31 December 2015

29 December 2015

Up on that hill again, we tried to count how often we have been here, a couple of hundred times maybe. Showing off the views to visitors from far away places sharing a late summer's evening al fresco dinner, escaping the heat of the valley, with an excited S after heavy snowfall, walking, climbing (it's a steep steep path) through the thick forest and down again along the old statues marking the stations of the cross or past the small vineyard, and there have been days when I was really quite dreadfully ill in mind and body when R drove me up here to look out across the west and find myself again in the order of all things.
Today, we visited the posh restaurant and spent a small fortune on two very small fancy cakes and coffee, seated between the Japanese and Russian tourists and their well behaved children.

There is a cold front rolling in from the west. Finally.

27 December 2015

So this is another xmas coming to an end. Unlike any of the other countries where we have experienced xmas throughout the years, this place has been at its usual sedate and silent best. The shops closed on Thursday at noon and will open again tomorrow morning, i.e. almost four days lost to consumerism and I pity the poor creatures who forgot to buy enough milk. 
We did fabulous things and until yesterday afternoon when I crashed quire spectacularly once we were back at the car park, my energy levels were amazing, like a reindeer's flying over the roofs.

I climbed a mountain hill (455m). OK, R pulled me up like a sack of coal but still, I got there just before sunset:

I cycled for hours (four, to be exact) through forests and splattering mud, puffing and singing and cursing, but generally elated:

And look, the days are getting longer again:
While now I am nursing various blisters, looking at a pile of mud coated jeans and boots and basically waiting for things to take care of it by themselves, there is much to look forward to, incl. a string of doctor's visits and well, mabthera, although I am trying not to think too much about it. Yet. Ok, I try not to.

But at the back of my throat are these thoughts, the images that won't go away, the dread, the fear, the conversations over a xmas dinner with friends back from the climate summit in Paris, about the inevitable loss of island states - people sent adrift, homeless and rootless - because we cannot get a grip on wasting fossil fuels, cannot accept our responsibilities.

I would like to have better ways to write about it, harsher, more urgent words, sending out signs and warnings and signals that everybody will understand until we realise what's at stake. Until we wake up from our pretend ignorance and the fake reassurance that there is nothing we can do apart from feeling sorry, oh how very sad and sorry. 
But really, who am I to wish for such power. I am just as careless and selfish as you all, as we all.

24 December 2015

Thus, from one extreme of human evolution to the other, there are no two kinds of wisdom. Therefore let us adopt as the principle of our life what has always been a principle of action and will always be so: to emerge from self, to give, freely and obligatory. We run no risk of disappointment.
Marcel Mauss

In the first days after we had moved into our little house in paradise, we were watched carefully from a distance. Slowly, people started to wave and smile. Children began to come one step closer when we turned our backs and a game of giggling and running ensued until finally, a very cheerful girl about the same age as S appeared at the back door and began interrogating us in the three languages most of the natives, we soon found out, could speak fluently: French, English, Creole. 
Soon, more children joined her bearing gifts. Huge golden papaya, baskets of pink mangoes, a large bouquet of hibiscus flowers, salted fish, coconuts freshly opened and straws inserted, limes of all shapes and colours, a kitten ... we tried to reciprocate in our clumsy European style: packets of biscuits, small toys, pens and colouring books - until a really small boy handed me an even smaller human baby, asleep in a tightly wrapped blanket. It was then that the adults stepped in, shy at first, but with firm handshakes and instructions on how to handle insects, bats and free range poultry and roaming dogs. The kitten and the baby were restored to their original owners but the endless chain of gifts never stopped.

21 December 2015

the real thing

Give Up Yer Aul Sins is based on the Academy Award nominated short film by Brown Bag Films. Based on original recordings of Dublin schoolrooms in the 1960s.

18 December 2015

We are on holidays, which implies that for the next 17 mornings I don't have to worry whether I am able to go to work or have to see the doctor for a sick cert. This is a very nice change of things and I'll probably be right as rain until the day I am due back.
Meanwhile, R is gardening, what with mild spring-like temps and stubbornly flowering roses and fuchsias and geraniums and more raspberries to pick. In December, one week before xmas. A miracle.
I tidied up most loose ends incl. the desk. I divided up my xmas bonus among the needy, wrote my six xmas cards, still pestering R to write his 25 (Irish families etc.). There will be dinners and bonfires, wrapped gifts for the under 18-year olds, but more or less, that's it for the festive season. I am so mean spirited, you have no idea.

