28 December 2013

bring on the dancing horses

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

order of events

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

what has poetry got to do with my iphone

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:

Gone Home on Paper
The teenager on dark morning counts from 1st floor to 13th 
by the time he gets there, he’s on the roof. 
Fly, fly. The motions of birds, inimitable. 
The teenager draws straight line, immediately 
line of lightning
could only see the nearer half.
The Earth, little larger than Longhua Town, rolls up to meet him
Speed  carried the teenager off;  rice carried off minuscule white.
Mother’s tears jump from the tiles’ edges.
This is the 13th jump in six months. In the past, those twelve names
dusts just settled. 
All night autumn wind runs through Mother’s pearly everlasting
His whited ashes, frail whites  heading home on the train
he’s unconcerned with rice white   pearly everlasting white
Mother’s white
Such an enormous white buries minuscule white
like Mother burying her daughter.
On the 13th floor, suicide net is closing up
this is my job
in order to make day’s pay
gradually turn down screw counter-sink it clockwise
it struggles and fights me in the dark
the harder push, the greater the danger
Rice lips of fresh water, tiny dimples hide two drops of dew, she is still worrying
Autumn loses
one set of clothes day
My friend gone home on paper, besides rice,  your fiancée,
rarely does anyone recall that in Room 701 of this building, 
you occupied bunk,
ate 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.

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.
Pema Chodron

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

empathy is feeling with people

Grey December morning, the sun must be there somewhere. Maybe here.

09 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

Let there be work, bread, water and salt for all.
Nelson Mandela

03 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.


26 November 2013

My mother's body was tiny, she was by now extremely thin, her skin so very pale, smooth and translucent. Her head was turned to the right at an odd angle, her eyes seemed to be staring into the distance and her chin had dropped, leaving her mouth open. Someone had tried to close it with a strip of muslin dressing but it must have slipped when they pushed her bed into the small storage room. Here, in this quiet stuffy windowless corner, without the feeding tube stuck in her throat, she looked strangely restful. Finally. 
But I was not there. My brother told me all this. Or maybe he did not, maybe he mentioned some of it and I have fabricated the rest over the years. He was trying to sound calm, his voice on the phone going on and on, about the dressing, the eyes, the cold room. About the one arm hanging off of the side of the bed, almost touching the rubber wheel. He apologised that he waited until sunrise before he called us, his sisters. He could not bear to stay in that room which in my imagination was crammed with the spare things of a hospital ward, stainless steel things stacked on a trolley, drip stands in the corner. He sat on a bench by the car park, smoking and waiting for the first light before he made the calls. But even that I don't know for certain. When I asked him, some weeks later, he could not remember.
I did not see any of this, her lopsided body, her limp hands, the room stuffed with clangy metal. The last time I saw my mother, maybe two weeks earlier, she was very agitated. At least that is how it seemed to me watching her shrunken body strapped onto the bed, with the humming noises from the monitors, the quiet hissing from the respirator. It had been months since my last visit, when my sister had picked me up at the train station and we had started to argue straight away. Not in so many words, of course. But in the best family tradition of snide remarks, little patronising gestures, tripping each other up. Look, I can hold her hand so gently, almost the loving daughter. But I brought a tape of what I guess is her favourite music. Wait, smell this gorgeous massage lotion I got her. And so on.
And again, that last time I wanted to be the one who really understood her, who could finally read the urgent messages that I thought I could fathom in her eyes, darting here and there, staring at the ceiling. But I could hardly speak, afraid to say the wrong thing. As always. So instead I sobbed. Knowing that in her good days, she would have been disgusted with me. When I did freak out, it was purely for my own benefit. 
I left the room, her bed, in tears, furious. By the time I had calmed down we were already on the  motorway. Four hours later I was home and she was once again out of my life.
Sometime last year when I realised that I had forgotten not only what year but also what day she had died I found out that it was actually the same date when I met R, twenty years earlier.  It never registered. But then I am not big on significant dates.
Right now, I don't seem to feel any of the old anger. We had abandoned each other long before. But I feel curious, when did it start, when did we stop being mother and daughter, when did the space between us become this dark and ugly distance.

24 November 2013

21 November 2013

Today is a beautiful day. Beautiful.
Not because of the weather, the grey fog that has now turned into rain and sleet.
Not because of the blue jays sitting in the trees, although they are very impressive.
And certainly not because a total of three immunologists discussed my symptoms resulting in two of them speaking to me over the phone. And definitely not because I am back on the cortisone mountain for a couple of days.
Today is absolutely beautiful because it's her birthday. My girl, this young woman, so alive, so at home in the world. Skype-laughing with us, the antipodean summer all around her. Always lucky, eating fresh strawberries on her birthday in November.

20 November 2013

Day seven of my latest adventure into the realms of ill health. The general theme here is boredom. And trying not to fabricate something grave and serious out of my quirky little mix of symptoms. Still, after much hesitation, I have booked a telephone meeting with the immunologist. But she is not calling back. Is this a sign? Let's get all worked up about it, shall we?
Hang on, this is only day seven, much too early.
I listen to my father's voice on the answerphone. One of his heroes, a sharp and much admired political commentator, actor and writer died last night. Of course, my father would not speak about this, death is never mentioned. Instead, he informs me of his various plans, a dinner with so-and-so and a concert tonight. I roughly calculate that this means he'll be driving for two hours home in the dark close to midnight. I check the forecast, yes, snow. He thinks he is invincible, in his big shiny car with all its multiple front and side impact airbags and whatnot steering. With his one blind eye, deaf ears and his walking sticks safely stored in the boot. Of course, no mobile phone. He thinks he has the lucky gene of longevity and endless health. The thing is, my brother tells me, that he'll probably take someone with him when he crashes. Could be a bus full of people.
I stop the answerphone but I don't delete the message. Not until I speak to him in person again. Just in case.

