23 May 2015

Ireland gay marriage referendum result: Yes vote certain

This is about decency, generosity, love and getting rid of a lot of negative morals, it's about moving out from the shadow of an oppressive church or to quote the Irish minister for equality:
Ireland hasn't just said yes, Ireland has said Fuck Yeaahhh!
This is also in memory of Marcus who in 1985 could no longer face the bullying and abuse from family and colleagues, who slipped out of our reach one tearful night to jump into the river. His body was found a week later.

some background here

22 May 2015

This is my 1000th post. Really? I find it hard to believe but I am not going to count.
All I can say or rather, write is that I love it. No idea where I would be without it and I don't care, this is good.
Thank you for reading and you have no idea, none at all, how I enjoy your comments!

18 May 2015

Hurrah, I crawled to work and made it home in one piece, feeling like a limp something or other, licking my wounds and coughing from a tight chest - that and my croaky voice, oh very dramatic! 
My colleagues full of sighs and tutt tutting queued up to offer to take a blood sample (the joys of working with medical scientists) and so I agreed and well, lots of not so normal parameters, aka a lab report from a tiny hell - hand me the smelling salts, quick. 
Yes, I know sort of hope this will could pass, but still, now I am scared of the things that will come and get me in my sleep.
For crying out loud, I am such a wimp.

17 May 2015

Beautiful May, garden full of blossoms, a bowl of fresh strawberries in my kitchen, green asparagus waiting for dinner, the first juicy apricots . . .
The news full of horror, devastation, cruelty, suffering.

13 May 2015


The little lane leading to the secret entrance of the garden on Monday morning after coming back from the doctor, who told me to stay home for another week. I cycled because it's only a short distance. I didn't tell her, just in case. It was the highlight of my day, the short cycle.
Wisteria above the bicycle shelter at the bottom of the garden. There are worse places to recuperate - or to lock up a bicycle.

12 May 2015

I am asking for quite a stretch in imagination and compassion, but isn't that what being alive is all about?

This morning I was sitting in my kitchen with my head under a towel, breathing in the supposedly healing vapours of thyme and sage, listening to online radio. As my luck would have it I had tuned into one of my favourite Irish stations just as the news came on. Or rather: nuacht, that is news as gaeilge/in Irish. One of the charming little rituals that probably mean very little to most and an awful lot so some people in Ireland. Like the Angelus at six pm, still live on radio every evening.

I can understand three words in Irish: agus (and), buíochas (thank you) and grá (love). When I listen to someone speaking in Irish it's all mystery to me, like an ancient chant.
And then suddenly I heard the word Kathmandu. Another massive earthquake. Oh dear, oh saints in heavens and people on this planet.
Of course, we will all and everyone try and do what we can. Surely. It will involve money. The media will supply us with enough horrific evidence to imagine a fraction of what is happening.

And here comes the stretching because I am now jumping from Nepal to the Indian Ocean. To a place hardly anybody knows. A most beautiful place, paradise. I can honestly call it that because I have lived in a very similar place for a couple of years not too far from there. It has been the best of times for me and for my man and our child. The very best of times. And although we have all had many more best of times since, 25 years later we are all three still homesick for it. 
Which is why I can feel some of the sadness (sagren in Chagossian Creole) you can see in these faces if you please take the short time to watch:

Let Us Return - The Story of the Chagos Islanders - 2015 from Evoque on Vimeo.

And while I have been working too long for human rights organisations to believe that online petitions have any meaningful effect at all, I nevertheless ask you to sign here anyway and hope for a miracle. There is no doubt in my mind that these people need to return and that they can have a happy life there. Not a single doubt.
If you have a bit more time, also watch this video.


09 May 2015

Impatiently, far too impatiently waiting for this whatshallwecallit to be over, an infection, surely,  just a virus, no doubt. Ever heard of sinusitis, that must be it. Collecting my wits in between bouts of vertigo and with a booming head under a towel, inhaling tea made from fresh sage and thyme. Pretending that I've never heard of the ENT symptoms of my disease.  There, I said, my disease. As if I owned it. But at this stage, it doesn't really matter. Believe me, it's not a thing about ownership or - worse - owning up to anything. And just to clarify, I am not battling or fighting here. I have rejected this terminology in connection with illness long before I got involved.
I am not even accepting. There is nothing to accept. (Except for the blessings of this country's "socialist" health system. I accept them gratefully and with a continuous sense of wonder and entitlement.)
In conclusion: Shit happened, I am dealing with it. Some days better, other days, not too well. 
Mostly, I am juggling between distraction and panic, occasionally I glimpse enlightenment. 
I love my life too much to whine - generally speaking.

Theoretically, we are all good here, while in reality, uuugh. Tedious.

