30 September 2010

reading Alice Walker

When life descends into the pit
I must become my own candle
willingly burning myself
to light up the darkness around me

29 September 2010


  • finished a soppy novel about a childhood summer picking cotton in 1950s southern US, in bed with the window open and the cold air rushing in
  • read absolutely all of today's paper for breakfast
  • reviewed a translation of a Jane Goodall talk (ruffled the translator's feathers with my changes - tough)
  • started to review a translation of a wikileak/Julian Assange interview
  • received a paper on women and NATO to translate 
  • spent 45 min with my physiotherapist angel
  • did all three sudokus in today's paper and the one from Sunday's Observer for lunch
  • answered a phone call from my boss who wants me back no matter how many hours I may be able to work
  • drove to my office and spent 90 minutes at work
  • chatted with U who just returned from hillwalking across Madeira
  • followed G and W's blog about cycling to China, they have now reached the Black Sea
  • sat in the car reading and, when it got too dark, sleeping while waiting for R to come back from his run
  • cooked microwaved ready made frozen dinner
  • injected weekly dose of MTX
  • collapsed in front of TV watching another political superficial talk show on the 20th anniversary of German reunification
  • managed to ignore symptoms occasionally
  • spread my bits of activity through the day as if I was carefully squeezing toothpaste out of the last precious tube

27 September 2010

sounds from far away

Summer is over. There are last glimpses of hot sunlight but the winds are cold and the days are shorter now.
Further up towards the main crossing the road is being resurfaced and the traffic conversions are creating a ruckus with horns sounding and shouts carried down into the garden. There is one particular horn going on and off, must be from the roadworks, which calls up memories of standing at the walls of Erice looking down towards busy Trapani on a sunny day in October.

26 September 2010

jumble of emotions

It's been a hard two days. full of anxiety, tears and despair.
Last night in a song I heard this line "Be yourself" and there was a blank. I don't feel like myself any longer, I don't know this frightened woman I have become.
If anybody would have told me not too long ago that one day I will be faced with this enormous challenge to my health and spirit, I would have felt positive that I could handle it. Let it come, I would have said, look at me, I can do this - theoretically. And how I looked down on people who let themselves go - the way I do now.
Only, I am not sure if I let myself go. Rather, I seem to be struggling most of the time to stop myself falling to pieces. It's a fierce battle.

This afternoon, R and I did a short bit of Qi Gong with the lovely tape I got years ago. It was a nice piece about the ever changing universe, about yin and yang and two sides of everything together with gentle playful movements of the hands.

And next I read this by Pema Chodron:

A few years ago, I was overwhelmed by deep anxiety, a fundamental, intense anxiety [...]. I felt very vulnerable, very afraid and raw. While I sat and breathed with it, relaxed into it, stayed with it, the terror did not abate. It was unrelenting [...], and I didn't know what to do.

I went to see my teacher Dzigar Kongtrül, and he said, "Oh, I know that place." That was reassuring. He told me about times in his life when he had been caught in the same way. He said it had been an important part of his journey and had been a great teacher for him. Then he did something that shifted how I practice. He asked me to describe what I was experiencing. He asked me where I felt it. He asked me if it hurt physically and if it was hot or cold. He asked me to describe the quality of the sensation, as precisely as I could. This detailed exploration continued for a while, and then he brightened up and said "Ani Pema, that's the Dakini's Bliss. That's a high-level of spiritual bliss." I almost fell out of my chair. I thought, "Wow, this is great!" And I couldn't wait to feel that intensity again. And do you know what happened? When I eagerly sat down to practice, of course, since the resistance was gone, so was the anxiety.

I now know that at a nonverbal level the aversion to my experience had been very strong. I had been making the sensation bad. Basically, I just wanted it to go away. But when my teacher said "Dakini's bliss," it completely changed the way I looked at it. So that's what I learned: take an interest in your pain and your fear. Move closer, lean in, get curious; even for a moment, experience the feelings without labels, beyond being good or bad. Welcome them. Invite them. Do anything that helps melt the resistance.

Then the next time you lose heart and you can't bear to experience what you are feeling, you might recall this instruction: change the way you see it and lean in. That's basically the instruction that Dzigar Kongtrül gave me. And now I pass it on to you. Instead of blaming our discomfort on outer circumstances or on our own weakness, we can choose to stay present and awake to our experience, not rejecting it, not grasping it, not buying the stories that we relentlessly tell ourselves. This is priceless advice that addresses the true cause of suffering - yours, mine, and that of all living beings.

 if only...

the secret

There are moments when I am almost ready to shrug off any notion of autoimmune disease and are busily welcoming the idea my physiotherapist put in my head - namely that the dislocations she can feel in my cervical spine, combined with the resulting tense muscles and sore endpoints of various ribs etc. etc. are familiar to her, i.e. she has seen all this causing vertigo and even sudden loss of hearing in other patients.
I feel as if I have written down a secret. But, no, all these experts have looked in detail at my cervical spine, the CT and MRI images, tested hearing and balance and why would none of them suggest any connection?
Why after weeks of intense and skilled work on my neck and balance did I get a heavy case of vertigo last February?
No, not a hope.

24 September 2010

what is it with me

Here I am in my nice and comfortable home, with R's beautiful garden in late summer colours to admire (even in the rain), my bicycle ready for a short spin (which I can manage most days), the river just down the road, a full fridge and larder, comprehensive health insurance and sympathetic doctors, no one to put pressure on me, no demands, no threats, no dramatic financial worries...
Today:a long and lovely chat with my wonderful daughter across date lines, oceans and continents, a short, careful and slow trip to the library with a coffee to go and fresh brioche, my man at home early ready for a leisurely weekend, the cat looking at me waiting for her dinner, the rain almost finished...and all this with my constant companions nausea and vertigo and my dodgy ears... Reasons to be cheerful?

I am ready to freak out!
When I walk through the garden I imagine the long cold winter ahead,
when I am in my kitchen, my roaring head competes with the humming of the fridge,
when I slowly cycle down to the river I think of all the long cycle trips I can no longer do,
when I sit at my desk or anywhere with the laptop, I try not to miss my office and my job...
when I move through our comfortable home I want to throw out all these cosy sofas and beds and chairs and rugs - I am so sick of needing rest!

How much I want to snap out of this!
Concentrate on what I CAN do instead of all the things that are not possible.
Why is this so very hard to do?

I feel so undignified in my despair, so weak and pityful.
So far far away from the woman I was/want to be.

21 September 2010


We are busy getting ready to leave for a trip to the continent, to show our baby to friends and family. It had been unusually hot, indeed, a heatwave giving this damp island a Mediterranean feel.
So here I am packing our bags with my baby girl in her swing seat throwing up and crying. Just what we need now, six hours before we are to board the night boat to France. Quick: wash, feed and isn't she a bit hot? Well, who wouldn't, in this heat. Get on with the job, sing to her, maybe she will calm down. Surely she will calm down.
In walks Tony. A visitor, brother of a friend, home - as they say in Ireland - from living abroad. We never met before, polite greetings. As he lifts up my crying baby trying to soothe her, the expression in his face changes to serious and I watch him moving his hands around her neck, feet, arms, head.
He hands her back to me and tells us to bring her to the doctor, now!
What?? Now?? Who is this guy?
But there is something in his voice that makes us run to the car.
Thirty minutes later I am arguing with the receptionist nun at the hospital emergency desk who cannot understand that this baby isn't baptised. We push past her and the next thing I know is we are standing high up on the top floor of the hospital, holding each other while the doctors are doing a spinal tap to confirm what Tony suspected: meningitis.
He saved her life. And mine. I haven't met him since. But he knows.

swimming in the Indian Ocean

When we were living in paradise and had passed the half time mark, when we were counting the full moons backwards (only ten, 9, 8...more to go) and felt a little heavy around the heart every time we passed the airport in our battered Moke I made a pact with the Indian Ocean.

Every day, and I mean every day: Monsoon shower days, windy days, hot and dry days, long working hours days, sore from climbing mountains days... I drove over the hill to this little beach, parked above to the right, took in the view, the sounds and the smells and pulling off my shorts and Tshirt, dropping towels and basket, slowly walked down between the rocks and straight across the sand into the surf. 
Sometimes I stayed in the water for close to an hour, just hanging in there looking into the deep drop below at the rocks and coral and the teeming fish, or on my back floating and almost asleep with the sun on my face. Other days there was more vigorous swimming back and forth between the rocks, crawl, backstroke, crawl, backstroke, crawl.

On my very last day, our very last evening the ocean threw me out. Literally. A sudden massive swell gripped me, whirled me around and around deep down and spat me out with my swimsuit torn off me spitting sand and salt water. Shaking, laughing and weeping I sat on the rocks watching the sun go down, saying my good byes.
Months later back in Dublin, Dr. Fleetwood rinsed the last of the fine white sand out of my ears.

20 September 2010

and Rilke said

Let everything happen to you. 
Beauty and terror
Just keep going. 

No feeling is final.

(Lass dir alles geschehn: Schönheit und Schrecken.
Man muss nur gehn: Kein Gefühl ist das fernste.)

my job

I made it to my office this morning, managed almost two hours, two really exhausting and frustrating hours talking to two of the four people replacing me. Nice women, one is trying her level best, no doubt about that, but she hasn't enough time and she shares my frustration because she has an idea what needs to be done. The other is flaky and not keen. She did almost nothing of the stuff I so carefully and painstakingly explained and detailed for her with screen shots and powerpoint slides. So the backload from her desk is overwhelming.
This really pissed me off and I felt like chucking it in on the spot. No way will I be well enough to straighten this up in time. This is not my responsibility, I know, except that I do feel that.

And I was exhausted when I got home. Too tired even to relax, aching to my bones. Scary, quite a bit.

Later on I went with R to the hardware store, the whole food shop and in the end we had dinner in the fish restaurant and a coffee at BaGo under the trees. And at some stage these words just came: I don't need to get back to that job. Anything is possible. I don't need this.
And R said, exactly, and we just moved on to the next subject.

Then again: I did it. There! Maybe there is a way? Work? One, two hours a day? My desk? My job?

Pema Chodron says

The way to work with fear, to know our fear so that it can lead to fearlessness - one of the best tools for that is gentleness.

How to taste the quality of the moment [...] without the labels of good and bad, or succeeding and failing. But really just get used to tasting or knowing or experiencing the quality of what you are going through, not as some final thing. [...] No feeling is final, but somehow in the moment, we often feel, a sort of - this is how it is - in such a heavy way. And then so much story line goes with that that it drags us down.

So sometimes we like what we are feeling and then we don't like what we're feeling. And then we like it again, and then we don't like it again. And then it just sort of goes like that - it's actually fine for it to be like that. 

The trouble is, we all take everything so personally.
Taking it personally means investing so much energy and time as if you are like this, and the situation is like this, and its fixed, instead of realizing that its always shifting and changing.

19 September 2010


Yesterday I received the letter from the department of social affairs informing me that due to this weird autoimmune disease I am now officially recognised as a disabled person.
With it comes a nifty little ID card with a sick looking mug shot of a person vaguely resembling yours truly.

It translates into a small tax free allowance and a few other goodies such as reduced entrance fees to selected museums, shows, cinemas etc. but most importantly it could mean that I cannot be fired - provided I get well enough to work at least 1-3 hrs/day before the end of February 2011.

Not bad, eh? But it was a black day, really. I cried over the words "valid for an undefinite period". And honestly, I would pay double, triple for movie tickets if only I could get well enough to just go there.

But then again, this is one thing I set out to get and it was not easy. So, yes, cheers!

17 September 2010


The day my daughter was born I became a grown up. When I held her on my belly I understood:
This is no longer just about me.
That was my first grown up thought.
And so I became someone's role model, I had to know how to solve problems, distinguish between good and bad, be someone to turn to in times of need, worry about sore throats, fevers, maths homework, be reliable.
I also learnt that I will not be young forever. I had moved up into the parent ranks, suddenly there was another generation after me. With my efforts I could make my daughter's life on this planet worth living.
It was a joy to watch her grow up and one day she left.
That's when I understood: She can make it without me.

And then I really grew up.

16 September 2010

the dazzling darkness that restores us in deep sleep

reading Bernhard Schlink

We live in exile. What we once were, what we wanted to remain and maybe were even meant to be, we will lose. We will find something else instead. Yet even while we think that now we are finding what we were looking for, we are really discovering something else.

bombs in the night

Yesterday he talked about the war, about the nights when the bombs came down. He said there was one night when the shaking of the house was too much and he ran out of the basement shelter into the garden and lay down on the patch of grass alternatingly covering his head and turning to look at the night sky with the trundling lights of the grenades and the hissing and roaring and the eventual thump of detonation. And then he saw the moon.
He was 15 years old.

Last night when sleep would not come I tried to picture him there outside his house on what is now the driveway below the little orchard, a skinny boy with scratched knees and a blond fringe.

15 September 2010

Roma tomatoes and ricotta

For the last two days lunch was fresh ricotta from the whole food shop with delicious overripe Roma tomatoes, some basil and black pepper on pumpkin seed bread.

Memories of a very hot July in Rome on the last day of a week long stay. Down to my very last Lira, just enough to buy a small muslin bag of this white curd-like stuff, warm and dripping and a handful of odd shaped tomatoes at a small market. The seller took pity on me scraping together my last coins and gave me a piece of bread for free. Munching this and licking my fingers all the way on the night train crossing the Alps into Munich.

13 September 2010


Summer is over.
I am very apprehensive of the winter. Just listened to this climate scientist on the artic ice melting and his prediction for long cold winters with northerly winds. Gruesome thought.

My father has invited me on a trip to Strasbourg for Nov. with lots of rests along the way. We'll see.

And Lou Reed weeps...

09 September 2010


While picking the last blackberries I remembered my adventures in the autumn/winter of 1979. I was so innocent, really. I had taken a sabbatical from university to work with free schools in London, to explore alternative ideas in education. I was 21 years old. Had I been the mother of the young woman I was then, I doubt I'd let her move to London just like that. But my parents were so distant, they probably never realised what I was doing. Not that I told them much.
Once in London plans changed all the time. I was dizzy with the city, meeting up with R and getting my head round this developing relationship.

Instead of teaching in White Lion Street Free School, I found myself one late rainy afternoon sitting in a Triumph Spitfire. The driver was Marc, one of the people R had picked up on his travels over recent months. Marc had impressed us with his Bank of Balochistan cheque book and tall stories of driving lorries with electric goods to Iran and coming back with rose petals, chocolates and raisins - we believed it all of course. In short: another London hippie of the times. Plus, he had somehow got hold of this snazzy car which was now carrying me down the M1 towards Gloucestershire. What started out as a smooth adventure soon went awry, when first the heater went, next the lights and before long we stood there at the hard shoulder of a rainy English motorway with the evening traffic rushing past us. Still joking and no clue as what to do next, a car slowed down beside us and an elderly driver got out. Marc did all the talking, dishing up a story about driving his friend's car, having forgotten to bring with him the car registration and regretfully also his licence and so on. The man soon agreed to bring us all the way to Stroud where we were to meet up with R who had hitchhiked ahead of us. It was a quiet journey after that, warm and cosy. The man went out of his way to drop us outside the exact place we wanted to go to. When we thanked him, he showed us his police ID and warned us to be more careful on the road in future.

We were late and R must have given up on us - he was nowhere to be found. It was dark and raining hard by now. I had no idea where I was and what to do next apart from following this Marc character around. We hitchiked for some distance and then walked up a windy path to a Jacobean mansion with lots of narrow steep windows and a black and white checkered marble floor in the vast and very messy entrance hall with rows and rows of shoes, dirty  wellingtons, clogs, stray umbrellas, hats, scarves and at least one sleeping dog.
Voices could be heard from behind a door and we entered this big, warm kitchen straight out of Country Living, and there at a large table sat R, his face lit up when he saw me and the young woman who had stopped cleaning Brussel sprouts when the door opened laughed and said, aaah, you must be the one he hasn't stopped talking about since he came here.
This is how I arrived at Blackberry Hill.

07 September 2010

some days I regret we gave away the old piano

one year

Several months ago I told R and S that I'll give my best for a year and if things have not improved I'll see what I'll do next.

Now I have given my best - whatever that is - for one year and things have not improved and I haven't a clue what to do next.

Apart from the fact that there is absolutely nothing to do. It's not a do thing at all. It's a grin and bear thing. Only there is no grin.
Today I feel swamped by sadness. Or maybe it's just self pity. Or both. Who cares. My luck has run out.

Remembering the energy and the urgency and the trust I put into my recovery last year at this time, how confident I was that there is medical help, that my body knows how to get better, that time will heal etc. etc.
This is so distant now. Feels like watching a different person. I feel so reduced, diminished,  frightened and alone.
What has become of me!
How did I get that small?

How do I get out of this fucking mess? Ok, I have to accept there's been a  paradigm shift - as someone recently put it, ever so cleverly - in my life. Now, where are the tools to cope with it? Every itsy bitsy IKEA shit has a manual, so why is there none for this shitty autoimmune disease?

Half a lifetime ago, rattling the perimeter fence at Greenham Common US air base, shouting,  and singing in a crowd of three million women, I physically felt this wave of fury being transformed into energy and strength.

Why do I remember this now? I can barely make it upstairs today. My fury today is a flood of tears. The only wave is one of nausea.

02 September 2010

Pema Chodron says

You are the sky. Everything else - it's just the weather.

five things

Let's see if I remember them all

be active
take notice
keep learning

We watched this TED talk last night. R figured that as a fulltime teacher he basically gets it all covered in a day, it's a tad bit harder for the chronically ill person being washed out by MTX side effects.

01 September 2010

this morning

Waking up after a restful deep sleep. Birdsongs, cold autumnal air rushing in through the wide open window.
First thoughts forming, images whirling around, slowly coming to settle on a more coherent concept:

This is not my fault.
I am not fragile.
I am not delicate.
But there is something very very fragile and delicate inside of me.
Careful, careful.

The vast blue sky.