Xmas holidays

So it was a bad night and a couple of bad days before that with a lot of nausea and stuff like that and oh such awful weakness like you wish someone would catch you falling and even then you keep on falling. Still, managed the odd short constitutional (on Xmas this is what Jack C would call his stroll) and tried to distract myself with British, nay Swedish crime drama and the usual reruns of Hugh Grant movies on TV.

And this morning we dug the car out of the snow and R dropped me at our GP while he stacked up on whatever. And the GP listened to my murmuring complaining abdomen and squeezed a couple of very sore places and declared me ill with gastritis. But not to worry. I mean, would I? Why ever not. I can worry at the drop of a hat.

The cat chases me around the house and I open the back door for her and then the front door and then the laundry door and everytime it's the same old snow and she gives me this reproachful look as if I put it out there myself. She is bored like a spoilt child locked indoors and nips out to mark her realm and stalks back in record time.

The f key has started to get stuck on this ancient second hand laptop (thank you thank you S) and I started to re-read my scribbling for fear of misspelling the odd f-word which I don't use.

And tomorrow we will drive to the coast to see the snow on the sandy beaches. Or maybe we'll get stuck in a drift or on an icy motorway.

She is 29 years old and in a few months she will receive her PhD in agricultural science. She wants to continue researching crop diseases. She married her boyfriend, a fellow researcher, when they found out that she was pregnant. She wants five sons. This is her first daughter. She will have another daughter and a son within the next four years. She will never set foot in the university again. She will move into a comfortable semi-detached home. She will decorate it stylishly. She will create a lovely garden. She will grow fruit and vegetables, experimenting with different varieties. She will sew matching outfits for her three children. She will have the neighbours round in the evenings for drinks and bridge. She will chat with other mothers at children's parties. She will make jam and bottle the fruit from her garden. She will try out new recipes and solve crossword puzzles. She will drive her kids to horse riding and music lessons. During the summer holidays by the seaside she will read crime novels. She will teach her children how to identify birds and butterflies. She will watch her husband and former colleagues move up in her field of expertise. One day she will take her baby son and climb on the window ledge upstairs and threaten to jump if the daughters don't tidy up the toys.

She will smoke lots and lots of cigarettes and she will have problems sleeping. She will start taking the pills her doctor thinks she should take. She will stop trying out recipes and inviting the neighbours round. She will stop getting up in the mornings to see her children leave for school. She will not watch them perform in school concerts or compete at sports' days. She will start with a martini, maybe a glass of wine, a brandy and so on. She will fight with her husband a lot. She will try to kill herself a couple of times. She will not approve of her daughters' career choices and partners. When her husband eventually moves out she will often forget to eat for days. Some days she will not recognise her children or her grandchildren. She will forcefully reject all offers of help. She will recover from bypass surgery long enough to show affection for her children. Soon after, her lungs will collapse and she will spend six long months on a heart-lung machine unable to speak or move before she will die of pneumonia. She will dedicate her body to medical research. There is no grave.

midwinter

Inundated with snow, like it has apparently never happened before. Certainly not since we moved here. But there are stories of people crossing the frozen river on foot. Today there is a slight thaw and the river is flooding. The roads are slush and the skies are grey.

This morning long before sunrise I heard birdsong. A single voice, but there it was.

Three days at work now after over 12 months of sick leave.

There's a moment after about one hour when I feel the sky is falling and, no, this will not work and then I tell myself, you are stuck here, you have to get through this for a bit longer and whoops, another hour goes by and I have managed.

And after about three hours I drive home, on the radio some debate on whatever and then the forecast (blizzard) and I park the car and struggle with the cover (fucking snow) and pick up the complaining cat and open the front door and sit down on the stairs in the hall and watch my hands shaking and shaking.

And I lean back and listen to the roaring in my banjaxed ear and my bones are so so heavy and I wish someone would help me take off my boots and coat.

And I open the kitchen door and R is cooking and listening to the world service and his face is so tired and he leans over the counter chopping celery and I smile and ask him, how was your day.

it's been a while, rereading Mary Oliver

You do not have to be good.

You do not have to walk on your knees

for a hundred miles through the desert repenting.

You only have to let the soft animal of your body

love what it loves.

