mostly lilies

day lilies

A few cool days. But no rain. The garden looks shaggy, I pick up dry stalks, pull out plants that didn't make it. Others don't seem to mind the lack of water. We need to make changes. Smaller leaves, deeper roots. Two days ago, I furiously watered the lot, it took ages. Too late for some anyway.

white agapanthus a friend brought from Madeira

My father talks about the dry summer and I can hear the concern in his voice. Something he rarely shows and never about people. But land, dairy farms, rivers, aquifers, forests, even after 30 years of retirement, all that matters so much to him. We also talked about the tennis and the soccer worldcup or rather, he did because what would I know about that anyway.

tiger lilies

After much deliberation and a couple of angry painful nights, I increased my medication last week without consulting the expert. Today I lost my nerve and called in to my GP and she waved all my concerns away with a brisk smile and a couple of reassurances and, don't worry, it's still a low dose and why don't I give you a sick cert. Which I declined and she shook her head in sorrow.

purple heart lilies

Let's face it, I'll never be rid of cortisone - no matter how careful I am tapering the stuff - and my digestive system will never fully recover.

happy tansy

I have been eating comforting bland porridge, crunchy plain toast and delicious alphabet soup (from a packet) for the last couple of days, topped with probiotics, and just one slightly milky cup of coffee. Surely, something good will come of it.

queen feijoa

But hey, I can move my hands, fingers and feet with considerably less pain, sleep without colics waking me at all hours and the mouth ulcers are in the single digits again. This is the life!

ecchinacea

I intend cycling to work by Thursday or maybe even Wednesday.

trumpet vine

Last night, we went to hear Joan Baez sing on a small island in the river. A scenic location.
Sometime two days ago virus no. 125 or maybe 525 had caught up with me and consequently, yesterday was pretty gruesome but by early evening I took one of the forbidden ibuprofen and told R told me to get a move on.
I have never been a true fan of Joan Baez and folk music gets kind of tedious after a while but I was hoping for encouragement, some kind of message on endurance and hope from a 78 year old artist and veteran civil rights activist.
Instead, I felt melancholia, nostalgia, loneliness even, sitting there in the crowd on our 3000 small chairs on the lawn by the river, like good children at assembly. There was a high wind rustling in the poplar trees and occasionally, the tuktuktuk of a passing river barge. Of course, she was a commanding presence but I felt such loss and when as a second encore, she sang "Where have all the flowers gone" (in German), I wanted to leave, I felt so sad. Walking across the bridge with the sky darkening so beautifully above the river, her last song ("Imagine") felt like a bad spell following us and I wanted to shout, this is getting us nowhere, enough.
I hadn't eaten since lunch, that plus the virus, who knows.

Early this morning it rained, gently. Like a whisper and then it was over and the birds, reinvigorated no doubt, began their show in earnest and at full volume. From an open window down the road I could her my neighbour calling for help as she does every morning. She still looks as stunning as she did when we moved here so many years ago, the short Jean Seberg haircut and the stripy Breton shirt, tanned legs and elegant long arms. But her posture is that of a small bent woman, Alzheimer's disease does that to a person, and she barely looks up when someone from her devoted family brings her for a walk.

I listened to her for a while, trying to send her my best wishes, and made my mental list for the day, my list of all the tricks I intend to pull out of the bag to ignore my aching hands and feet, to play the game of being energetic and full of purpose. A game I play entirely for myself. There's no fooling R who carries the breakfast tray out to the patio table while I trudge along with the breadbasket.

The heat wave is over for now and today was a perfect summer's day. I slowly worked my way through my list, cleaning the bathroom, hanging out laundry, making the peach and star anise tart from the Chetna Makan book and watching R digging up carrots and potatoes. After lunch, we sat outside under the big umbrella looking through the family tree he has been working on with his older sister, reading about  James and Patrick and Theresa and another James and another and several more Patricks and the many Desmonds and Peters and Marys and so on. Stories of emigration, foreign and domestic careers, dead infants, death during childbirth, poverty and riches. At times, we laughed but mostly we sat there thinking of these lives, these losses, the hardship, the courage.

And now, the ibu has delivered the expected results in my digestive system (whereby system is an euphemism, let's call it chaos, or hell) and has sent me to lie down with a hot water bottle, reading and thinking.

We carry our burdens on our backs, in our stomachs, in our hearts. We carry the burdens of those who hurt us, those for whom we are responsible, those we’ve lost.

(from a beautiful essay by Amy Scheiner)

breakfast with a teacher

It so happens that R is not only my gardener and my cook but also a science teacher. Last month was our 37th wedding anniversary, BTW,  and that makes him my personal science teacher. Never mind that he is officially retired because, once a teacher always a teacher. There are moments when for me, this translates into once a stroppy student always a stroppy student, but as a lifelong proponent of positive affirmation, he just ignores my antics.

Anyway, breakfast. Outside under the pear tree.
Out of the blue, he tests my knowledge about genotype and phenotype and I bullshit along, mumble something about genotype + environment = phenotype* and so on for a while, waiting for the punch line - knowing full well that he is onto something but wants me to figure it out (see above: once a teacher . . .).  OK, he lectures on in his benign teaching voice, so what do you know about the extended phenotype?
I am in deep water here because biology is not my forte and bullshitting only gets you that far. But I remember something he mentioned a while ago and I reply, oh you mean that stuff about the brainwashed ants climbing trees for the fungus? Yep, he says, that's an excellent example.

