in theory

in theory I am strong and courageous and generous and calm and compassionate, obviously compassionate, theoretically I am that noble

sometimes I find myself waiting for a bus - in theory I am a great proponent of public transport but in reality I hate going on buses - and I watch people to still my impatience
in theory I am patient, forgiving, relaxed, at peace, even kind

I really don't like waiting for buses

and so I look at shoes 

when I was a child, no: even when I was a teenager, I used to judge people by their shoes and I once broke off with a guy because he didn't have a single pair that was in any way decent

but looking at shoes gets tedious, they no longer bother me so much
I can handle ugly sandals or smelly sneakers these days
some kind of achievement

and so I start guessing that many of these people here mingling and waiting at the bus terminal must haved experienced death

death of a loved one, an elderly relative, a partner, a colleague, a neighbour killed in a car crash,

someone's child, a former boss, someone close, part of their lives, maybe even someone they are glad is finally gone, 

that long final thing, the life without

and they look ok, they walk and wait and some of them probably look at shoes while waiting

life goes on

look at them, the little voice inside me whispers full of awe, they can handle it, people manage
you are one of them
in theory

pale pink shirt, dancing

1980

when we were young and had long hair and absolutely everything was seemed possible

just as well

Not a single candle, the ornaments purposefully forgotten in some box in the basement, no angels, no sticky sweet cards lined up on the mantle piece, just us and the cat and long breakfasts and reading and not much else, we thought. And then the vague phone call about my father - while visiting his floozie -  stumbling and maybe in hospital and of course his cell phone is off. So I go online and call the hospitals in floozie town and eventually a friendly nurse in some A&E tells me that he is still in the operating theatre. 

Outcome:

A father with a fractured arm and fractured pelvis holding court from his comfortable hospital bed, rescheduling his opera tickets, while he jokingly tells me that he was felled like an oak tree. (To which S calls out Timber! all the way from NZ).

But also: Two siblings mad at me for finding him and speaking to doctors etc. before they did. WTF!

The journey to floozie town was grey, grey motorway, grey fog, grey silent forests. 

These endless forests most of the time. I sit and look ahead and all these wonderful plans and resolutions come up in my mind. I always have so many fabulous ideas on the motorway, long lists of what I'll do differently, better, from now on. Can't remember now, but nifty things, small things, every day things. Also, I cleared up a couple a nagging thoughts, if only I could remember which ones.

The floozie was even more horrid than I remembered and of course she really is not a floozie, just a slightly pompous elderly woman who told me many years ago (in a foolish attempt to win my favours) that she secretly thinks that I must be my father's favourite child and I can still hear me clenching my teeth and vowing to never go anywhere near her again.
Well, there in hospital I tried to be nice and grateful and compassionate, I really tried but she was also wearing a gold lame top with leopard skin print.
So we left them sharing his hospital dinner and took off and ordered pasta and stir fried veg from the room service at the hotel and watched British Xmas TV channels, flicking between Downton Abbey and Armageddon and before that the Gruffalo.

 

Anyway.

And going home we thought, why not stop for coffee in Heidelberg and so we did. And that was lovely, never mind the tourists. It's really nice to reassure myself from time to time that this place is so well looked after - and with it our memories.

this film is a gift

winter music

Snow, ice frozen on woolly mittens, cold feet, cold red cheeks, toboggan, warm drink, back home. Memory.

Could be that one of these will come true: I think I found a choir to join. Nothing dramatic, more fun and games, no serious concert schedules. I'll have a go in January.

I have decided to take whatever my disease can throw at me, wrote Christoper Hitchens. And so he did and what strange comfort I find in his reports and thoughts about being so terribly ill.

Anyway, I never did. But there was a time when all the struggle and resistance  became just too much and instead of this futile dream of waking up one morning to glorious health you start facing your new reality and hope every day a little bit more that the volcano won't erupt again too soon. 

The worst advice I received in the past two years was to start reading about Helen Keller because one - extremely rare - complication of my brand of autoimmune vasculitis is loss of hearing plus blindness.

The best advice in the past two years was to endure and be patient and watch myself cope.