Tell me about despair, yours, and I will tell you mine.

Meanwhile the world goes on.

Meanwhile the sun and the clear pebbles of the rain

are moving across the landscapes,

over the prairies and the deep trees,

the mountains and the rivers.

Meanwhile the wild geese, high in the clean blue air,

are heading home again.

Whoever you are, no matter how lonely,

the world offers itself to your imagination,

calls to you like the wild geese, harsh and exciting 

over and over announcing your place

in the family of things.

(Still this overwhelming sense of something too sweet, too right, but so soothing.)

another attempt

So tired, I feel like I have been walking through heavy snow all day. Aching and stiff. I am back at my office for 2-3 hours now, hiding behind my door, late afternoons. Great sense of achievement despite the spinning head. Difficult to avoid people but it's just too much, all this telling and retelling and explaining and over and over "you're looking great" when I am barely getting through. But at least I'm not getting worse. Amazing.

Really hard to pace myself.

reading Aaron Antonovsky

...throughout our lives, we are all swimming in a river full of potential danger. Or, to change the metaphor to one which may be more appropriate to winter [...], we are all skiing down a long mountain slope, at the end of which is an unavoidable cliff with no bottom. The pathogenic orientation deals primarily with those who have hit a rock, a tree or another skier, or who have fallen into a crevice. Second, it tries to perpetuate the illusion that one should not ski at all. The salutogenic orientation asks, first, how the ski slope can be made less dangerous, and second, how do people learn to ski with a high degree of skill?

Aaron Antonovsky

Becker et. al, Int. E Journal of Health Ed., 2010; 13: 25-32

Pathogenesis	Salutogenesis
Start  = disease or problem	Start  = health potential
Avoiding problems and its causes	Approaching potential and its causes
Eliminate risk factors	Create health (salutary) factors
Reactive - react to signs, symptoms, and indications of disease	Proactive - create conditions of physical, mental, and social well-being
Disease or infirmity is an anomaly	Humans are flawed and subject to entropy
Idealistic perspective - treat disease	Realistic perspective - go get health
Prevent pain or loss	Promote gains or growth
Prepare or help prepare one to live	Enhance capacities/potential for full life
Avoid/prevent from being pushed backward	Help/enhance ability to move forward
Against disease and infirmity	For health
For those who need healing cures	For those who want better health
Prevention of negative health	Promotion of positive health
Health promotion	Prevention of disease and infirmity
Outcome - absence of problem	Outcome - presence of a gain
Keep from making situation worse	Continuous improvement
Minimization of problems	Optimization of potential

the river in winter

what we need is here

Geese appear high over us,
pass, and the sky closes. Abandon,
as in love or sleep, holds
them to their way, clear
in the ancient faith: what we need
is here. And we pray, not
for new earth or heaven, but to be
quiet in heart, and in eye,
clear. What we need is here. 

Wendell Berry

more snow, icy roads

on the wall in my GP's office

• Life has meaning under all circumstances, even the most miserable ones. 

• Our main motivation for living is our will to find meaning in life. 

• We have freedom to find meaning in what we do, and what we experience, or at least in the stand we take when faced with a situation of unchangeable suffering. 

Viktor Frankl

resolution

Most of yesterday it felt like I was losing the ground beneath my feet. Felt so sorry for myself and so ready to go into this long whining misery about how awful it is to be so ill and turning my mind around and around this thought, faster and faster until I am sucked into this so deep that there is no other thought left in my head.

I could really make this into an artform. I could. I could really groom this into a shiny big thing, build and polish a throne for a disease that came uninvited. So why do I treat it like a special guest?

I watch out for its slightest signs, every aspect of it gets VIP treatment. As if I am ill first and myself second.  

Obviously, I cannot ignore it with symptoms like sledge hammers but somewhere in this I am still me. Call it autonomy, spirit, soul or whatever. Right now, it feels very small, impossible even.

In theory, I feel strongly that any health crisis can be understood either as a sign from the body to become aware of certain aspects in life and to find new ways of dealing with them, or, in case of limitations that cannot be changed, as a challenge to discover new ways to accept these limitations and to revalue what is left of my health. Concentrating not on my illhealth and symptoms, my vulnerability, but instead on my personal strengths. Where are they? I do have some left.

I do. 

