05 March 2014
First, I get to cut R's hair. The beard he does himself. Next, we go into the woods to loosen limbs and brain cells. And to find more signs of a very early spring.
After that, the house is full of builders, an old tree is felled, a new one is planted, the cat goes into hiding, and my balance organs shut down.
04 March 2014
27 February 2014
As much as I tried I could not finish the short story I was reading last night. Too tired. It was a beautiful story by Elizabeth Bowen, the magnificent Elizabeth Bowen who wrote Last September. And of course, Bowen's Court, long since knocked down.
The story opens with a woman driving along a country road on a summer's evening, the sun is setting and shadows are slowly covering the distant hills. And of course I was searching for clues and names and eventually placed her on a road coming down from the Galtee Mountains driving south towards Fermoy or maybe even Cork. But it was late, too late now and I fell asleep with the beautiful thought that I will continue reading in the morning.
Some time ago I went to this public lecture. Nowadays, public lectures have to have spectacular themes to pull a crowd, what with all the competition and the internet. This one was called: Learning in your sleep. Actually, it transpired that it's not strictly learning that takes place in our brain while we sleep but that our brain apparently stores and develops whatever we have been thinking about just before sleep. In smart science vocabulary, the offline consolidation of memory during sleep represents a principle of long-term memory formation.
So, we are thinking or reading about something just before sleep and if we are lucky, glimpses of it wander from the temporary storage area inside our brain (where, so it seems, most of what we remember gets lost) to the permanent storage space. And during this process the new stuff sticks onto old stuff and lost memories are rekindled and new memories are formed and so on. There is a lot of clever research done, incl. sniffing rose petals and lavender while memorising complicated rows of figures and shapes before going to sleep.
In my dream last night I was 30 again, driving our battered moke up and up the St. Louis Road and into the forest and then downhill with all the sharp bends towards the coast, past the police station, turning left towards the beach where I stopped the car underneath the large Takamaka trees.
I walked into the almost still surf, north-easterly monsoon, hardly any waves. I closed my eyes and pushed myself under water, resurfacing after a long slow dive. Floating with my face down I could see the sharp colours of coral and fish deep deep below me. And I was overwhelmed by the incredible feeling of being carried, supported on this thin line where ocean and sky meet. The sun was about to set. So close to the equator, it sinks at the count of ten. I turned around and watched the sky darken. The trees were full of birds.
I have had the most wonderful life, so far. I have even been to paradise.
25 February 2014
So the guy who wrote Ghostbusters has died of my disease. Strange feeling.
In the early days, one of the experts told me that had I been diagnosed 25 years ago I would have been dead within six months. But that today, with all the meds and the research and the developments, nobody dies of it - just like that.
Well, some do. But I am invincible.
In the early days, one of the experts told me that had I been diagnosed 25 years ago I would have been dead within six months. But that today, with all the meds and the research and the developments, nobody dies of it - just like that.
Well, some do. But I am invincible.
23 February 2014
Today, an ordinary person can't pick up the phone, email a friend or order a book without comprehensive records of their activities being created, archived, and analysed by people with the authority to put you in jail or worse. I know: I sat at that desk. I typed in the names.
This is a quote by Edward Snowden from yesterday's Guardian. All well and good, I want to say. But no, what bothers me more than anything is the term ordinary person. Because, my dear Edward, you are thinking in a box, your box of ordinary people. Your ordinary people live in Western societies, affluent Western societies. In another interview, you claim that a child born today will grow up with no conception of privacy. You actually claim that mass surveillance is watching everything we do, how it affects the average person. I get your point, don't worry, but when I think about your average person, I also get the arrogance, because with all due respect - and I mean it, you did and continue to stick your neck out for all the right reasons - the world is far more complex and there are children born in all the myriad corners of this planet for whom privacy will never be a concept worth considering. In fact, according to the latest statistics, 22000 of them die every day and not because Bill Gates has failed to supply sufficient mosquito nets or because someone is spying on them. Indeed, maybe they would benefit from a bit of surveillance, maybe less would die. But before I get carried away with my standard rant about causes of poverty, hunger and injustice (which in my book are all man made), let's remember this: Just because we are wealthy - and by gosh, we are - and have iphones, we are not the apex of some imaginary pyramid of advancement.
If we accept that we're all cut from the same genetic cloth, it means by definition we all fundamentally share the same kind of raw human genius. And that brilliance and potential is made manifest through technological wizardry and innovation--which has been the great achievement of the West--or, by contrast, invested into unraveling the complex threads of memory inherent in a myth, or understanding nuances about the relationship between human beings and the spirit world. All of those things are simply a matter of choice and cultural orientation.Wade Davis
19 February 2014
15 February 2014
Four days on another planet. Only four days, three long nights. R picked me up in his space ship and I slowly came back to Earth as he drove along the river in the rain.