 **Ophiocordyceps unilateralis, the zombie-ant fungus (. . .) infects a carpenter ant, (. . . ) grows through the insect’s body, draining it of nutrients and hijacking its mind. Over the course of a week, it compels the ant to leave the safety of its nest and ascend a nearby plant stem. It stops the ant at a height of 25 centimeters—a zone with precisely the right temperature and humidity for the fungus to grow. It forces the ant to permanently lock its mandibles around a leaf. Eventually, it sends a long stalk through the ant’s head, growing into a bulbous capsule full of spores. And because the ant typically climbs a leaf that overhangs its colony’s foraging trails, the fungal spores rain down onto its sisters below, zombifying them in turn. (more here)

I didn't quite use all these clever words, but I passed the exam.

But let's take this a step further. Consider the Earth. We humans have been identified as a virus and so, quite naturally, the earth is producing antibodies and stimulating a fever to rid itself of the disease. 
Humans are like any other organism, e.g bacteria, with access to an almost abundant energy source — in our case, fossil fuels. 
By the time we run out of energy and resources to exploit, our population will crash back to something manageable or die off completely. We are the zombie ants.

How stupid is that compared to the clever fungus. And I don't mean we should enslave ants but good grief, what are we thinking!? Where is the extended phenotype when you need it?

Our problem is the fact that we continue to convince ourselves that since we have all sorts of meaningless gadgets we are special and above such natural processes and that describing our violent and cruel ways of trampling around on this planet with the word 'civilisation' means we are onto some sort of noble path. 
We call it progress and think it's normal to be able to buy foods from all over the world when we fancy them and then throw them away when I forget to eat them, to (insert your favourite non-sustainable activity here).

And we all know that this cannot last forever. We pretend we don't, But We Do. Don't tell me you don't. We are skilled in creating delusional thoughts. Anything to stave off the forecast of a much poorer and more vulnerable way of life, while (just look!) nearly every other human’s life on Earth, now and throughout history, has been poorer and more vulnerable than ours. 

The hardest part of this is, really, that we know, WE KNOW, how to solve this. 

(Remember: 1. It's warming. 2. It's us. 3. We're sure. 4. It's bad. 5. We can fix it.)


* https://pged.org/what-is-genotype-what-is-phenotype/

Chinese trumpet - incarvillea

The temperature has dropped a teeny weeny bit today and we had approx. 200 drops of rain this morning which rapidly evaporated on impact.

Yesterday evening just before sunset we headed out on our bicycles to see the river and collect large amounts of sweat everywhere on our bodies. It was nice, the sky turned pink and everybody was down there, dipping their feet in (it's too dangerous to swim in it) and watching the boats go by. On our way home we tsk tsk tsk at the guys watering their front lawns because we felt smug. Back home I tipped a couple of buckets at the berries and a few select vegetables and flowering plants but told the trees to dig deeper with their roots because, tough.

When we bought this house 20+ years ago, we were basically broke but managed to persuade the mortgage bank to include finances to cover costs to install thermal and pv solar power on the roof and a rain water collection system.
The two slim thermal solar panels (6sqm) produce all our hot water from April to October and some of it for the rest of the year, the pv panels (12sqm) produce most to all our electricity when the sun is up (yes, even when it's cold and cloudy) and we feed the surplus into the grid and get paid for it. In the early days I would stand in front of the meter thinking what fools we had been waiting and dithering endlessly discussing costs while all the time the sun has been there providing free electricity.
Endless. Free. Electricity.

We collect all rain water from the roof of the house into a tank that sits below our lawn and that is connected to a small pump and filter system that feeds our toilets cisterns. If there isn't enough rain, the usual water supply takes over - you have no idea how many of our visitors are worried about that aspect.
That was a big headache with rules and regulations and water fees and we had to install meters which we regularly forget to read and I think we are in the bad books because of it but the city officially is all for sustainability so we have escape fines for now.

Next tasks - and believe me R is working on it because he basically will not shut up about it and serious guys with clipboards and tablets have been calling - include storage of the surplus energy for the night, feeding the radiators in winter with thermal solar energy and dancing for more rain.

greetings from the European heatwave

Many years ago, almost in another lifetime, while preparing to disembark from the plane that brought us to Delhi, the pilot warned us to mind our step on the slightly molten tarmac (this was before the invention of passenger bridge tunnels) as the temperature outside was 48° Celsius. My seven year old daughter let out a little yelp of excitement and we walked out hopped onto the soft squishy surface and into the dry Indian heat with all the nonchalance you acquire after living close to equator for several years where seasons are marked by the direction of the wind rather than a drop in humidity of even temperature. 

hazy spuds

We are no way near this, of course. I only mention this family anecdote to show off how we can do heat.

Admittedly, it is hot. Especially in the evenings when the wind drops. AC is not a thing in private homes here. It's all down to keeping the heat out which is not too difficult in these boring proper energy efficiency regulated buildings with triple glazing, brick walls, cool basements and insulated roofs - and blinds. I love the smooth swishing sound of the blinds going down when the sun climbs over the hedge.

We also have a total of three ventilators, which we move from room to room.

herbs gone wild

At night, we open all the windows and wait for the cool night air to arrive while we drift off to sleep. I love open windows at night. For one thing, nightmares can escape so much faster, escaping in a silent whoosh. But also, the birds. They wake me at five and thanks to them I am up and showered and with my first cup of tea on the patio by six, reading the news. And I arrive in my office before eight after cycling through the magic forest. All before the heat starts in earnest.

The office is another story. In theory, the building I am in is top notch energy efficient, designed and built according to the latest renewable whatnot's requiring no CO2 gobbling AC. Unfortunately, inside we are surrounded by gadgets such as computers and scanners and printers and monitors and all their latest offspring, which all produce heat. But - as we all agreed this morning while we were fighting for the best position in front of the one and only stand-alone fan - we cannot cheer the school kids striking for action on climate change one week and demand AC the next. Surely not. Definitely not. Not us. (Occasionally, we sneak into the research lab freezer room - purely for comparison.)

 So far so good. I'll report back when the garden has dried up.

Singing the dolphin through

Greetings from la-la-lily land, the secret boudoir of the queen of Sheba, aka the garden just after midsummer.

This morning as I hung up the freshly washed sheets to dry in the garden I could feel the wind changing direction and within minutes, the air got hotter and drier. We've been told and warned from all sides about this heat wave, hot winds from the Sahara, possible new temperature records and so on.

The weekend edition of our local newspaper was completely dedicated to climate change, all sections, politics, sport, business, local news, culture, travel, gardening, even the tv critics and the ads were on it. We read it silently, shoving the pages to and fro across the breakfast table on the patio.

A bird flew into the sitting room as we were reading, a young robin. She blended into the carpet so well it took us a while to find her. Come on, sweetheart, we whispered, here, here, this is the way out. I like to think she left reluctantly, that she wasn't quite finished exploring. For some time, she sat in the pear tree just beside us chirping her message we could not understand.

This summer I have seen exactly two butterflies in the garden but the birds are abundant. A woodpecker comes every evening to hammer away at the string of peanuts hanging on the bicycle shed. He is completely unimpressed by our presence and last night, R managed to walk up right next to him. He continued to hack and bang and then he shrugged, at least I like to think that, he shrugged us off and flew away in a long low swooping curve across the garden.

Soon it got too hot for my taste and I sat at my desk editing some manuscripts for a while, whispering encouraging words to my stuck-up intestine (I am on my second round of antibiotics for the year thanks to immune suppression and sneaky E. coli).

Later I cut my fringe - almost expertly - and snuggled up on the bed reading The One Inside by Sam Shepard, laughing and crying a bit and I realised how sad we are, how lonely and sad.

And now it's almost evening. The temperature has soared another few degrees, the wind is hot. The climate activists who had been blocking the coal mines not too far from here have all been arrested and/or removed. R is cooking downstairs listening to Manfred Mann's Earth Band.

we can fix it

. . . the narrative that has both driven and obstructed the climate change conversation for the past several decades (. . . ) tells us climate change could have been fixed if we had all just ordered less takeout, used fewer plastic bags, turned off some more lights, planted a few trees, or driven an electric car. It says that if those adjustments can’t do the trick, what’s the point? The belief that this enormous, existential problem could have been fixed if all of us had just tweaked our consumptive habits is not only preposterous; it’s dangerous. It turns environmentalism into an individual choice defined as sin or virtue, convicting those who don’t or can’t uphold these ethics.

Climate change is a vast and complicated problem, and that means the answer is complicated too. We need to let go of the idea that it’s all of our individual faults, then take on the collective responsibility of holding the true culprits accountable. In other words, we need to become many Davids against one big, bad Goliath.

We need to broaden our definition of personal action beyond what we buy or use. Start by changing your lightbulb, but don’t stop there. Taking part in a climate strike or showing up to a rally is a personal action. Organizing neighbors to sue a power plant that’s poisoning the community is a personal action.

Voting is a personal action. When choosing your candidate, investigate their environmental policies. If they aren’t strong enough, demand better. Once that person is in office, hold them accountable.

Mary Annaise Heglar

It is important (. . .) to take care of your body. You have to have pleasure, joy and humour in your life, otherwise you just become bitter and full of sadness. Nature is critical, dance is critical, sex is critical.
Pleasure is what fuels us. Sometimes when we are doing this work, it can feel like we are not allowed to feel anything but pain, yet having done this work for a long time, if you want to keep going you need to have joy, as that’s what will keep you motivated to go back.

Eve Ensler

There is no way around this is horrible. There are things to do. Draw together with people you love, work hard at making spaces, times, networks in which our ideals and values prevail, reach out for the vulnerable, and pitch your tents big (. . .). Love is what you have, and generosity, and imagination. What we have.

Rebecca Solnit

Somewhere along the lines, over the years and so on, I lost the capacity to blame someone, something for the unhealthy mess I am in. 

Auto-immune disease, it spells it out, doesn't it. Especially to someone who had to spend five boring years in secondary school learning ancient Greek. 

Because, auto, that tiny innocent prefix, means "self".

In my younger years I was quite skilled in finding blame elsewhere. My mother taught me. She was the expert in finding blame - there was The War, obviously, then the cruel occupying forces, the lack of decent contraceptives (if only the pill would have been available to me, one of her favourite sentences when we failed to entice her), I could go on. And yet despite her so fervently despising us, her offspring, she taught us that we were beyond blame, much too superior, too intelligent, too gifted to be made responsible for things going wrong on our way to greatness. My mother's children never made mistakes. It was simply impossible.

This indoctrination does something to you when you are a teenager. It makes you despicable, is what it does. Angry, haughty, sarcastic and ultimately, very lonely.

It was the driving instructor who cut me down to size, who stopped the car abruptly after I had once again blamed the driver of the other car for whatever it was that I had missed. If you can't accept your mistakes, get out, he said and waited. For a while. More than 40 years later, I still feel the wave of shame and recognition all the way to the pit of my stomach, while I fight back the tears. 

Anyway, that was a start and years later, I could say to my child, many times and in so many different ways, face your mistakes, go and fix this, you can do it. You will feel so much better afterwards.

And yet, the urge is still with me. If only I could find someone, something to blame. 

But: auto, meaning "self".