I do. 

I do. 

I do. 

I do.

In theory, of course. There is a way to go still.

three steps forward two steps back

Well, it was too good to be true. My intentions about going back to work.

Last week after laryngitis & co had departed I managed two pleasant afternoons - and that included doing stuff at home in the mornings, even cycling and some housework.

On Friday tiny little alarm bells rang but there was so much snow and ice that I decided to stay put anyway. On Saturday I barely managed our shopping ritual but when we got home I furiously cleaned the fridge only to collapse onto my sofa for the remaining day.

And yesterday...

Today there is no getting away from it. Whatever it is, my body floors me. Literally.

So back to boring rest and fiddling around with this blog design to keep the mind from freaking out with anger and fear.

the boyscout

We first met when he was a medical student in his final year maybe six, eight years ago. He came to me for help with translating his references for an application to work at an A&E hospital in Israel. A cheerful young man with a long ponytail, freckles and a loud laugh. He showed me snapshots of his first child. 

Over the years I translated several of his reports on disaster medicine and triage for publication in expert journals, he showed me snapshots of more children and one day the ponytail was gone. Still, always the laugh, the jolly voice, so many ideas.

Earlier this year there was a story in the local paper about him working for several months with a medical team in Haiti.

Yesterday he stood there at the back door of the institute, freezing in the snow, smoking.  

How was Haiti?
You have no idea, not even if you try to imagine hell.
(Another cigarette.)
But that was nothing compared to Pakistan.
When did you go there?
Just back. We set up a couple of support networks, tried to anyway.
What next?
Benin, next week. Worst flooding in decades, 600,000 people affected, cholera...
What about your family? Children? Xmas?
I never tell them until 24 hrs beforehand. Otherwise there is too much grief.

(Another cigarette.)
So, what are your plans for the future?
This is the future. I can't stop now. 
Your children? Your wife?
Do you know how many dead and dying children I have seen in the last year? 
But...
It's like a drug. Or worse, maybe.
No laughter this time.

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

small hours

There are times in our lives

when patience is more important than efficiency,

when it is better to cope with pain that to get on with work,

when acquiescence matters more than being in charge,

when it is more important to handle the loneliness of a long night

than to be up and talking during the day.

These are the times when we find out who we really are. 

cycling

Waiting at a traffic light on my way to another very short, stressful and exhausting attempt at work I watch this woman through the windscreen. She is my age, my built, but so healthy, so energetic with her bicycle and her windblown face and hair. She checks her route on a map and heads off into the beautiful forest.
And I remember a time not too long ago talking with U at work about the plans we had for our retirement years ahead in the distant future. And I told her confidently that no matter how tight finances might be, at least I would always have my bicycle and so much time to just head off with a map and some provisions for a great day exploring the world out there.

Those were the days when I took health for granted. Shit. Shit. Shit.

reading Elizabeth Strout

from "Olive Kitteridge"

A different road [...] to get used to [...]. But the mind or the heart [...] it was slower these days, not catching up, and she felt like a big, fat field mouse scrambling to get up on a ball that was right in front of her turning faster and faster, and she couldn't get her scratchy frantic limbs up onto it.

slow motion

The day starts shortly after 6 am. I wake up every day just like that. At least for once my body is dead on reliable as I am supposed to take two drugs between 6 and 8 am. So I swallow the stuff in the dark and lie back for a doze or even more sleep until R's alarm goes. I watch him getting up, his day's pressures and schedules are already noticable on his face. We touch briefly, silently, sharing comfort and warmth. When he goes downstairs I usually sleep/doze some more with the murmurings from the worldservice news coming up from the kitchen.
When he is done with getting ready I go downstairs to watch him zipping up his coat and putting on his warm gloves. Another hug and he is out of the door and I watch him walking through the garden, leaving on his bicycle.
I pour myself a cup of tea and go back upstairs and climb back into bed. The cat follows me. She seems to like me being around at this time of the day. Back under the covers I let the waking up begin. Now it is too cold to have the windows open, so no birdsong, no school kids, no busy neighbours getting into their cars.  Instead I silently wait for daylight to take hold and then I read for a while with the cat watching me. I work hard on drawing this out for almost an hour. There is a lot of lonely daytime ahead. Too much time, too little energy.

