same old same old

Late this morning while we were cleaning up the breakfast stuff from the patio, R asked me why I was crying and I touched my face and yes, surprise, he was right. For a moment I was at a loss and then it hit me. I miss my child so badly, I said and then it was over, weird as it was. It is not as if she has suddenly vanished. I mean, she's been living far away for the best part of the last 15 years but we talk several times a week and as R says, she never shuts up, doesn't she.

Now I feel old. Actually, I am old. And ill. And a bit miserable. But other than that, it was a beautiful morning, clear skies, low humidity, bees and butterflies and birds, all the pleasant Sunday noises and so on. The extreme heat is supposedly going to hit us by tomorrow.

these beauties are flowering at last

So let's see. I've been sitting in a doctor's waiting room three, four, five times in recent weeks? I forget. Every visit was an example of careful attention, I have no complaints other than that I had to accept that, yes, this, these last couple of weeks of exhaustion and inflammations here and there and everywhere was a flare up and yes, steroids were called for. And people, cortisone is a miracle drug. If only it would not have all the side effects. The deal was for five days at high dosage and on day four, I was jubilant, no other word for it. Despite the stomach aches and the racing heart beat and the sleepless nights and the mood swings. Hence the tears, I think, but as of today I am coming down to normal grumpy me and keeping fingers crossed etc.

grapes ripening one month earlier than in recent years

When I am visibly unwell, English speaking people usually ask, what's wrong with you? And immediately, I could get all defensive and wish I could reply that there is nothing wrong with me, that - only - something went wrong with my immune system but that's it. 

I don't. I am polite and assume they didn't mean it, that social stigmatisation and - watch out: new terminology - ableism doesn't exist in my circle of friends.

(Ableism is defined as the discrimination of and social prejudice against people with disabilities, based on the belief that able-bodied people are superior. It is, at its core, rooted in the assumption that disabled people require fixing and, very importantly, defines people by their disability.)

The German terminology is somewhat different. Whether doctor or colleague, the question is: was fehlt dir? What are you missing/lacking? I feel looked after when I hear this. I do.

the covid patch gone mad

I know, believe me, that there are more important things in life than health. Of course, well-being is easier to achieve when there is no disease to worry about. To assume that health is the most important thing in life - this is an attitude only healthy people can afford. And I know that too well, I used to be one of them.

When you end up with a chronic illness, you figure it out, you must understand, eventually, that not life itself, but the conditions under which life takes shape are changed.

Or as one medical expert along the way told me ages ago, paraphrasing the words of Viktor Frankl: When you are faced with situations out of your control, you need to adapt to those circumstances. You need to find meaning in that situation. That is, to find what you can learn from it, and discover ways to carry you through.

apricot and cherry season, best of all

When I experience a flare up, I am lost at the very end of a seesaw, in the middle of which I try to balance most of the time. On the one side, the world of the healthy, with all the joys, banalities, tasks and adversities that life contains - all of which way out of reach. On the other side, the world of the sick, which is not necessarily darker overall, but in many ways very different. To achieve balance again and again and to figure out where I am right now, that is the skill - one that I will never fully master. 

Things can only get better. 

 

In no particular order, this happened in the last three weeks:

A short but massive heatwave.

For the second or third or possibly tenth time in my life, I had a dose of vestibular neuritis, aka inflammation of the balance nerve. It's all part and parcel of the weird autoimmune disease I have acquired ages ago. Basically, I acted and possibly looked like a drunken sailor in a heavy storm. Actually, no, make that a tourist, a non-sea worthy tourist, incl. some unpleasant emptying of stomach contents. It's exhausting but the euphoria once I was beginning to recover was probably not unlike what seasick tourists experience when reaching the shore. I am not quite there yet, small steps etc. I spent long hours listening to Louise Erdrich reading in her gentle voice The Night Watchman.

On Wednesday, the covid app informed me that I had spent an extended period of time in close contact with at least one covid-positive person two days earlier and that for the next ten days I should test daily, watch for symptoms and isolate. The close contact was at least one person at the ENT surgery, maybe even the doctor who examined me on Monday.  So far, I have no symptoms and all of the lateral flow tests have been negative. But apparently, I can still pass on viral load, i.e. be infectious, although I doubt that. Anyway, this new variant is a tricky fellow. 

