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.