And not run away from the experience. Face the fear and panic. Another way of saying, give in, give up.

No, I am not courageous, sometimes I am that small, cowering in fear, if only for very short moments, yet I do.

And I admit to distraction, hiding behind distraction, often. Sometimes stupid mindless distraction, killing-the-day distraction. Less so these days, I like to think. One day at a time.

cornea care

Another rumble from the volcano. After the first warning in my right eye three (?) weeks ago and a little interlude in the left one, those blasted autoantibodies took a full swing at the right eye again. But, hey, don't I know these critters! I was back in the ophthalmologist's dark room before they could hiccup twice and I have now a strict regimen of drops and ointments and more drops to keep me busy throughout the day and some of the night. And with patience and a good bit of luck this should be over by New Year's day - that's when the drops and ointment schedule ends, anyway. I tell myself that it's just a nuisance once the first round of drops has calmed the burning and my eyes look ever so beautiful now. Only Dr F with her fancy magnifiers  finds various ulcers and craters along the edge of my cornea. 

Was told not to read for a day, so I watched the sky turn dark and stormy and blue and sunny for a while and when I got dark and gloomy I watched almost all of Downton Abbey online in one go and I swear the voices in my head began to speak ever so properly to me, I daresay. How tedious.

The two windows of my mother's kitchen faced north overlooking her vegetable garden with the row of bean poles along the fence. To the left of the windows was an in-built larder where we would store butter and jam and cheese and bread, but it was also crammed with gadgets and boxes and an old basket to collect bread crusts. When this was full, she would cook bread soup, a dreadful concoction. The smell alone made me gag. But from time to time we were made to eat it in memory of how she suffered during the war when there was nothing to eat. I like to think she needed this form of cruelty to reassure herself that those days were over.

But she could also be found in a white lab apron, with a neat row of clean bottles and the juice extractor humming and steaming, full of red currants and sour cherries. In summer, we would sit around the table with scrubbed hands carefully placing peach halves into bottling jars, while she measured sugar and sterilised the clips. In December, cigarette in hand, she would watch us cutting out Xmas cookies from the dough she had cursed at just minutes earlier. Shortcrust was not her forte, but her yeast dough always rose to perfection.

My mother's kitchen had clean surfaces. You could run your finger along the top of the fridge or the backs of the chairs anytime. An entire cupboard was dedicated to the various appliances and dusters and brushes we would need to carry out our household chores after school. You could open the cupboards and find neat rows of boxes and tins and orderly stacks of cups and saucers. But pushed well behind the tins and folders with recipes and the brown-cream striped pottery tea set from Denmark and the heavy stainless steel pots, in the back of the cutlery drawers and inside those neat boxes with the pastel coloured lids there was chaos. A grimy mix of spare buttons, rubber bands, hair clips, shop receipts, aspirins, newspaper cuttings, Xmas cards, dried up biros, broken crayons, candles, long lost notes from school never signed or returned and - if you were lucky - nail scissors, a pen that would write, coins, stamps.

My mother's chair was right beside the window with her ashtray and her collection of medicines within reach on the window sill. She would sit there for hours, smoking, her feet against the radiator, waiting.

Coming home on the last bus at night I would try to sneak past the glow of her cigarette shining through the half-closed kitchen door. But of course she had been waiting, hissing and where do you come from at this hour  as I was frantically fabricating stories involving cinemas and well behaved girl friends and ice creams, when only a short while ago I had been leaning against a wall at the bus stop kissing and smoking and drinking beer. I don't know what she believed or thought of me. I didn't care and, really, I don't think she did either.

look, no humans

except, of course, for one. And what a good one, indeed.

So there I was last night with my head swimming in nausea after the MTX injection, unable to sleep, contemplating - I mean what else is there to do in situations like this? - and snippets from the day rushed past me: another earthquake shaking the ground beneath my child's feet, cat dragging a dry bit of fish (whoever gave her that!) through the house, a colleague telling me in tears that he left his wife, one of the car low beam headlamps went as I was driving home through the dark storm, someone knocked over the paraffin container in the laundry room, both too tired for a meaningful exchange over dinner and then the dishwasher started to leak soapy water from below and behind and all over the kitchen floor. 