Something completely different but nevertheless on my mind requiring urgent answers: swifts, could their swooping and swaying up there in the high cerulean summer sky be happiness, are swifts happy or is it just exercise, feeding, survival?

a first

The four moons of Jupiter are Io, Europa, Ganymede and Callisto.
I just spent a good long while staring at them through a set of binoculars. I mean, not just Jupiter, but all four moons of Jupiter. In a neat diagonal line, Callisto, Ganymede and Europa to the left and below, while Io is slightly above to the right.
We are nothing, we are only stardust.

some as-yet-unimaginable form of future human flourishing

It's a glorious morning and we are sitting outside in the shade waiting for the sun to hit us, it will be a hot day. I am babbling away about my weird dream last night and the bits of headline news that interest me. R is hiding behind sunglasses. I know he is trying to read but occasionally, he looks up and mumbles a polite reply. This is how we do breakfast.

I mention something I read about seaweed and eroding equatorial beaches because we used to live near the most stunning equatorial beaches for a while and he tells me about sea urchins' reaction to a warming ocean (not good) and somehow this exchange happens:

R: What causes population growth?
Me: Poverty.
R: But population growth causes poverty. (Careful. He is testing me, ever the teacher.)
Me: No. People have many children to survive in hard times, not the other way around.
R: But wealthy people also have lots of kids.
Me: Not to that extent.
R: So what causes poverty?
Me: Injustice.
R: What causes injustice? (Careful, he is testing me again.)
Me: Capitalism.
R: What causes capitalism? (Here we go.)
Me: Greed.
R: What causes greed? (That man knows not when to shut up.)
Me: A feeling of superiority, entitlement . . .
R: What is the cause of that?
Me: Religion.
R: (Big sigh.) You mean the institution that condemns birth control?
Me: Touche.

We leave it at that and wander off into the garden. I inspect the blueberries and note that they could be ripe by the time my grandchild will crawl on this lawn later in the summer. We pick raspberries and sweet peas until our hands are overflowing, stuffing them into tshirts and pockets, too lazy to go inside and get a bowl.

I busy myself with the tedious small tasks that keep me from thinking, briefly considering washing some murky looking tiles, but no. Instead, I diligently do my physio exercises and check my inbox and schedule a few assignments but oh heck, eventually I walk back outside and pick up the magazine R was reading, still open at the page where he was before he started his testing spiel.

The next 30 years are likely, instead, to resemble the slow disaster of the present: we will get used to each new shock, each new brutality, each “new normal,” until one day we look up from our screens to find ourselves in a new dark age—unless, of course, we’re already there.

Consider everything we take for granted: perpetual economic growth; endless technological and moral progress; a global marketplace capable of swiftly satisfying a plethora of human desires; easy travel over vast distances; regular trips to foreign countries; year-round agricultural plenty; an abundance of synthetic materials for making cheap, high-quality consumer goods; air-conditioned environments; wilderness preserved for human appreciation; vacations at the beach; vacations in the mountains; skiing; morning coffee; a glass of wine at night; better lives for our children; safety from natural disasters; abundant clean water; private ownership of houses and cars and land; a self that acquires meaning through the accumulation of varied experiences, objects, and feelings; human freedom understood as being able to choose where to live, whom to love, who you are, and what you believe; the belief in a stable climate backdrop against which to play out our human dramas. None of this is sustainable the way we do it now.

Nevertheless, the fact that our situation offers no good prospects does not absolve us of the obligation to find a way forward. Our apocalypse is happening day by day, and our greatest challenge is learning to live with this truth while remaining committed to some as-yet-unimaginable form of future human flourishing—to live with radical hope. Despite decades of failure, a disheartening track record, ongoing paralysis, a social order geared toward consumption and distraction, and the strong possibility that our great-grandchildren may be the last generation of humans ever to live on planet Earth, we must go on. We have no choice.

Roy Scranton in: MIT Technology Review, May/June 2019 
(I urge you to read this essay, free online, it is not all hopeless. Don't be afraid. We need to face reality. We owe it our children. And if you don't have children, think of your best friends' children and if your best friends don't have children, just do it anyway.)

I sit there for a while, catching my breath. For a long long while. Sweat is running down my back, my joints ache. To hell with it, I mutter.  This is only the beginning. I am in.

gardening as an instrument of patience

eremurus (foxtail lily) is the queen

fennel, we love fennel

fresia, a bit shy this year

the busy greenhouse

lilies getting ready

something South African

onions and carrots love each other

the spuds

the rambling rose

tomato blossoms . . .

. . .  turn into tomatoes

and the zucchini will do the same

maybe too many links

But what will the world do, ( . . . ) if we can't solve the problem of the millions and millions of people  with no home to go to or whose homes aren't good enough, except by saying go away and building fences and walls? It isn't a good enough answer, that one group of people can be in charge of the destinies of another group of people and choose whether to exclude them or include them. Human beings have to be more ingenious than this, and more generous.

Ali Smith


This picture.  I actually took a photo of a page from the weekly colour supplement of our newspaper. (The photographer is Mattia Balsamini, he has the story here on his website.)

 

What do we see here?  

Again from the photographer's website: "On April 18, 2015, a ship sinks on its way from Libya to Europe. 528 bodies are recovered from the wreck a year later. A team headed by forensic scientist Cristina Cattaneo collected and catalogued all items on the wreck."

You can read about Cattaneo's work here and here.  I hope you will.

So this particular picture shows us the contents recovered from a young man who drowned that day: three crosses (two Coptic) and three small plastic bags of soil. Soil from home. Home soil. Holy soil, maybe. 

It's the small packages of soil that stun me. A feeling of loss almost. And for a moment I cannot speak and need to look around me, listen to familiar sounds to find my bearings again. It seems that all the dear people, the hopes, the dreams, the things that I have lost (throw my health into that bag, too), nothing comes close to the loss this young man may have felt holding these bags of soil close to his body on some godforsaken ship about to capsize. But maybe he didn't know it would capsize, maybe he was just waiting for the awful seasickness to abide, for a shore to be within reach, dreaming of friendly European faces to welcome him. He would have been in for a shock. 

The Coptic crosses identify him as most likely Eritrean or possibly Ethiopian. You can read about the human rights situation in 2015 in Eritrea here and Ethiopia here.

And now I ask you to have a look at this link.  This is the crew of a rescue ship, Iuventa. A ship that was chartered and organised by a youth organisation from Germany, because:

When people were drowning in the Mediterranean we knew we had to act. So we went out to sea and saved 14,000 lives.

Since then, the EU has stopped all rescue mission, whether organised by European navy ships or NGOs. Instead, all the EU allows now is for helicopters and observer planes to spot migrant ships in distress and to watch the people drown. Watch. People. Drown.
The crew of the Iuventa has been accused of aiding and abetting illegal immigration into Italy, their ship has been seized by the authorities in Sicily.

I was 15 when I learned in school about the ancient Greek concept of xenia, (generosity and kindness to anybody far from home) and the god Xenios (aka Philoxenon or Hospites but basically Zeus in yet another disguise), the revered patron of hospitality and protector of guests, the avenger of wrongs committed against strangers.
Some years later, in sociology 101 at university, were given an essay by Hannah Arendt to discuss. The consensus then was, of course, how great and magnanimous the free world has helped the persecuted of WWII. We agreed, of course.
It's worth reading that essay again. "We refugees", she called it. But it's long, so just a quote:

Our optimism, indeed, is admirable, even if we say so ourselves. The story of our struggle has finally become known. We lost our home, which means the familiarity of daily life. We lost our occupation, which means the confidence that we are of some use in this world. We lost our language, which means the naturalness of reactions, the simplicity of gestures, the unaffected expression of feelings.

Then there is this story by Wade Davis that I wrote about several years ago (here) when he and his team were travelling by Jeep from an outpost in the Sahara desert and met a caravan of six men and 12 camels transporting salt. The men had been forced to stop in the desert to dry out the salt before continuing their journey. They were down to their last quart of water, 150 km from the nearest well with a cargo and animals that represented the entire wealth of their families. They had sent one of their young mates with one camel to find water. Davis continues:

While we waited for their friend to return, the leader of the party kindled a twig fire and with their last reserve of water offered us tea. It is said in the Sahara that if a stranger turns up at your tent, you will slaughter the last goat that provides the only milk for your children to feast your guests. One never knows when you will be that stranger turning up in the night, cold and hungry, thirsty and in need of shelter. As I watched him pour me a cup of tea, I thought to myself, these are the moments that allow us all to hope.

I leave you with this:

But masked gods walk among us as a test
for hospitality’s a sacred duty
binding all who claim morality

 Ian Duhig 

Definition of antibody: any of a large number of proteins of high molecular weight that are produced normally by specialized B cells inside an individual's body after stimulation by an outside antigen and that act specifically against this antigen in an immune response to the benefit of the individual

Definition of autoantibody:  an antibody active against a tissue constituent of the individual producing it

Every so often I am encouraged to  fight or at least make peace with this autoimmune disease. Best intentions etc. I am not complaining and I've long stopped responding. Generally, people mean well.

One of the perks of working in a medical research facility is that from time to time I get to watch the experts when they check my blood samples. Most of the routine parameters are done by machines, a long line of humming equipment, robots, but the tricky ones, like autoantibodies, have to be assessed in person by at least two people. It's a complicated process of sample dilution and electronic microscopy and control tests and seriously, I haven't the slightest idea how it actually works.

First the shock of realising that these light and dark green blobs displayed on a large monitor in a darkened room are actually incredibly minute parts of my white blood cells and that the two people in the room with me can determine my state of health - at least one aspect of it - by looking at them. 

Then the realisation that this is neither an alchemist's workshop nor a witch's coven. Nobody is whispering spells. Instead, careful observation, comparison, determination, measurement. But my blood, nevertheless.

It can be almost uplifting to watch, to follow the cursor outlining edges and highlights. My blood. And yet, I am still at a loss.  Where others see proof, I see green blobs. (BTW, this image is not of my actual blood, it's a training picture.)

I had a hard time with some of the childhood illnesses. To some of the experts this is yet another indication of something or other connected with an autoimmune predisposition. Not that it helps.

When I was eight years old, I caught a triple whammy (mumps, chicken pox and croup) and - so the story goes - was ill for weeks. When it was suggested that I should be in hospital, my mother did her not-over-my-dead-body act and as a result, an elderly doctor, a friend of the family, would come every evening with his elderly wife to administer an injection of penicillin. The elderly wife was meant to calm me with story telling and singing of songs. To this day I have a vivid image in my mind of me kicking and screaming with a hoarse voice while several arms are holding me down.

I recovered. Walking was hard at first. I was a skinny rat and needed a strong hand to hold on to for a short while. This of course has long become part of my family's folklore, at times used to highlight my weakness, other times, my strength and above all, my mother's despair and dedication.

