I am in a hospital room. Almost everything is white except for the pale wooden doors and a non descript painting on the wall. A tranquil beach scene. Possibly a donation from one of the local charity artists auctions. 
Things did not proceed as expected but not I hope due to anything I did or that was found in the myriad tests and blood samples that were done all day.
I am all by myself with the aircondition humming for company. Tomorrow after breakfast, they promised me. Which means I could be home in the afternoon.

In between and all day I have been reading one of Colm Toibin's earlier novels, The Blackwater Lightship, with his exquisitely sharp description of a failed mother - daughter relationship and it has brought back so many memories of the days when all I could think of was how to get away. Far far away. From her and the house and all that was in it. I know I tried to mellow with age - something she wasn't able to either. Well meaning friends as well as total strangers have urged me to forgive and forget and all that stuff about closure  (what is closure?). I did try and I will probably go on trying. But there is no getting away from it. Our relationship was running on a strong current of mutual dislike, disgust and distrust (nice alliteration here but coincidental) and my sister and I are doing our utmost to keep it going. We have set our course, we keep at it.  We had an excellent teacher.
Oh there are moments of genuine kindness and even sisterhood, the positive kind, but these are mere sparks from a time we have almost forgotten.

The day before my mother's life was so unexpectedly reduced to those remaining six months of misery and agony, one day after her successful heart surgery, when she was totally sober except for whatever pain killers they may have given her on the ICU - totally sober for the first time in maybe 30 years - I had gathered the courage to phone the hospital (a safe 300+ km away) and before I could protest they put her on and for a brief five or maybe fifteen minutes my real mother, the one I had loved so fiercely as a child and who had truly loved me as she once did love all her children, spoke to me. She spoke to me the way a mother speaks to her daughter regardless of time and age. Like I can speak to my daughter so often and so easily. Her voice was calm and reassuring and she called me by the name she used when I was small. A name she had not used for 30 years (or if so, only sarcastically. She had a thing for sarcasm.)
Her lungs collapsed later that day and with it her power of speech and her will to live. My sister has not forgiven me for being the first (and last) of us to speak with our mother. We have tried to talk about it but she carries this inside her heart like a sharp weapon and I know I haven't a hope.

In a nutshell

The boss meets the negotiator from the personnel dept. who meets the negotiator from the government agency (who will partly fund my assistant if the boss pays the rest) who turns to me with that cheery social worker smile (no offence) and asks me: in a nutshell, how do you notice a flare up of your what was the name of your chronic disease?

Well, I imagine I answered, it starts with this feeling of utter tiredness washing over me. You know like the time when I was breastfeeding for nights on end. No sleep until I lost all sense of time. But this here is without the exhilarating happiness. More like something fierce holding me down and pushing against my chest. Like walking through deep wet snow. Or trying to swim against a strong current too scared to let go but knowing I will have to.
When the stuff that's been clogging up my sinuses for the last couple of weeks turns out to be crusts of blood and it takes longer every morning to clear. When the tinitus bass quartet in my ears (ok I know it actually is in the brain but) has become a full orchestra with cymbals and trombones and a massive percussion section.
When I count every blessed hour without vertigo - keeping fingers crossed but knowing it can happen any minute because my ears are throbbing and aching ready to explode.
Basically, I could explain, basically this is just the beginning. Those weeks when my head packs it in because you know, everything is too noisy too fast too much even my own miserable voice. By then usually my stomach and my liver and my intestine begin to act up which can be rather painful and tedious because food becomes a problem and sometimes the heart cuts out for a bit on and off and I wake up about 100 times at night soaking wet and shivering and wondering what the heck and I could go on.

But no. You want it in a nutshell. Microvessels get inflamed anywhere in my body but mostly in my inner ears, lungs, throat, stomach, guts and heart due to a programming error of my immune system.

Which is why I am going to hospital on Wednesday for another round of monoclonal antibody infusions. The miracle therapy - here's hoping.

(The boss BTW is going to cough up the money and recruitment for my assistant has started today.)