And I thought to myself - just for a second, mind you - this is good, this is wonderful, what a life we have.
Oh, mustn't forget those menopausal hot flushes.

If you have the heart to feel and the eyes to see, you discover that the world is not flat. The world remains a rich tapestry. It remains a rich topography of the spirit. The myriad voices of humanity  [incl. the so-called primitive societies] are not failed attempts at being new, failed attempts at being modern. They're unique facets of the human imagination. They're unique answers to a fundamental question: what does it mean to be human and alive? And when asked that question, they respond with 6,000 different voices. And collectively, those voices become our human repertoire for dealing with the challenges that will confront us in the ensuing millennia. Our industrial society is scarcely 300 years old. That shallow history shouldn't suggest to anyone that we have all of the answers for all of the questions that will confront us in the ensuing millennia.

 

Wade Davis

Well, the bad eye is ok, but now the other one has started. Ah, the mysteries of autoimmune inflammation. Today the masters of war had their conference patting each other on the back for the great job they did in Afghanistan and the limos with the flags have been whizzing past down the road, apparently. While I listened to Lyse Doucet on the world service pronouncing it ever so properly (ofghonistawn).

R has started his campaign to save the little patch of wilderness/forest beside the school and I am so proud of this man, he wrote to the board very politely that they should think twice before destroying 20 years of growth in one afternoon for the sake of "security".

Fierce freezing wind today. There is talk of snow. Talk. Midwinter in 16 days.

The rain came. It's grey, wet, damp, shoes get mucky, hair curls again, darkness sets in at 4pm. Endless pots of tea, toast and soup. Satsumas and big round oranges from Spain. Fat Sunday papers to read - in print and online. Earthquake in New Zealand sent S diving under the table.
Surprising what a chubby little Irish man with receding hair can do to a relatively good Pink Floyd tune.

world aids day

December 1982. We were standing in the hallway, the drafty hallway of this old ramshackle mansion, between the mucky wellies, bicycles, a cat asleep on an old chair. Our breaths steaming up the cold damp air. Carefully, L handed over this warm little bundle, my baby girl, wrapped up in colourful wool asleep and warm after spending the last two hours carried tightly against his chest. We both looked at this gorgeous small life and suddenly he started to cry. 

No, L never cried, he was too angry, always, he quickly wiped away a few tears and shoved the latest issue of Gay News in my face. Read it, he shouted, they don't know what it is, but we are dying all over, gay men are dying, someone's trying to kill us!

On the phone, my father rapidly works his way through his two standard concerns, health and weather. His questions come like bullets (How is work? Can you manage? How is your digestion/hearing/balance? Medication side effects in line? Outside temperature? Air pressure? Rainfall? Windy/icy?) and my answers must be brief and to the point. This is all about the big picture, no fretting over minor inflammations or elevated liver enzymes, certainly no mention of feelings  or fear, ohgodnono!  And of course rainfall is never soft or gentle or hard or depressing, forgoodnesssake didn't he install it himself down at the bottom of the garden, the, the what shall we call it, the thingy with a scale recording the rainfall precipitation.

Once we have this covered and ticked off to general his satisfaction, we proceed to politics.

S tells me she has started to play the ukulele and I imagine her in a crowd as cheerful as this.

The first clouds are visible on the rain radar. Hopefully by tomorrow, the river needs it badly.

something for this grey day with everything getting on my nerves

I was in the kitchen, making chocolate pudding when it started,  my mother used to tell me. And it was really easy, hardly any labour. You were born just minutes after we got to the hospital. What a pleasant surprise, but still - the disappointment that you were only a girl. Ah well.

She really wanted this second baby, my father tells me today, she looked after herself, plenty of rest, she was very happy during the pregnancy. You know how she had this thing about sons, but apart from that, you were very much a planned , a wanted child. And she tried to enjoy having another daughter, she sang to you, give her some credit.

It's back in my eyes, ok, just an itsy bitsy inflammation on the edge of the cornea of the right eye like I had before, and the liver values are climbing. Grrrrr, patience! I am staying home today, wrapped up with my cat and a stack of newspapers, eye drops and tea. And for the liver, silymarin, the Blessed Milk Thistle.