For the last three days now I can walk without having to hold R's arm, I keep my food in the proper place and this evening, we even cycled a short distance - in splendid isolation - but afterwards, I felt like a train had run me over. 

The garden is a delight. 

 

 

Somewhere on my desk there is a piece of paper with the covid helpline of my employer, the opening hours of the free PCR testing sites at the university clinic (Monday - Friday) and instructions on what to do and what to mention incl. the information leaflet of my medication.

Two days ago, one of the regular rapid lateral flow tests I am obliged by my employer to administer at home showed a positive line.  I went downstairs and told R that I would not be able to go to the farmer's market after all. Instead, I drove to the nearest testing center to get a conformation PCR test, only they refused to do it because I failed to bring my lateral flow test as evidence. Instead, they did another rapid lateral flow test which was negative. Back home, I briefly dithered between being seriously ill and who cares anyway, but as it was not Monday - Friday, I decided to get on with life and take it easy - my usual weekend activity as it were. This morning I did another test, again negative, and I asked google for information on false positive results with that particular test kit and it turns out that this is a documented manufacturer's fault that happens when the sample size is too small.

I cleaned the bathroom, kitchen and hoovered the hall and staircase, baked a blueberry-lemon cake without icing, cooked Sunday lunch (red peppers, zucchini and mushrooms with fregula and parmesan), had one cup of coffee and went on my usual 10 km cycle along the river. 

Later, we will make tea and maybe have some grilled cheese on toast and some fresh strawberries and then watch the Sunday evening thriller on German TV and the late news.

The tendency to treat my imperfect existence as if it were a shadow of my real life, the one I would be living without a chronic disease, this mental image of my healthy self, it slows me down every time as if all people except myself are healthy and fit and have nothing to worry about.

When you are not one of the seemingly healthy, you need to work hard sometimes so you don't fall out of love with yourself as the illness tries again and again to run the show. At least I need to do that. Cycling, baking, strawberries, it all helps.

 

garden secrets

Yet another storm is brewing, the weather app is pinging and shouting. Again, we cleared the basement floors, tidied up the garden furniture, shut the green house and with any luck, it'll pass.

The skies on Friday were dramatic. But that was it. Not a single drop of rain.

Others were not so lucky and who knows what this evening will bring.

My new friends, a pair of wood pigeons, woke me at the crack of dawn. The have found a favourite spot in the almond tree outside the bedroom window, where they bicker for a while before cooing back and forth at length and at volume. I have decided to actually not mind this at all. Even at 5:30 am. 

the Robin rose

I had to get up anyway for my immunologist check-up. The new guy is very jolly and we agreed that not much has changed or needs to be done apart from more blood work to figure out the low iron levels and sure, why not, maybe see a phlebologist because of that markedly swollen right ankle etc. etc. We discussed the 30+ hrs travel (two stop-overs incl.) later this year with medication that needs to be kept below 5°C at all times. Not a good fit but there should has to be way. And in the end, in connection with one thing or another, I forget which, he uttered the fateful saying "never change a winning team" (in English) and I tried very hard to keep a straight face but failed. We then discussed at length the origin of this phrase (soccer) and how it found its way into medicine (he did recall an actual lecture with this title) and for the life of him, he couldn't see how a patient as tolerant as myself could find this inappropriate. I told him, he will get there over time and how silly sayings convey not a message that one can trust and that especially when saddled with a chronic illness, these stupid remarks don't get any better when one has to hear them repeatedly.  To cut him short, I uttered WTF (in English) which he thought was hilarious. And so we parted as friends.

ash, black cherry, rambling rose and mackerel skies

On my way back, cycling through the lushest of forest, I stopped at the frog spawn pond but failed to take a picture. As it was still before 10 am, I sat down for a café au lait outside at the French place and then got some of fancy tea, which is black Assam with cream flavouring and blue cornflower blossoms and a punnet of blueberries. My life of luxury.