05 May 2015

. . . our families contain everything and, late at night, everything makes sense. We pity our mothers, what they had to put up with in bed or in the kitchen, and we hate them or we worship them, but we always cry for them.
Anne Enright, The Gathering 

This being memorial month, 70 years since the end of WW2, we get to watch special features on all channels, in all shapes and forms from the sublime to the ridiculous, every morning in the papers another picture of the president or the chancellor speaking to survivors at various memorial sites (former concentration camps). I watched a couple of documentaries on children and war and I will never even get close to understand what may have been my mother's experience. Frankly, I have no idea. Only snippets, whispered during coffee and cake afternoons with relatives while I sat on someone's lap half asleep. I see her trembling outside the back door, trying to light a cigarette, gagging from the smell of fried meat. I hear her walking through the house at night, crying and muttering, packing a bag of essentials "in case". The larder always full of food, nothing ever thrown away, left-over bread soup. So many mornings with her face hiding behind sunglasses. The sound of a fire siren would send her running for her youngest child, both of them sheltering in the boiler room.
There were tall stories, too. I used to be disgusted about this when I got older, when relatives pointed out that she could not have been there or there at the time or whatever. Well, she was not a good a mother and for me, that was further proof of her failure. But what do I know. What do I know about forgetting and remembering and loss and trauma. For quite some time, she tried to cope, I know that. And yet, with all her arrogance and her high morals and superiority complexes, she was cowering, a frightened animal inside her Chanel suits and fur coats.

Here she is sometime in the early 1950s, at university. I like to think she was happy then. For a while.

03 May 2015

I can't write about the health stuff because last time, when I mentioned the lung diagnosis, my child got mad at me for blogging before telling her. And I understand.
Anyway, I have now reached a far superior level in this game, the one where I juggle symptoms around until it feels as if I can manage a semblance of normal life, ie being a gainfully employed woman with a bicycle. For a while at least. The default settings of this level no longer include being healthy. But this level is so advanced I have already forgotten what that could have meant. Ever.

And on Wed I am going to see my lovely immunologist. But shhh.

02 May 2015

Consider migratory birds, the ones that travel in V-shaped flocks enormous distances through strong air currents. 
Consider the V-shape: it means that one bird is in front battling it out, while the others float in his slipstream. 
How do they get the volunteers to fly in front?  Is it a clan thing, the alpha bird in front? This would make sense from an evolutionary standpoint. 
But apparently that's not the case.

The stuff you learn when you read the newspapers on a Saturday morning. Does it matter? 

Anyway. It turns out that it does, at least to a group of scientists who followed 14 juvenile bald ibises fitted with GPS gadgets on one of their long journeys. Some of the birds were siblings, but most were not related. Flying in formation they changed their positions cooperatively, taking turns so that all the birds got a chance to surf and all did hard work at the front, switching positions automatically and continuously, so quickly that it would be hard to see with the naked eye.   

Ok, it's only birds. But what if we were to follow their example? To do something without calculating the return? To give and take so quickly that we wouldn't even notice and probably not even remember? A scenario where self-interest and helpfulness are not seen as opposites but as mutually dependent. Oh my.

27 April 2015

The guy on CNN just said that the people in Kathmandu were odd in their Buddha-like fatalistic stupor, burning their dead and not expecting much.
I shouted it up the stairs to R who is listening to Jefferson Airplane while reading through his student's reports on their charity walk whereby a bunch of well-off teenagers walked for an hour and a half along the river and another hour and a half back to simulate walking to schools somewhere in Southern Africa. Don't get me wrong, they may all have figured out something about the world. Teenagers are admirably smart.

In 1994, a young man named Shrestha came to stay with us for a week or two. A law student from Nepal attending a youth conference here. His first time abroad. He stayed in S's room and slept in her bunk bed with the toys underneath and the raspberry coloured wallpaper. When we sat down for our first meal together he told us about home. He was studying in Kathmandu and his family lived about three days away. Three days on a train, a bus, by car? we asked. No, first on a bus for a day, then walking for two more days. He talked about his family and their lives, about earning a bit of money as trekking guide and his childhood and plans for the future and much later, before we all went to sleep, he asked us about the different gadgets in the bathroom and the kitchen. I come from a different planet, he said with a laugh when he tried out the blender and during the night I heard him getting up and checking it again.

A few days later I brought him to work with me and while we were waiting at a pedestrian crossing, two German women ran up calling his name and hugging him. They had been to Nepal trekking the year before and of all the places and people, he and his brother had been their guides. We laughed a lot that day. See, I told him, we are all living on the same planet.

We lost touch. This was a long time before the internet and fb etc. You know how many Shresthas there are in Nepal?

But we are on the same planet and tonight I hope he and his family are ok.

26 April 2015

Looks like this is becoming an annual event, another double vertigo attack with the odd fever spike, shivers and the expected sea sickness. And sweet heavens, the nausea. Wow.

Almost to the day a year since the last big one. I feel so very sorry for myself. Very sorry. And I would bang my head against the wall if only that would help. Instead, I stagger around the house and  that heavenly garden, lilacs, tulips, wisteria, apple blossoms. No cats. My first spring without cats.

At least now I can leaf through last year's diary and count the days I was sick with it last year (16 days) and also that I waited almost a week before I went for the ENT appointment after the cortisone spike brought feck all relief. This time, I am not even starting on that stuff. Well, not yet. This time round, I'll do the ENT before the immunologist. Variety is the spice of life they say.

Does it help to realise that there are worse things happening in the world? I wish it would.
I wish I could see how insignificant my little portion of misery is in comparison.  I fail.

19 April 2015

They are men and women like us – our brothers - and sisters (my addition) - seeking a better life, starving, persecuted, wounded, exploited, victims of war.

I never thought I would quote the pope of all people but desperate news ask for desperate measures.
As I was sleeping in the early hours of this morning, as the first chords of a magnificent dawn chorus was just beginning, as the lilac prepared to open its first blossoms of the year, 700 people drowned in the Mediterranean Sea. They were adrift on an overcrowded vessel few would actually classify as such, never mind declare seaworthy, and tried to alert the attention of a real ship nearby. Seemingly, this caused the vessel to capsize and the latest news are that at least 700 bodies are still in the water.

These are the people we are allowing to die in the Mediterranean: teenage orphans of several (!) civil wars, pregnant women without family, young and old, labourers and academics, sons and daughters.
Nobody - and I dare you - is making this journey just for fun, to steal our wealth or to cheat on welfare systems.
Forget the fact that this society wouldn’t work without migrants, that nobody else will pick your vegetables and make your latte and get up at 4am to clean your office. Forget the massive tax contribution made by migrants to the Treasury. This is not about economics. Far too often, even the positive takes on migration are driven by numbers and finance, by “What can they do for us?”. This is about two things: compassion and responsibility.
There are half a million people in Libya waiting to make the crossing. Libya is chaos. Libya is at war. Syria is at war. Sudan is at war. Eritrea is a cruel dictatorship. And so on. I know, African/Middle Eastern problems etc. but wait and think for a minute, it's not that simple.

Not all migration is caused by the west, of course. But let’s have a real conversation about the part that is. Let’s have a real conversation about our ageing demographic and the massive skills shortage here, what it means for overstretched public services if we let migrants in (we’d need to raise money to meet increased demand, and the clearest and fairest way is a rise in taxes on the rich), the ethics of taking the cream of the crop from poor countries. Migration is a complex subject.

We may discuss this another time. Meanwhile, what are going to do?
... let’s not be cowards and pretend the migrants will stop coming. Because they won’t. This will never stop.

Let's remember this:

We can recognise the human right to migration. We can recognise that we are ourselves, all of us, doubly migrants. We are migrants historically: our ancestors came from somewhere else, and originated, long ago, in the same spot in Africa. And we are migrants personally: life is the experience of moving through time, of abandoning each present moment for the next, of temporal migration.


Today was sunny and warm. Not hot yet, just mild.
Today I got mad with R because he took the car to get six bottles of wine from the shop which is about 2 km away. On a sunny day with three shipshape bicycles incl. panniers and baskets just waiting to be used.
Then I thought it must be a man thing and I apologised.
But before that we shared a grumpy lunch. Cheese on toast and coffee.
Today, I sat in the sun and read the paper while he worked in the garden. On and on. So I got up and washed the greenhouse. Inside and out, scrubbing and rinsing.
By the time I was done, he was still working.
When the sun had moved around the house and I packed up to go inside, he started to cut the lawn.
Then he cooked dinner. Fish curry. It was delicious.
Tonight, I started on our tax returns and when I went to get a folder from his study, he was asleep at his desk.
Tomorrow I will bake him a rhubarb crumble. Fresh rhubarb from the garden.

This and always.

13 April 2015

Thank you, Sheila Kitzinger

She was an inspiration. Thanks to her, I looked forward to labour, immensely, yes I did. I felt confident and strong.  My English was still pretty poor at the time when I discovered her name and her books and pamphlets, by chance, out there in the deepest catholic Dublin of the early 1980s, because Kitzingen is a small Franconian town not too far from where I grew up.

I met her in 1984 queueing at the entrance to the First International Feminist Bookfair in London, a big crowd of young women, all the feminist punk of the 1980s, the diagonal fringe, single earring, torn T-shirt, Doc Martens, flowery skirt, bangles and scarves, when this jolly tea lady started to push her way through, shouting, sorry love, I have to man a stall. Oops, I should say, woman a stall, yes?
Laughter all around. And later, we shared a cup of tea and talked and she listened to my birth story and told me to write about it and send it to such and such a place and I did and they published it and Dr. P. who had been there at the home birth of my girl phoned me and thanked me and that's how I found out that this gentle quiet obstetrician had a subscription to a feminist magazine.

06 April 2015

Almost finished packing for a short trip, just a week, to the coast. Against his usual reservations (beaches are very very boring compared to mountains) R decided I need sea air to help my lungs and in a flash, we had it booked, this being easter holidays for both of us.
Theoretically, all is well. He cleaned the car and has already dismantled and stored the bicycles in the back, the tyres have been checked and the tank is full.
Yet, in reality, I feel sort of awful with another bout of the gastritis and whatever, shakes and shivers and itches and nausea and why on earth not just crawl into bed and stay there for ever?
Well, he says, a change is as good as a rest. And having spent all his childhood right by the boring sea and never really being attracted to it, what with some of the most glorious mountains just behind you, he is surprisingly cheerful.
So I am packing porridge oats and rusks and herb tea and a hot water bottle and all my glorious medicines and one extra pair of warm woolly socks for each of us.
A last check of the weather forecast, cloudy, windy, not much sun.
Faced with her husband's retirement, which involved lots of golf and gardening, and too much energy on her part, my mother in law decided to become an artist, a painter. She joined a club and produced a variety of seminal works at a furious rate. She concentrated on copying favourite views and family photographs. Sometimes, she combined the two. Of course, we all encouraged her and she would invite us for viewings in the dining room, vol au vents, sherry and all. 
When we got married, she decided to change one of her surprisingly good pictures, originally a view of the beach at Seapoint or maybe Killiney. To mark the occasion, she inserted two little stick figures, walking hand in hand into the oncoming tide or maybe out to the outgoing tide. We called it the tweedle-dee and tweedle-dum picture and for the last 25 years it has been lovingly preserved in a black plastic bag somewhere in the basement.
Anyway, here we go, off to the seaside.

28 March 2015

I suppose that if I wanted to I could write something smart alecky about the stuff that's been happening in my lungs. About last week's tests and the results and plan A and plan B. About the way the lung doctor got off his chair and walked around his desk and took my hand in both of his. It's funny how this happens quite a lot. In the early post-diagnosis days, it made me feel better. I thought it was a weird form of respect, of team work, compassion even. Now I am not so sure. Now I find it embarrassing. Tedious even. Now I know that my first question should not be, how bad?, but instead, how many patients with this disease have you treated so far? But I haven't reached that level of sophistication yet. I will have another go next time. This time, I almost wept when he said, I think we can prevent further damage. This is plan A and if it doesn't work, we try plan B.

I could write something about how angry I am and how I get mad at everything and how I pick on R and how I explode at the slightest bit of imagined criticism,  all the time knowing deep in my bones and cells that this is not the way to do it. 

Instead I want to write about arrogance. Arrogance and ignorance or maybe it's one and the same. Arrogance to mask ignorance.
I want to write about the arrogance of knowing. To think that we could actually know our bodies or worse, what is good for them or what is wrong with them.

I used to be so full of that shit. I have been told I had a hard time with the childhood illnesses and that I was not the sturdiest of my mother's three kids. I don't remember. What I do remember is feeling strong and healthy as a child, teenager and later when I was at uni. Especially during those years of sex and drugs and rock and roll, stacks of unwashed dishes, sleeping in a room with ashtrays overflowing, long before the muesli revolution. We walked like hippy kings and queens on this earth, our healthy bodies at our command.
Don't get me wrong,  I cherish all the memories.

The first crack appeared when I took this one step further into believing that a mother knows best while I thought all was well when my baby was seriously ill, oh arrogant ignorance. Believe me, I have been slowly climbing down from my moral high horse ever since. And yet, it is so easy and pleasant to feel arrogant about health. To think that we know our bodies and like a child before Xmas we want to believe that health comes with cranberries or kale or ginger or turmeric, "fresh" coconut water flown in from Sri Lanka, with yoga and seven hours of sleep and pure bottled water from Fiji or the French volcanic springs. The one magic ingredient, the one magic change in our sloppy life style and all will be well.

OK this is not fair. I admit that for a long time I, too, have been a tad fanatic about a healthy diet (ask my child) and regional organic produce. I still am. But whatever, my health is slipping through my fingers. My arrogant well educated well informed fingers and all I can do is pretend that I am in charge.

25 March 2015

 (from this book)

I should be on the phone. At least. I should call two friends, one after the other. I got up in the middle of the night and put a pink post-it on my desk: call U, call A.
U is losing the ground beneath her feet with her partner falling deeper and deeper into the Alzheimer tunnel,  A has received yet another no-thank-you letter from a promising - we all thought so! - job offer and time as well as unemployment benefits are running out.
And I am sitting here searching for words and the right kind of energy and feeling to surface. But my hands are cold, the multitude of ailings hissing and kicking inside my body. Somewhere people are starving, suffering, dying, planes crash and bombs explode. Our planet is covered in festering wounds and my hands are cold and the phone is so far away right now.

23 March 2015

Lá Fhéile Pádraig

Patrick's day has come and gone and for an entire week this household was very busy and noisy. There was a short moment late Saturday night when I escaped to the upstairs bathroom to take a deep breath and my face in the mirror showed me this smile that was etched so deeply into my exhausted lines, I am still working on getting it off. Three days later.
Of course, I could go all what-has-become-of-me and this used to be a household with noise and music and banging doors and phone calls and pets and certainly more that two quiet persons going about their quiet little businesses.
I could, but I won't.
Instead, a little bit of Ireland. Here we have Philip King talking with a faint trace of a Cork accent and the lovely South County Dublin way of aspirating the consonants, especially the w.  It sounds gorgeous to my ears and it takes me about 10 mins to get back into it but considering the fact that I became bilingual in South County Dublin, this is my English.

Anyway, Philip is something of a very distant cousin by marriage to R. That whole six degrees of separation thing is a party game in Ireland. Not that he would know a thing about me.
And while he meanders on in this talk, showing off a bit and getting sidetracked, he nevertheless brings three gifts: a poem, music and a spectacular view.

First, the poem:

The Given Note

On the most westerly Blasket
In a dry-stone hut
He got this air out of the night.

Strange noises were heard
By others who followed, bits of a tune
Coming in on loud weather

Though nothing like melody.
He blamed their fingers and ear
As unpractised, their fiddling easy

For he had gone alone into the island
And brought back the whole thing.
The house throbbed like his full violin.

So whether he calls it spirit music
Or not, I don't care. He took it
Out of wind off mid-Atlantic.

Still he maintains, from nowhere.
It comes off the bow gravely,
Rephrases itself into the air.

Seamus Heaney

Next, the music or Port na bPúcaí (Spirit Music):

And finally, the view:

(I copied it from here.)

So many years ago, with our baby asleep with grandparents, we walked all the way up through the heather to look out over the Blasket Islands, on a mild summer's evening just before sunset when the air was still and we could hear the waves all the way down on the Atlantic.

17 March 2015

We aren’t on this Earth to improve endlessly, forever approaching infinite perfection but never quite getting there. We are here to notice the enormity and beauty of everything around us, and to notice each other – to notice how flawed we all are, and feel connected anyway.

Heather Havrilesky

14 March 2015

Remembering when I first watched this movie and the time I asked my teenage daughter to watch it with me many years later and knowing that she loves it and that she got the message, too.

12 March 2015


Cold, yes. A touch of frost at night, yes. But, oh, the blue sky and the birds. The racket they make, mating and nesting and breeding. Cranes and geese and have you ever watched a pair of noisy magpies making a nest? Messy doesn't come close.
It's the best time.

What We Need Is Here

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

Wendell Berry

06 March 2015

Working my way through a translation on malnutrition in elderly patients I wander into the kitchen in the utterly vain hope of finding a box of cadbury roses in one of the cupboards. But of course, we don't stock that kind of trans fat sugar decadence. No cookies, not even old crumbs, we are so fucking healthy in this household.  I cut a slice of (organic) whole wheat bread and spread a thin layer of home made (low sugar) loganberry jam on it. That will have to do.
The world is a better place again. We are so good, this kitchen is almost holy. Sigh and bloody sigh.

Some days we have this conversation:

Me: When (or depending on mood: if) I die before you, do you think you'll have another relationship?
R: You're not dying, stop talking rubbish.
Me: Seriously, can you imagine living here with another woman?
R: Shut up and eat.
Me: Or maybe a man?
R: For crying out loud, would you stop this!
Me: I hate the thought of you being here all alone, watching tv all by yourself and there's the laundry and the cleaning and the shopping and ...
R: Come on, I don't watch tv and well, I can tell you one thing, when you're dead, there will be far less shopping and laundry.
Me: See, you admit it. I could die before you and then what? Will you look for another partner?
R: Maybe. Come on, eat. 
Me: So you will!
R: Alright then: what about you, will you get yourself another man if I die before you?
Me: No. Of course not. Never.
R: Want some more of this broccoli? No? I'll finish it then.

I finish my slice of bread, which, in fact, tastes quite delicious. Still, I would very much like some unobtrusive person to come into the room now with bowl of, say, chocolate ice cream.


04 March 2015

Sometimes when I lie awake and need to calm my mind I make up lists. Memory lists, like my daughter's first shoes, starting with the pair of tiny warm sheepskin booties R made, next the soft red leather slippers from our Dutch friends, traditionally used as inlays for wooden clogs and passed on through generations and friends (see below), she learned to walk in these, followed by the first pair of solid booties (blue) and on through her first years up to the yellow sandals (with a good grip as we reassured S when she walked up the hills of West Cork one summer). These sandals were the only thing stolen from us in paradise and it happened while we were still living in the hotel among the wealthy tourists. We marvelled at the thought that somewhere deep in the rain forest a child was now walking in yellow Birkenstock sandals. It was a good thought. Still is.

So the mind wanders.
I try and match my child's face at the time to the shoes and I fail and of course, I worry. When she calls the next day, I move real close to the screen and count - once again - all the beautiful freckles on her adult face. 

The Nso people of Cameroon, I read recently, do not allow a close mother-child relationship. Childcare is the communal responsibility of the entire village. To avoid eye contact, mothers blow into their baby's faces. They have to work in the fields, they cannot afford time for cuddling and singing. 
I see it here, too. Only our fields are offices and that puff of breath, we call it education.

28 February 2015

the gum battle, part 1

Rinsing every 4 hours, i.e. elaborate rinsing with a variety of sophisticated gadgets. It's a tad complicated and as for my taste buds, meh. I hope I don't have to do this for ever. When R comes back from his conference trip tonight, he'll think I set up a dentist's surgery.
After every rinsing episode I listen to this song. I would have a smoke but I gave up cigarettes approx. 35 years ago. Would mask that chlorine taste. And I could lean against my door frame, tap the floor in my cowboy boots and look cool and in control. (That's 15 o's in one sentence.)

27 February 2015

a bit over 5 years

I remember the day I got the diagnosis. I remember the phone call, you have autoimmune vasculitis. Come back tomorrow and we set out a treatment plan. Gosh, I was so happy. It has a name! I am real! I will live!

All giddy, I called R at work and he took the next day off from work and after the appointment, we took the slow road home through the foggy winter wonderland along the river. We stopped for lunch somewhere fancy and laughed and he was all calm when I cried a bit.

I remember when the doctors explained the medicines and the side effects and what I needed to look out for and what I must avoid (trivial stuff like no grapefruit, no alcohol, no ibuprofen, no aspirin . . .) and so on.  Oh, never mind, I thought. What's a bit of hair loss, weight gain, moon face, nausea, maybe liver damage, possibly gastritis and a lot of other stuff with complicated Latin names like gingivitis and stomatitis - compared to lung and/or kidney failure or death? You couldn't possibly argue with that.

Luckily, I am still waiting for the hair loss and the weight gain or the moon face. I have more or less accepted that bitchy gastritis and I let my GP worry about the liver values going up and down. But there are nights when I lie awake and consider my future life stretching ahead for years and years with painfully inflamed gums, always the taste of blood and the feeling of my mouth being on fire. And that, I admit, is the worst. At night anyway.

And now for some soppy music from the boy from Monkstown, a place that once was home:

25 February 2015

letting things fall apart, letting the world come as it is 
Pema Chödrön

Cycling for 40 mins home in the dark, first the forest, no moon, not a sound, just heavy rain, then down the hill and into the city, icy drops on my face and the obnoxious swishing noises from my not-anymore-waterproof gear, the drivers who come too close in their fat cars, who forget to indicate, who try and push me off the road. Note: try, not succeed because I roar at them, cursing and hissing I move through the evening traffic. At home I peel off the muddy layers trying to find my solid self underneath and fail, shaking and weeping and tired, my gums shot to pieces, at least I hope it's just the gums - she said to wait for it to calm down, maybe a week. If not, we'll try and save that tooth, promise, she said. Don't ask me how I slept, don't ask about the gastritis pains at 4 am. At least I got to hear the blackbirds before sunrise. My sister calls to discuss possible procedures re our father. Wishful thinking. I want to put down the phone. We cannot lock him in, he is convinced he does not have osteoporosis. Yesterday, he said to me, sod the tests, ignorant young doctors, what do they know.

Most of all, I want to be rid of that tooth ache or whatever it is. As for the rest, I can handle it. I think. Maybe.

24 February 2015

Whoa, I survived a week of tooth ache and a dentist visit and I still have all of my miserably few teeth! Glory days. 
While I sat in the waiting room I actually managed to calm down a visibly shaking woman. A lot of very fake bravura on my part met sheer desperation on hers. I felt almost strong and courageous after that and sat on my hands for the most time after she left. Just in case she came running back to me.

I am watching and re-watching Wolf Hall and not only because I try to follow the plot - I mean I can't, all these dukes and counts and earls and who must get married to whom and what has the church got to say about it. I am waiting for the next beheading, I think there is another one coming. I haven't read the books anyway. Historical novels are not my thing, but I have read and loved all the other books by Hilary Mantel (esp. her biography).
No, I am really watching Mark Rylance playing Thomas Cromwell, because he looks and talks a lot like a friend I had a long time ago. The kind of friend who knows what you need before you realise it yourself, who smuggles you into the staff canteen at the children's hospital after midnight because you have not eaten for the last 24 hrs since your baby was admitted with meningitis, who turns up unasked in a miraculously borrowed car during a downpour ready to drop you at the station in time - and without so much as a drop on you and so on. That was then. 
But he is also quite a bit like Thomas Cromwell, scheming, getting his way, always his way regardless. And at times my trust meant nothing.
We spoke on the phone a few years ago, after a friend had died, we spoke for a good long while and it felt almost right again. I know he has been asking about me, he knows I have been asking about him. He is getting on and one day someone will call with the news and I will board that plane back to Ireland. Maybe.
Anyway, Wolf Hall is splendid. 

19 February 2015

from a wonderful man

Over the last few days, I have been able to see my life as from a great altitude, as a sort of landscape, and with a deepening sense of the connection of all its parts. This does not mean I am finished with life.
On the contrary, I feel intensely alive, and I want and hope in the time that remains to deepen my friendships, to say farewell to those I love, to write more, to travel if I have the strength, to achieve new levels of understanding and insight.
Oliver Sacks on learning he has terminal cancer

15 February 2015

As hard as I try, I cannot imagine what my mother may have been like as girl. Here she is maybe five or six years old. We used to love it when she told us stories of her childhood adventures, the horses, the house with the lion sculptures in the park, wild games with her grandfather, running away from her nanny. How many of these were really only tall stories, embellished over time? Does it matter?

This morning I looked into the mirror and yes, she looked back at me again. Some days, I don't mind that much. Today, for an instant, I also saw my old woman self, a mix of myself and my mother and my sister, a strange new woman with a somewhat incredulous look.

I wonder when I will start feeling old. Of course, my body often feels old but only because of the connotations between illness and old age that have settled inside my brain without permission. No, I mean feeling old and resigned about it.

For some years my mother had a thing about haircuts and how they take away years. So she had her hair cut really short and would wear my brother's jeans. 
I don't go for any of that but I wonder whether she ever felt old when she looked into the mirror. And what about her mother? My grandmothers. I start to feel dizzy.

12 February 2015

Lot's of oh dears fuck this. Back at work, that's the good thing. Whereas cycling in the cold air, uphill etc. through the windy forest, was probably unwise considering the feeling of someone sandpapering my bronchioles - thoroughly - since I got back.

Snowdrops and crocus are up but that won't do. I want spring. Now.
Too early, yes I know. 

My father's bruised back has turned out be a lumbar fracture requiring surgery. He tried his best to act haughty and superior during his week in hospital but his voice sounded like that of a lost child. Today, of course, all this has passed as he lectured me over the phone on the future plans which basically involve him learning to walk unaided again. He is most confident that this will be achieved by mid March as he has tickets booked for operas and whatnots. His female friends here and there may get impatient. And no, no walking aid. Certainly not.
I want to admire his resilience and his arrogance. He could just as easily pack it in, like the next best 86 year old with mobility issues, read the papers, get meals-on-wheels and watch tv.  That would be the easy option for us, I know.
I remember my granny just before she died (a few weeks before her 103rd birthday). When I phoned her she used to confuse me with one of her daughters-in-law. Once I tried to correct her but she cut me short. That girl is too young to make phone calls, she said. Stop pretending.
That was twenty years ago, and I don't remember now whether she told me over the phone or someone else who then called me, but one day she decided that this was her last walk, that from now on she will stay indoors. She went to bed and died that night.
My father was her youngest, an unwanted afterthought. There was never much love between them or between him and his father, but he was dearly loved by his siblings, who all died in their early 50s. So those two, mother and son, had to battle it out for long years all alone. Sometimes, this makes me so sad, other times it explains a lot. But mostly it's just a confusing mess.
I know that I try to push my idea of family onto him. He fights it mostly. But as long as I come with a cake or some other treats, he'll open the door.

08 February 2015

Thanks to Robert, I spent most of last night with John Martyn. This is nothing new because John  Martyn features highly in this household. You could say that his music has been the soundtrack of my life with R, right from the very early hours. There was one particularly frantic dash across London in the summer of 1979 to hmv records where I spent most of my money on any and all of his albums before racing back to Victoria Station with seconds to spare before the boat train left.

So I watched the bbc documentary and of course he comes across first as a rite messer - the loudmouth, the wild one, the drugs and the drink. It's all there. But also there is the sadness, the quiet genius, the minute glimpses of deep loneliness and honesty. I read somewhere that he referred to himself as not a folksie, but a funksie. Whatever, his music made my life better in so many ways.

05 February 2015

You can deal with whatever life brings you even if you find yourself between a rock and a hard place.

Too long for a bumper sticker.

04 February 2015

Your word for today is: ninguid, adj.
† ninguid, adj.
[‘ Snowy; covered in snow.’]
Forms:  ningid,   ninguid
Etymology: <  post-classical Latin ninguidus (also ningidus) snowy, covered in snow (late 4th cent.) <  classical Latin ninguis snow (cognate with snow n.1) + -idus -id suffix1.
 Obs. rare—0.
  Snowy; covered in snow.
1656  T. Blount GlossographiaNingid or Ninguid, where much Snow is.

03 February 2015

don't be afraid of the light that shines within you

Today, I remembered that once again I forgot all about Imbolc - and it's the most positive day of the year! When the light comes back!! Celebrate!!!

Instead, I gathered my wits and my miserable little bits of energy in a tight bundle and took the train down the magic river valley, all grey nothingness with the odd snow covered north-facing slope. In a feeble attempt to limit exposure to yet another load of infectious agents I opted for first class. No, that's an outright lie, because when I booked the ticket online, weeks ago, I fell for the upgrade spiel and clicked on the magic button, maybe secretly guided by some deeper knowledge of this prolonged bronchitis encounter, who knows. 

Well, first class with all its legroom, fancy antimacassars and free coffee is boring and very very silent. Surrounded by blasé people who probably think that eye contact is spreading diseases I occasionally had to fight the urge to unplug my headphones and share this amazing podcast. Just to prove that I was not listening to some rubbishy pop or whatever they all thought I was doing. It almost felt as if my mother sat across from me. Almost. Actually, she would have enjoyed that podcast.

My lovely doctor was ill today, so I was seen by her boss who is an eminent authority on autoimmune vasculitis in this neck of the woods. Thanks to my lowly statutory health insurance status I usually never come near her. Which is just as well. She greeted me with Do you always have such dark rings under your eyes? My mother would have walked right out of the room, but I stayed, obviously, and got the full treatment incl. throat and nose swabs (yes, they do hurt). 

I must have looked a fright after that because the taxi driver offered me a lozenge and when I asked whether he had seen any sunlight, he turned of the main road, switched off the meter and showed me the view over the hills with a tiny bit of sun hiding behind the clouds. Then he told me all about hockey and how he used to play it when he was a boy in Pakistan and how people foolishly think cricket is superior. I almost asked him to come back with me to my first class compartment, we would have a great conversation.

Once again, I am waiting for results while pretending to enjoy my fabulous life. No, no, seriously: spring is on its way, all will be well.

27 January 2015

This picture is a fake, my father never learnt to play a musical instrument. He is posing with his brother's violin. He doesn't sing either, he sometimes grumbles along way out of tune. On Sunday mornings we would find him sitting downstairs, playing his records, symphonies mostly, Schubert, Haydn and Beethoven, while going through his notes and science journals and from time to time, he would stab the air with his pen, conducting his imaginary orchestra.

The window behind him is where he now has his bedroom. It used to be my grandfather's study before the war. After the war and after the American army had moved out - they stayed in the house for four years - my grandparents moved upstairs and the ground floor was turned into an apartment. My father moved into it soon after he left my mother, when he sneaked away with his car load of stuff while she was recuperating from yet another nervous breakdown somewhere on the coast. Apparently, she arrived home to find half of everything gone. My sister told me that he left because of the blood. My father faints at the sight of blood. I have seen this happen a number of times, he keels over like a felled tree. Bang and out. When my mother cut her wrists, he called my sister and hid in the car, she told me. And about the buckets and the sheets and the stains in the bedroom. The off-white carpet. 

I was on the other side of the equator at the time. The last time I had seen both of my parents together, maybe two years earlier, they could not stop fighting and so I took my little girl and together we walked down the street. It was a hot evening and we waited around the corner barefoot until they stopped shouting. I packed my stuff later that night and told my father that it was time for him to get out, too. He just shook his head.

Last week when I called him on his birthday, he was still in bed. I could hear in his voice how he immediately regretted telling me that. Too late. I coaxed it out of him, how he slipped on the last step down to the garden, how he crawled to his car and pulled himself up and drove to the meeting with his Swedish friends and only noticed the pain when he got home. My father is a scientist and to him, the body is a set of plumbing works with chemical interactions and a slightly complicated set of nuts and bolts to hold it all together. Nothing to get worked up about as long as there is no visible blood. 
This week, he calls to inform me that yes, he has seen a doctor this morning but only to have his own diagnosis confirmed. A couple of bruises, so what. The way we all get so worked up about nothing. Tsk. Tsk.

26 January 2015

Really, I should know by now how to handle this. The usual waiting and observing, patiently, gently and with a positive mindset. In theory.
Actually, I am so much better at it. I think I am. I try to. Many people have suffered from a nasty cough and a touch of bronchitis with chest pain and all that exhaustion. Just because I have this autoimmune shit doesn't mean that it's something else. 
Ok, thinking back I can count the times I had anything as heavy as this on the fingers of one hand but obviously, I mean immune suppression, just use your brain, silly woman. 
Well yes, I do realise that this disease likes to dig into the lungs but hell, not my lungs. I am just slowly recovering from a nasty bout of bronchitis. So there.

Oh, and that snow from yesterday? Gone. Washed away by the rain. And the wind will carry me.

24 January 2015

It started to snow just after breakfast. Quite a lot, really. But by tomorrow afternoon it will be gone. I am certain. Occasionally, I look outside and it's still there, unfortunately. Seriously, 24 hours, not a minute longer. I am telling you.
Meanwhile, twelve amaryllis are budding and flowering indoors. Take that, winter, you brute, you!

19 January 2015

Memory is like a dog that lies down where it pleases.

Cees Nooteboom
This is day five of antibiotics and rest and where is the fucking recovery? Shush! Of course it's happening, only in such tiny steps that you need to put on your magnifying glasses to see it. What did you expect?!

Easy does it. I should know. Champing at the bits is a waste of precious energy.

17 January 2015

auris interna

Tinnitus: January, thin rain becoming ice

Now footsteps on shingle. Make of it what you will. Sea-birds roost
on the breakwaters, accustomed, of course, to twilight.
The spirit-lamp in that house on the headland could easily fall
and spill
and the fire burn all night. Some time later, a subtle ghost,
yourself in memory perhaps, might well set foot
up there amid clinker and smoke, the whole place silent and still
except you bring in the tic of cooling timbers, and then the birds
in flight.
Now chains through gravel. Make of it what you will.
David Harsent 
(from today's Guardian)

Some of them are mine, too. At night, the fairy flies by my right ear tinkling her bells, a mean fairy granting no wishes. On most days, in my left ear, a steady wind is blowing through a vast field of swishing dry sugar cane in central Mauritius while I am leaning my head out off the window, seasick and cold so far below the equator. But most of all, the hum, deep and low, that old river barge slowly passing through my left ear, forever and ever. There is no harmony, no rhythm, no pleasure in it. And no surprise any longer. To be at the mercy of such tiny events inside the minute magic spirals of my damaged inner ears, even that had to become part of my life. Mostly now, tedious, boring. So what.


15 January 2015

Bear with me, I am coming out of the fog. My head throbbing, my voice like Rod Stewart's after a full concert, and the coughing, well I think it sounds pretty damn impressive. I tried to do this nicely, thyme tea with honey, plenty of rest and fluids, but no, the lab report was nasty and so plan B or rather antibiotics for five days. We shall see. My intestines will have a fabulous time.

Imagine a very unhappy teenager in a small grey town in Northern England sometime in the early 1970s, she doesn't understand most of what people are saying, she has been kicked out of school because she refuses to wear the ridiculous uniform, especially not that awful bowler hat. Her host family doesn't know and so she walks around town, spends hours in Woolworths when it rains, sampling the blue nail varnish and the glitter hair spray. She wants to feel so very much aloof and haughty and cool but really she is scared and lonely. With her last money, she walks into a hairdresser's and points to the Rod Stewart poster. Hair with attitude. She needs that now.

Happy 70th birthday Rod Stewart, you wear it well.

13 January 2015

. . . contemplate how human beings a century from now will view those of us who lived in the era when climate change was recognized, and yet there was so much more that we could have done. They may feel utter contempt for us. They may regard us as the crew who squandered their inheritance, like drunkards gambling away a family fortune that, in this case, is everyone’s everywhere and everything. I’m talking, of course, about the natural world itself when it was in good working order. They will see us as people who fiddled while everything burned.

Many people believe that personal acts in private life are what matters in this crisis. They are good things, but not the key thing. It’s great to bicycle rather than drive, eat plants instead of animals, and put solar panels on your roof, but such gestures can also offer a false sense that you’re not part of the problem.
You are not just a consumer. You are a citizen of this Earth and your responsibility is not private but public, not individual but social. If you are a resident of a country that is a major carbon emitter, as is nearly everyone in the English-speaking world, you are part of the system, and nothing less than systemic change will save us.

Rebecca Solnit

11 January 2015

new word of the day

uhtceare : Old English noun meaning pre-dawn anxiety or lying awake before dawn and worrying.