29 May 2019

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 autoantibodyan 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.

27 May 2019

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.

23 May 2019

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. 

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.

15 May 2019

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.

12 May 2019

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?


asimina (pawpaw) tree blossom
woodruff everywhere this year

06 May 2019

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.

03 May 2019


"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