This here is our covid patch, four square meters in a sunny spot we have left untouched in the bottom lawn since spring 2020. We just mow around it, never water it. Currently, it has about 25 different wild flower species in it, all humming with insects, one small walnut tree and a fat hedgehog moves through it at night. The secrets a badly tended lawn can bring forth. With the help of birds and squirrels and the wind.

 

Monday

 

The first warm day of spring
and I step out into the garden from the gloom
of a house where hope had died
to tally the storm damage, to seek what may
have survived. And finding some forgotten
lupins I’d sown from seed last autumn
holding in their fingers a raindrop each
like a peace offering, or a promise,
I am suddenly grateful and would
offer a prayer if I believed in God.
But not believing, I bless the power of seed,
its casual, useful persistence,
and bless the power of sun,
its conspiracy with the underground,
and thank my stars the winter’s ended.

Paula Meehan

Flowering fruit trees, bees pollinating, warm sun, lunch on the patio. There will be rain, maybe even some snow in the coming days. April.

To date, 1 500 refugees from Ukraine have officially arrived in our city, in the coming days, weeks, this number will go up to about 10 000, schools and kindergartens, youth clubs, hospitals, vaccination centers, churches, local community centers are organising language support, extra teachers, staff, volunteers.

As a result of one of my new year's resolutions (concentrating life's necessities to within cycling/walking reach) I walk to the new dentist. She also meets another resolution (switch to female medical experts), and she hums while she polishes and cleans. She laughs when I mention sage tea, yes, yes, the stronger the better, rinse every day.

My country's government is considering installation of a vast missile shield system, an iron dome. Our nation's elected leader explains on national tv during Sunday prime time why and how "we will not become militarily engaged there" and that "even if they are called peacekeepers, they are troops."  We try to consider this, R coming from a neutral country that was brutally colonised for centuries, I was raised in the country that brought about WWII and the genocide of 6 millions Jews. My sister-in-law, a pastor in the Lutheran church and peace activist, sends me links to anti-war songs, urgent petitions to sign, war resisters statements on non-violent solidarity. My child and her family live peacefully in an insignificant far away country.

Later, we bake the first rhubarb crumble, a bit too sour and too soggy but delicious as every year.

 

WTF

Spring, definitely, colourful, noisy and thanks to the winds from Africa, sandy. 

I am not well, what else is new. Yesterday, I gave a short presentation of a woman in her 60s who is fed up with chronic illness flare ups and the tedious pretense of remaining cool and calm. It was quite a performance, if I may say so, which was met with a solid round of applause from the one person who has seen it all over the years. Bless him.

I cancelled all appointments and tasks for the coming week which was supposedly a holiday week, with plans to climb mountains/cross the seas and have a haircut, obviously, and now I am blissfully resigned to listening falling asleep to podcasts and getting lost on the internets., while R has taken on my assignment for today, namely power cleaning the patio and greenhouse. He usually hates power cleaning and gave a little speech just now to tell me that he is doing this in exchange of me getting better. We shall see. 

So, here is what keeps me entertained.

More sheep and sheep dogs.

Stuff about dreams. Although I would have guessed, flying is on top of any list.

Human evolution, briefly:

 

 

Groundbreaking scientific findings: 

 

Benefits of swearing

Swearing in the physical therapy setting should be used to accomplish specific goals, such as relief from pain or stress. When swearing is based on biopsychosocial utility, it may add significant value if used correctly. Swearing tends to be more tolerated in private settings and among peers as opposed to a more formal and public setting. Swearing can lead to tighter human bonds and create informal environments where people are more likely to be themselves [3]. Social groups depend on some degree of shared willingness to participate in risks or taboo practices, swearing being one of them. In the physical therapy setting, an improved relationship or positive connection between a patient and a physical therapist, otherwise known as the therapeutic alliance, has been linked to improvements in musculoskeletal pain.

 It is advised to use a swear word that you would use in response to banging your head accidentally [15]. If no clear swear words come to mind, the S-word and F-word are the two most common swear words [8, 9] and were used by many of the subjects in the research showing the positive effects of swearing. There is evidence that a patient needs to use an actual swear word, not a made up or bad sounding word, to elicit the pain and physical performance improvements.