Another cold, very dry and stormy day and our big and mighty river is about to disappear. No more ships, no more ferries, just pebbles and birds picking through the debris. No rain forecast. We'll just dry up and shrivel down to brittle stacks of bones crackling in the freezing wind. Oh misery. Oh self pity. What would I do without you.

Officially the driest November on record and the month isn't even over yet. Forest fires are spreading and not a single snow flake anywhere. Sun and more sun every day, cold and dry.

The river looks pityful, scavengers are crawling around the exposed riverbed and yesterday someone found live WWII grenades, together with other discarded rubbish, the odd bank vault - empty. I remember during the last serious drought in 2003 when a car appeared complete with dead driver - he had been shot before the car was pushed in.

I am nodding my head just like the eager monk behind him.

The river this morning is a shy little stream after 12 weeks of no rain. As I cycled slowly with R jogging beside me and the dog walkers and the tai chi groups under the trees and the geese and deer and a magnificent heron cleaning its feathers way down on the pebbled beach I tried to imagine the future scenario which has just been predicted again by another major conference (as usual without much media coverage) on the earth's dwindling natural resources (esp. water) and I hope I'll be dead by the time the glaciers feeding this river have disappeared.

dream

Sometimes the MTX nights are really odd. Last night I was tossing and turning in and out of sleep for the most part and this dream kept on resurfacing where I was giving a speech in front of a huge audience dressed like the guests in the Rocky Horror Picture show, all outrageously fake diamonds and tight dinner suits, while I was standing there in my washed out jeans and R's scratched old Blundstones holding up a gold coated Superman figurine, shouting at the top of my voice, "From the people who gave you Bad Bank and Greed, from the producers of Outsourcing and Landgrabbing, here is their new blockbuster: Vulture Funds!" And the crowd went ballistic. And I woke up in a sweat.

Think I better try and watch more silly romcoms for a while.

ca. 2 years

Doesn't feel that long, really. Obviously also due to skype and fb and cell phones. I even walk the way from her house along the sea and into Wellington on google earth from time to time. My Heidi Klum colleagues are all oh my god, you poor you oh no how saaad  and I wonder, should I feel miserable? But no I don't, most of the time. There are occasional moments of intense physical longing, so heavy I want to hit something. But not unlike the menopause flashes these are quickly forgotten. Most of the time, I think I can catch the reflections from her shiny sparkling life no matter how far away she is. Maybe even better. Also, I don't see the grubby bits and I can smile when she tells me, you would't believe how organised I am now, Mum, no, seriously.

So maybe I am just too watchful, too geared towards disaster happening again. So maybe this is not the volcano rumbling louder and louder below the surface. So maybe I am just stressing the finer details too much. I need distraction. I need to concentrate. I know I need to act really fast if it is an eruption but all I want is to let it happen and anyway, shit happens.  Who cares.

Last night for a short while I think my good ear went out or maybe my bad ear got better or maybe the evening at home noises to my right stopped for a moment, like a short power cut. Off. On.

This morning my tinnitus orchestra has reshuffled and some noises have gone, others have joined and all have changed seats it seems. My head feels heavy, too slow when I turn it and the world moves at delayed speed. And I feel wobbly. Creepy. Sleepy. Flu-ish.

First frost last night. The nasturtiums and the last cosmos are still flowering bravely. I picked a good handful. Another night like this and they will be gone for good.

R tried out the paraffin heater in the greenhouse and it stinks but the lemon tree is alive and happy, it seems. I think it'll die from the fumes. R laughs at me, plants don't have noses, silly.

It is so very bright outside, if this were summer, we'd call it a drought, no rain for over a month and none in sight.

alright alright

Many people think that patience is a sign of weakness. I think this is a mistake. It is anger that is a sign of weakness, whereas patience is a sign of strength.

Dalai Lama

angry today

Bad night stuck behind a table with not so good food and a conversation dominated by a loudmouth too full of himself who dished up predictable xenophobic and misogynist prejudices. Why do I end up in these corners? Should have left much earlier.
Then there are the Sunday papers spilling over with hysteria about moneymoneymoney and old and not so old men (and that woman in the eternal three-button blazers) playing their power poker and another beautiful song gets screwed so that we spend more moneymoneymoney.
So what else is new?
Tell us again, Jarvis.

What is your favourite word?
And. It is so hopeful.

Margaret Atwood in the Guardian

activity

The lab report arrived today and some things have gone up (the yuk things) and others have gone down (bye bye), a weird picture of health-illhealth and as Dr B said, all we know is that there is activity, too much to reduce the meds.

Yesterday I was too active, the day was too full and too long and too many things happened. I was knackered - I love that word, it reminds me of Knackwürste bursting in a pot of potatoe soup. 

It is pitch black dark now when I cycle home and until yesterday I found it utterly thrilling and exciting to cycle through the night forest. There are odd joggers and other cyclists but not many at this time. So yesterday suddenly this man appeared out of the dark, walking straight towards me, not attempting to walk by me or let me pass on my bicycle. I had this vision of him raising his arm and hitting me and I knew that there would not be enough time to press any buttons on my mobile phone (which sits inside a zipped pocket anyway) and so I hissed loudly the way I hiss at the marauding tom cats that come into the garden at times and I pushed past him and he laughed and my heart was beating so heavily I thought it would crack. I raced on and left him behind me. I keep thinking that maybe I imagined it all, that maybe I just blinded him with my bicycle lamp and he was startled. No, he laughed!? Whatever, it gave me the creeps and at least today I cycled a different route, which is longer and involves traffic lights and lots of cars and busses and I don't like it. I don't want this.

And then to top it all I was almost run down by some idiot who drove through a red light. I roared at him and he grinned and I memorized his registration like a mantra in my head and when I got home I went online and for the very first time in my life I reported someone to the police.

Sleep was a long time coming, too exhausted, too much activity in my mind.

So if I were you, I'd have a little trust

Saturday

Late this morning I cycled into BG and walked around for a little while, what a surprisingly mild day. Weird looking Xmas decorations here and there. I sat down at an outside table of the new French bakery with A and we had coffee in those big wide bowls and talked for almost two hours until our hands were cold and time was up. After we said good bye I quickly ran over to the whole food shop to get some tangerines and coconut milk and when I bent down to pull up my bicycle lock vertigo hit me like someone pushing me from behind. It got a bit better once I was upright again and somehow I cycled home in one piece. I sat down on the brown sofa and watched the embroidery on the Rajasthani wall hanging move rapidly to the left while my heart was skipping and my wonky ear started roaring intermittently. Too much coffee, said my prince and I took a deep breath.

I didn't move from the sofa for a couple of hours, eating tangerines and somehow I never freaked out and then I managed to make a lovely dinner - if I may say so - using the gorgeous little parsnips and celeriac that R harvested this morning (onion, parsnip, celeriac, sauteed in olive oil, some stock, crushed garlic, fresh rosemary, simmer for a while, mash a bit, but not too much, add some chopped  black olives and parsley before serving) and now I just finished watching Patti Smith Dream of Life on TV, back on my sofa. And I got all weepy about the fact that I will never ever again be able to go to a live concert which is bullshit because even before I got ill I hadn't been to one for ages and never felt tempted, too pricey, too loud and too late and so on. The last one was that UN gig with Bob Geldof and Hugh Masekela which anyway was for free because I did all that translation work for the  alternative summit and I remember checking my watch and yawning for goodnesssake.

But anyway, went back in my mind to the time when I first heard Patti Smith in Sylvia's kitchen in Heidelberg in the days when I rolled my own fags and had long long hair and we talked about travelling to Saintes-Marie-de-la-Mer next weekend or so, no big deal, only we never did. We were so cool and so broke. And Patti Smith, oh my, oh well!

so much life

waiting for the lab results

What I advise you to do is, not to be unhappy before the crisis comes; since it may be that the dangers before which you paled as if they were threatening you, will never come upon you; they certainly have not yet come. 

