a phone call

Mum, it's hot here, we are swimming in the ocean. What? You have snow already? Then you must listen to Fleet Foxes. You simply must!

winter memory

Sunday. My father excited like a kid behind the steering wheel, a load of family, sandwiches, thermos flasks, skis on the roof. My mother is chain smoking and checking her watch. Fighting in the back of the car. My brother in tears. My sister furiously kicking me. Every inch of space on the back seat has to be fought over. I get car sick.

We arrive at the slope. My father carefully examines the snow, shows us how to put wax on our ski, I struggle getting my boots attached, my sister calls me a baby and heads of into the crowd of energetic happy skiers. My brother hangs onto my mother until she gets impatient with him. We are told to be careful and warned of various dangers and to get on with it, Sunday fun.

I halfheartedly go up and down the slope a few times.

My feet are cold. My hands are cold. My nose is running. My sister and my father fly past me. Soon I just watch, take off my ski and jump up and down to get some warmth into my feet. I stack my ski into the snow and wander off into the little wood pretending I am a polar explorer tramping through the snow until I get to a fence with the motorway running behind it. My mother angrily calls me back to the slope.

I am bored and I am cold. I try to get my boots back into the complicated fitting on the ski, no luck. I kick my ski and they start sliding down and I fall into the snow trying to catch them.

I want to go home. My mother tells me to get a grip and moves on. My father gives me the car keys. The car windows are frozen on the inside and for a while I scratch patterns and faces, numbers and letters I already know. I can erase them with my breath and soon another layer of ice forms. My mother opens the door and pushes my brother next to me. He is crying and the tears are little frozen drops on his cheeks. She sits down on the passenger seat and lights a cigarette.

We know she is mad. It has started to snow again. The car fills with the smell of damp mittens and cigarette smoke. My brother has stopped crying and is picking the ice from his bootlaces, licking it. My mother slaps it off his hands and there are more tears. She silently lights another cigarette.

We sit there for a long time, silent, watching her smoke. Finally my sister and my father come back with red cheeks and laughter. My mother hands out ice cold apples and sandwiches, passes around cups of tea. We burn our tongues.

On the way home I get car sick again.

first snow

Too early, always too early for my taste, it started to snow around 6 am.
The nasturtium were holding on still and I saved a last handful this morning. They will be dead after this frosty night.
I picked the last raspberries. R wrapped the fig trees before he went to work.
My neighbour cleared the snow from our front steps.
The hills on the other side of the river are are dusted in white.
Some expert today's newpaper predicts 50 days of frost and snow.
No, please no, I want to tell him.
I don't like winter.

the fairy bells, the river barge, the hissing pressure valve and the fridge

tinnitus:

Latin, ringing, from tinnire to ring, of imitative origin, plural tinniti

First came the fairy bells, years ago, souvenir from India, Delhi-belly and long overnight train journeys. Benign tinkling in my right ear. Gentle, almost a comfort, never a bother, honestly.

Last September after I collapsed in the night pulling down with me the small sideboard from the upstairs landing and banging my head on the banisters the river barge arrived in my left ear, a steady low drone mostly, occasionally swelling into a louder more urgent hammering filling the whole head. At first I could not believe that this sound was only for me to hear and I would get up in the night closing windows, even walking down towards the river to see and check. I battled with this one, still do at times. I have been told that this is a definite symptom of autoimmune inner ear diseases, a constant reminder of permanent damage.

In February the pressure valve started its hissing in both ears. I often think that what's hissing is my life and that it will go on for as long as there is life inside me to hiss away. Like excess steam.

The fridge noise comes and goes, competing with the river barge in my left ear. It's nothing, really. It's too much, really.

My head, my hearing has become a noisy playground, a battlefield at times. 

Silence is only possible outdoors, with birdsong and wind and actual river barges masking these intruders. 

But there is the wonderful elasticity of the brain. And the faint hope of relearning and relistening.

humming

My friend V spent several months with the pygmy people in central Africa. He told us how his long legs would stick out of the hut he slept in, how he would crouch down to as low as he could during meetings and meal times. How his lanky body - almost 2 m tall - set off laughter and merriment and occasionally awe deep in the rainforest.

He told us about the humming. The pygmy people have general meetings to discuss matters. They sit in a circle and it's not so different from any other business meeting. Only when things get a bit out of hand, when voices are raised, when the atmosphere gets cloudy and heated, someone will start humming, a low humming and slowly slowly the others join in until everybody just hums and the sound moves like a wave gently around and through the group and swells and some harmonies develop and then it slows down, dies down and the talking once again continues. Just like that. The air is cleared.

Sunday's child

Because she lives on the other side of the planet her birthday started when we had dinner yesterday. When I phoned her she was sitting in a crowded bus with lots of laughter and shouting around her. On her way to a festival after a night out camping in the rain. She gathers people around her wherever she goes. The world is her homeland.

When she was born in the early hours on that Sunday morning 28 years ago today there was silence. The room dark and very warm, R shaking and crying, Dr. P, Helen the midwife, V and K, all frozen and staring. No sound. Time stood still.

This tiny tiny doll in my hands. Quickly I cup her head in my hand, measure her hands (one digit of my index finger) and feet (two digits), try to wrap her into my arms on my belly, her eyes closed, peaceful as if asleep, unwilling to be here.

Snap! Suddenly all hectic activity. Helen gently sucking her nose clean, a whimper, a small kitten sound, breathing, a slight jerk. Eyes tightly shut.

I look at her tiny mouth  - my nipple impossibly huge like some sort of foreign body.

K runs downstairs and brings back the kitchen scales, I gently place my daughter in the tray. We all hold our breath, 1000g, a packet of sugar. I look up and into their silent faces. Dr. P nods and I turn to R and I say, you bring her to the hospital. We wrap her up in many blankets, place a small woolly hat, more like an egg cosy, on her head. V takes a picture. Dr. P's car has been running for a while outside. And suddenly they are all gone, R holding our daughter deep inside his coat in all of her blankets, Dr. P, Helen, K went to check on own baby.

Like someone demented I am tossing and turning, hallucinating, hearing voices, aching, aching, shaking and shouting. Someone is wrapping me in a fresh soft quilt, sitting at the bottom of the bed, humming, murmuring in a low and soothing voice until I fall into a fitful sleep. I wake up briefly and V is still sitting there, humming.

R comes back with reassurances, stories of excited cooing nurses and expertise and we hold each other in disbelief and full of wonder.

laryngitis and sinusitis meet bronchitis

All good things come in threes? Any other -itis out there? Come on and let's get it over with.

Bored, coughing, sneezing, shivering, snotty, shaky, aching, cabin fever.

For absolute excitement I am considering wrapping up really well and driving down to the river for a good look. Sneaking out of my prison so to speak.

laryngitis meets sinusitis

It is getting a bit crowded here in my upper respiratory quarters. Grey, misty and cold-wet November weather adds a sprinkle of misery.
Feeling useless, I watched all episodes of The Big C.
Kind of a sugary, empty taste in my mouth now. Maybe the lozenges, maybe Laura Linney's grin.

me and my ANCAs

They have been with me for at least ten years, i.e. that's when they were detected first but who knows how long they have made their home in my body.

No, no, to be fair to these little critters: who knows how long I have been producing them.

ANCA stands for antineutrophil cytoplasmic antibodies and there are different types, cousins so to speak. My variant is p-ANCA which stands for protoplasmic-staining antineutrophil cytoplasmic antibodies.

They are busy little creatures actively involved in targeting my white blood cells or parts thereof anywhere in my body. They will stay with me for good since I am actually producing them myself, see.

Some time ago - and the guesswork includes several scenarios ranging from a miscarriage in the early 1990s, some tropical bugs during my Africa/India years, an overreaction to penicillin in 2000 to space invaders and goblins coming during the night - my immune system (now there is another entity open to guesswork) messed up and went into overdrive, a programming error sort of. And since then it has produced ANCAs in reliable regularity.

That in itself is not the problem. It needs to be watched, ok, but who knows how many people have a slight hitch in their immune system. The tests are expensive and labour-intensive and there isn't a health system in the world that would do this routinely.

The first I knew about them was when a routine health check in 2000 showed that my liver was not well. And the liver is a fairly sturdy organ, all smooth and broad and busy day and night. And it knows no pain. Your liver can pack it in and all you notice at first is that you have a tan and need to sleep more. So when all the usual suspects (various hep viruses, alcohol, obesity) were excluded the serious testing and probing started and bingo, ANCAs were found and my liver was biopsied and the face of the youngish hepatologist was all businesslike when he suggested that I put my name on a donor list as - ahem -  this could mean liver failure in five years.

Well it didn't: my liver decided to recover and is doing well, thank you.

Some years later, my intestines started to act up and to cut a long story short: the critters had found a new playground. But there they have behaved themselves sort of. I throw some benign medication at them every morning and go about my diet a bit more carefully and all is well above, behind and below my belly button.

Boredom must have hit them, because next, my ANCAs discovered my eyes, messing about with one cornea at a time, throwing little ulcers here and there. Nothing dramatic, nothing that a few drops of this and that couldn't clear in time. After a year they dropped the eyes and went into hiding.

So, we  - me and the various medical experts who I have come to know thanks to my immune system - let them be, monitored their levels and hit them with this and that when they got a bit overactive.

Me and my ANCAs, I used to joke when asked, we have come to an arrangement.

Little did I know... as the narrator says in a low voice at the beginning of the horror movie.

Last year, they discovered my inner ears, the place where my hearing and my balance live. Hello? This is not funny anymore and I for one don't call this well behaved.

And they have invited friends to come along. These are called PR3 or proteinase 3 antigens. I am really angry with them and I am not going to waste my time writing about them. So there!

in praise of nasturtium

It is mid November and almost all the leaves are down. Some of the nights it has been quite cold, a touch of hoarfrost now and then.

All summer the nasturtium were hidden by other beauties in the garden. When they appeared, it was a surprise but we soon ignored them. Usually, they turned out a mess covered by black aphids.

They started flowering in September, late. And what an abundance. The garden gate is almost entirely covered and they are climbing up the already leafless pear tree. Every morning when I look out into the garden I expect them to be killed by the cold night only to find them even more robust. I go out an pick a handful for the kitchen table and another for Rs desk and one for mine and they wink at me with their intense yellow heads.

graffiti

Graffiti, amateur graffiti, occasionally is a desperate attempt to make some sort of point and occasionally it's just funny (and often just plain rubbish).

In my 'radical' student days I shared a ramshackle old house with various other 'radical' students for a while. We were cool, chain-smoking, ready to change the world and also occasionally attending our courses and lectures in between sit-ins and strikes and marching on the street against all sorts of issues. Nothing too dramatic in those times. And: We were too well  behaved to spray on public walls. We did our scribbling inside and out of danger.

The kitchen was upstairs under the roof and the grafitti on the second-third-hand fridge was:

If you don't want to eat you are not allowed to work. 

Haha.

Above it on the sloping wall someone had written:

We are not interested in your bits and pieces - we will never be satisfied with anything less than complete freedom.

Did I mention that we were 'radical'?

Years later I saw on a public wall in Heidelberg:

I don't just want one piece, I want the whole cake.

And recently in Berlin across an entire bridge:  

We don't just want a piece of cake, we want the whole fucking bakery!

And right now I don't just want to sort of get through life with itsy bitsy days of feeling sort of better-ish and other days feeling like shit - I want the whole healthy me and occasionally I desperately want to go out there with a spray can.

But my 'radical' cool days are over. This is it now.

laryngitis

That's what immune suppression does to my body. Some time last week I picked up some nasty little bacteria which speedily settled in my sinuses, throat and larynx. If anything it goes to show that the drugs I have to take to suppress my immune system actually do work. Unfortunately, their work description is rather broad. Hence, I now have the dubious pleasure of hosting bacteria that rarely bothered me before. Nasty little critters they are, have done away with my voice for the time being - for reasons beyond my present powers of comprehension most people think that's hilarious and consequently send out hoots of laughter when I attempt to speak, or rather croak or whisper.
So now I have two more drugs to entertain my body chemistry. And I feel miserable most of the time (and I have developed being miserable into a fine art) but then again, the prospect of a highly likely recovery from a common ailment is an interesting change of proceedings after 14 months of chronic illness with weird symptoms. Reasons to be cheerful.

November

Oh how I loved reading this

I am not going to be caught saying "I give up". With every breath I am going to be saying Yes. Or at least...maybe. And "I love" and "how beautiful" and "let's be silly,let's make a revolution of the beautiful, of small pink roses, of courage".

autumn by the river