During the day and when not examined under clouds of midozolam and various other anaesthetics, I walk the long hallways, those shiny yellow linoleum floors, meeting other patients. Strange, how we all recognise each other here as if we have met before. A young man with many piercings and tattoos tells me he will have surgery tonight. He almost runs from me to hide his tears. A Turkish woman walks beside me for a while, she has no German but uses her fingers and smiles to tell me that she has three daughters and two sons. And with the thumb of her other hand, she introduces her grandchild. She lifts her top to show me the two massive scars near her kidneys and gently pats my belly when I indicate why I am here. When I tell her my age, she lifts her arms and shakes her head and I realise she does not know her date of birth, her age and probably cannot read or write. One of her sons steps out of the elevator and she quickly covers her beautiful long hair with a large embroidered scarf.
My compulsory insurance cover stipulates room sharing. This time, we are three. Which is nice, all in all, and not only because it enables food swapping. I feel very grand giving away everything from my tray except the clear broth I am allowed.
At night, we talk, tucked into our identical bed clothes, with the lights down and the gurgling noises from the oxygen masks of my two room mates. First, the usual stuff, children, work, homes, family and so on. And then of course, being ill, the treatments, the doctors, the future, the past, the pain, the heart, and so many worries. And before you know it, K talks about her three year old girl, who died of cancer 44 years ago, back in Greece while she was working here sending money home to pay for treatment and M bursts into tears telling us about her horrible horrible marriage to a man who died 27 years ago. Outside the church bells ring, two o'clock.
Later on, we lie in this strange silence, drifting from sleep into thinking and back again. Tomorrow K will be told that the cancer has spread to her liver. M's granddaughter will promise to look after her when she gets better, please please please. And one of the doctors with a friendly but worried smile will explain procedures to me. Which include a most horrid disgusting 12 hrs of you don't want to know (mainly spent gagging etc. on toilets) and something like 5000 biopsies taken here and there and suddenly it is all over.
Take it easy for the next 48 hrs, they tell me. No lifting etc. Eat what you can handle. Results asap, they promise.
10 February 2014
Tomorrow at 11 am I am to check in to hospital for the whole shebang, four, maybe five or who knows, just three short days of fun with colon and stomach and assorted other organs. I don't expect I will get to eat much. Part of me wants to treat this like any old adventure, cycle there with my essentials, my nightdress and toothbrush tucked into my old red panniers. And of course, cycle back home when I have seen the sights and run out of clean underwear.
But I suppose I better play the part of mature woman with a nagging chronic illness. Anyway, I feel so much better. It probably was nothing apart from losing a bit of weight.
I'll bring a couple of books and the ipod with my latest collection of radio documentaries and the soothing voice of Jarvis Cocker for long nights. And I'll catch up on life without internet. Last time I was in hospital, I watched two series of Madmen almost nonstop. And now look where that got me.
07 February 2014
05 February 2014
I suppose it's all about doing something without thinking. It's nothing really, we all do it.
Brahms. I just switch off. Especially when it's dark and rainy and the traffic lights change too quickly and I know I will be sitting here in the car for another ten minutes or so. At least. So, no Brahms and no Haydn, no Mahler, no Dvorak while we're at it. None of that stuff for me. Thank you very much.
Honestly, I do try it once in a while. I mean, it is beautiful music. I know that much. Sometimes I can just sit there in silence but most days, I quickly change channels.
Small children love their parents. They can't help it. Small children are like Konrad Lorenz's baby geese, forever following their parents. All that love, that hope, that devotion. And the trust. Thinking of this overwhelming trust my knees begin to shake.
Some days when I am waiting at a traffic light in the dark car just after I switched off the classics channel I want to sit my mother down and look into her eyes all calm and composed. I want to be the small girl I was then and at the same time I want to be the woman and the mother I am now. I want to tell her that small children can feel compassion, that they can understand and that they care, that they watch you and that sometimes what they see can be so big and heavy it hurts. I want her to know, very urgently, that small children need to understand what is going on, that whatever it is, it is not their fault.
The Sunday mornings, the house full of Brahms, a mother crying in the kitchen, gagging from the smell of frying meat, overcome with black memories of burnt flesh, the pleading voices, the sound of breaking china, the ambulance.
Your children, I want to tell her, will stand out in the cold by the garden gate for long dark hours waiting for the headlights of your car to reappear. They will sit quiet as mice in their room waiting for you to unlock the door again. They are waiting for you to allow a hug and they will promise you to be good, to be quiet. With all their heart, they will promise you anything. For you to be better.
And when it becomes harder and harder over time, still your children will try. Until one day, when it will be easier to pretend, to lie.
And I want to tell her that I know all of this because my own daughter taught me this so beautifully from the day she was born.
02 February 2014
After six days of swallowing a handful of pancreatic lipase capsules with every meal I can see some light at the end of the tunnel. Faint, but there it is, incl. a cup of decent coffee with hot milk, outside in the spring sunshine. Never mind that spring at the beginning of February is more than odd, if not downright scary.
Of course, I have consulted dr google only after I read my way through a couple of online articles from scientific journals. I know what happens when you do this the other way round.
I have also chosen to ignore the fact that the capsules are made from the pancreas of dead pigs. (In my defence, I can state that I found this out after I felt the first improvements. But still. My inner vegetarian is however too sick to respond.)
At night, when I wake up and listen to the rumbling and painful cramps in my abdomen, sipping more hideous herb teas and hugging a fresh hot water bottle, I discuss my case with my GP.
I am his best informed patient and he listens quietly while I expand on the probable causes of exocrine pancreatic insufficiency, its therapy options and my suggestions on further steps to be taken. I can do this really well. I have seen enough court room dramas to know how to plead my case of mild hypochondria cum panic. Still, it is quite some work and fills the hours nicely until the dawn chorus sets in.
30 January 2014
Today is day four on my way of recovery from the weekend. I think I am getting better. At least I have started to laugh a little bit about some of the stuff he did and said. A sort of incredulous laughter. Did he really do that, say that and that and that? Yes, he did.
But for the time being I am not answering my father's calls. Just a precaution. I don't want to treat him like shit or - following my sibling's advice - a rude 85 year old child. Or be his rude 56 year old daughter in return. This time, I will lick my wounds a bit longer and then do the grand magnanimous thing of forgive and forget. Anyway, that's the plan.
There is this tall, skinny man I remember, grating apple into our muesli in the warm kitchen of our crammed little flat. He is blowing a lock of his unruly blond hair from his forehead. We know he will tell us a funny story once he is finished and we can all start our breakfast.
28 January 2014
27 January 2014
23 January 2014
The GP is still working on it I have been told. So am I. Nibbling bits of toast and sneaking in a spoon of mango yogurt - time will tell. Dandelion tea as well. I am getting somewhere.
Meanwhile I am lining my stomach with sarcasm and dark humour as the world prepares to gather for my father's 85th birthday on Saturday. There will be speeches, there could be amateur chamber music (please no) and there will be the usual gawking and whispering until the first round of bubbly has been downed. After that we will all be at our best behaviour and pretend to be sophisticated academics or something like that.
We will listen to various versions of my father's grand achievements and we will all pretend that he did what he did without the support of a wife who will not be mentioned. And why should she. After all she is long dead and gone and can no longer mess up the ceremony sitting in the back smoking and tsk-tsking and generally showing off her superiority - before and during getting pissed. In her moody condescending way, she was never a rowdy drunk. No, she could put you down and in your miserable little place after two bottles of vodka just as well as if she'd be sober. Probably even better. But I really don't want to remember.
Maybe my brother and my sister and me will exchange a quick look but who knows, we may actually just have a decent enough time.
And I will wear my new jeans and a freshly ironed linen shirt. I told him I would not do the black dress thing and he laughed and suggested a warm cardigan instead.
The buffet dinner will be an adventure and I shall cross that bridge when I see what's on offer.
This series of groundbreaking events will be framed by two long train journeys through possibly snowy landscape, the magical river valley and I will be able to watch it all in silence with R doing his paper work across from me, a couple of BBC podcasts in my ear and who knows, maybe a whole bunch of really weird and interesting people will come my way.
22 January 2014
Seemingly my stomach has now almost completely stopped to process food. There is still watery porridge to sustain me in small spoonfulls but all the other stuff, no way. Except for a bit of steamed cauliflower in between. But seriously. I know that the early Irish settlers lived to a very old age with their staple diet of everything made from oats. Although I bet they picked juicy berries and killed the odd animal for a feast.
I love food, I love cooking.
In my GP's surgery today I asked whether I could just get a new stomach please. One made of rubber or plastic so that my immune suppression meds cannot do so much damage. No luck. Instead I have to wait now for him to call back with yet another action plan.
And of course, coffee sends me round the bend with pain and black tea is not so good either despite the fact that I try and sneak in the odd cup. There is always fennel tea and this fancy concoction from the pharmacy with yarrow, nettle and mint. It tastes just like it sounds, yarrow yarrow yarrow yarrow...
Plus hot water bottles.
This is certainly one way to lose weight quickly.
21 January 2014
Obviously, I am totally against animal experiments in scientific research and I have supported every campaign against it ever since. But there you are, research labs around the world are working with a veritable zoo of animal species. I have edited papers on the most gruesome things: sheep having their knees fractured and fixed with gadgets that are now used to help Olympic skiers and runners and various millionaires back on track, genetically modified rhesus monkeys for the testing of vaccines against cancer and millions and millions of rodents, most of them with inbred diseases, tumours, disabilities etc. are used in research on almost everything.
The terminology alone is staggering. Animals are usually sacrificed, they are never ever killed or culled. Occasionally, they simply die. If it's part of the study design, that's an ok expression, if not, they are lost to follow-up or, worse, excluded from results. And their living conditions are spotless and under strict observation with protocolled access to chow and water and so on.
Not unlike cattle or pigs and certainly better than battery chicken.
Then again, some of the findings are amazing and what can I say? I have a serious chronic disease and somewhere along the line, the drugs I have to take to stay alive were certainly tested in animal studies.
And rats are amazing creatures. They can teach us a thing or two.
For example, that helping each other is more important and better than eating chocolate.
When we act without empathy we are acting against our biological inheritance. If humans would listen and act on their biological inheritance more often, we'd be better off.But rats teach us one more thing. Helping each other means helping everybody, not just our own people. It's something rats learn really quickly and maybe one day, we humans can learn it, too.
In mammals, helping is preferentially provided to members of one's own group. Yet, it remains unclear how social experience shapes pro-social motivation. We found that rats helped trapped strangers by releasing them from a restrainer, just as they did cagemates.
And when we reach this new level of social empathy - frankly, that should not take us longer than the couple of days it took the rats - images such as this one will let us open our homes and our hearts and just like our friends, the rats, we will do whatever it takes to help free our fellow human beings from their misery.
18 January 2014
For a very long time, this bulb is sitting in the rice bowl S brought from Tashkent, ontop of the ancient tv set.
As indeed they do. This is what you find one morning and from past experience, you know that you better stay put.
As indeed they do. This is what you find one morning and from past experience, you know that you better stay put.
12 January 2014
08 January 2014
All this here and now stuff is pretty hard work, let me tell you. It was sometime in early December when I gave up on the always-look-at-the-bright-side-of-life way of living.
For the time being that is.
At least that's the plan.
That things will pick up and get better just as the days are getting longer again.
Tomorrow another expert wants to poke into my body and soul and judging from past experience with ENT procedures, this will involve having warm and cold water poured into my ears until the room starts to spin - or not spin which indicates that a balance organ is kaput. We know that fact but what the heck, let's all have some fun and play young scientist competition. Mustn't complain, mustn't complain, it's all on the house and who knows maybe there will be breakthrough findings.
Meanwhile, my youngest unmarried daughter is gallivanting in (on?) the South Pacific islands which is simply wonderful and we are awaiting her reports and pictures with giddy excitement. As my prince remarked this morning while looking out into the still dark skies, at least one of us is having a great time.
Whereas here, the weather is confusingly mild, last summer's geraniums are in flower as is the pink rose and the birds are busy in the bare hedge. I want to go out and shush them into silence. Don't get carried away, I want to tell them, it's early January, there could be a blizzard around the corner. And then what.
All in all I feel a tad too cynical and smart-ish and I know it will fly into my face soon enough. At least that much is true.
Hope and fear come from feeling that we lack something; they come from a sense of poverty. We can’t simply relax with ourselves. We hold on to hope, and hope robs us of the present moment. We feel that someone else knows what’s going on, but that there’s something missing in us, and therefore something is lacking in our world.
Tomorrow Jimmy Page will be 70 and tonight I watched R dancing to this song in the kitchen, while he was cooking. It is still magical and will always remain so, the song and of course, my man dancing.
Oh how I puzzled over this song title, in the days of bell bottoms and tie dye shirts, long before I could even speak a single word in English.
06 January 2014
04 January 2014
I love this song. A waulking song in Scots Gaelic sung by six people from Donegal in 1981. At the time, they were mildly famous in Ireland, two brothers and two sister and two cousins, known as Clannad. That was years before the younger sister, Eithne or, as she later called herself, Enya, became famous with her warbling hazy musical carpets which waft away like empty clouds.