Three disturbing things I found out today:

1. The first shampoo was sold in 1927.
2. The office of the dean at our local university (founded in 1777, 33,000 students, seven Nobel Laureates so far) is going to introduce parent - lecturer evenings so that the mums and dads of the undergraduates can check on homework and grades.
3. At our local primary school, a private security firm was hired to supervise the first-graders first day, esp. preventing parents and their many relatives from sitting down at the desk next to their little ones, following them onto the hall stage when all first-graders came together for a song, and managing the queues outside the principal's office for special requests.  The situation at the parking lot was said to be chaotic to put it mildly. 

Vanessa cardui

Look! All five chrysalides have hatched, these guys are getting restless, ready to be released tomorrow.

cycled to GP, legs shaking and slightly weepy considering my lack of strength, got her blessings and went to work, survived five hours, drove home, outside temps nearing 40°C, ozone warning from city officials, hid inside the cool house, briefest possible visit to the self pity stop, watched silly cat videos for a while

so then so there so what

I got a bit of an earful from R after mentioning "so then so there so what" without the proper reference. How could I!
So then  so there so what is the title of a song by Zig and Zag, two hideous puppets who for quite some time during the 1980s and 1990s were members of our family - sort of. They had a Saturday morning TV show that fitted in nicely with our schedule (parents in bed, daughter in front of the box) and they produced cassette tapes (remember?) which were used during our years in Africa to shut up the child on long journeys and/or retain a decent enough Irish accent. Of course, we all speak a much more refined version.
The song is fairly mediocre but it gives you an overall idea of the general attitude during our child rearing days.



We got a lot more mileage from the Belly Button Fluff:



And I could get quite emotional about this one (my daughter used to sing along):

Classic mistake. I went back to work because I wanted to show my superhuman commitment and let everybody think what an obviously  tough and dedicated person I am but also because of cabin fever setting in and frankly, because I miss work and for a while I thought I could pretend it's all down to willpower and taking control and just doing it.
Of course it is not, what on earth was I thinking, and so here I am, the stranded beetle once again, trying to remain cool and calm and composed and carefree about the variety of new symptoms. Obviously, I could write about them endlessly but right now I just want to let them be.
So then, so there, so what - as we tend so remark in this family before we move on to our next mistake.


The summer is entering its seedy phase when you stop caring about the flower beds overgrowing with weeds and no longer brush away the spider nets between the garden chairs. The first apples are falling off the tree, there are masses of blueberries, R is shaking the hazel bushes every evening collecting handfuls, the blackbirds are eating the grapes and someone's cat has started to shit on our lawn. Or maybe a hedgehog. Never mind, go right ahead. We know this is going to be over soon enough. Hot sun on your skin, warm wind in the evening, open windows at night. In a few weeks, the spiders will be dust and we will wear long sleeved garments again. I even may be able to recover some semblance of health and fitness. Alternatively, I may find myself without a job and will start making quilts and read that silly meaningful book on how to reorganise your wardrobe with the sock rolled up in a peculiar colour coded way.

The butterfly larvae ate their way to fat green and black caterpillars before turning into shiny hard grey chrysalises speckled with a line a golden dots. There are now hanging almost motionless inside their habitat (a mesh cage) until some time maybe this week or next week they will mysteriously unfold their magic wings and teach us a thing or two about beauty.

It's amazing, isn't it, how all this goes on around me, just waiting for me to notice and be surprised and awed.

Outside there's children laughing
The radio plays my favourite song
The sun is shinning
Oh and peace broke out in the world
And no-one says a cruel word
And peace is the sweetest sound I've ever heard

 

I have been thinking a lot about the video of the young boy in Aleppo and why I posted it. Because my father is right, there is nothing we can do. And I admit that I posted it partly because he said this to me and also because I didn't know what to do with my anguish, how to soften the blow. Which of course has no effect other than a feeling of: see? There you have it. In your face, you cruel world.

The boy BTW is back home with his family, he was (physically) not seriously injured. We cannot imagine what "home" means in this context, how he, his family and the other 300,000 remaining residents of Aleppo get through their days.