14 December 2015

Right now, I don't have the nerves to read anything about the climate summit, the historic agreement, the big speeches, all that clapping and cheering. And the critics, of course, the sane cautious voices because who would believe anything anyway these days. In the end, we all ignored Rio, we laughed our way through the failure of Kyoto, so what else is new? A mad man in Russia, a mad man maybe about to be elected in the US, sure who cares. As long as our sweet little existence goes on as before.

Only, this beach here is almost gone. Literally. Today, now.

It is a special beach, I have at times been quite desperately homesick for it. But every rain shower, every storm surge (and storms have been increasing dramatically) means that more sand is swept away. Local people are blowing up the mountains inland, using the rocks to protect the beaches but it will not be enough. While coastal regions will be devastated all over the globe - and believe, they will be, everywhere, even in our own filthy rich and arrogant countries - island states will simply slip under the water. They will vanish. The homeland of entire nations will disappear, their schools and cemeteries, their churches, hospitals, harbours, playgrounds, markets, farms, restaurants, their wildlife, the magnificent birds, blossoms, trees, their beauty, all of their beauty. Their scents and music and all those wonderful calm Sunday afternoon picnics by the sea.

When we left paradise, I cried all the way to Mauritius (which was/is nothing in comparison, honestly and I tried to like it), I sat inside that sudden luxury of an Air France jumbo jet with my first fresh croissant and coffee with real (!) milk in three years served on a silver tray and all I could do was sob my heart out. At the time, we knew we could never afford to go back to our little shed of a house with the noisy bats and dogs and ants and giant centipedes. Money, jobs, family, and so on. Now we know that the loss is bigger, deeper and not just ours. Do we have any idea of the enormity of that loss?

13 December 2015

it's that kind of a day

rainy, gray, wet, not really focussed

09 December 2015

Some mornings, especially when it's sunny and clear and the garden shimmers in this glorious light that betrays its winter sleep, when the birds are busy messing in the compost bin and the radio with all the drama of our chaotic planet is off, I want to mess up my hair and scratch my face, tear my clothes and bang my shins against the stairs until bruises form, whatever it takes, anything, to show this beautiful calm world what it's like, to shove it in the faces of all the well wishers, to bare it all, my misery, my mean self centred lonely self pity, my losses, oh my endless losses, my purpose, my shiny future.
And so on.
Pathetic. I know.

The problem, often not discovered until late in life, is that when you look for things in life like love, meaning, motivation, it implies they are sitting behind a tree or under a rock. The most successful people in life recognize, that in life they create their own love, they manufacture their own meaning, they generate their own motivation. For me, I am driven by two main philosophies, know more today about the world than I knew yesterday. And lessen the suffering of others. You’d be surprised how far that gets you.
Neil deGrasse Tyson 

This quote is here to say, shame on you. Or something like it.

07 December 2015

Preparations for plan D (or was it plan C) are in full swing and not as straight forward as expected. After almost six years of running this small business enterprise of living with a chronic illness, I am still at the beginner's stage it seems. This morning, when I told one of the many perfectly polite but incompetent (believe me, I can judge that by now) creatures on the hotline of my health insurance that I want to order a personal assistant, she laughed her merry little laugh until I told her that I was serious. I listed all the paperwork, the travel arrangements, the referrals, the appointments with the experts, the endless lab tests, the parking for godssake, etc. 

Well, she told me to get a grip and try yoga. If I enrol in a class before the end of the year, I can apply for a 50% discount provided I fill in forms 17a and 412b which I can download and print out myself before I send them by post. Processing time is only 3-4 weeks, she promised.

I assured her that yoga was on my list of future treatments but that for now I was scheduled for my first day of chimeric monoclonal antibody infusion (a what? she asked) and that needed to figure out how to get to the clinic and back without driving a car or public transport as I have been told that I will be a) too nauseous and b) too sleepy for either and considering the distance . . . but she wouldn't hear of it. Yoga it is. 

Or should be. But I am not calm enough. I am all nerves and expectations and what ifs. There are people, experts, who think I have found gold and who believe that I will be health reincarnate with this treatment. Others are a bit more tsk tsk tsk plus the frown. I try not to expect anything - ha! This is of course a childish attitude. So no, all I want right now is healthy gums. That would be enough. No more aching bleeding gum tissue. That would be my idea of heaven right now.

03 December 2015

do not adjust your speakers, the first 60 seconds are almost silent

This is the Symphony of Sorrowful Songs. It touches the soul.

29 November 2015

you have no idea how cold it was

that and the fact that I packed it in after 10 km and slowly crawled back into the hotel with all the mod cons and the minibar and the terrific breakfast choices - and yet, I haven't felt more alive in weeks

23 November 2015

Beauty will save the world. It will start with loving someone.
The Turkish journalist, social and political activist Gürkan Özturan and the Irish poet Maria McManus recently translated the poem AdA by the Turkish writer Sait Faik Abasiyanik. This is one line from it. On the same day, the news came in of the bombing in Ankara.