I can only recommend that you read the complete article, it's an excellent read, click here.

what else is new

Sunday is exhaustion recovery day, when I remain inside my dressing gown for a very long time. As always, I have made a list of stuff I want to do on the weekend, ranging from the sublime (baking, cooking, writing invoices for editorial work) to the ridiculous (clean bathroom, cut fringe, sort out fridge) and weather permitting, cycle for a bit before sundown. Weather is currently not permitting, we have storm force gusts of wind.

So far, I have managed to drink lots of tea while looking out into the middle distance, or rather the garden where the pigeons are mating aggressively. Also, one of the almond trees, the one closest to the side of the house, has started to bud and even produced a first few leaves.

Life is full of surprises. One of them is that I have to have yet another MRI. I could pretend it's fun, maybe I will. 

Of course there is the pandemic, we haven't forgotten that pesky virus. How could we. I am now double-boostered, as in four (4) jabs. Because contrary to what was believed a few months ago, the booster is not merely a booster vaccination that restores the number of antibodies that have evaporated a few months after the second dose. No. The vaccination is only complete after three doses, just like the vaccination against polio or tetanus. This means that with the booster, a protective effect is achieved that was still not there two weeks after the second dose.
Apparently, this is especially true for omicron, even though the booster has not yet been adapted to this variant. The risk of being hospitalised is half that of twice-vaccinated people. In addition, triple-vaccinated people are less likely to pass the virus on to each other, even within a family. (If anybody needs the source of my claims, let me know, there's tons of published study material out there.)

And since my booster (aka third jab) was way back in September, I was given another one. Just so, I didn't even have to sit around for 15 mins afterwards. I just cycled home and washed out the cold frames for the new seeds. Let the 2022 garden season begin.

I finished watching Station Eleven and I cried a good bit, especially during the episode when all the babies are born. But also because it is such an unbelievably hopeful ending. Once the emotional stirrings had calmed down, I reviewed it with my clever daughter and we agreed that even 20 years after a mind boggling all consuming planet wide pandemic, women - who are all courageous and powerful - appear to have access to excellent make-up produce and stuff to diligently shave their legs and other body parts while men - who on the whole are a bit lost, but strive to be wise and kind - have taken on a hairy, disheveled hobbit-like appearance. We left it at that. It's good tv.

Other than that, I am almost 65 years old, my mother has been dead for 22 years and I am still learning that I don't owe my parents anything, that, however unhappy my father is right now, it's not my fault.

Here's another nice video for distraction.

it's time for the sky to grow larger

If you are closer to being old

than you would like to be and slowness

begins to redefine the idea of difficulty

into something you would much rather

take a pass on, then it is time for the sky

to grow larger than the earth, than the sea even . . .  

 

Jim Moore

Today I was informed that I probably don't have MS or maybe just a bit of it and that we'll have a look at it again in a couple of months or so. Nothing to worry, they said. Not yet anyway, they reassured me. As for the symptoms, well now, they said, our best bet is that these could be side effects from the monoclonal antibody therapy and right now, there is no distinct nerve damage. Yet. So tell you what, they said, we'll check that over the coming months. Just watch your step, you don't want to have a fall. Still, you better go for the lesser evil and continue with the monoclonal antibody stuff because where you're at with your illness it's all a matter of weighing one shit against the other.

Or something like that. This is the colloquial version of several long and serious phone calls. The way I retold it a hundred times by now. You get the gist.

Then I watched the latest press briefing from the WHO on our new friend omicron, which is spreading at a rate we have not seen with any previous variant, infection numbers are doubling within a period of roughly 40 hrs. So please don't make the mistake of dismissing omicron as mild. It's not vaccines instead of masks. It's not vaccines instead of distancing. It's not vaccines instead of ventilation or hand hygiene. Do it all. Do it consistently. Do it well.

But most importantly, this issue was discussed: 

Journalist Gabriella Soto Mayor from Mexico. asks: "One of the things that most worries many children is Santa Claus - because he's old, he's overweight. They are concerned whether Santa Claus is able to leave his house and stay safe; whether he will be able to travel. So, do you have any message to the children in Mexico and, maybe, all over the world ? Thanks." 