We sat in the audience when they played in Dublin, just days after the album had come out. I was wearing pretty much the same type of dress and exactly the same shoes as Maire, the other sister and lead vocalist. Total coincidence and of no deeper meaning but involving a trip to London's Natural Shoe shop in Covent Garden. Which at the time was a tiny little workshop in a narrow lane off the main drag.
Earlier that day I had found out that I was pregnant and I remember thinking that hearing this music will make my baby happy. And it did.
I don't understand a word they are singing but I have been told by someone who actually understands the lyrics that it's about love and love sickness and weaving tartan cloth.
It's called Mlorag`s Na Horo Gheallaidh.
03 January 2014
After a series of exceptionally nasty break-ins in this quiet not-at-all-posh neighbourhood we are reluctantly looking into ways of making our modest home somewhat burglar-proof. Wishful thinking, which involves the concept that there are people who want what we have. I try to look at our stash of goodies as something that may be valuable enough to be worth the effort of breaking and entering. Maybe if I put up a sign (sorry, no jewellery, no cash, ancient tv set, all electronic goods five years and older)? Over the years we have hidden away what we consider to be treasures in ingenious hiding places, some of them so ingenious that we cannot find the stuff now. There are at least three house keys buried under meaningful markers in the garden, so meaningful that we will need to dig for days and probably not find a thing.
My mother-in-law hid her jewellery in the linings of the bedroom curtains. We found out when we cleared the room before the house was sold many years after her death. Here, we have no curtains (my father thinks we are living like gypsies - and not in a positive sense) so even if we had any jewellery that option is not available.
Instead, clever people have been coming around demonstrating clever blinds, time locks, light systems, real and fake cameras and all sorts of fancy stuff. With every new gadget they show us I can see my shabby (let's face it) little house turning into an ugly and mean fortress and I think I am reaching the point where I give up. As in: Oh just come and help yourself if you are so needy, I am not going to lock myself into a bullet proof bunker etc.
But I have been told to stop acting like a child.
So just at the right moment, the star boys, or rather: three little creatures dressed in long shiny cloaks turned up at our door, supposedly representing the three wise kings, magi, wizards whatever. They sang a little song, held out the collection box for the poor and starving misfortunates in the care of the catholic church and scribbled these magic signs above our door: 20*C+M+B+14. Apparently it translates into "christus mansionem benedicat" (may christ bless this house). So all is well again. We are safe, no?
31 December 2013
Being lost, I think, must be a modern affliction. It requires a collapse of personal geography. And herein lies a paradox. As our species becomes more successful, more populous, we fracture the world into ever tighter panoramas—into countries, provinces, towns, neighborhoods, streets, houses, rooms, “private space.” In this way, a proportionally larger share of the planet becomes alien, exotic, threatening, unknown. Today, we take up residence in our navels. We forget: The entire world is ours. We possess it. It is ours to move through. The anxiety of becoming lost in it—the jail-yard lifer’s fear of losing sight of his cell—is another unhappy side effect, like bad teeth, of sedentary life.
I consult my GPS. A reflex. I remind myself: The people who discovered the world were going nowhere.
This is where we are, there is no better place. Our tribe has walked from Eden into Eden. Whatever we do or strive for, whatever we think ails us, whatever we feel we are missing. All the loss and all the love is here. Let us discover this again and again every day . This is my wish for 2014.
28 December 2013
There is a message in my inbox inviting me to earn money with my blog. Oh dear, have things deteriorated that much? What has the world come to etc.
Indeed, it is grey, very grey. Looking outside you feel tempted to adjust the cable the way we sometimes have to with our old tv. Last night we watched a recent film by Neil Jordan and I kept on thinking, when did he start his b/w phase, and, it really can be dark and rainy in Castletownbere, (which is where the film was made) until R started jiggling with the plugs and hey presto, blue skies.
After a prolonged rest, aka Xmas holiday, I went to work again, pretending to be fit and healthy. I survived my obligatory four hours most efficiently, mainly thanks to the fact that hardly anybody was around apart from one research guy who - bless him - mentioned that I looked a bit pale. I tried to fob him off but maybe he had a momentous day of boredom or maybe his latest test series didn't come up with the proper results, anyway, in the end we played a quick game of doctor and patient and he suggested iron supplements. Sweet, eh? Being surrounded by medical research experts has its moments.
Back home I did the decent thing and retired to the horizontal position. That was my father's favourite phrase when he had to answer the phone to any of our friends who happened to call before we were up. In the dark days before cell phones.