When I was 16, I got the measles. It was quite embarrassing when my boyfriend-at-the-time looked at my face and said, yuk. That was on the evening of a trip to Berlin. I had won this trip in an essay competition. At the time, every teenager worth their wild dreams wanted to go to Berlin and mix with the anti-establishment crowd. But trips to Berlin were complicated in the cold war years of the 1970s. Berlin was a fortified, divided city under the administration of the four allied forces who won WWII. Getting there involved permits and lots of regulations from vaccines to hard currency and most importantly, a neat appearance both in real life and on the passport picture, then a slow bus journey on one of the transit corridors cutting through East Germany and long hours of border checks.

It was deemed important for all Germans to somehow be connected to Berlin and the authorities, German and allied, came up with all sorts of ideas to entice the right people to visit and defy the image of West Berlin being a beleagered slice of a city surrounded by an iron curtain.

In my family, it was a difficult and emotional subject because, while she had family and history in Berlin, my mother could not get a permit to travel. This had to do with the infamous Lastenausgleich, a post WWII programme intended to recompense for material losses, e.g. my mother's childhood home in East Berlin, but opening badly healed scars and considered fraught and unfair by many incl. my mother. Long story.

Winning this essay contest was a bit of balm on my mother's wounded soul. So to speak. And I messed it up. As usual.

The boyfriend-at-the-time had come to see me off to Berlin, somewhat jealous, and in view of my glaringly obvious unfit state he quickly spread the news that not even a prize winning essay could save me from looking like a rotting pumpkin.

So, the measles, followed immediately by pneumonia, kidney inflammation and gastritis. My mother moved me into my parent's bedroom and the entire family suffered from lack of sleep for the weeks it took me to recover. Also, I missed two exams but the glorious essay saved me from having to resit. I don't remember what the essay was about - nothing momentous - and the boyfriend fell by the wayside.

My point: I did fight. Then. These were battles I knew I could win provided I worked hard. On every level, even the cellular.

This one, no. I haven't a hope.

As for making peace, why? With whom, with what?

Instead, here I am, exhausted, searching for comfort looking out from the patio doors across the garden, peonies, roses, iris, a freshly cut lawn, all glorious in the sunshine. 

I take a deep disciplinary breath and get on with it.

Yesterday, after Sunday lunch I walked down to the primary school around the corner to vote in the European elections. I've been casting my vote there for the past 20 years, in local, national and EU elections and yesterday, for the first time, there was a long queue. A long, young and cheerful one. In front of me were two young guys who had arrived on skateboards debating whether to leave the boards outside or not. I told them to go right ahead and bring them along, skate in if you have to, I said. As we got talking it turned out only one was eligible to vote, the other - two days short of his 18th birthday  - had come along "for the vibe" and I almost hugged him. Both, the massive increase in turnout and in the votes for climate action are encouraging.
I want to be hopeful.

And yet, I started to read the diaries of Victor Klemperer again. I made a deal with my father, that we read this in instalments every morning and then talk about it whenever we feel like it but at least once a week.
The idea was - initially - to get him interested in something else beyond soccer and the weather but also because we did this ten years ago - only he cannot remember that we did.

Klemperer, a German Jew, was a lecturer in Romance languages at Dresden University in 1933 and kept a detailed record of events right from the onset of the nazi terror. (Abbreviated versions of his diaries are available online in English here.)

This is from April 1933 (the nazis came to power in January of that year):

Every speech of the Chancellor, the Ministers and Commissioners - and they speak every day - such a brew of the most open, clumsy lies. Hypocrisy, phrases, nonsense. And always the threatening, the triumphant and the empty promise.

 And here, in June 1933, he is referring to friends:

In the evening, after a very long break, Mrs and Mrs von R come to visit. She says she simply cannot cope with all this anxiety and wants to go somewhere where there are no newspapers. When she hears my outrage, she says she does not want to know what's really going on here.

Sounds familiar? In the first quote, replace "speak" with "tweet", if need be and as for the second quote, remember, this was in June 1933, just six months after hitler seized power - long, long before the real atrocities set in. Looking away always feels easier.

pink clematis

We met the latest member of staff at the immunology department last week, a Greek doctor, very polite and ever so well dressed in his starched white coat, silk tie and blue argyle socks. My guess is he is probably not a day older than 35. But in my experience - and there is research to back this up - young experts who want to get ahead and become senior experts work hard to stay on top by reading, attending conferences, checking with colleagues and all that stuff doctors are meant to do before the know-all rot sets in. 

This time, R came along because he had time to make sure I mention all the shit that's been happening and not be full of smiles and I-can-copes until the door hits me in my back on the way out. For this purpose and also to show off how organised he is, R had made a nifty list using some app on his phone and he basically read out all the items one by one in his gravelly low voice while I tried to pretend he wasn't there and that I was actually quite well and surely believing is seeing.

But our Greek expert was right on the ball and after some tsk tsk tsk and a rather painful examination of my hands and feet, he put me back on all the drugs his colleague had dropped so swiftly three months ago. Experiment failed? I asked. Afraid so, he replied.

Fun fact: If the joints in your hands and feet hurt at night when you are all rested and just try to sleep, it's called arthritis (-itis meaining inflammation), if they hurt when you move them but are ok at night it's called arthrosis (old age and wear and tear damage), if they hurt regardless of what time of day or night and whether you move them or not, it's called rheumatoid arthritis (which is another word for you-are-fucked). 

So basically, my immune system has become bored with the blood vessels and has moved onto joints and tendons. 

lemon

There is a pattern here. Because back in the day, in the summer of 2000 to be exact, it started with autoimmune hepatitis, something I decided to almost completely ignore because: disbelief and being arrogant and ignorant and convinced that all doctors are in cahoots with the pharma industry. I actually considered filing a complaint when after the first liver biopsy it was suggested that I put my name on the transplant list just in case. 

For a long time, I thought I had shown them all (them being the medical cahooters) how in tune I was with my body when my liver recovered after 18 months of healthy diet, meditation, no alcohol and some herbal stuff. I did not want to know that 18 months actually means 18 months of ongoing stressful damaging inflammation caused by a hyperactive immune system and that a swift course of steroids plus immune suppressing drugs, 3-4 weeks max., would have brought it back in line. Hindsight. Haha.

Anyway, the pattern: autoimmune hepatitis turned into ulcerative colitis turned into autoimmune  vasculitis and now rheumatoid arthritis. Even I can see that and I can be blind to facts like the next person. Plus: my liver values are slightly up again. My lung function is somewhat reduced and who knows what the cardiologist will find next week.

In short: I am slowly climbing down the steroid mountain again, reducing weekly in tiny steps, back on immune suppressing chemo etc. Yawn. Old stuff. 

no idea

But today is warm and mostly sunny and I am out on the patio, lazing on the sunbed R fixed for me, the beehives from my neighbour's garden are humming, I am reading and dozing (I am on official actual holidays from work), in between I wash a window or two, fold some laundry and pretend that all is well. 

Can someone tell me what this last plant is? The bees love it.

bronze fennel

With the way things are, I do believe we have to stop hiding from the facts and act our age and wisdom.  On most days at least. So yes, there are catastrophic events unfolding, huge damage, devastation, whatever we want to call it. But that has been going for a while, let's not pretend we were all in the dark. 

I for one have had enough of trying to avoid the issue. And I don't have enough words. 

Hence. The plan. Once a week or so I'll post a snippet, a quote, a fact, an opinion, whatever, that I find uplifting, comforting, scarily true, helpful or just correct. 

And to keep my feet on the ground, also something that is sad and devastating or plain stupid but needs to be shared. In my humble opinion.

Here we go.
The uplifting bit:

From an interview with novelist Richard Powers:

Think of all the things that give delight, and purpose, and meaning, to a person inside this individualist, exceptionalist, commodity-driven culture. Take them all away, with a kind of annihilating despair. And then start to replace them with certain things that seem terribly small at first, like the realisation that life will continue in the face of anything that humans can throw at it. Imagine a life where humans were still here – this astonishing thing that natural selection comes up with after four and a half billion years of tinkering, called awareness, consciousness – and say that too could be an integral component of the relentless, ubiquitous exploration of life as it postulates what can work here on Earth. If you can start thinking of us not as lords and masters, but as a kind of singular possessor of something that life is after, that can be put to the service of understanding, revelling in and promoting rich, stable ecosystems, then that is the first component of a dream of human habitation on Earth that would be full of meaning, that wouldn’t be at war with everything else that is alive.

The full interview is available on Dark Mountain, a cultural online and print journal that traces the deep cultural roots of the mess the world is in. 

The sad - almost laughable bit:

From journalist Sarah Miller checking out - undercover - real estate in Miami:

“The scientists, economists, and environmentalists that are saying this stuff, they don’t realize what a wealthy area this is.” She said that she lived here and wasn’t leaving, and that the people selling Miami were confident, and all working on the same goal as a community to maintain this place, with the pumps and the zoning and raising the streets. There were just too many millionaires and billionaires here for a disaster on a great scale to be allowed to take place. 

The full article is here.

The bronze fennel in the picture above comes back year after year in our little herb garden. We bought it on a very hot July Sunday in 2009 at the Columbia Road flower market in East London. Two days earlier, the British health authorities had decided to stop quarantining people with signs of the H1N1/swine flu infection, there were simply too many affected or suspected people. I still see my sweaty hands holding onto the handrail of a packed London bus, reading the posters on hand hygiene on the bus stop walls.

Four days later, I woke with a high temperature and joint pain that lasted for a week. While my family was convinced that I had brought the flu back from London, the tests put me in the clear. Instead - and it took five hard months of exhaustion to reach a diagnosis - whatever virus hit me that time, it triggered the rare chronic disease that has become part of my life. 

But believe me, the fennel is not to blame. It's a glorious plant.

The Lily of the Valley from the front garden.

It's still cold here, we turn the heating on and off again, sit in the sun between long rainy periods and basically wait for things to happen. Garden-wise. We just harvested the first radish today.
Most of the glory is still dormant, ready to burst. The spuds have just pushed up through the soil, the strawberries are little hard green marbles.

horse chestnut

This time of the year, the first weeks in May, is called the time of the Ice Saints, an ancient term, based on the irregular weather in early May when this part of the Northern hemisphere can have a cold spell with the odd frosty night. It's apparently coincidental but country lore is country lore and farmers' traditions go a long way here. Ice Saints because almost every day here is a feast day for a saint.  We've just had St. Mamertus, today was St. Pancratius, Monday to Wednesday are St. Servatius, St. Bonifacius and St. Sophie, or "the cold Sophie" - after that, no more frosty nights.

one lonely iris

Occasionally I panic a bit because things do not get  better and I am washed out
then I realise that I am not afraid of this illness anylonger and the rest is coping and not getting bored. I schlepp myself to work but the tiny voice inside my head keeps whispering retirement and sodd it. So I made an appointment with the pension consultant of my union. But don't tell!

The pink stripy clematis.

No idea what these yellow weirdoes are called, Any idea?

whatshallwecallit

asimina (pawpaw) tree blossom

woodruff everywhere this year

From now on, there is no happy end. Only the ends we make ourselves.

"Complacency has a recurring role in the annals of human miscalculation, and nothing breeds complacency like the familiar.

It is still possible for us to re-engage in a way of life not so long ago lost – adhering to an ecological budget, acknowledging codependency with other species, and elevating the shared responsibilities of humanity. To understand climate change not as a new environmental problem, but as the long-running interplay of all environmental problems, is to return to an immutable truth: the only way out is through the door we came in by. It is, for now, still open."

Brian Stone
found here

On a day like this, cold, damp, windy, it is easy for me to allow a sense of despair to take over. Here, in my life of luxury, where almost everything runs smoothly and a frustrating meeting at work is the only annoying thing of the day provided I don't look at the news. 

My father always complains about me being too impulsive, he detests it when I am empathic - whereas being emphatic is something he could support - because for him empathy is a sign of weakness. 

But this evening on the phone, we both despair somewhat, quoting bits of the UN global assessment report  on species extinction to each other. 

He for the fact that as an agricultural scientist he was involved in setting up what he now terms bad practice - never mind that he retired 30 years ago. Blind, ignorant, stupid, these are some of the words he uses.

Me for feeling helpless, exhausted, at the end of my tether. It takes a lot to turn a blind eye, to pretend that life is good, to feel cheerful about my young grandchild's future. 

Sometimes I wonder how long I'll be able to keep it up, this facade, hiding my fears and my sadness about our loss behind distractions and avoiding to look at things squarely.  I wonder how others are managing but shhhh, have you noticed how silent people become when you mention the words climate and catastrophe. How adept we all are to duck and act as if we don't understand a thing. And how good we have become to confirm our hopelessness and how quickly we find the words to express that we have given up.

Whereas R, he remains cheerful, he loves pointing out how species can adapt and how clever so many species are in doing so and that - well maybe - humans will figure it out as well. 

Despair is not a thing to be avoided at all costs, nor an end state. Neither is grief and the rage that washes over me, especially when I see how we sit back and pretend there's nothing we can do while having tasked our children with the burden of leading the world towards a safe, carbon neutral future. 

In a recent podcast, David Wallace-Wells said something similar, that we are an adaptable species that we will innovate and endure. And at the very end of a gruesome but important hour of listening, when asked for something a bit more uplifting, he mentions the sceptics who claim that, well ok, the warming is real but it's not human caused. 

And to me, he says, that's so much scarier because if we are seeing all these impacts and we had nothing to with it, we had no way of changing it - I mean, horror show. Thankfully, you know, we're in control. 

Listen! We've got this. We have. We will because nothing else matters from now on.

You can listen to the podcast here.

discuss:

"Women are born with pain built in. It’s our physical destiny: period pains, sore boobs, childbirth, you know. We carry it within ourselves throughout our lives, men don’t.
They have to seek it out, they invent all these gods and demons and things just so they can feel guilty about things, which is something we do very well on our own. And then they create wars so they can feel things and touch each other and when there aren’t any wars they can play rugby.
We have it all going on in here inside, we have pain on a cycle for years and years and years and then just when you feel you are making peace with it all, what happens? The menopause comes, the fucking menopause comes, and it is the most wonderful fucking thing in the world.
And yes, your entire pelvic floor crumbles and you get fucking hot and no one cares, but then you’re free, no longer a slave, no longer a machine with parts. You’re just a person."

Phoebe Waller-Bridge
in: Fleabag series 2, episode 3: Belinda's (played by Kristin Scott Thomas) monologue

 

The Tetons and the Snake River (1942) Grand Teton National Park, Wyoming. 

Photograph by Ansel Adams. National Archives and Records Administration, Records of the National Park Service. (79-AAG-1)

This image has been living with us for 30+ years in various sizes, as a poster, a calendar, a postcard, currently as a framed print. On the wall in paradise, facing you just as you came inside from the lush green tropical day, in our kitchen above the table where we eat, on a bathroom mirror, in the hall where appointments are recorded on a blackboard, above the piano in the sitting room and now on the wall in my study.

I went through a serious Ansel Adams phase with many more reproductions gracing our walls but this is the one that endured. 

I rarely look at it these days. It's of course stunning as ever. 

We like to think that it stays here on the wall because of the Golden Record. And the Golden Record is out there aboard the Voyager spacecrafts since 1977, now travelling in interstellar space, 18 billion kilometers from earth. You can track both spacecrafts online. 

One day it may arrive somewhere and who knows, the record will be watched and listened to, laughed or shouted at, understood or misunderstood.  Carl Sagan and his team, who assembled the contents, included lots of (to us) beautiful stuff: the sounds of wind, volcanoes, waves, thunder, birds, frogs and wild dogs. They gathered 115 images, including a woman breastfeeding, an x-ray of a hand, photos of seashore, sand dunes, fallen leaves, a tree with daffodils, a flying insect with flowers. Music by Mozart and Bach, Chuck Berry and Peruvian pipers, Georgian chants and Indonesian gamelan, Beethoven and Louis Armstrong.

And this photograph by Ansel Adams. 

Nothing about genocide, wars, nuclear weapons, plastic inside dead whales, melting polar ice caps, noxious pesticides, bleached coral reefs, gun violence and suicide bombers.

In any case, folks, we are ready. When the first arrivals from outer space walk into our home, they'll recognise this picture and we'll be off the hook. Hopefully. And once we are done with the greetings, there will be a lot to explain.

Meanwhile, I am still struggling with a congested chest and packed sinuses without any proper sign of actual infection/inflammation but exhausted like an old dog and extremely grumpy, increasingly nervous about autoimmune relapse and shit. After breakfast, I shouted at R - only once, I swear - and his endless reassurances about how this will pass and like a stubborn toddler, I shall go to work tomorrow, no matter what. I have long lost any concept of what being fit and healthy should feel like.