Seneca

in limbo

evening sky

Felt like shit all day with a heavy head and so many new noises in my wonky ear and sinusitis all over with the usual headache/pins and needles feeling inside my forehead but I cycled all the way up the hill to see Dr F who was a bit shocked when she heard about the liver values but let's not jump to conclusions and do another lab test on Thursday. At work I went on autopilot and got through it and surely all will be so much better and the sinuses will clear because it's not autoimmune but only a nasty little virus with the chills and so on.

And on Sunday I want to sit in the car next to R and drive to France and someone will email the lab results to me.

Because this is nothing, really.

where is the deputy

The immune system is not something that sits at a specific place in the body; I cannot point to it or put my hand on it like I would on a sore tummy.

In a generally healthy body, not one like mine, the immune system is a well organised team of different cell types employed to destroy viruses and bacteria which try to attack the body from outside.

Imagine your body as a quiet little town of friendly neighbours where everybody knows each other. Obviously, sometimes it can get a bit noisy and restless when the virus gang or the bacteria boys come into town. That’s when the sheriff, the big helper cell, rings the alarm bells to call the posse. And everybody knows what to do: the phagocytes shoot without asking and clear away the dead bodies. They quickly put up wanted posters to warn the whole town about the attackers, while the good citizens start repairing the damage. The sheriff instructs his courageous team of killer cells to search all over town for any intruders trying to hide.  Another group of the sheriff’s team, the plasma cells are also active right from the start, firing off a canon of powerful antibodies. So that the next time the gang comes into town, they get marked right away and are easy to eliminate. But sometimes the cowboys in the posse are a bit unruly and things get out of hand. That’s when the deputy steps in, the regulator cell. He calms everybody down. Usually, that is.

But there are also bad days, when the cowboys and the sheriff had too much to drink and start to run riot in town. And sometimes even the best deputy has enough of it and slinks away while all hell breaks loose.

My liver has started to complain, the lab work points to some unruly behaviour. The sheriff must be drunk again.

bye bye summer

We have the same job that we have always had, to say as thinking people and as humans that there are no final solutions, there is no absolute truth, there is no supreme leader, there is no totalitarian solution that says if you will just give up your freedom of inquiry, if you will simply abandon your critical faculties, a world of idiotic bliss will be yours. 
 Christopher Hitchens

and the day was dragging on

I think I slightly messed up one of the bright young things today. He is so very keen sure of himself and already sees the shiny future of international conferences and prizes for his eventually outstanding research. If only. 

So there I had edited out all his "cirrhotics" and replaced it with "patients suffering from cirrhosis" and - to be generous - the odd "cirrhosis patient" and now he was all huffed because this messed up his word count. Oh dear. And my little lecture that medical expertise must always be about treating patients and not about treating diseases went in one ear and out the other. I offered to set his word count right again with a few changes elsewhere but he went off in a huff. 

And so the day dragged on and my phantom teeth started to ache and the stupid automatic blinds went up and down because the wind was blowing from all directions.

When I leave these days the sun is already way down behind the buildings in the west and when we turn the clocks at the end of this month it will be dark when I get on my bicycle. I am already excited about racing through the dark forest. Today it looked like this:

And tomorrow I will make a big pot of shufta just for the heck of it.

it sure helps to pass the time

I hear that expression more and more. When people are playing euchre or assembling a jigsaw puzzle or listening to the radio, they say they are passing the time. As if time were something to get through and be done with. But if one regards time as finite, then would one not want to slow it down somehow and savour its every moment? Impossible, of course, but that might be an ideal worth striving for.

Richard B. Wright (Clara Callan)

The wind is strong today and the clouds in the west are black. Suddenly the signs of autumn are everywhere but what a weird late summer we had. Delphiniums shot up to flower a third time, our neighbour's lilac burst into bloom last weekend with three mishappenly huge blossoms and R even picked a handful of strawberries. All this while the trees started to drop leaves. At my usually quiet place in the forest where I stop on my way to work, there was a cascade of noise around me when with every little gust beech nuts and acorns were showering down. The ground dry with crackling needles and leaves.

And soon, very soon, the rain will be here.

almost forgot