The tiny voice somewhere in the back of my head persistently whispers that I am not well. Actually, its exact words are fucking unwell, but what's the difference. I have no idea what to do next and I honestly don't care at this moment in my fabulous life. With any luck, things will improve and if not, well then, they won't.
This thing I posted yesterday - about everyone you meet fighting a battle you know nothing about - came from my daughter's fb page. It is beautiful and scary because now of course I am thinking what battles she
is could possibly be fighting and there goes another quiet night.
This is a sentence I have stored in a secret corner of my brain, from an interview with another medical expert:
While modern medicine cannot cure your illness, understand that your most important human qualities - your personality, your feelings, your intellect, your memory, your ability to love and be loved - are not restricted by being ill, not now and not in future.
Bring on the dancing horses, the skies are grey and wet.
25 December 2013
December was always a quiet, hushed month, holy in a strange way. Of course, all the rituals were my mother's attempts to create the impossible. I see her opening the door to the sitting room, in her black dress with the small fur collar. We loved touching that collar so much. She looks so tired but this is her time, the way she wanted it.
December starts with the Advent wreath, sitting on the coffee table with its fat red ribbon and the four red candles. Every day, when it gets dark, we are allowed to light the correct number of candles, we each get to choose a treat from the bowl of mandarine oranges, nuts, coconut macaroons, spekulatius and springerle and sit quietly while she reads a chapter from Mary's Little Donkey. Sometimes, she will play the mouth organ for us but only if it does not make her cry. We may sing a little bit, more like a humming, not disturbing the cosy quiet almost dark room. Just before the candles are blown out and the lights come on, she burns a small piece from the pine wreath and now the room smells of christmas.
In the mornings, there is the advent calendar with its carefully designed rota as to who is allowed to open the little door and gets to eat the chocolate. We find this very difficult but she is adamant, no discussions.
On the 6th,
Nikolaus our next door neighbour in a red dressing gown and fake beard comes to check us out for the Christkind. My brother starts crying and hides under the table. I forget the poem I was to recite and try to impress him with an improvised song. My sister is very embarrassed and kicks me from behind. In the end, he opens his big gold book my father's old Latin dictionary and reads out the verdict - we have been both good and bad - and hands out small presents. My father disappears with him through the back door.
On christmas eve, the sitting room door is locked and the blinds are down. My mother is strangely absent, while my father tries his hand at breakfast. We are sent upstairs to tidy up. Eventually, my mother appears, nervously serving a slap-dash lunch and again, we are sent upstairs, this time to change into the clothes that have by now been carefully laid out on our beds.
By the time it gets dark we walk to the church. My sister is a shepherd in the play. My mother has made her a long poncho out of a blanket and I helped wrap gold foil around
her shepherd's staff my grandfather's walking stick. There is a murmur of laughter when my sister steps out, with the false beard and her thick blond braids which she forgot to stuff under the poncho.
On the way home in the dark my father plays funny tricks and when we reach our street we are allowed to race and see who is faster than him.
And then we sit in the hall, faces still cold, waiting. There! A bell, a tiny tinkling behind the closed sitting room door. The door opens and my mother smiles at us. We tiptoe into the room.
We have never seen a more magnificent tree, all the way to the ceiling, with twelve beeswax candles lit in their silver holders, tinsel, baubles, chocolates and golden walnuts. There are sparklers hanging in the branches, hissing and sending tiny stars across the room. The radio is on, church bells from around the world.
At this moment, we are very good children holding hands, we are a happy family.
I can see my parents standing at the back of the room, watching us three in our matching outfits. Two young people who had barely left the memories of war behind them. Was this what they wanted? A dream come true?
23 December 2013
We don't do christmas in this household. Maybe because we couldn't be bothered, maybe because we don't get our act together or maybe because we had our fair share and more of it by now, after all, we are both over 55. Maybe there are secret traumas of rejection and loss (seriously? No.) or maybe we are unconsciously rebelling against consumerist capitalist society (yawn).
We don't do presents, either, with the exception of children, of course. We do donations, we rub it in, we are ever so politically correct on our very high horses.
It is the most humbling experience.
Today, we received a letter from a member of small co-operative in rural Uganda which - together with many others - we have been supporting for several years. He tells us about the detrimental effects of land grabbing and bio fuel, about imported chicken from subsidised European farms crippling the local producers. He also sends us pictures of the solar panels and the solar cookers they have been installing and the tree seedlings they have been planting to reduce their carbon footprint.
We look at each other across the table in our cosy kitchen with all the gadgets, our two steaming mugs of coffee with hot milk fresh out of the microwave, organic whole wheat bread, French cheese, dried tomatoes from Italy, Spanish olives, the fat slab of whole almond milk chocolate S sent all the way from NZ. What is going on. Tell me.
