someone asked me recently, what if these boats carried dogs, poor lost puppy dogs, would we then take them in, would we not carry them out of the water in our arms, wrap them in  blankets and hold them until they felt safe again? Picture by Mashid Mohadjerin.

19 June 2014

After easter, ascension and whit Sunday, this is the last of the spring/summer holy holidays, corpus christi. Here in this country with an agnostic majority, we take all this stuff very seriously. After the procession today, the catholic youth group down by the river is having a barbecue, which I think is quite the suitable thing to do. A touch of the Varanasi Ghats.
Of course, I won't dare to clean windows or cut the lawn and all the shops are closed . Instead, the nation indulges in watching  football soccer, food and drink, procrastination and all the other stuff that comes with it.

We decided to stop forcing the whatever pills down our little old cat's throat twice a day. And yes, we tried all the right moves, excluding the burrito thing which involves wrapping her tightly in a towel, R will not hear of it. Being blind and deaf and very sleepy, she has now started to hide in fear and my hands and arms are covered in bleeding scratches. This is not the way to do this. I am not sentimental or sad, she is an old lady who so far has enjoyed a fabulous life since she was found as a very very young abandoned kitten covered in ticks and maggots. We will not turn the last weeks/months into a miserable daily battle.











15 June 2014

Once again I sit opposite another medical expert answering questions and when he reads through my stack of copied lab reports and medical records, I look out through the window behind him, it is such a beautiful morning. Ninety minutes of tests later he turns the monitor my way to show me the colourful diagram of where and how my left inner ear is permanently damaged, a pie chart of my poorly responding balance organs, graphs of erratic zig zagging lines depicting my impaired response to stimuli and - thankfully - my near perfect hearing.
All this is nothing new and I smile while he explains that in his opinion (and I have been told that he should know) this latest scenario is all autoimmune related. Old hat, I want to tell him but instead listen politely to his lecture about micro vessels and autoantibody attacks.

And because the day is so beautiful I take a detour on the way home, crossing the river by  ferry. There is just enough time to step out of the car and take in the view of the lush forests on the hills and the castles in the sunlight. The Italian tourists from the car behind me ask for names and directions and I recommend a place for lunch downriver. Look at me, I am just another healthy woman enjoying the day. And, oh, what a day to be alive.

As I drive off the ferry and up to the traffic lights, the first niggling doubts start somewhere in the back of my head or maybe in the pit of my stomach. It is always hard to tell. What does he mean, in his opinion? Isn't this a bit vague? Was he evasive? I desperately want hard facts, something I can carry like a badge, feel like a hard stone in my pocket. Somewhere to stab my finger, place my palm. This here, this part of my body, this is where my white blood cells are being attacked. Let me circle it with permanent ink. See this spot here, this is where it is all going wrong. 

But it's complicated and of course I know that, I have been tangled up in these thoughts too often and by the time I get home my breathing has calmed down and once again, I look and act just like the next best healthy woman over 55.

And yet, there are times when I want nothing more urgently than to be told what went wrong, what I did wrong because surely once I know things will fall into place.
Remember that hot day when I stepped onto the sharp piece of glass on the lawn at the back of that dingy hotel? And R forever telling me to put on shoes? The slightly grimy towel when I washed off the blood? The pain slowly increasing over the next couple of days, along the foot moving up towards the knee? The shivers, the red hot circle, septicaemia, penicillin? I can come up with two of the current scientific theories of what triggers an autoimmune disease, the bacteria on the dirty towel and the penicillin - or both or none of it, take your pick. It's all opinions.
The evidence is insufficient, the statistics have not yielded significant results, I know my stuff when it comes to medical reporting. 

Which is why you better get a grip, you foolish woman.

In our lives, there is nothing, absolutely nothing we can take for granted. Ok, there is death. But apart from that, there are no entitlements, life is not fair, whatever that means. If I have figured out anything, there are good days and bad days and if you are like me, you go from one to the other, up and down, like a yo-yo.




heavenly music






14 June 2014

a very quiet summer weekend in June

 Our little old cat is now blind and deaf and outside, she is lost. So I watch her sleeping, sniffing in the wind, timidly wandering off and when I carry her back from wherever she got lost in the hedges, she spits and hisses.

 Last week's apricots are this week's cherries.





 an abundance of grapes this year

08 June 2014

The long hot Whitsun weekend, I got R interested in Happy Valley, in three nightly portions. I know I am a telly addict. My mother always knew,  in her opinion watching tv was common and lazy, and of course I was a weakling, wasting my precious talents. Often enough she would switch the thing off, sending me upstairs to get involved in some academic challenge like reading or homework or piano practice. 
Anyway, now we are hooked.


It helps - massively - to be told by three handsome dentists, after careful examination and the obligatory x-ray, that my ache pain is not related to a dental problem. Also, since it comes and goes I have reasons to be cheerful. That and another medical appointment next Friday to investigate possible connections between vertigo, sinuses and autoimmune disease. As long as I can keep what's left of my shiny white teeth, I don't mind. Honestly. For the time being.

Last night, listening to a program on the world service we were reminded of this week 25 years ago. 
Another gorgeous day in paradise and there I was, sitting in my air conditioned office on the ground floor in the government buildings.  We had a tv set and a video player, so there was always a gang of government drivers lolling on the sofa watching kung-fu videos during their many breaks. It could get quite crowded. 

That morning, my magical twins,  two beautiful shy young men I was supposedly instructing in the skills of capitalism, asked me very quietly if I had a minute.  The priest in their village across the mountains had received a phone call, they told me. Their youngest brother was in trouble and it was decided that I would be the person to ask for help. For all the obvious reasons, namely that I was white, European, filthy rich - in their eyes (we had a car!) - and probably also connected to the powerful rulers of the world. They had seen me talking to one of the government ministers only days ago, right?

The trouble was in China. The youngest brother, apparently most gifted, had recently received a scholarship to study art in Beijing. Together with other African students he was living in a hostel, isolated and segregated because black people in China - well, use your imagination. In the days after the Tianamen Massacre on June 4th, 1989, a mob had set the hostel on fire. Somehow the brother managed to escape, others were not so lucky. All we could figure out was that he was somewhere in China, maybe still in Beijing, alone, without food, without his papers, without money and certainly unable to speak the local language. 

Meanwhile the men and women in charge of this small impoverished African paradise refused to jeopardise their enormous financial ties with China and pretended to be unavailable.

My first thought: Oh fuck this, why me.
But of course it wasn't just me after I managed to get someone from one consulate and another someone from a high commission on the phone and a short while later we were waiting to meet another someone and so on. Very colonial in the end. Just as well, Hong Kong was still British. Six days later, my shy twins introduced me to their equally shy brother, we all cried a bit and that was that. On fb I can see his latest paintings and sculptures. He returned to China eventually, completed his studies there and later in the UK, and has been teaching art in paradise, he is a star. He really is.



03 June 2014

And so life goes on, like a river, meandering along with all those beautiful and ugly sights along the shores.  Slow, deep, on and on.

There are things that worry me. What else is new. Once again, I am spending too much of my time with doctors and one of these occasions left me angry and bruised, in my soul and the crook of my right arm thanks to a botched attempt of blood sampling. There are still doctors (usually young, male and sun tanned) out there who are convinced that autoimmune diseases (vasculitis?, never heard of that one) are all in the mind (usually of middle aged menopausal women). Mostly, I give them a quick laugh and walk away but I have run out of patience recently. Let's not dwell on that one - I was not my usual friendly self.

And I have a tooth ache. Hah! This is where I turn into the ultimate hypochondriac. Not without reason, let me add. While the dentist - due to the absence of obvious signs and a couple of complicated reasons only he knows - suggests a week of the wait-and-see approach I lie awake at night considering the possibility of losing yet another tooth, trying not to freak out.

Some time earlier this year, the wonderful Angella wrote in a comment to one of my oh-look-I-am-so-ill posts  I am at the stage of making peace with the pain. Reading this sentence felt like a cool refreshing wind on my hot face. I am not good with tooth aches and it is a struggle. A week, I ask R, how will I handle a week? To which he responds, Friday the latest, ok? Well, watch this space. I may hit the roof before that.

Ah, but the summer is here. Apricots, strawberries, cotton wood seeds floating in the breeze, pigeons cooing and long bright evenings outside. I really should be working but it's complicated because I have started on a big thing for a human rights NGO, free of charge - obviously - and heavy and important as hell. At the same time, a pile of medical manuscripts, all urgent and all worth a good bit of money, is waiting in my inbox. And of course I am dramatically torn between being good and greedy.

Which is why I am doing nothing at all - apart from reading. Bad, terribly bad stuff about the catholic nuns in Ireland and babies in mass graves. About girls raped and hanged from a mango tree, about a pregnant woman being stoned to death by her own family. And we all know there is more.

I think of my vagabond daughter and how at home she is in the world. And the countless nights I would lie awake, hoping she was safe, trying to reassure myself that always and everywhere on her travels there would be kind strangers, mothers, daughters, women looking out for her. The way we all - surely - look out for someone's daughter when we see her at a bus stop or waiting for a cab, watch over her asleep on a train, or looking for spare change in a busy pub. In the 1980s I went on reclaim the night marches. We were so full of it, really, the world was going to change, no less. And yet, every woman I know has been warned about walking back in the dark, as I have warned my daughter.

How did I get here?  Tooth ache panic.



28 May 2014

and now for something completely different

The inescapable failure of a society built upon growth and its destruction of the Earth's living systems are the overwhelming facts of our existence. As a result, they are mentioned almost nowhere. They are the 21st century's great taboo, the subjects guaranteed to alienate your friends and neighbours. We live as if trapped inside a Sunday supplement: obsessed with fame, fashion and the three dreary staples of middle-class conversation: recipes, renovations and resorts. Anything but the topic that demands our attention.
Statements of the bleeding obvious, the outcomes of basic arithmetic, are treated as exotic and unpardonable distractions, while the impossible proposition by which we live is regarded as so sane and normal and unremarkable that it isn't worthy of mention. That's how you measure the depth of this problem: by our inability even to discuss it.

George Monbiot yesterday in the Guardian.

early summer







25 May 2014