21 November 2015

For My Daughter on Her Twenty-First 33rd Birthday

When they laid you in the crook
of my arms like a bouquet and I looked
into your eyes, dark bits of evening sky,
I thought, of course this is you,
like a person who has never seen the sea
can recognize it instantly.

They pulled you from me like a cork
and all the love flowed out. I adored you
with the squandering passion of spring
that shoots green from every pore.

You dug me out like a well. You lit
the deadwood of my heart. You pinned me
to the earth with the points of stars.

I was sure that kind of love would be
enough. I thought I was your mother.
How could I have known that over and over
you would crack the sky like lightning,
illuminating all my fears, my weaknesses, my sins.

Massive the burden this flesh
must learn to bear, like mules of love.

Ellen Bass

20 November 2015

My father calls early, he is upset. But I couldn't even tell him that and how I notice. I would not dare. Not my place in the careful arrangement of family hierarchies.
He would like to have a word with the French president. All this talk about wars. What does he know?! This is not war, this is threats, this is warmongering, this is dangerous. And so on.
But, I say. No but, he thunders back. Believe me, I know this.
But, I say, you were only 10 years old. Exactly, he replies.
But, I say, the French president has just announced that France will take on 30,000 Syrian refugees.
Not nearly enough, and it has nothing to do with it, don't change the subject, he shouts into my ear.
He has a point, my dad.

So we change the subject, slightly. There is always the weather to talk about, that and getting older.

Shortly after 9/11 and after another president had spoken about being at war, we were flying to Malaga. I had been warned about Malaga airport, only one toilet in the entire airport, downstairs, long queues, dirty. But of course now this was trivial information.
Waiting at the gate, the predictable crowd of off-season holiday tourists, mostly couples without kids, off to a bit of late summer in Andalusia.
And one single young man. With a beard, a black beard. His complexion and hair colour seemed darker by the minute, as did the expression on his face as he noticed being watched. Discretely so, but we all had a good look. All the time. There was so  much to scrutinise, his suit, the open-necked shirt, his slightly scruffy shoes, a small bag too big or maybe too small for what?, but most of all, his seemingly determined stares. And now he put on sunglasses!
Of course, we played it down, we joked and R told me to get a grip and on board we ordered red wine.
When he did not collect any luggage, we knew it! But then we walked out onto the shiny marble floors of the arrival hall, flooded in sunlight and laughter, and, well, there he was, surrounded by his family, a toddler pulling his leg, a baby in his arms, tears in his eyes. We sneaked past him like the idiots we truly were.

Why do I remember this now? Because I just read this here:

Gate A-4
Wandering around the Albuquerque Airport Terminal, after learning my flight had been delayed four hours, I heard an announcement: “If anyone in the vicinity of Gate A-4 understands any Arabic, please come to the gate immediately.” Well— one pauses these days. Gate A-4 was my own gate. I went there.
An older woman in full traditional Palestinian embroidered dress, just like my grandma wore, was crumpled to the floor, wailing. “Help,” said the flight agent. “Talk to her . What is her problem? We told her the flight was going to be late and she did this.”
I stooped to put my arm around the woman and spoke haltingly. “Shu-dow-a, shu-bid-uck, habibti? Stani schway, min fadlick, shu-bit-se-wee?” The minute she heard any words she knew, however poorly used, she stopped crying. She thought the flight had been cancelled entirely. She needed to be in El Peso for major medical treatment the next day. I said, “No, we’re fine, you’ll get there, just late, who is picking you up? Let’s call him.”
We called her son, I spoke with him in English. I told him I would stay with his mother till we got on the plane. She talked to him. Then we called her other sons just for the fun of it. Then we called my dad and he and she spoke for a while in Arabic and found out of course they had ten shared friends. Then I thought just for the heck of it why not call some Palestinian poets I know and let them chat with her? This all took up two hours.
She was laughing a lot by then. Telling about her life, patting my knee, answering questions. She had pulled a sack of homemade mamool cookies— little powdered sugar crumbly mounds stuffed with dates and nuts— from her bag and was offering them to all the women at the gate. To my amazement, not a single traveler declined one. It was like a sacrament. The traveler from Argentina, the mom from California, the lovely woman from Laredo— we were all covered with the same powdered sugar. And smiling. There is no better cookie.
Then the airline broke out free apple juice and two little girls from our flight ran around serving it and they were covered with powdered sugar too. And I noticed my new best friend— by now we were holding hands— had a potted plant poking out of her bag, some medicinal thing, with green furry leaves. Such an old country traveling tradition. Always carry a plant. Always stay rooted to somewhere.
And I looked around that gate of late and weary ones and thought, This is the world I want to live in. The shared world. Not a single person in that gate— once the crying of confusion stopped— seemed apprehensive about any other person. They took the cookies. I wanted to hug all those other women too.
This can still happen anywhere. Not everything is lost.