How I would cherish a speedy morning from not too long ago: Up and shower and breakfast, quick glance through the newspapers, goodbye and off on my bicycle. All motion, brisk, efficient, energetic, ready and expectant. Like a snap with my fingers and knowing, knowing all the time that whatever challenges this day will bring I will manage. In fact, that was always the best part, the challenges.

steep learning curve

Up and down. Good days and shit days. And I am still trying to understand what's going on with my body and every good day rekindles this little weak remnant of trust in my body and every shit day I am using all my energy to avoid falling back inside this vortex of chaos and fear.
The concept of being chronically ill, of things continuing in this way is so alien to me. I am still refusing to accept that I will not get well again. I have been so lucky all my life, so incredibly lucky and trusting - so naive, so sure that I can handle life's challenges. All of them, of course.

Well? How about this one? And then this thought: Why?

home

found in the waiting room

Waiting to see the ophthalmologist, leafing through another glossy magazine I realised after the third repeat that I was actually reading this:

Don't act out of your fear, start to act from your own power.

(Lee Strasberg to Marilyn Monroe)

the Dalai Lama tells me

Sometimes, when we are discouraged by a difficult situation, anger does seem helpful, appearing to bring more energy, confidence and determination. And while it is true that anger brings extra energy, it eclipses the best part of our brain: its rationality. So the energy of anger is almost always unreliable. It can cause an immense amount of destructive, unfortunate behavior.

taking stock

It is possible to live with this disease. Of course it is. But it is so different and because it is so unwelcome, unwanted, it is bloody hard. Every day challenging myself to get on with it, to cherish positive moments, to bear with the hard stuff, to tolerate accommodate my body's - often dramatic - need for rest. To keep the fears and depression at bay. To accept and maybe one day welcome this new life, to skip over the annoying symptoms and get on with what this illness allows me to do. To let go of the dreams and plans I had which all needed my old, healthy and fit body.
It is a long goodbye.

inconsistency

That's one thing I have found out. There is nothing consistent, nothing coherent about life. We try to trick ourselves by creating a coherent life style with patterns, routines, rituals. Waste of time.
That does nothing to diminish life's inconsistency. And it is what makes life so powerful, so full. Life is never what it looks like, what we think it is.
This is certain: I am, we all are, fragile, vulnerable, destructible. It is so difficult to let myself fall, just fall and be here now with this thought.

Niger

I just watched this beautiful documentary about the river Niger, retracing the journeys of Mungo Park. Resting on my sofa I was travelling to Djenne, Sansanding and Timbuktu, on beautifully hand crafted barges, crowded ferries and wading through fields of African wild rice. Women with shiny white teeth, the most colourful dresses and strong voices, I was wondering if any of them had ever suffered from an autoimmune disorder. 
They probably don't have the time for something like that.

2 am

S told us yesterday that she has been having weird nightmares recently. So I promptly wake up in the middle of the night in a wave of panic - and need to get my bearings, take a look at my surroundings, try out my voice and hearing, touch R's sleeping body and sink back to sleep.
A huge wave of gratitude and relief for being here and knowing that should S wake up like that she is safe also and has B's sleeping body next to her.

Sunday's child

I have one child, the world's most wonderful daughter. She was born at home early on a Sunday morning after 33 long and hard hours of labour. She wasn't due for another eight weeks and so this incredibly minute tiny baby weighed barely 1000 g on the hastily produced kitchen scales.
This happened almost 28 years ago. We lived in a commune, had no health insurance in those days, no ultrasound scans, but a wonderful doctor and a very experienced midwife who stayed with us all the time from the moment I started labour, drinking tea, eating dinner, watching Dallas on TV, holding my hand, rubbing my back, listening to my baby's heartbeat und doing all the stuff experienced doctors and midwives do with a woman in childbirth.

The baby, our baby was grand - as they say in Ireland.

She is beautiful, clever, wise, healthy and passionate, an explorer, a nomad, an artist. The world is her homeland and so at the moment, she is living very far away, on the other side of this planet. But she is so close - thanks to all the wonderful gadgets and sattelites that provide almost instant connection.
So when she posts a music video on her facebook profile I can hum along with her.
For me it's an early morning tune, for her it's a lullaby.