15 November 2013

This is what happens when you brag about cycling and fresh cold air, when you paint this picture of a healthy active woman. Which you are no longer and will never again be no matter what. 
It starts with a slow feeling of something crawling up your neck, something hissing in your left ear, you break out in very cold sweat, shivering, and then the earth moves under your feet, the room tosses about and around and the nausea begins. 
You breathe in and out, you try to concentrate and slowly start to count and before you know it, you are on the floor and you hear yourself cursing. And you really know how to curse.
Some time later, you are not quite sure how, but you are on your bed, holding your head in an akward position because for now all you want is that the room remains still for a while, you start to hear music. 

14 November 2013

This is the future.

Not only is Amsterdam one of my favourite cities, I am also a cyclist - have been since my father put me, aged maybe not even 12 months, in the little seat behind the handlebars of his big black bicycle. I have cycled wherever I have lived so far and I plan to do this for a while longer. Daily, if possible, like right now once I post this. Today is cold, just above freezing, but the sky is clear and blue and I'll put on a double pair of thermal mittens. I don't cycle for fitness or as a recreational sport thing, I cycle to get from A to B and back again. Sometimes, this can take a couple of days or even weeks. And I don't wear a helmet. Don't ask, I would only get worked up about risk assessment and behavioural studies and I have the statistics right here somewhere.

13 November 2013

On a day such as this with its jumble of bad sad news and fog and the effects from maybe something I ate it makes sense to go to the vet. 
This vet specialises in pets, so no horse, cattle or wild bird in the waiting room. Instead, there is an elderly lady with perfect blue-rinse perm and the obligatory string of pearls and her two grey greyhound-like-poodles. She is doing something elaborate with flash cards and little treats. Corn, she says, moving the flashcard with a painting of corn in front of the dogs' milky eyes. Car, cat, sunflower, and so on. I try not to stare. The door opens and a large man starts bringing in seven (7!) transport boxes. He stacks them into a neat tower and eventually sits down wiping off the accumulated sweat from his face. Time for the annual shots, he informs all and sundry. Today the cats, tomorrow we bring the dogs. Nobody asks, how many dogs, but we all begin to speculate quietly. 
On my way out, clutching the box of flea drops, I almost crash into the toddler with her pet rat in a Barbie box.
Nothing unusual, I tell my little cat when I get back in, you know, just the odd nutters. She yawns and goes back to sleep.

10 November 2013

Days like this one are what gives November a bad name. Seriously. 
Phone calls, mails, the cranes heading south all day in their large v-shape formations, the news. 
That hollow feeling in my chest because I miss my child too much today. My grown-up woman child.
Sometimes I think I was a good mother. She tells me so, often. I know R has been a great father, I watched him, I learned from him. It was like playing house, we walked into this without a plan, no school of thought, no rules, our confidence so brash it echoed off the walls. 
Just show her the tools, teach her how to use them, love her, praise her, cherish her always, roll out the carpet of trust wherever she goes and let her go, watch her being authentic, always generous, curious, independent.
And now I find myself studying her face on skype, counting the freckles on her forehead, quite unable to comprehend. Where has the time gone.

07 November 2013

This is it what it will be like for the next four months, dark. Probably mostly wet, hopefully not too much ice and snow but things have been changing, winters have become unpredictable in this mild river valley.
I really want two handsome and strong torch bearers to run ahead of me when I cycle home after work through the dark forest. All afternoon I tell myself that I will take the road, never mind the detour, the tram lines, the traffic lights, the big black cars without indicators etc. but then I go out there into the dark bicycle lock-up and I feel like some sort of Arctic explorer and by the time reason hits me it's too late. I am in the dark tunnel with the dripping dark trees, the path covered in slippery leaves. And I tell myself that nobody in their right mind - and certainly no creep or criminal - would want to be here, getting wet waiting to attack a lone middle aged female cyclist. At times, I have to sing at the top of my voice just to make sure that all the ghosts and fairies get the message, too. Mostly, I just curse my stupid stubborn self.

04 November 2013

Another stormy day. I cycled for about two hours, leaning into the wind, pushing and forcing myself to be fit and healthy, my hands and face stinging with the cold air. Now of course I am exhausted, my arms and legs like lead.
When I met my immunologist last Friday she would not hear my polite pleas of lowering or maybe - please - try to go without one or even two of the cocktail ingredients. She explained it all very nicely but still. There are days when I really really want to be the fool who believes it's all in my head. After all that time, yes.
There is always the option risk to close in on myself, like a soft animal withdrawing into a small, dark tunnel. Nursing my fears, my losses, my ill health. Well, it's November, what do you expect. My sister has been going on about it for weeks, with every hour less of daylight she prepares herself for mental breakdown. But what if it doesn't happen this winter, I want to ask her. What if everything will be fine for a change? Maybe we are completely sane!
Someone mentioned last week, as a sort of by the way thing, that death is really easy, that he is not afraid of it at all because people all over the world manage it. Sick and healthy, stupid and clever, young and old, rich and poor, and so on. And for a split second I had this reassuring sensation that maybe even I will eventually achieve some form of calm and age appropriate insights. 
Whatever. But not yet.