Naomi Shihab Nye

17 November 2015

15 November 2015

I am at a loss. We talk and reassure ourselves, we think we are all in a safe place. 
This religion of them and us, it's deep inside us all. Don't kid yourselves. But so is greed and fear and misery and self pity.  From time to time, we must reach there and touch these nasty spots deep inside our souls and admit it, and while we're at it, our anger and our helplessness too.
What do I know?! Fear is not the answer, hate is not the answer. But what is? Love sounds too sticky right now. I am not sure I can trust love. Or people or myself. I watched a documentary about the new caliphate or whatever in London and when this gentle old man who looked a bit like the convert Cat Stevens said, the world must free itself from the demons of liberty and democracy, I got the shivers.
And yet. 
My comfortable wealthy world, the one I move in, has always been an open world, diverse, messy, chaotic, welcoming and off putting, imperfect, always trying, growing, nourishing and struggling, but most of all, open, wide wide open. The world that I dream of as a near ideal world doesn't look much different and I want to believe that I am not alone with this dream, that as diverse as we are, we can remain sane and human and practical and helpful and whatever it takes to look after each other and our planet.

Meanwhile, the river has reached a new record low. This is not good. We need constant rain from now until the new year to fill it to a seasonally acceptable level.

13 November 2015

happy 70th birthday Neil Young

It seems I have been humming and singing this song under my breath all my life. Long before I could understand the lyrics.

Right now, I remember singing it at the top of my voice while painting the walls of the former industrial school in Letterfrack in bright purples and reds. At the time, I didn't know a thing about the horrible history of that building. I was a clueless student of theories and ideals.

But I was happy, really happy. I had just fallen in love, I had met wonderful people and together we set out to make this place habitable again. We had grand ideas involving woodworkers, weavers, potters, children, gardens. You know, the whole shebang.

Today, my paintwork is long gone. Instead, it has become "a place of excellence".
I am still in love. 

12 November 2015

Rather than letting our negativity get the better of us, we could acknowledge that right now we feel like a piece of shit and not be squeamish about taking a good look. That’s the compassionate thing to do. That’s the brave thing to do. We can’t just jump over ourselves as if we were not there. 

Pema Chödrön

Let's pretend I read this quote for inspiration and relief. Let's pretend I am brave and can look my negativity in the eye and give out a tiny non-squeamish hiss of recognition. While I wouldn't have the energy to jump for whatever reason, I somehow managed to go to work for three days in a row. I am not sure about tomorrow. And every evening when I get home in this exhausted and foul mood I am starting to contemplate a life without the job. (Whereas every morning I think it's not really that bad.) 
But right now, I am ticking off days waiting for my body to pack it in once again. One way or the other. Yet maybe maybe maybe, plan C or D or whichever is about to begin, will actually do the trick. Only, I am waiting for my lovely immunologist to call me with the war plan and the dates and then I have to figure out a way to get there and back. I have been given a booklet with information on side effects and what to expect and how to react. I've attempted to  read it a couple of times but found the narrative difficult to follow. Every page is illustrated with pictures of extremely healthy looking people and I get distracted checking their outfits and their suntans. 
Matters did not improve when I went from Downton Abbey straight into The Leftovers. Talk about negativity. With a capital N. Like November.

This here was our back yard in paradise.

11 November 2015

Being found is overrated. Being a little lost is good, because it keeps you alert, keeps you looking around. It keeps you scanning the horizons about to find your bearings, and you are not sleepwalking through the world.

 Paul Salopek

10 November 2015

My child lives 18 622 km away from me. Which is 11 571 miles. Which is quite a distance. Her garden is doing well, it's spring.  We are a living geography lesson.

09 November 2015

Today I pretended to be all healthy and strong and selfish and nasty. It was fun for a while. I watched Downton Abbey for breakfast, cycled the 400 m to the nearest optician and got my eyes tested for my new special specs for computer screen work. When he totalled up the costs I almost fainted but managed to pretend that it was no big deal and ordered them anyway. We could fly for a short holiday to Sicily for that money, off season and self catering, but still. I should probably carry them around in a gold plated case and lock them away safely every night. Instead of losing or, worse/better, breaking them, whichever comes first.
Back home, I sat in the sun. Outside! Together with the handful of leaves left on the hedge and the last three flowering plants, I pretended it was May instead of November.
After lunch I went to another doctor's appointment, I am so good at this. This was with the gastroenterologist who had made me drink the five liters of moviprep last year. After two hours of sitting in his crowded waiting room I got up, said good bye and walked out. Life is too short etc.
When I got home, I remembered that I am actually not healthy or strong, just selfish and nasty.

08 November 2015

People are frightened of themselves. It’s like Freud saying that the best thing is to have no sensation at all, as if we’re supposed to live painlessly and unconsciously in the world. I have a much different view. The ancients are right: the dear old human experience is a singular, difficult, shadowed, brilliant experience that does not resolve into being comfortable in the world. The valley of the shadow is part of that, and you are depriving yourself if you do not experience what humankind has experienced, including doubt and sorrow. We experience pain and difficulty as failure instead of saying, I will pass through this, everyone I have ever admired has passed through this, music has come out of this, literature has come out of it. We should think of our humanity as a privilege.

Marilynne Robinson

07 November 2015

  1990 in paradise

Looking back over the last fabulous year I come to the conclusion that for most of the time I have been blissfully ignorant and over the top full of myself. While things were getting progressively worse health wise. I forget how often I have been out sick this year. I guess more often than at work.
Theory is a wonderful playground because in theory I am such a competent and confident person, calm and skilled and experienced. I can handle it, bring it on.
I can solve problems, I don't lose my cool, I am organised. Seriously.
As long as I can pick the problems myself. And get a good night's sleep once I am done.

I am kidding. This has gone way beyond a good night's sleep. (I still love that, though.) 
But there is this thing called health, or rather: ill-health. And I am floored. This is when my shiny theory comes crashing around me. It seems I have now reached a stage in this illness where I am all in it. It's all over me, inside and out. The novelty, the innocence , the disbelief is gone. And some of the fear, most of the panic, almost all of it. Gone. (I say that now.)

Right now, I am in a strange place. It's a lonely place. But not in a bad way. If I wanted to I could write a long list of my current unpleasant symptoms but this has become so boring and really, this is not about my weakness, my vulnerability or exhaustion. All that tedious stuff. Believe me, I know how tempting it is to imagine that a body can be repaired like a busted car engine, handing it over to the skilled mechanics and wait it out.
Those long hours of guess work and doubt. So what if autoimmune disease means that the organism is not allowing itself the conditions of its own existence. Do I care? I have no idea. I will never know. These are just words. My ill health is not a problem that will be solved, like a cryptic crossword puzzle. I have to put that behind me and move the fuck on.

All I know right now, seem to know right now, is that nothing good, nothing helpful comes from these thoughts. That instead, I need to concentrate on the mundane, the small daily tasks and rituals, whether they are enjoyable or awful, it doesn't matter. Come down to earth, cut the distractions and have it all. I mean it. 

04 November 2015

Sometimes we’re going to find ourselves completely caught up in a drama. We’re going to be just as angry as if someone had just walked into the room and slapped us in the face. Then it might occur to us: “Wait a minute—what’s going on here?” We look into it and are able to see that, out of nowhere, we feel that we have lost something or been insulted. Where this thought came from we don’t know, but here we are, hooked again by the eight worldly dharmas. Right then, we can feel that energy, do our best to let the thoughts dissolve, and give ourselves a break. Beyond all that fuss and bother is a big sky. Right there in the middle of the tempest, we can drop it and relax. 
Pema Chödrön

Clear days, clear nights, frost maybe. We moved the plumeria inside into the front room where it promptly dropped all its leaves. R is losing patience with it and threatens to give it away if there are still no blossoms by next summer. I prefer to call it frangipani, sounds so much more tropical. Once upon a time, when we lived in paradise, I carelessly stepped on frangipani petals on my way to work every morning. And a visit from the local tortoise was just a nuisance - because he would regularly get stuck trying to push into the back door.

For a long time I would play this make believe game, where you have one wish (one really selfish wish, not a world peace or end to hunger wish), and I imagined that I wanted us to be back there, by our kitchen door, sweeping the mango leaves and listening to the fruit bats screeching and the dogs barking and the kids everywhere. But not any more.

Now my one selfish wish is a different one. I have become more careful - but equally unrealistic. Now, I avoid wasting my wish on being healthy again (but oh believe me, I want it so badly). Instead, my one selfish unrealistic careful wish is for a life without doctor's appoinments. I would settle for that. Maybe.

02 November 2015


What you don't see is that I am wearing mittens, and that I can lean into a freezing wind, also that the river is very low after weeks of drought. What you don't hear is the church bells from across the river at noon, very noisy ravens above me and kids playing in the school yard to the right.