I remember when the bazaar of Aleppo was burned to the ground in 2012 and the reaction in the media, what a loss and what a shame. I met a Syrian taxi driver a few days later (we have many Syrian taxi drivers) and he was so upset, the souk, our souk, he cried, all gone! Four years ago, there was outrage because a UNESCO heritage site was destroyed.

Meanwhile, we can donate some of our spare cash to the various aid agencies which are doing amazing things and sleep a little better. Or we can read this report by Dr Sahloul, a physician from Chicago working in Aleppo and lose more sleep.

But most of all, I would like to see this happen:

My father tells me don't look at it. There is nothing we can do.
We are speechless for a short  moment before he berates me about something or other and I can take a deep breath of anger.

There is this slight feeling of ground between my feet. Although to be honest, after almost four weeks  in the horizontal position I am not certain, could be wishful thinking.

At least I don't fall asleep any longer listening to podcasts. Which means that I have been discovering once more how everything is connected. Don't ask. But in my addled little brain this listening sequence was entirely logical: about folk singer Richard Farina, Irish spy and tearoom lady  Margaret Kearney Taylor,  the amazing story of Bala and Shamira Amarasekaran's chimpanzee sanctuary in Sierra Leone,  and the inspiring approach of flipping the script (reverse the usual or existing positions in a situation; do something unexpected or revolutionary) when confronted with hate.
In short, I have once again been able to reassure myself that the world is simply amazing.



The butterfly larvae are getting fat, R has dug up all the potatoes, cooked huge quantities of tomatoe sauce, now ready to go into the freezer, he swept all the floors and cleaned the cooker (surface). He has been cooking dinners for the last six years anyway, knows how to change sheets and do laundry, enjoys grocery shopping to the point that I have given up all hope of ever writing a shopping list again - although this morning I had to mention the neglected bathroom and the ironing . . .
No, seriously, no I did not. I swear.

The summer gatherings are slowly coming to an end, our various visitors are on their last missions catching up with more family and friends elsewhere before coming here again for a last and possibly weepy celebration of life as a family. This is my kitchen window and my daughter cooking (she got that from her father):

these are the days of miracle and wonder

On the day when your boss calls you to assess whether you are still an asset or possibly already a massive burden and you really couldn't care because you spent most of the night coughing

on the day your GP confirms that this isn't strep throat but in fact scarlet fever and that it will take a good while longer before you will enjoy whatever you imagined this summer still has to offer

on the day your sister tells you - sort of by the way - that just before we all got together under my granny's apple trees, three and a half weeks ago, her granddaughter, the sweet but somewhat cranky toddler we all passed around from lap to lap that afternoon, had developed the tell tale rash plus fever and that the pediatrician had warned earlier that she was highly contagious and should be kept at home but my sister felt what the heck

on the day that you open a small parcel that your science teacher husband has placed on the lunch table

you realise that obviously this is the day you start breeding your very own butterfly family.

These are the first five larvae just after arrival. If it works out, I am going for hundreds. This year, we have counted numerous useless Cabbage Whites, one Brimstone and one lonely Red Admiral on our butterfly friendly flowering plants. Clearly, there is room for improvement.

Stop measuring days by degree of productivity and start experiencing them by degrees of presence.

Alan Watts

The night sky reminds me of my wild and adventurous life. The mild breeze, the bats swooping through the air. These memories are good ones, mostly. The feeling that I have done stuff,  felt deeply and laughed often, experienced the freedom that is only possible when being loved.

It's a delicate thing. Remembering.

Other times all I seem to do is compare the present to the my glorious healthy past. This of course, is just bullshit. I am in good shape, diagnostically speaking, immunologically speaking. Everything is under control, all systems observed and checked. No imminent danger. Etc.

And yet, the mind does get stuck on limitations, loss, the never again scenario.  I wonder why.
Mostly now I can ride it out, I have been there often enough (she checks her back just in case). I can fool my people into thinking that I am honky dory super well. For a while, until my voice starts to crack for a microsecond now and then and my breathing becomes slightly uneven. And everything becomes a dead give away and R reaches across the table. (That in itself is a comfort and a luxury. I realise that.)

