early summer

It's getting quite blustery and hot out there. The cat has come in. Big news. The vertigo has settled in nicely, most of the time I am so seasick I want to puke. In a bright spark of insight I decided to get myself to an ENT exam this afternoon. And now I am entertaining the wild notion that all will be well. My prince will come and drive me there as I am prone to toppling over when I am not doing my drunken walk. 

Until then I shall wander into the basement and slowly move all of our precious valuable junk out of harm's way because there is a storm coming with prospects of very heavy downpour and as we all well know by now this could mean flooding. Not from a swollen river bursting its banks about half a mile down the road but from too much rain pushing its way through the sodden ground through the basement walls and up the drains. If it happens it will be the third time in four years and we still won't connect the dots. If it doesn't happen, well, life goes on and we can pretend for a while longer that this is just a bit of weather.

soothing my corticosteroid overdosed body

Here I am watching rose petals drop in the warm wind. What could be more pleasant on this mild morning in late May. Well, for starters, I could enjoy it. Just sitting and watching and enjoying it. No thinking, no speculations, not counting the days of sick leave accumulating on my work record, looking for causes and something to blame - what was it this time. What did you do wrong now, you ignorant fool pretending to be healthy.

Detachment. I could really do with some detachment. Maybe a little bit of confidence as well. Instead, I am in the grip of vertigo, my hands are shaking with the effort of keeping some form of balance. Somewhere in the back of my mind I know this will pass. Eventually. And once the cortisone spike is over and done with I will be less emotional. Last night I cried watching Peggy and Don dance to Frank Sinatra. Honestly.

A nausea morning. The air cold still but the sky is this very sharp blue, the power of the sunrays approaching like a giant octopus (hah!). The early hours of Fridays are always delicate, thanks to the effects of the weekly injection of my immune suppressor drug on Thursday evening. Talking about octopus, I know.  Actually, I had some very decent octopus curry in paradise, but let's not think about food right now.

Instead I am plodding my way through a manuscript from a wealthy, retired academic who secretly wants to write a novel while reviewing recent approaches in the therapy of alcoholic liver disease. It doesn't work, obviously. Right now, the pages are a colourful mess of my comments and suggestions and I know I will have to stop being so diplomatic and cut it all down to size soon enough.

I woke up tasting blood from my bleeding gums this morning and while I was tumbling down into the black hole of panic (tooth ache, the world is coming to an end) I  listened to R breathing peacefully in his sleep. That was actually quite beautiful. Sometimes, only sometimes I ask myself what it must have been like for my mother and all her demons and pains and fears, living alone in the big house while we were all as far away as possible. And of course I ask myself how I would have coped in her situation and then I quickly stop and I avoid looking into the mirror for a while because she stares out at me through my eyes and that I cannot bear.

Rain at last. Lots of it. I am hiding inside with blanket and hot water bottle. My digestive system once again in spectacular turmoil. Last night I slept for 14 hours. More or less.

Generally, I feel I should use these times of immobility for deep thinking and reading and mental improvement and so on. But why? I mean there is no exam at the end of it and my chances and willingness of moving up the career ladder are zilch. Not that it matters. Not following a career path is obviously the consistent motto of my life. I like a bit of consistency from time to time.

No, what I need to do right now is watch online tv. In 2010, watching Brothers & Sisters carried me through some very nasty times despite my child's disgust and persistent attempts to get me interested in more meaningful programs (Flight of the Conchords, Black Books, Summer Heights High). I stuck to it until that woman who had breast cancer back in thirtysomething lost her memory after a car crash. Thankfully, my health was getting better by then and I was able just in time to realise that I had been watching utter rubbish. 

But then again, thirtysomething is one of the few memories I have of the last time we lived in Dublin, a year of full time work (with career options staring into my face), my child unhappy in a crappy school, my man hoarse and tired from teaching adolescent boys and my lovely mother in law dying of cancer. I know we all did try our best but that year is a blur. 

In my memory, I am either driving through Blackrock on a rainy Sunday morning listening to Walking in Memphis and crying after visiting my beautiful mother in law in hospital. 

Oh, I loved that woman. Or I am switching between Irish and UK tv channels following two different series of thirtysomething episodes while making up a knitting pattern to copy the cardigan of that university professor guy, the blond one with the beard who gets killed in the end. 

It was not a happy time but there you are. In the end, R spread out the job offers on the kitchen table and we threw the dice.

My tv analgesics of choice today are Endeavour and Mammon.  So far so good.

Before R left for work he gave me the rundown on the news about Ukraine. He thinks the stock markets will collapse or something equally unfathomable to my less developed brain (money wise that is). In the early mornings I can hear the booming voices of the BBC world service coming from the kitchen. 

I have a hard time relating to these events. I am a child of the cold war, I grew up in a beautifully reconstructed medieval city about two hours drive from the minefields, barbed wire fences, floodlights and watch towers that were then the inner German border. I had no interest in what was behind it, I imagined a mix of ruins, barren landscapes and eternal Doctor Zhivago-ish winters if anything. The most eastern place in Europe I have been is Prague on a school trip during the cold war which meant that once we had figured out how to exchange our deutschmarks on the black market we really truly lived it up. On the last day we handed out the fattest tips just trying to get rid of the stuff before we were frisked at the border.

While R, who grew up on this green neutral island way out on to the West of Europe, is forever trying to get me to see the potential impact, contacting former colleagues now working in Odessa and Moscow, circling the vast contaminated area around Chernobyl on the page of the Times atlas of the world. And of course, he knows everything about the Black Sea ports, the Crimean Tartars and the steps from the Eisenstein movie. Ok, I knew that one as well. 

All I know is that I am glad my mother is dead. She would be terrified. In my dream some nights ago she was sitting on her chair by the kitchen window, smoking and crying. And the three of us were silently watching from the door, not able to understand what was going on, waiting for our father to come home, to hold her and talk to her in this special voice for a long long time.  

1st of May dinner

I don't usually do this.

Recommend books, that is. OK, yes I do, but only to S and because she is my child and because I have watched how as a fairly small person she discovered reading and books, the whole magic and all that stuff. I still remember the exact day she suddenly stopped reading aloud  - she used to walk around on the smooth lino floor of the little bungalow in paradise, geckos climbing the walls, the noises from chickens and dogs and kids and whatever floating in through the open louvre windows, holding up her book and reading at the top of her voice - and suddenly she sat down and I watched her getting lost in silence, deep inside the story.

Another time, some years later, she came running from her bedroom telling us that someone in the Ingalls family now had a driving licence and how come nobody told her. This was the time when the prairie life was reenacted in granddad's garden with blizzards blowing through the rose beds and the raspberries.

So now I have read a teenage novel in one go and want the whole world to read it. Thankfully, it has been translated quite nicely so I don't have to do that - I was seriously considering it for a split second (and would have failed dramatically). For understandable reasons, the English language version is Why we took the car.

The author, Wolfgang Herrndorf has moved my heart and soul and the heart and soul of so many others last year with his blog. Which ended on the day he shot himself. He started the blog after he was diagnosed with a most aggressive brain tumour. Early on he wrote that he always felt that life needs uncertainty and hope but that while it is possible to live without, there is only half the fun in it. Sorry, I garbled this but sometimes the powers of translation fail me.

Anyway, the book is all about life, glorious, wild, abundant life and the story has nothing to do with death and illness. Recommending it feels like passing on a secret. 

I know nothing. I haven't figured it out at all. You'd think that after 4+ years I should have  discovered at least one measly little way to "listen to my body" (now there is an utterly rubbishy phrase).

But no. Whatever it is, it floors me out of the blue. As in totally. Which is the only regularity I can see. That and that I haven't the faintest idea why for several days in a row (!) I can be - yippee - so well and then - whoom - the shit hits the fan, just like that.

I mean, honestly, I have not attempted the impossible, run a marathon or missed out on rest and sleep or whatever.

So, in other words, there is no telling where this is going. Obviously, there never has been but you get sort of cheated for a while. That and spring.

But what else is new. I have never been good at letting stuff happen, let's face it. Don't get ill if you can help it. I mean it.

This day. The morning sky a pale blue with towering clouds, no wind. Almost breathless walking through the garden, so much lush growth, whispering and swishing leaves and blossoms and petal showers. The birds are spectacularly loud, the little old cat dizzy with excitement but not too sure why. 

And so this day stretches ahead, sunny and mild. I start with one task, another. There you go, easy does it. See me now cycling up that hill into the deep dark green forest. Just like a thousand times before and still, every day like the first time. I am under the magical canopy with shafts of glittering sunlight.

To know that it will be here tomorrow. 

