28 December 2011

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

27 December 2011

pale pink shirt, dancing


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. 
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.
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.

21 December 2011

winter music

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

19 December 2011

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.

18 December 2011

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.

16 December 2011

11 December 2011

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.

09 December 2011

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.

05 December 2011

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.
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.

04 December 2011

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.

01 December 2011

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.