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. 

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

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?
(Yes.)


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.

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.