31 August 2017

Sometimes, the most I can do is nothing.

As I have no god to plead to for mercy, I depend on human kindness and medicines. Once again, this fact leaves me dumbfounded most of the time. At night, I am woken by one or more of these: my rumbling intestines or bloated stomach, aching finger joints, dull throbbing sinusitis, the taste of bleeding gum tissue, my angry bladder, confusing thoughts, dreams too complicated and possibly too frightening to remember, a cackling bird, the binmen clanging the gates along the street, the tinny whirr from the headset of the newspaper delivery guy, gentle male snoring.

At night, my world goes through hard times, but I am only vaguely aware of it, while I carefully hold on to whatever remnants of dozing, sleepiness I can grasp, breathing slowly, relaxing my fingers and toes, anything to soften the full onslaught of whatever is out of tune, waiting to hit me, to push me over the cliff.

And then I wake and the daylight is soft and pink. The garden is wet with shiny dew, a flock of rose-ringed parakeets noisily breakfasting in the branches of the tall hornbeam.
I run my hand through a bowl of ripe greengages, each a sphere of sunlight and sweetness, testing for the softest, the most perfect one. All of summer is in that fruit, that shape, that colour, that taste. My daylight world is calm, I am in a safe, good place. Wonderful things are happening in my family. Love is all around.

Tomorrow, I will get up much earlier, to give myself time to prepare for a meeting to discuss my future as a working person, someone I want to remain but who I may no longer be and who the big important boss wants to be gone. I can already taste the bitter anger at the back of my throat when I think of facing him. But I know that this is not the way to do it. He has no power. I am protected, not only by labour laws but by being confident and alive.

That's the great challenge of my life, without promise of solution, the insight that I need all my strength to be weak. 

17 August 2017

This is no time to Count Your Blessings
this is no time for Private Gain
This is no time to Put Up or Shut Up

12 August 2017

Three years ago, I crossed the 5-year survival threshold reserved for 75% of people with my diagnosis. It meant nothing. Life ahead of me seemed endless.
(Still does.)
This summer, I have reached the half-way mark of the latest, statistically confirmed life expectancy. Do I care?

It has been raining most of the week or maybe only for the last two days, I lose track. Most evenings, we manage to fit in a short cycle along the river in between downpours, watching the fog rise from the small valleys on the other side. The fact that I have enough energy for cycling makes me so giddy, I forget to take pictures. Next time, I tell myself, there will be a next time. And one after that and many more and so on.

03 August 2017

In life, . . . , it's the luck of the draw, who you meet and when and how much you have left to give, and the point at which you say, To hell with everything, this is where I go the distance, this is where I stick.
John le Carré

02 August 2017

Sam Shepard

"When you hit a wall - of your own imagined limitations - just kick it in."

A late night in the early 1990s, I cannot sleep and move into the sitting room, switch on the tv and find myself in the first act of True West, John Malkovich's whiny voice while he picks his nose. I sit mesmerised through the kicking and fighting until the kitchen has been destroyed and the typewriter flung across the stage.

Before that, I had fallen in love with the actor playing Chuck Yeager, possibly because of the way he wore that leather jacket and his laugh. Then there he was Walter Faber and so much more than the man I had imagined when we read the novel in school. And obviously, he wrote this monologue. I don't remember how often I watched Paris, Texas because he wrote it but I am glad I did.

And now he is dead and how can that be. Playwright, actor, musician, magician, eternal cowboy.

"I hate endings. Just detest them. Beginnings are definitely the most exciting, middles are perplexing and endings are a disaster."

01 August 2017

A humid rainy day, thunderstorms on and off. We dawdle. It is very pleasant to dawdle on a humid rainy thundery day. Presently, I shall make coffee and grilled tomato and cheese sandwiches for lunch.

Before lunch, I usually persuade myself that I am fit and healthy and really should go back to work straight away. I organise stuff around the house, clean the shower and do all the physio exercises as instructed.
After lunch, I usually fall asleep for a while and dawdle some more until it's time to watch the next two episodes of the Spanish thriller we are hooked on right now. After about 30 mins of subtitle reading, I fall asleep again (I read the recaps online in the morning).

Meanwhile, R - on eternal holiday at last, he will now be 65 forever - is entering all my lab reports from hell into a massive excel spread sheet. He is an example of data entry diligence and soon enough will present me with the appropriate tables and columns and all the other graphics shit microsoft has invented for genius people like him.  Every night before sleep, I pray to all gods and demons of this and all the other universes begging to please please please always keep him healthy and happy. (Or at least for as long as I am alive. I am a selfish bastard.)

Yesterday, we stored the onion harvest in the cold frame on the patio. It was an easy task, R cutting off the chaff and me smoothing away any dry skins before placing them in neat rows inside the box. If we have two a day, we'll make it to November.  Later, in my favourite spot, stretched out flat on the patio stones, I watched the swifts in the sky and from time to time lifted my fingers to my nose to smell the fresh onion aroma, while across the road, my neighbour had a short argument with her son about his car running idle. They were yap yap yapping back and forth, she in Filipino, he in German. Ok, ok, he finally shouted, I'll do it, I turn it off, but just for you. And she laughed and replied, who else!

Earlier, the quiet young woman came to clean all our windows. She hummed and smiled as she moved through the house. My mother would not approve. Paying someone to do that kind of work. Tsk. Tsk.  The kitchen window boxes had to be replaced for a while.

A well meaning learned friend sent me a scientific article on gingival hyperplasia swollen painful gum inflammation as a sign of recurrence of granulomatosis with polyangiitis my shitty disease.
Ah well, I knew it all along. What's next? There are days when I can read that stuff like the next best person, research it further and get proper references and quotes, reassuring tables and figures and all. But then there are days when it makes me want to slam my fist into the wall and shout the house down.


Reading these two word: old paperbacks makes me feel happy.

Reading this, however, makes me want to cry:

Researchers find that economic, emissions and population trends point to very small chance Earth will avoid warming more than 2C by century’s end

Watching this short film, makes me think and wonder:

Listening to this song, makes it all better: