20 November 2014

and more cycling

The Cyclist Philosopher from fifty beans on Vimeo.

subtitles in English: click on the cc button

16 November 2014

It's hard to believe we are half way through November already. This morning, R picked a bowl of fresh raspberries and the roses are at it for the fourth (fifth?) time. You could almost start to love climate change.

At the local farmer's market today I got involved in a conversation about old apple varieties. Thanks to my grandmother's orchard and my father's insistence of teaching his kids that apples had proper names I could contribute my fair share. The tiny, almost wrinkled apples in the picture are a variety that was first cultivated in the 19th century by a German nobleman and social reformer. They are juicy, sweet and high in vit c and they have a dedicated fan club. Apparently, there are only a few trees left which explains why they are sold out in one morning. I guess the fan club has a secret messaging system because they were all there, oohing and aahing and discussing colour and size. Generously, I was allowed to purchase one kilo. 

One of these days I will eat one. At least I hope so. Before I forget that there is a culinary life beyond porridge, dry toast and fennel tea. Some days, I dare to drink the odd cup of milky coffee or stupidly eat a tiny portion of risotto rice with pumpkin - at a price (see below). I have now been told that most likely it's a mechanical issue plus chronic gastritis. While both of which are here to stay, more or less, I still have hopes that modern medicine will eventually soon find novel ways to successfully recover my digestive system at least for periods of time long enough to try out all the recipes I have been bookmarking in the last fortnight. 

Meanwhile, I got a couple of prescriptions, painkillers, heavy duty PPIs, and good old antispasmodics. Donkey's years ago I took that stuff for really bad period pain. Stupidly, I mentioned this to my new GP and she had to laugh and we started to talk about childbirth and labour and when she asked me why I only had one child, I told her about what happened in 1993 and she cried out and held both of my hand for a while which was slightly embarrassing.

Anyway, these drugs are not really working which is why I am now sitting here in the darkest night missing my cat and listening to this wonderful talk about psilocybin therapy. Believe me, I want it. Now.

12 November 2014

Imagine this scene: a group of children playing outside on a sunny day, the game is turning into a race and now all of them are running down the road, except for that one child who cannot keep the pace. The others are already too far to notice.
On bad days, really bad days, I am that child.

The overwhelming feeling of having no direction, that nobody needs me, that my purposeful life is over.
Oh, of course, my daughter and my husband. They will swear that I am important, sometimes under duress, and sometimes when they do mean it. And there are others, occasionally, who value and cherish my presence, my input, my work. Honestly, I am proud of my work and all that, on most days, but especially on really bad days.

I know that I will never be healthy again and that this illness is claiming more and more of me, slowly. I know it does not look like it but like the fool that I am, I am still fighting it. 
All. The.Time. It is a hard struggle and a useless one, really. I leaf through my diary to count the medical appointments and sick days during the last 12 months and I feel grim. No wonder, R tells me that he has lost track of all the experts and why and when I have to go and see them.

There are still glorious days, occasionally, when I feel energetic, my face flush and tingling after a fast cycle, when I clean the kitchen floor last thing before bed and still have enough energy to run upstairs. On days like this, for a brief moment, I forget that all this is changing, that I am far into the tunnel of chronic illness. I know I am really lashing out at life, my unfair life, when I get mad with R, when I shout at him for not doing this or that. And oh, how much I really just need him to stop me, to tell me that all will be well.

This he cannot, will not do. And the last thing I want to do is blackmail him with my illness.
It is very tempting, but this is not his responsibility. Neither he nor me caused this illness and it is entirely my own body, my own burden. Harsh as it may sound, but believe me, pity can feel awfully patronising. Or maybe I haven't got the gift of accepting it properly, gratefully, to make others feel better.

Sometimes there is a wall between us that I can almost touch, the air is cold and hard and we try to fill with empty chatter, polite conversation. Carefully avoiding anything related to being ill. I look up and see this strong and energetic man, he is so well, so fucking healthy. While he carelessly pours himself another glass of red wine, we debate the upcoming conferences he may attend, one in Finland, another one on Mars or so it seems. Go out for a hike, I want to shout at him. Just like we used to do on a Sunday morning because we felt like it. Go and travel, explore, discover. Send me back pictures, bring me a souvenir. But it's complicated, confusing, and maybe I am not convincing enough, maybe I show a trace of regret in my face or maybe he feels a tinge of guilt in his mind.