Sunday

Like a surprise gift it has been such a beautiful late summer's day with a brisk, warm, southerly wind, lunch outside and deck chair reading.
I can hear the crane and the heron getting ready to leave for their warmer winter residences. Any day now their noisy formations will fill the sky.
My three short stints at work in my office last week fill me with hope. So what if I can only manage short periods? Driving there, sitting at my desk and working for 1, 2 hrs, driving home and crashing out. Maybe I can do this just as much as being bored at home, shuffling around like a demented housewife and crashing out then.
On Friday Prof S and Dr Z were there and full of sound medical advice and understanding. All are really supportive - so far - reasons to be cheerful. I straightened up and cleared out a lot of useless backlog. And I got a sense of autonomy, of doing something not for the sake of keeping myself distracted, occupied.


So, while I am not getting better, I am at least improving on my coping skills. Slowly.

reading Alice Walker

When life descends into the pit
I must become my own candle
willingly burning myself
to light up the darkness around me

today

• finished a soppy novel about a childhood summer picking cotton in 1950s southern US, in bed with the window open and the cold air rushing in
• read absolutely all of today's paper for breakfast
• reviewed a translation of a Jane Goodall talk (ruffled the translator's feathers with my changes - tough)
• started to review a translation of a wikileak/Julian Assange interview
• received a paper on women and NATO to translate 
• spent 45 min with my physiotherapist angel
• did all three sudokus in today's paper and the one from Sunday's Observer for lunch
• answered a phone call from my boss who wants me back no matter how many hours I may be able to work
• drove to my office and spent 90 minutes at work
• chatted with U who just returned from hillwalking across Madeira
• followed G and W's blog about cycling to China, they have now reached the Black Sea
• sat in the car reading and, when it got too dark, sleeping while waiting for R to come back from his run
• cooked microwaved ready made frozen dinner
• injected weekly dose of MTX
• collapsed in front of TV watching another political superficial talk show on the 20th anniversary of German reunification
• managed to ignore symptoms occasionally
• spread my bits of activity through the day as if I was carefully squeezing toothpaste out of the last precious tube

sounds from far away

Summer is over. There are last glimpses of hot sunlight but the winds are cold and the days are shorter now.
Further up towards the main crossing the road is being resurfaced and the traffic conversions are creating a ruckus with horns sounding and shouts carried down into the garden. There is one particular horn going on and off, must be from the roadworks, which calls up memories of standing at the walls of Erice looking down towards busy Trapani on a sunny day in October.

jumble of emotions

It's been a hard two days. full of anxiety, tears and despair.
Last night in a song I heard this line "Be yourself" and there was a blank. I don't feel like myself any longer, I don't know this frightened woman I have become.
If anybody would have told me not too long ago that one day I will be faced with this enormous challenge to my health and spirit, I would have felt positive that I could handle it. Let it come, I would have said, look at me, I can do this - theoretically. And how I looked down on people who let themselves go - the way I do now.
Only, I am not sure if I let myself go. Rather, I seem to be struggling most of the time to stop myself falling to pieces. It's a fierce battle.

This afternoon, R and I did a short bit of Qi Gong with the lovely tape I got years ago. It was a nice piece about the ever changing universe, about yin and yang and two sides of everything together with gentle playful movements of the hands.

And next I read this by Pema Chodron:

A few years ago, I was overwhelmed by deep anxiety, a fundamental, intense anxiety [...]. I felt very vulnerable, very afraid and raw. While I sat and breathed with it, relaxed into it, stayed with it, the terror did not abate. It was unrelenting [...], and I didn't know what to do.


I went to see my teacher Dzigar Kongtrül, and he said, "Oh, I know that place." That was reassuring. He told me about times in his life when he had been caught in the same way. He said it had been an important part of his journey and had been a great teacher for him. Then he did something that shifted how I practice. He asked me to describe what I was experiencing. He asked me where I felt it. He asked me if it hurt physically and if it was hot or cold. He asked me to describe the quality of the sensation, as precisely as I could. This detailed exploration continued for a while, and then he brightened up and said "Ani Pema, that's the Dakini's Bliss. That's a high-level of spiritual bliss." I almost fell out of my chair. I thought, "Wow, this is great!" And I couldn't wait to feel that intensity again. And do you know what happened? When I eagerly sat down to practice, of course, since the resistance was gone, so was the anxiety.