For some time and without being too aware of it I have started to cultivate places in my mind, quiet hidden places of withdrawal and secrecy where it does not matter how I feel, where I can forgive myself for feeling sorry and afraid. It's no use pretending I have stopped mourning for my healthy life but at least I don't do this  too often. It gets too tedious. And there are moments when even my most stubborn source of self pity shouts: enough.

I am running out of strategies but it doesn't matter. The unexpected has enough purpose and potential.

pretending there is deeper meaning in Brit pop lyrics

There's nothing left, all gone and run away
Maybe you'll tarry for a while
It's just a test, a game for us to play
Win or lose, it's hard to smile
Resist, resist, it's from yourself you have to hide.

(Steve Harley & Cockney Rebel)



There are moments when I think I can see a flickering light at the end of the tunnel. A tiny little light, or should I say a spark, a really short spark, but what the heck. I have always been impatient and it has not never been to my advantage. That much I know after a long life of running into that wall.
It's hard work and only the heavens know why I am making it so hard for myself.
But the thought that I have been here before cheers me up nevertheless, that and remembering that not too long ago, I had the energy to walk and cycle and work and iron and wash the kitchen floor - even all on the same day.
This time around, I don't even have the patience for distraction. Instead, I just lie there in the boring horizontal position and watch the sunlight move across the ceiling, losing track of time.
Maybe tomorrow will be better, maybe the flickering light will get brighter.
Or maybe on Wednesday.

It's not awful, mind you. It's just so ugh, tedious, repetitive, pointless. But what do I know. Being ill has never made sense to me yet. Yet. And basically, i wanted an excuse to post the song.

What follows is totally random stuff from Austria, Italy and Bavaria.

The signs says: Watch our for roof avalanches (Füssen, Bavaria9

Pfunds, Austria (Heide was not in)

Lago di Vernago, Val Senales, Alto Adige, Italy

Pfunds, Austria

Füssen, Bavaria

Füssen, Bavaria

motorway restaurant Illertal, Bavaria

What are days for?
To wake us up.
To put between the endless nights.
What are days for?
Days are where we live.
They flow and then they flow.
They come, they fade, they go and they go.

(Laurie Anderson)

A calm day, a pleasant, wonderful day. A day like an anchor. In the morning I faint after the shower and R runs up the stairs with a cup of strong tea. Based on this past week, whatever recovery I am expecting, it is going to be very slow. I spend large parts of the day in bed where I carefully select a podcast to listen to and soon fall into a floating dreamlike state, voices inside and outside of me fading through the open window and up into the sky. I like to think of it as meditation. 

Eventually, some part of me wants to get up and, dutifully and carefully, I move around, almost sleep walking, deadheading flowers, rinsing the tea pot, hosing down the patio, changing towels, until I am breaking out into a sweat and my heart starts banging with an angry fist. 
After my lunch time cup of milky coffee, I fall asleep for a while. Later, we watch Heart of a Dog, R leaning over the edge of the sofa holding my hands. In paradise, we often played our Laurie Anderson tape in the evening after sunset, sitting on the stairs with the dogs, chatting with passing neighbours, all the kids running around under the mango trees, singing O Superman.

Meanwhile, our daughter, our married grown up daughter is in Ireland, with her man and her friends, retracing our steps from the summer of 1979. They send little snaps from Connemara, smiling in the rain, running along windy beaches, like tourists in their tweed caps, cycling on Clare Island.

Turning time around
That is what love is
Turning time around
Yes, that is what love is

(Lou Reed)

When you have no choice, don't be afraid.

proverb from somewhere, I forget

My secret life of luxury

The main thing is juggling. Keeping it all in balance, not getting distracted by self pity and outbursts of angry howling and banging of fists into the next best pillow. 

It's a simple list of tasks when you look at it: rest, crawl into shower, struggle with towels and clothing, don't look in the mirror, ignore laundry and ironing, rest, answer - cheerfully - any phone calls, watch mindless online tv, rest, sleep, eat something, drink plenty of water, rest, read, fall asleep reading, ignore work emails and - most importantly - be nice to the man in the house.
That's the worst case scenario for the next two weeks, more or less.

Of course, in my wildest dreams . . .