How much I want to be done with this anger, with loss, with feeling hurt by what exactly I cannot even tell, and wanting to hurt back at what exactly I have no idea.

cycling . . . again

10 November 2014

09 November 2014

Sometimes when I am in the bathroom brushing my teeth and the window is open and I can hear the faint noises of the traffic from the main road, I am back in the house I grew up in, standing in front of the bathroom mirror, brushing my teeth and while I hear the faint noise of traffic from the main road I am dreaming about being far away, somewhere exotic, different, very, very different and deliriously happy. 
All of it, at the same time. I would look at myself with half closed eyes, trying to imagine it: me being deliriously happy and far away, somewhere exotic and very, very different. 

Around that time I started stealing cigarettes and loose change from my mother's purse. Most days after school I sat on my desk in my room underneath the skylight, blowing the smoke outside and hiding the butts in an empty jam jar with a screw on lid. My mother was going through three packs a day and the house reeked of nicotine anyway, but, hey, the thrill of it. On the inner frame of the skylight I kept a tally of the boys I had kissed, a tiny line of initials.

The desk was very stylish, polished blond wood, Scandinavian design, slim brass drawer handles. It used to stand downstairs in the big room. Years ago I had chased my little brother around the room and he crashed into one of its rounded corners and the blood spurting from the gash beside his eyebrow spilt onto my mother's best Persian carpet. I was locked into my room for the rest of the day and I remember standing on my tiptoes trying to open the same skylight to climb out and give my mother a fright.
When my father bought our first tv set to watch the Olympic games the desk was moved upstairs.

Deep inside one of its drawers I hid my pathetic savings. But only briefly. I knew all along that money would not get my out of here.

But by now I have been all of it: far away, somewhere exotic and very, very different and deliriously happy. Even all of it at the same time, briefly.


05 November 2014

November. Not my time of the year, I could say.
It is ridiculous, really. Because I give into a mood, it's quite the thing to do. 
Oh oh November, I always get depressed in November, people tell me. Before I know it, I wake up and I think, November, am I depressed? And well, let's blame it all on this damp month with bare trees and wind and the dark evenings.

The little cat is dead, we went to the vet and he did the thing. It was dark and raining hard by the time we got home and while R dug the hole in the back of the garden, I washed the floors and got rid of the litter box and all the rest. 

Then the basement started to smell. We actually had a fight over who was going to check behind the stacked flower pots for maybe a dead mouse or worse and yes, it was pouring by then. Whatever it was, it just disappeared. I think.

Quite appropriately, R started to investigate his pension situation in what, three-four years and oh my goodness, we are going to be skint. Absolutely. And that is before tax. So now, we snarl at each other and I cannot sleep and really, I feel like a right fool. Because we always knew and we more than once managed with even less when we were young and wild (and healthy). We can always sell the house, R shrugs. But we both know how that will hurt. Or maybe not. Go to sleep, he tells me, no use thinking about it now.

A quite popular writer and poet here used to have this daily newspaper column, on the last page of one of the more radical national papers, where he would write a little ditty about current affairs, corrupt politicians or anything else that he wanted to get off his chest. So he wrote this little poem about November, how miserable and grey it is and what a waste of time and let's get rid of it and so on. 
Next day, the paper published a letter from a seven year old boy, complaining about giving November a bad name. And he listed all the great things November has to offer: leaves to mess about, raincoats and mittens and scarves to wear, puddles to jump into, hot cocoa to drink when you get home and so on. 
And of course, your man had to rewrite his poem and he did. And I have it all somewhere, the first poem, the letter and the second poem. I cut it all out and had a good laugh. Because, here's the thing: midwinter is only seven weeks away. Time flies. Before we know it we'll be old and poor.

31 October 2014

Just had two slightly bewildered kids at our door, calling out trick or treat (süsses oder saures, in German). Where did that come from? Too much internet is my guess.