19 December 2013
Guo Jinniu was born half a century ago somewhere in rural China. Jinniu means golden bull or maybe golden ox, excuse my ignorance. Like so many before him and since, he eventually found his way to one of the new cities, Shenzhen, where he worked on an assembly line making mobile phones, 17 hours every day.
Someone like me is not allowed to live the life I secretly long for. But I can write what my inner voice tells me to.
Today, he lives with his wife and two children in a windowless room, 12 sqm. The family owns exactly one book, Selected Poems in World Literature. He no longer works at the assembly line, he now works for the local authorities registering the streams of migrant workers. All this I read in one of our daily national papers.
Guo Jinniu is a poet. This is one of his poems. It just won the International Chinese Poetry Award.
I shy away from translating the German version and find this on an obscure Chinese site:
Home on Paper
teenager on a dark morning counts from 1st floor to 13th
the time he gets there, he’s on the roof.
fly. The motions of birds, inimitable.
teenager draws a straight line, immediately
line of lightning
only see the nearer half.
Earth, a little larger than Longhua Town, rolls up to meet him
carried the teenager off; rice carried off a minuscule white.
jump from the tiles’ edges.
is the 13th jump in six months. In the past, those twelve names
night autumn wind runs through Mother’s pearly everlasting
whited ashes, frail whites
heading home on the train
unconcerned with rice white
pearly everlasting white
an enormous white buries a minuscule white
Mother burying her daughter.
the 13th floor, a suicide net is closing up
order to make a day’s pay
gradually turn down a screw
counter-sink it clockwise
struggles and fights me in the dark
harder I push, the greater the danger
of fresh water, tiny dimples hide two drops of dew, she is still worrying
set of clothes a day
friend gone home on paper, besides rice, your fiancée,
does anyone recall that in Room 701 of this building,
occupied a bunk,
Dongguan rice noodles.
Someone jumps. From the roof of a factory. He wanted a better life and he came to this city. These jumps are reality. I think, it was 18 young workers, within the span of a few months in 2010. From the roof of foxcon where the iphones come from, our wii, our xboxes, the biggest electronics manufacturer in the world. I read on:
We are kept like robots, not allowed to speak, for 12 long hours. If you need to use the toilet you have to apply for a number. I fixed the net. Nobody is allowed to jump anymore.
Charlie Chaplin's Modern Times in today's China.
17 December 2013
16 December 2013
The first noble truth of the Buddha is that when we feel suffering, it doesn’t mean that something is wrong. What a relief.
Another frosty night and the sky this morning was a cold sparkly blue, so innocent. I was looking out at the contrails up high behind the bare trees listening to my GP making arrangements for a couple of tests (just to be on the safe side, don't you worry) while his receptionist was filling out the forms I need to send to the insurance so that we get a refund on the money we paid for the - by now cancelled - trip to Vienna.
What if I just get my coat and leave. What if I never again sit in a waiting room trying to remember the list of symptoms and observations I had been composing all night in my head. What if it doesn't matter at all what I say. What if I just step out into this beautiful sunny morning air and walk away.
14 December 2013
This has been a difficult week.
Here in my lovely warm home.
I look out over the soggy lawn and the limp nasturtium killed by last night's frost, turning my face towards the briefest glimpse of sunlight. On Tuesday I packed it in, stopped pretending and everything has become hard work. When asked how I feel, I change the subject. That's the easy part. I want to do it right this time, or at least better, more dignified than four years ago.
Because it's big, this one. Oh yes.
A veritable eruption.
This time, however, I want to be grown up about it. Not so insulted, so angry, so childish.
None of this drama queen stuff.
The worst case scenario is as ever: unbearable pain, loneliness, death. And of course, nothing could be further from the truth. I am comfortable. This being winter makes it harder, I think. But maybe not so. The early hours are still dark and silent when my mind begins to roam and speculate, when symptoms spin out of control and my breathing becomes shallow - until I catch myself and slowly begin to pull myself up from the deep hole of everything and nothing.
In my dream last night I was being poisoned. And while I was carefully examining all the food in my larder, suspiciously discarding one thing after another, I realised that the poison was me.
11 December 2013
08 December 2013
One of the awful things that living with a chronic disease brings - wait, that's not the way to start this, because to be honest, living with a chronic disease in my experience has so far not exactly been not awful despite all that endurance and enlightenment stuff and the positive living and acceptance shit and oh yes, the good that theoretically comes out of the dark times.
Well, at least I haven't figured out what should be so great about it. But then again, who knows what kind of middle-aged woman I may have become without this. I wonder if my child would dress up in a life size giraffe costume on skype to cheer me up if I had remained fit and healthy. So, ok, one great thing about it. Probably a whole lot more. Must think about this another day.
Anyway, another uninvited aspect of this state of things is that any symptoms which in theory could stem from a common and garden virus or a stomach bug or whatever, that is anything from a runny nose (which I haven't had for ages) to feverish abdominal cramps with arrhythmia (of which by now I have had my decent share thank you very much), feel like another nail to my coffin.
No, not really. Only joking. Why is this so complicated to explain. I always think another thing has started and is here to stay for good. As in, a runny nose for the rest of my days so to speak. Which is daft. Or as my GP once said: why not have something normal for a change.
At present, things are a bit complicated because I have beautiful lab results, mostly (apart from the anca shit but we all know that this is here to stay) but a couple of symptoms screaming to high heavens. Nothing unusual and nothing I could not manage (she declares bravely) but this time I want to be well enough to travel in nine short days. Fingers crossed, light your candles.
06 December 2013
On February 11, 1990, Nelson Mandela was freed from prison after 27 years. On that day I was working in my air conditioned office in a tiny African town - you really could not call it a town but it is in fact the capital city of this tiny state which we call Paradise.
Here, I was reinventing the wheel every day anew with a group of friendly but cautious young men and women who I am sure mostly laughed at all my efforts but greatly enjoyed my tales of life in Europe. I loved them all and some of them actually liked me back. When the news finally made the rounds - remember, no internet and no daily newspapers, just two hours of daily radio messages in the mornings (if you had a radio) and three hours of Cosby show reruns for the wealthy with TV sets on Sundays - it was like a wave. Small first, whispers, incredulous looks, shaking of heads etc. until eventually one of the embassy drivers pushed open the big glass door to the building and marched right up to my desk shouting: Mandela is back, heh you, what do you say now? And people started smiling, shyly, never showing too much emotion in front of a white woman, but when I let out my great cheer, we all clapped each other on the back and even hugged and sure enough, some Bob Marley tape was found and I went out and organised beer and samosas for all.
05 December 2013
02 December 2013
After two weeks of whatever, I was back at work today. There, I did it. Other people go to work - have to go to work - with more dramatic symptoms. I had forgotten to what level fatigue can rise and how it can knock me over once the door has been opened. But I made it. Frankly, I have no idea how but never mind.
And the sun was out today after such a long time.
Last Thursday I sat with a friend who is having a hard time coping with the sudden death of a young niece. Now, that is what I would call a hard time and she is struggling but underneath she has this tremendous trust, in life, in recovery. We sat close and hugged and held hands and I wiped away her tears and I was hoping that some of her trust will rub off on me.
But in the end I just felt sad. And a bit afraid of dying. But only a little bit, for a short while.
I read about this study with the 75 healthy male volunteers at the University of Hamburg. These happy and healthy men were randomly assigned to two groups and half of them were given a nasal spray with oxytocin and the other half were given a nasal spray with salt water. But of course, nobody knew who got what. Some time later, a nice male doctor comes along and rubs two identical ointments on two sites of a participant's arm all the time
explaining and identifying pretending that one of these is an anaesthetic ointment that reduces pain and that the other one is just a control cream (but we know that they are both the same). Then the doctor does some elaborate mumbo-jumbo setting up something to measure pain stimulation. Next,
a series of 10 stimuli of the calibrated intensity was applied to each of the 2 sites in pseudorandomized order. Each stimulus lasted for 20 seconds, followed by a rating procedure and 40-second rest.
And here's the thing:
Despite identical thermal stimulation on both sites, pain ratings for the placebo [anaesthetic ointment] site were significantly lower compared with the control [ointment] site across both treatment groups.
So just because they were told that the cream was reducing pain, they felt less pain. Well, yes, I have been a mother to a small child, I know that trick. But there is more:
The placebo analgesic response was significantly higher in the oxytocin group compared with the saline group.
In other words, the participants who got oxytocin trusted the doctor's instructions, believed him and felt less pain.
I've got a long way to go here. Obviously, no oxytocin is coming my way and thanks to all heavens and skies, I have very little pain. But still, I wish I could trust my doctors, just take my meds and do as told and rest assured that they know what's happening and that I will be ok - whatever that is - and never once let any or all of these nagging worries and questions enter my mind and spread through my body like an electric current. Being unwell can turn into an endless session of existential questioning and struggling to hold back the what if scenarios. All that stuff that theoretically I have long left behind.
So what else is new.