I now know that at a nonverbal level the aversion to my experience had been very strong. I had been making the sensation bad. Basically, I just wanted it to go away. But when my teacher said "Dakini's bliss," it completely changed the way I looked at it. So that's what I learned: take an interest in your pain and your fear. Move closer, lean in, get curious; even for a moment, experience the feelings without labels, beyond being good or bad. Welcome them. Invite them. Do anything that helps melt the resistance.


Then the next time you lose heart and you can't bear to experience what you are feeling, you might recall this instruction: change the way you see it and lean in. That's basically the instruction that Dzigar Kongtrül gave me. And now I pass it on to you. Instead of blaming our discomfort on outer circumstances or on our own weakness, we can choose to stay present and awake to our experience, not rejecting it, not grasping it, not buying the stories that we relentlessly tell ourselves. This is priceless advice that addresses the true cause of suffering - yours, mine, and that of all living beings.

 if only...

the secret

There are moments when I am almost ready to shrug off any notion of autoimmune disease and are busily welcoming the idea my physiotherapist put in my head - namely that the dislocations she can feel in my cervical spine, combined with the resulting tense muscles and sore endpoints of various ribs etc. etc. are familiar to her, i.e. she has seen all this causing vertigo and even sudden loss of hearing in other patients.
I feel as if I have written down a secret. But, no, all these experts have looked in detail at my cervical spine, the CT and MRI images, tested hearing and balance and why would none of them suggest any connection?
Why after weeks of intense and skilled work on my neck and balance did I get a heavy case of vertigo last February?
No, not a hope.

what is it with me

Here I am in my nice and comfortable home, with R's beautiful garden in late summer colours to admire (even in the rain), my bicycle ready for a short spin (which I can manage most days), the river just down the road, a full fridge and larder, comprehensive health insurance and sympathetic doctors, no one to put pressure on me, no demands, no threats, no dramatic financial worries...
Today:a long and lovely chat with my wonderful daughter across date lines, oceans and continents, a short, careful and slow trip to the library with a coffee to go and fresh brioche, my man at home early ready for a leisurely weekend, the cat looking at me waiting for her dinner, the rain almost finished...and all this with my constant companions nausea and vertigo and my dodgy ears... Reasons to be cheerful?

I am ready to freak out!
When I walk through the garden I imagine the long cold winter ahead,
when I am in my kitchen, my roaring head competes with the humming of the fridge,
when I slowly cycle down to the river I think of all the long cycle trips I can no longer do,
when I sit at my desk or anywhere with the laptop, I try not to miss my office and my job...
when I move through our comfortable home I want to throw out all these cosy sofas and beds and chairs and rugs - I am so sick of needing rest!

How much I want to snap out of this!
Concentrate on what I CAN do instead of all the things that are not possible.
Why is this so very hard to do?

I feel so undignified in my despair, so weak and pityful.
So far far away from the woman I was/want to be.

Tony

We are busy getting ready to leave for a trip to the continent, to show our baby to friends and family. It had been unusually hot, indeed, a heatwave giving this damp island a Mediterranean feel.

So here I am packing our bags with my baby girl in her swing seat throwing up and crying. Just what we need now, six hours before we are to board the night boat to France. Quick: wash, feed and isn't she a bit hot? Well, who wouldn't, in this heat. Get on with the job, sing to her, maybe she will calm down. Surely she will calm down.

In walks Tony. A visitor, brother of a friend, home - as they say in Ireland - from living abroad. We never met before, polite greetings. As he lifts up my crying baby trying to soothe her, the expression in his face changes to serious and I watch him moving his hands around her neck, feet, arms, head.

He hands her back to me and tells us to bring her to the doctor, now!

What?? Now?? Who is this guy?

But there is something in his voice that makes us run to the car.

Thirty minutes later I am arguing with the receptionist nun at the hospital emergency desk who cannot understand that this baby isn't baptised. We push past her and the next thing I know is we are standing high up on the top floor of the hospital, holding each other while the doctors are doing a spinal tap to confirm what Tony suspected: meningitis.

He saved her life. And mine. I haven't met him since. But he knows.