This is probably one of the last countries on the planet where Halloween (and St. Patrick's Day) are not yet celebrated. But the pagans who once lived here did what good pagans all over the world do to channel their fear of dark nights. While the Celts in Ireland carved turnips into lanterns to scare off the dead souls and the Irish who had emigrated to America replaced the turnips with pumpkins, the local traditions and rituals here - which also go back to the dark ages - include bonfires and lanterns. But the mighty rule of the catholic church made it into a feast day for St. Martin whereby singing children carry cute lanterns and after marching through the neighbourhood after dark watch a man on a horse dressed as a saint from the Middle Ages jump over the dying embers.

Or something like that. This went totally past me when I was a kid. I think it was not invented by then or maybe my childhood Germany was not catholic enough. 

I do have hazy memories of searching the shops for the stupid lantern handle when S was making her obligatory specimen in school. That was a major hassle, that and getting the right kind of waxed paper. I was always too late.

Today, for a short moment R didn't even realise the novelty at our door step and over dinner, he remembered his own childhood Halloweens (plural?) in Dublin. 

But seriously, had Jesus not slain the giant pumpkin, none of us would be here today. Right?

29 October 2014

Sitting in the kitchen at 4 am, me and my old pal gastritis, we have been here before. Too often for my taste but who am I to complain. In the cup in front of me yet another herbal concoction with a fancy name.  I've tried them all. It's all the same, I could just as well drink a cup of tap water. Maybe next time. 
A hot water bottle in my lap, I try to concentrate on the novel I have been dragging around for the last week.  Nobody would notice if I just read the last page and get it over with. But of course that's cheating. I cannot recall most of the stuff I read anyway these days. Seriously, what is my problem here?

The moment of resigning. Unnoticed almost. One day you wake up and the territory has become familiar, the fear suddenly bearable, death has become a distant possibility again. The unthinkable has become routine. You have become slow, to the point of being lethargic. You withdraw, you spend time doing nothing. Sometimes doing nothing is all you have the energy for. None of this used to be acceptable. And so you have become a person you never liked. When you still had this abundant arrogance of being healthy, you felt - no you never even felt that, you took it as a given - that vitality was a birth right and - worse - an option.

Last week my immunologist told me that maybe I should be monitored a bit more closely, more blood tests, a couple of x-rays, lung function testing, the works. I successfully negotiated a compromise and we will compare notes in January. She mentioned that only 1500 people in this country have my level and combination of autoantibodies. Based on annual figures of diagnoses or whatever. Statistics. I have no idea but I wonder all the same, if ten percent of them have stomach cramps, that's possibly 150 people sitting in their quiet kitchens with a cup of herb tea waiting for daylight unable to finish a decent novel.

28 October 2014

French, seriously so: Talisco

26 October 2014

October road trip part 4

almost home, a short stop at the Chiemsee

October road trip part 3

Trieste, beautiful city by the sea.

October road trip part 2

Suddenly, we have crossed the Alps and are in Italy. Always, always, such a sudden sense of recognition, ah yes, this is what it is like.


Rilke stood here and looked out over the horizon, after he wrote this:

Look: the trees exist; the houses
we dwell in stand there stalwartly.
Only we
pass by it all, like a rush of air.
And everything conspires to keep quiet
about us,
half out of shame perhaps, half out of
some secret hope.

October road trip part 1

First, a Franconian castle (Aschaffenburg)

next, an evening in Salzburg

22 October 2014

The pain I feel is the happiness I had before. That's the deal.

C.S. Lewis

21 October 2014

In the middle of another one of these "It's surely all in the mind" days, what with the wind blowing through the leaves and all that pleasant autumnal showing off, I cycle down to my GP's office to pick up my lab report and it turns out things are not entirely good. But not absolutely awful, so there is stuff to discuss at my next appointment with the lovely immunologist. Which is on this coming Thursday. Provided the railway union will not go on strike again. They are threatening.

This time last week, we were on our October road trip and I was enjoying life in Italy and  now I have too many photographs to sort through. One will have to do for now.

Somewhere on the road across the Alps and through Austria and Italy I seem to have lost my digestive system. I do hope I will grow a new one in time. It's quite awkward, really.

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. 

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:

Cocoa pod disease threatens chocolate supplies.

Coffee under threat.

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


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: