30 July 2010

looking at a photograph from 1989

If you only see the waves you may overlook the water. But practising mindfulness you can touch the water in the waves. When you have learnt to touch the water the coming and going of the waves doesn't matter any more. Birth and death of the waves are no longer interesting. Fear will pass. You will no longer worry about the beginning or the end of a wave or that one wave is higher or deeper than another. You can let go of these thoughts because you have touched the water. (from the wise man)

This picture was taken on Easter Sunday late afternoon. I had just finished reading John Le Carre's Perfect Spy, while R was snorkeling somewhere to the left and behind me S was trying to get the giant old tortoise to follow her dangling a leaf.
A perfectly happy day.

26 July 2010

11 months

Around this time last year I had just been through three days of FUO (fever of unknown origin) and once it was clear that I had not picked up the H1N1 virus during my trip to London earlier in July 09 I did not waste any more thought on it. Never mind the fact that when I finished painting the grubby wall paper in the hall the next Saturday I was knackered for the entire Sunday, never mind the fact that in the following weeks all I managed to do after coming home from work was fall asleep in front of the TV, that visitors and outings tended to exhaust me and that I spent weekend afternoons fighting sleep, and that I was more than glad that others could do shopping and cooking.

What mattered to me was my daily adventure, my cycle race to work, setting off, winding my way through traffic so easily, what a delight, then the climb up on hairpin bends and the jubilant feeling of achievement 20 min later up on top, the slow spin onwards through the forest, the quick stop at the viewing point, taking my daily picture of the view, a short breathing meditation on the bench under the massive birch tree and on to my office for the next 9 hrs.

I ignored every symptom that may have stared me in the face. In fact, as long as I could manage this lovely trip every morning, surely I must be ok?

Eventually, I collapsed.

Eleven months ago.

The likelihood that I will recover sufficiently to go back to work is very very slight. So slight that as of today I have stopped considering it.

24 July 2010

Connemara 1979

I had been on the road for four days on trains and boats and hitchhiking. It was a clear sunny Saturday evening when I walked around the corner with the sea behind me and the high fuchsia hedges on both sides of the road. There was not much to this village, not like today with its big supermarket and fancy bistro with customer parking and outside seating. A cross road, two pubs, a couple of cottages, the run-down ruin of the former industrial school.

Where to next? I walk up to this good looking young guy trying to catch a lift on the corner but he only speaks French and we shrug shoulders and smile.
In front of the first pub, a scruffy looking young guy with a dishevelled beard is sorting through the panniers of his bicycle and he takes a good look at me. Before I can ask him for directions, the pub door opens and an elderly man comes out followed by two young women with backpacks just like me. He tells me to come along if I am also looking for the workcamp. Next, we are packed into his car and driving up a steep hill. Who the heck is that? says the driver and I turn around to watch the bearded guy following as fast as he can on his bicycle.

Today is his birthday. I have made him 30 birthday cakes so far but today I am not able to. We'll do it another day, he says and smiles.


Looking back I should have seen this coming. But that's the thing about hindsight, it's so bloody useless.
Last Sunday, the alarm bells (hindsight!) were pretty loud and clear when we returned from a shortish cycle along the river which sent me puffing and shaking onto the nearest bench before I was able to make it home. I was crawling through the next couple of days battling increasing nausea and exhaustion. Tuesday drove down to W to see Dr B (pre-arranged check-up) and back along the river with a lunch break in a tourist spot surrounded by baffled British school kids on exchange to picturesque mediaeval towns and Roman remains. On Thur another visit from the mother of all headaches and shrill alarm bells (hindsight!). After a rough night with shivers and hot flashes and bouts of heavy nausea the world started to spin just after breakfast and continued to do so for most of the day. Today, my head feels so tender and sore, every movement starts a series of spins and I feel as if I'm under water.
Wow, so what the fuck is this. I have done everything according to the books, doctors! And it feels I am back at square one. Dr K suggests to contact the clinic in W if things don't improve by next week.
Wait, get this straight: I have had vertigo attacks for years. Granted, rarely as heavy as this one (or the one last September or the one last February) but it's nothing new. Sit it out, move with care, but move and bear with it. And be bored.
And: My hearing is fine!!!!

22 July 2010

this is the rub

What they don't tell you when you are diagnosed with a chronic autoimmune disease:

You will never return to your normal life as you remember
You will grieve for this life like hell
You will take ages to come to terms with this loss
You will make it soo hard for yourself to accept this new life
You will be lonely
You will wallow in selfpity a lot of the time

reading Susie Orbach

"Everywhere we see evidence of the search for a body, disguised as preoccupation, health concern or moral endeavour. Almost everyone has a rhetoric about trying to do right by their body which reveals a concern that the body is not at all all right as it is and that the body is a suitable, indeed an appropriate, focus for our malaise, aspiration and energy."

16 July 2010


Went into town yesterday pretending to be just healthy: library, coffee, some shopping, lots of stops sitting down, gorgeous lunch in BGout upstairs as far away from the crowds as possible. Exhausted but happy to be back in the world. Asked R what he wants for his b'day next week and he said: you to be happy and well again. I could not speak for some time.

11 July 2010

high summer

It has become really really hot. After a short trip (on bicycle!!) to the farmers market and a quick cup of coffee we buried ourselves inside the shuttered and closed house. In between rests and rehydration sessions I tried to help R finish up the renovations downstairs.

At midnight temps were still around 30°C and I was stretched out on the patio stones (which were almost as hot as an electric blanket) looking at the stars. Searching for cool and restful sleep we moved around the house with blankets and pillows meeting up here and there. Eventually I slept surprisingly well in the laundry with the door to the garden wide open, vaguely registering the heavy thunderstorm sometime in the early hours and if any stray cats came to visit I never noticed.

There was a refreshing breeze for a while this morning but I almost failed to notice as I was battling waves of nausea and worsening of various symptoms - all the time trying to avoid being hit by this oncoming train called panic. I had a good (?) cry and tried to sort myself out, as in what have we got here: side effects of MTX, maybe a little flare up due to the heat, tension, blocked nose, need to drink more, calm down, breathing, breathing, breathing... and as it happened before this image of A came to mind battling viral encephalitis after her bone marrow transplant thinking of her small daughters and I feel such a miserable pityful whimp - and elated because I am so much alive. So much alive. So much alive.

09 July 2010

Three years ago I sat outside just like tonight, daylight fading, the neighbourhood getting quiet, the bat doing its rounds from the Douglas fir, the occasional tuktuktuk from a boat or the sound of trains from the other side of the river.
Only then I had just had a small pice of bone clipped off my upper right jaw, after five previous oral surgery adventures in the space of 12 weeks and was going round the bend with pain.

07 July 2010

summer of 85

Summer, the old orchard in Wellington Square full of apples, my little toddler on my hips, swinging and giggling.

most of the time

Most of the time now I feel calm. Really? Most of the time? It feels like it. I am calming myself, my environment calms me, the gorgeous summer, sitting in the garden reading, dozing, watching birds, playing with the cat, picking fruit. Later on a light lunch on the patio... the day meanders on.

Most of the time now I say to my body: OK, show me what you are up to, what you need, let me understand what's going on. It's your turn. I have racked my brain, worried and panicked through countless nights and days unable to sleep or eat. I give up. Or rather: I give in.

I've been thinking of the five stages of grief (Kübler-Ross) and it feels as if I have been going through the first four (denial, anger, bargaining and depression) all at the same time at full force. I am still lingering with anger and obviously lots of bargaining (like: as long as I don't lose my hearing and my eyesight, I'll suffer the vertigo and the roaring in my head, wait, no, take away the roaring as well please) but there is no 5 waiting for me (acceptance) and well, let's see.

05 July 2010

Sunday drive

We drove into the hills yesterday and I managed to go for a short walk - nervously at first, after all we used to go for proper hikes and here I  was resting after the first five minutes and we carefully turned back after a short distance. But what a joy! I had this urge to open my arms wide all the time whispering the names of plants and trees as I walked past: buttercup, hazel, sorrel, red clover, nettles, dandelion...