28 October 2015

The full moon brought the strong easterly wind that will take down the colourful leaves and then we will enter that long period of grey and cold and damp and dark. Five months.

Silent slow mornings, carefully portioning my energy, so much I want to do, need to do, while the bed with its warm quilted cover beckons.

Manuscripts waiting for my attention on my desk, reports on kidney transplant failure rates in children, novel molecular genetic testing for very early diagnosis of dreadful diseases, starvation in Sudan, rebuilding lives in past-earthquake Mustang (NW Nepal). Have a guess which of these comes with a paycheque. Some days, the world is too big and my energy is too low.

I was reading recently how empathy research has shown that we are much more connected to others than we consciously are aware of. Not in a sense that we are all brothers and sisters, all that we-are-family crap, but on another level outside our control. And of course being the clever animals that we are, we have found ways to circumvent this. Like crawling back under my warm quilted bed cover.

Empathy isn’t just remembering to say that must really be hard—it’s figuring out how to bring difficulty into the light so it can be seen at all. Empathy isn’t just listening, it’s asking the questions whose answers need to be listened to. Empathy requires inquiry as much as imagination. Empathy requires knowing you know nothing. Empathy means acknowledging a horizon of context that extends perpetually beyond what you can see.

Leslie Jamison

27 October 2015

Moments of fierce jealousy. I will admit as much.  Missing things here and there.

A long walk in the hills, a couple of hours on a Sunday, the autumn colours and a scenic spot for a packed lunch and a flask of tea to share.

Cycling along a river, from the source to the mouth, watching it swell and expand for days, a week, as long as it takes.

Crowded rooms, noisy laughter, live music, dancing, all that careless high jinx.

And food. Recipes have become texts in foreign languages too complicated to digest.

But basically, I can hold it together and get over it. Still, sentences form that begin with "I'll never again will..." while the small voice inside my head is whimpering "oh please, do shut up" and then the overbearing voice of reason sniggers "you call that a problem?"

25 October 2015

I was five years old when I saw the sea for the first time and it would be another five years before I actually stepped into it. Growing up in a flat country with sandy soil and endless boring pine forest plantations, carp ponds and small streams, sensing that blue line of the vast horizon was physically overwhelming. But on that first day, it was also frightening as my mother nervously stood watch over me and my little brother. 

Together with my grandparents, we had come on a day trip and were totally unprepared. I remember standing there between the crowds, in my Sunday best, eventually being allowed to take off my shoes and socks, tucking my pleated skirt into my knickers, holding on to a hastily purchased set of plastic bucket and spade until I finally dared to copy the crowds of kids around me and started to dig. But I did not touch the water as the waves seemed like fierce animals trying to snatch me. It was the most unusual day, everything strange and new. On the way back, I fell asleep on my grandmother's lap in the back of the car and was woken when - long after dark - we stopped at a motorway restaurant where I had my first strange taste of pommes frites.

Five years later, my parents having climbed up the social ladder, we arrived for our first (of many) summer holidays in a thatched beach house on the Danish North Sea coast. At the end of the road where the sand began, we all got out of the car and climbed up on the dune and it was like a magic door had opened and I ran and ran and ran towards the surf. 

We all loved and hated these long summer months by the sea, my parents fighting, my mother driving off in a huff for a day, sometimes even two, the banging of car doors and the shouting of threats, my father's strict schedule of daily card game tournaments and chess competitions, but also sunburns, racing down the dunes for a morning swim, grilling fish on the beach in the evenings, carefully doled out portions of vanilla brittle ice cream and noisy games of catch long after dark.

It was a time when we all had so many dreams, of a happy marriage, of success, of health, of living by the sea forever, of being a family. 

22 October 2015

Illness is the night side of life, a more onerous citizenship. Everyone who is born holds dual citizenship, in the kingdom of the well and in the kingdom of the sick. Although we all prefer to use the good passport, sooner or later each of us is obliged, at least for a spell, to identify ourselves as citizens of that other place.

Susan Sontag

20 October 2015

Today I had The Talk with my lovely immunologist and plan C (or was it plan D? whatever) is about to begin. Things can only get better. But first, a multitude of tests and a couple vaccinations to refresh. Followed by waiting and pretending, of course. After that, let's light the candles and keep breathing. But first things first. Which means, phonecalls, more waiting and so on.

18 October 2015

17 October 2015

atrial fibrillation

My secret belief - the innermost credo by which I live - is that although life is loathsomely ugly and people are often terribly vile and cruel and base, nevertheless there is something at the back of it all, which if only I were great enough to understand would make everything, everything indescribably beautiful.

Last Monday I woke in the early hours with a feeling of urgency and dread like never before. I got up and as I walked to the window to find the moon I passed out. It was all very gentle, my legs slowly bending and folding onto the soft carpet. Almost elegant. For a brief moment only. I pulled myself up and that is when my heart started to race and skip and stop and start. These jolly occasional jumps have been scrutinised extensively in recent years. Extra systolic beats are nothing to get worked up about, they told me. Only, this was slightly massively more than an extra beat here and there. The regular and boring thud thud thud of my heart had turned into a wild jig and while I was lying there trying to decipher this new rhythm, which wasn't a rhythm at all, I felt quite curious, calm even. 
Anyway, to cut a tedious story short, I eventually had the unexpected  pleasure of the second ambulance ride of my life. I got the full treatment, sirens and all, and I was actually laughing, it was so exhilarating with trees and houses rushing by. Nothing like the first one three weeks ago when I was puking all the way. Hell no, this was great fun.
It was all very picture book really, like on tv, the monitors with the colourful curves and bleeps, the tubes and ports and needles and wonderful calm skilled people coming and going with reassuringly orchestrated regularity administering potions and performing rituals and - oh yes! - that weird gown. I really regret that I left it behind.
Sometime during the following night, my heart had enough of it and jumped back into its boring regular groove. And as it did so, all the monitors started to bleep and shout and flash and the night nurses came running and cheering and clapping and I called home and then took this picture of the heavens above me.

16 October 2015

There are days - and nights - when you ask yourself all sorts of questions. And there is a profound difference between the daytime and the nighttime questions. In my case, I usually forget the nighttime ones, even or especially when I was able to answer them to my satisfaction. I go back to sleep having solved the riddle's of humanity and wake up in the morning to the same seemingly insurmountable obstacles to peace of mind.

You ask yourself, how did I get here? Is this still me? Is it happening now? Cells dying and new cells growing, nerve impulses reaching my brain and you remember reading about the way our brain corrects what is actually happening with imprints from our memory. And you ask yourself, is this happening now, all of it? Or is this just the product of layered memories? Does it matter?

Your mind is like water, a pond, most of it covered in duckweed. Sticky and sluggish. And yet, sometimes, a spark, a moment when you think, this is real. You are alive. This is your breath, these are your fingers touching your face. 

And then for a short moment, much too short really, you recognise that all this doesn't matter at all, that you are as unimportant as the duckweed or the falling leaves. 

13 October 2015

I used to joke that I'll try everything once. Haha. Very funny. The joke doesn't work when doing unusual things twice, even with sirens and high speed as an extra.

Stil baffled I pretend to observe this fake reality show from behind  a one-way mirror. The night noises of an intensive care ward remind me of my vagabond days trying to catch some sleep while waiting for a delayed flight in a crowded departure lounge in a foreign place.

During the day I carefully keep my distances from the secret Information of sideway glances and whispered exchanges. If you have something to tell me, do it. If not , don't expect me to read between the lines and no, I will not fill the gaps. I will be the prfect patient for as long as possible. Polite and ignorant and not at all interested in anything but that potted plant at the end of the hallway.

08 October 2015

 Sheep's Head peninsula Co. Cork, Ireland (July 1983)

My world is no longer turning. That's actually quite a beautiful improvement. While the ground beneath my feet remains unsteady, I no longer need to hold onto walls when I walk and the staircase has become once again just a means to move from one floor to the other. In fact, I can look into the rainy garden and notice the wind in the wisteria and tell myself that this is just wind and not a mean trick of my damaged balance organs. But this is all surprisingly tiring. As I walk past the big mirror of my great-grandmother's wardrobe in our bedroom I stop for a moment to take a look. You are not well, I tell the person staring at me, don't fool yourself, you are sick. 

Last night in my dream I explained to my GP that I wanted to sleep for about three months, and she wrote an elaborate prescription on thick cream paper and handed it to me but I was too tired to take it and instead just curled up on the floor in front of her desk. I must have fallen asleep because I don't remember what happened next.

When I blow my nose in the morning, an impressive amount of blood appears probably from deep in my sinuses and inside my mouth, there is a spectacular number of open sores. 
The blessings of cortisone. Possibly. Hopefully.

Of course, this is all old hat.
Only this time - oh, I have no idea and I try not to speculate. Obviously, I have been pretty ill and have gotten better before and there is no reason to think that it won't happen again. Eventually. And as it stands, no vital organ damage looming on the horizon, just a somewhat major spot of bother in the ENT department and all sorts of accompanying odds and ends incl. exhaustion and the usual stuff like gastritis and so on. (But try and tell this to the scared wimp in my bed at 3 am.)

To drown out the double bass players in my ears I have been listening to some very interesting and downright lovely podcasts. Earlier today, I was back on the sheep's head peninsula, which has been one of our favourite places for many years, listening to gorgeous sing song West Cork accents describing the time in 1979 when the writer JG Farrell lived and died there. 
In fact, I just realised that on the day he died so dramatically, on Saturday August 11, 1979, we were travelling (on foot, hitch hiking and by boat) about 350 km north along the same coast, eventually reaching Clare Island where we struggled to pitch a tent in the evening, there was fierce wind and rain. I had met R seven days earlier.

Anyway, it's a sad story (the one about JG Farrell, not the one about R and me) but worth listening to. (Here is the link. And here another account of events.)

Sheep's Head 1983

06 October 2015

Tough work, let me tell you. The recovery of my vestibular function.  It's taking its sweet time compared to previous experiences but the expert yesterday cautioned me to be patient because it is exhausting stuff.  Think massive concussion on a sailing boat at high seas and you get an idea. It is also noisy, there is a quartett of double bass players inside my ears.
Apparently, we are talking weeks - at least.
And yet, he did say recovery. Magical word.

So, here I am, reduced, battling the blues (sounds better than it feels) and generally trying not to drown in self pity.

Still, I've been here before I know but honestly, that doesn't help right now.
 I will eventually get back into some form of a daily pattern, rediscovering the separating line between day and night.

Meanwhile, distraction is the key. Tracing humanity in many forms and shapes.
Go if you have the time and read the here and fall on your knees:  http://www.humansofnewyork.com/

And then, have a look here:

The last time I was in London, one of these tower blocks was on fire. Just as we walked through the Columbia Road flower market where we got the bronze fennel that has spread all over the garden this summer. It was very dramatic but nobody got seriously hurt.

05 October 2015

Some days are better than others. What am I saying? Some days are simply beautiful. I know what I am talking about, I am married to a gardener.

However, today is not one of them, despite the elegant long shadows on the lawn, the clear October air with flickering clouds of tiny swarming insects, ripe figs and a hedge full of blackberries.

While the gardener is clearing and digging, I update my list of medications and symptoms as required. I make a list of the latest publications on autoimmune inner ear diseases and multiorgan involvement of c-ANCA antibodies hoping that I will find the courage and self confidence to hand these to the expert I am due to meet tomorrow.

Last night while I was waiting for the dramamine to kick in and relieve me from drowning at high sea, with R sitting beside me working on the coming week's teaching plan, I closed my eyes and climbed Mount Eagle on the western shore of the Dingle peninsula in Co. Kerry, Ireland on that balmy summer's day thirty years ago. The evening air was simply gorgeous and my arms and neck were still hot from the afternoon spent on a sunny beach. 
We had decided to come here on the spur of the moment, still in our summer clothes with a woolly sweater for later tied around our hips and hastily put on walking boots. My pink sleeveless sundress slightly billowing in the breeze I tried to keep up with R who was striding up ahead of me, steady as ever. And as always, he had found the best path up the rocky slopes just by looking towards the sun. Up on the top, sitting in the breeze, we looked out over the silent Atlantic and all was well with the world and our lives and our totally uncertain future.
Without that man gently coaxing me to climb so many seemingly impossible paths I would have missed the most splendid views. 

01 October 2015

an exercise in futility

I never had much tolerance for moaners, people who throw their symptoms around like pearls and who seemingly spend most of their time concentrating on how miserable and unfair life is.

I still don't and I try hard to not do this in real life. 

In real life. 
In real life, I never lose my cool. I share jokes with the experts about the silly bruises on my body from the injections, the way my hair blocks the shower these days. I pretend that I am pragmatic, that I understand the science behind it all, the way the drugs interfere and reshuffle what my body has messed up. I pretend that I know about the importance of sleep and rest and keeping calm.  I play the games of relaxation and meditation and mindfulness and sometimes I even start to believe in their powers. I walk - carefully and slowly - through the garden making an effort to observe and delight and Be Here Now. I try hard to let go and allow my body and my mind to fuse into a meaningful blissful presence regardless of whatever. To admire the dynamics of my atoms swirling according to some deeper cosmic order/chaos.  (I know. Bear with me.)

But blogging? That's for letting it all hang out.
That's where I am the miserable cowering animal. 
Where I am mad and furious - energy permitting - at the unfairness of it all. 
Where I admit that I pace the garden like a caged animal ready to rip and tear. 
Where I roar that I am done with chronic illness, done with patience, with acceptance and all that crap. 

After a while even that becomes tedious. And sometimes, somewhere between and below all of that, the moaning and the whimpering and the distancing and the expert talk, I get a tiny glimpse of something pure and whole and complete and I try to touch it but then it's gone.