Work is moving a messy bundle of tasks, requests, loose ends.. slowly and carefully - politely, always - across my desk until all that is left is a smooth surface reflecting the evening sunlight. And again I dive into the forest, breathing in the smell of warm tree bark. Three large drops of rain, I race home under dark clouds. 

And finally, the garden again, a cup of tea, the little old cat asleep now below my chair. Happiness existed today, somewhere, I don't need to know its shape.

travelling

Easter weekend in Leuven

and Maastricht

It's been a good week. In all respects. I cycled to work every day through the forest and the chestnuts are beginning to flower. But we need rain badly.

almost perfect world

Spring is so amazing. I know, the cliché etc. but every year it is such a beautiful shock to the system. All these dynamic forceful changes, every morning another colour, another smell. And the noisy birds, singing and shrieking and mating and digging through the vegetable beds.

Four years ago there were times when spring was all I could hold onto. It feels almost foolish now that I have turned into this veteran of chronic illness. But there was this raw time of loss and grief and this inability to come to terms with something that was never meant to be in my life, at least not in the life I had up to then and imagined to stretch all the way into the future.

Three memories stick out.

1. One of the experts who initially diagnosed me had alerted another of his patients because - so he thought - there were so many similarities in our diagnosis and course of illness and comparing our stories could help me in the long run. He had asked for my permission to pass on my email address and several weeks later she replied. Full of apologies for the delay because she had fractured her collarbone while on a skiing trip. A what? Here I was trying to hold onto the frazzled bits of my former life, every morning waking up to the booming thoughts of the potential of this diagnosis (everything from drug side effects, kidney failure, going blind and/or deaf to, well obviously, death - I do know how to recognise drama) and she has come back from a skiing trip! Clearly, this was a mistake and we were not talking about the same thing here. But yes, we were because she had in fact gone deaf, dramatically within one dreadful night of high fever. And apart from the fact that my hearing was fine again, her list of symptoms was mine down to the finer details. And then she wrote: While I cannot tell you how and when, I can promise you that you will feel better again, that this heavy flare up will calm down once the drugs have started to work. And all I could think: promise? How dare she promise me anything? Look at me, look how ill I am.

2. Some time earlier, a friend had given me a voucher for ten shiatsu sessions, again with the promise that this would make me feel so much better. It did not but mostly because getting there was too hard. On my way to the second appointment I drove down a one-way street in the wrong direction and was almost flattened by an oncoming bus. It didn't help that I am a careful driver (sorry, yes I am!) and that I had been living in this one-way system city for almost 20 years. The shiatsu woman was experienced and kind enough to suggest we postpone. Instead she made tea and told me that, for a fact, our bodies, our cells, our tiniest atoms are there for only one reason: health. And that they/our bodies are continuously working on repair and recovery, always striving for health. Not my body, I wanted to tell her that day but I was too exhausted and not quite sure how to get home.

3. Soon after that I was waiting for my father to pick me up from yet another hospital after a week of tests confirming that I was unable to tolerate the drug I had been taking in high doses for the last three months and that this was possibly responsible for most of the heavy symptoms I was experiencing. So they swiftly changed medications, ran another couple of tests and sent me home with best wishes. There was a small cafe with outside seating and I sat down and started reading the headlines of the newspapers on display the way I always do this. A volcano had erupted in Iceland and brought air traffic to a standstill.  Somewhere too high for me to see the ash clouds were drifting and shifting but all I could see was the sky, clear and blue and calm and so vast I wanted to fly up and disappear into it.

And now, four years later, there it is, like a cut under the skin that will not, will never heal. No matter how hard my atoms strive for health. And yet. There is no denying, I feel complete.

The monotony of being unwell. Always something out of reach. The sudden bursts of anger, the fever curve of pretend energy followed by exhaustion. Maybe it's all just my imagination, oh leave me alone. And always, another go at it. This is what it takes to be alive.

The moment you accept what troubles you've been given,
the door will open. (Rumi via fb)

 On my way to work, strange creatures look at me in the forest. So strange I snap my pictures and cycle off quickly.

Climate change a threat to security, food and humankind

When I was a student in the 1970s the term acid rain cropped up and made its way into our rebellious conscience where we stored it together with all the other stuff which was proof to us that our parent's generation was the root of all evil. Nadanadanada. 

I still have a cutting, an old cartoon from the taz, wrinkled recycled paper, speckled with holes from the various thumbtacks used to pin it on noticeboards above my changing variety of desks throughout the years. It depicts a dreary landscape, barren fields with broken tree stumps, cars and fumes, heavy skies. In the center, a grandfatherly man bends down to a crying child who looks at him with trust and sadness and he says: Believe me, if we had known that driving cars kills trees, we would have stopped immediately!

My father would let out one of his furious snorts whenever he noticed it. In his opinion, this was too emphatic and obviously over simplifying complex issues that will be solved in due course by this advanced society - in which I was for reasons beyond his comprehension and patience unable to participate and pull my proper weight.

But that was then and look, acid rain treaties have been signed and well, yawn.

Last night I was listening to Bruce Springsteen, the double album we bought in 1980. At a time when we were always broke but so full of ourselves, the communes, the organic gardens, food co-ops, alternative education for our home born kids. Life was one long line of exciting rallies, fundraising concerts, peace camps, pickets all the way to utopia and oh, the fun we had.

Anyway, this was the song:

 

And somewhere into the second verse, all R could say was, quite the carbon footprint, driving all night to buy some shoes. And then he said as a by the way remark, life has caught up with us.

And so it has. We have failed. In our arrogance as a species. Today we have been told. But again we fail because seriously, do we actually read that stuff? Climate change a threat to security, food and humankind. The what? Humankind. That's us, remember?

Today I am scared. And furious. But mainly scared. I would dearly love to share in the enthusiasm of Rob Hopkins et al. but right now I agree with Paul Kingsnorth:

I don’t have any answers, if by answers we mean political systems, better machines, means of engineering some grand shift in consciousness. All I have is a personal conviction built on those feelings, those responses, that goes back to the moors of northern England and the rivers of southern Borneo—that something big is being missed. That we are both hollow men and stuffed men, and that we will keep stuffing ourselves until the food runs out, and if outside the dining room door we have made a wasteland and called it necessity, then at least we will know we were not to blame, because we are never to blame, because we are the humans.

the market in March

all the way from Spain

the first local harvest

last year's onions

all the way from Italy

the hard green ones

delicious wild garlic

the first asparagus of the year

tulips everywhere

depth over distance

There are only two days in the year that nothing can be done. One is called Yesterday and the other is called Tomorrow.

Dalai Lama

A short wintry interlude in this eternal spring.  Could I get a battery indicator, somewhere discretely on the inside of my lower left arm, so that I don't run myself against the walls the next time I think I should be superwoman? Gently flashing in soft pink of green when it's time for a recharge. I am apparently too stupid stubborn to recognise The Signs.

So yes, this winter has been exceptionally mild and yes, I loved that. Weather wise it has been easy. But other than that. Not so good. Be patient, I tell myself. Things will get better, this stubborn dry cough will ease eventually, your intestines will one day remember how to digest food in general, and all the other loose ends will fall into place, incl. that irritating lack of energy. And so on. I know, even my own eyes get this glazed look when my health is mentioned. 

So predictably repetitive.

But then again, what if this is the shape of things to come? Oh well. Let's not make a mess of it at least. Let's try.

Meanwhile, my inner hibernophile is getting ready for the day tomorrow, just mentally, mind you. Nothing green, no shamrocks or whatnots. I asked my personal Irish prince how to say happy st. patrick's day as gaeilge in Irish, and he said: couldn't give a fuck.

So there. At least I am ready.

This is the story behind the song.

4 am

You can never tell what it will be like. Could be the clearest moment, silent, calm, hopeful. Could be a dark hole to curl up in, lost and shaking like a hunted animal. That endless stretch of time just before dawn and the first birds. When everything is so much larger, echos inside my head, the drum of my heartbeat all the way to my fingertips.

Sometimes, too many thoughts, swirling and hammering inside my mind, are forcing me to still them with my breath. Other times, I am floating, thinking if this is it, so what.

And always. Daylight, slowly, miraculously.

Last night, my mind was writing a thank you letter to Colm Tóibin. I told him that I read almost everything he has written so far, from back in the days when he had a full head of hair to the first chapter of his latest book. I especially thanked him for writing this:

She ... made her tea as though it were an ordinary Monday and she could take her ease. She put less milk than usual into the scalding tea and made herself drink it, proving to herself that she could do anything now, face anything.

And  before I knew it, I told him about the silent darkness and how one day when I was feeling really low, my child called from the other side of the planet and put on her giraffe costume.

And how this made everything alright  again. Because.

)