Dr Van Kerkhove (WHO) answers : "Thank you very much for this really important question. I think you have highlighted a concern that many children have across the world. We can tell you that I understand the concern for Santa because he is of older age and from one of the risk groups. But, I can tell you that Santa Claus is immune to this virus. We had a brief chat with him and he is doing very well. Mrs Claus is also doing very well. They are very busy right now. We have also heard from a number of leaders across the world who have told us that they have relaxed the quarantine measures for Santa to enter their air space. So, he will be able to travel in and out of the airspace and be able to deliver presents to children anywhere. But, I think it is very important that all children of the world understand that physical distancing by Santa Claus and also of the children themselves must be strictly enforced. So, it is really important that the children of the world still listen to their moms and dads and their guardians - and make sure that they go to bed early on Christmas Eve. But Santa will be able to travel around the world to deliver presents. So, thank you very much for that important question."

Before we shout, ugh what condescending adult rubbish, I can confirm that I have met children who are most concerned not just for this gift bearing overweight elderly santa-like figure but also their overweight (or not) elderly relatives and friends in general.  Children are not stupid.

In other news, cycling still works a dream, better than walking. And, only seven days to midwinter. The sky will grow larger again, soon.

 

In illness .... We float with the sticks on the stream, helter-skelter with the dead leaves on the lawn, irresponsible and disinterested and able, perhaps for the first time in years, to look round, to look up--to look, for example, at the sky.

Virgina Woolf

If it were not for my never ending monotonous litany of symptoms, which with predictable regularity is calling on me, my patience, my stamina, my stoic self - where would I be these days? Theoretically I am all for remaining stoic, after all it supposedly involves an indifference to high flying emotions, but in reality, that has never been my strong point, so it is hard work. Asking me to recollect myself - but as what? To reorient - but towards where?

Also, I consider one of my major achievements that - after much tossing and turning and chaotic thinking in the early, early hours - I finally allow myself to just lie there and Observe What Happens Next. I feel very Zen writing this down. Mostly, I am so tired by then that I fall asleep but it's the thought that counts, surely.

So yes, I have now managed the art of stepping back, mentally (having long since stepped back physically) from the ordinary claims of the world. But somehow, I still find myself walking on eggshells waiting for things to get worse, especially with the novelty set of side effects a new medication brings, the way it messes with the nerves along my legs and the - as yet - moderate hair loss. I am not so sure whether I am ready to swap my thankfully thick hair and the full sensory faculties of my legs for - what? I quite forget. Maybe a longer life? 

Next year R will turn 70, which makes him older than his mother ever was and almost the age his father was when he died. He is a picture of health and fitness and unlike his father was never a smoker and unlike his mother did not have multiple pregnancies and a massive traumatic car accident. Everything is stacked in his favour. 

When the first medical expert mentioned to me that my life expectancy will be somewhat reduced, I cried while waiting for R to pick me up. That expert was a piece of shit, really, because he urged me to get on the liver transplant list as, in his words, my liver had five years, max. But my daughter hasn't even finished school, I replied. (He was wrong. My liver recovered, while other bits have since packed it in. I don't think about it much.)

On Sunday, during my duty phone call my father in his nonchalant way mentioned that he has accepted to be locked up in this care home until his death. I almost replied, maybe that won't be long now. But I held my tongue. Whereas he felt it appropriate to add, you with all your health issues and medications, you'll probably die before me anyway. I politely changed the subject.

It is disappointingly cold outside, so that on these long bright evenings, we sit wrapped in blankets and watch the rain showers blowing across the lawn. Everything is lush and soggy and colourful to look at, the garden is enough. Almost.

Let's start with an image from the garden. It's dated, more than a week old and we all know how spring races on.  Anyway, these beauties (wild tulips) are still flowering all over the place.

I am having a rough old time. What with side effects of this new biological while waiting for it to kick in to show me its promised glorious powers. (I am beginning to have doubts. My inner hypochondriac is having a field day.) But just for the record, four weeks of cortisone therapy, starting high and tapering down to almost nothing, have not only revealed glimpses of my former self - free of all the aches and filled with energy, I was in best form - but also confirmed once again the inflammatory nature of this autoimmune disease. Isn't it a pity that cortisone is such a toxic agent. I could get addicted to it. But for now and following doctor's orders, it's almost gone, I am down to 2.5 mg for another couple of days and the old stiff and tired woman has come shuffling back into my life. And that's not even mentioning the gruesome inflammatory bowel scenario.

Wisely , I postponed my appointment with HR until last week. Any day earlier and I would have thrown any offers of earlier retirement out the window. Me? I would have laughed, look at me, I am in great shape. 

Whereas now, I am stuck with the same old same old. Should I, will I, can I, etc. and on days like today, how much longer, and even louder: when?

 . . . the morality of illness is about seeking to do the right thing, but no single right thing is usually available. Thus 'rising to the occasion' involves living with a combination of uncertainty about what is being done and necessity to do something, since even inaction is a form of doing. The morality of illness means responding to the question: "How do I become the sort of person who has to live with a decision that I never should have had to make?"

Arthur W. Frank, Illness as moral occasion: restoring agency to ill people (in: Health, Vol. 1, No.2, Oct. 1997, pp. 131-148, to read the entire essay, click here)

Anyway, I have a bit of a time to think and throw the dice. A few more consultations with experts. 

Lovely music helps.

Autumn flare

In sickness, you’re too much with yourself. The whole body burns with memory, the volume of sensation is turned up. You are filled with an excess of remembering. Your skin, wherever you touch it, says “I.” There are muscles here, yes, there are nerves here, yes, there is pain here.

Then the illness subsides and you go back to self-forgetfulness. 

But for the chronically ill, this is what cannot be forgotten. Every square inch of one’s body is at all times crammed with "I," with self.

 Teju Cole

 

 

I am an old hand at this, I should think. But it floors me every time something happens that triggers a flare up. Which is where I am currently finding my miserable self. The usual coping mechanisms are in place, dividing up the day into tasks and rest and floating in between these stages with equal degrees of anger and resignation. Autumn does not help, not my season, neither is winter. I could go on.

And I hate myself for it, this over dramatisation of the person I think I am and the futile attempts to pretend I am not. The anger that rises up inside my head when I watch someone about my age being active and fit. The futile attempts to pretend I don't care. That lesson in my childhood socialisation training, the one about cheer up and who do you think you are compared to others who are far worse, it sticks. I crawl to work and pretend I am superwoman.

As for the covid, it feels like an oncoming tsunami at times, despite the detailed information we receive. Numbers are climbing, even the shittiest tabloid has by now dedicated a front page to what exponential growth means and why it happens and what we need to do to keep it as low as possible - and why.

The virus only survives because we host it. It floats in the air because we send it there. It's a people thing.

 

For the last couple of weeks I have been trying out a new approach. It sort of works surprisingly well and I am quite pleased with it. 

Step one: Apply the basic principle of life and death. Or rather life vs death.

It boils down to a quick analysis: Will I make it through the day? And if under the circumstances it seems that I do - and this is obviously so - I'll just chuck out whatever it is that bothered me. Away with it, not worth dwelling on it.

Step two: Discover the basic underlying pattern in your life and if there is none - which is what seems to be the case most of the time. Honestly, the chaos! - make one up as you go along. Divide the day into periods of food intake, dental hygiene, laundry folding, cryptic crossword solving, paid employment, a chapter of whatever book comes in handy, coffee intake, meditation (sort of), fresh air exposure, conversations with other humans, watching R cook dinner and drug taking (purely pharmaceutical).

Step three: If all fails, go online. Or read a book. Or both. 

This is the lake we did not swim in despite careful planning. Pandemically speaking. We did make online reservations for a socially distanced slot - four hours - to access the nature reserve that then allows you to get to the water safely. Alas, thunderstorms. Force something or other winds and flooded roads. We stayed home.

This is a maar, a very deep volcanic crater and the water is clear, cold and black. There are many of these maars in our part of the world, we are surrounded by volcanoes and hills that were formed by eruptions. Some of the lakes send up gas bubbles, so-called mofettes, warning us that there is activity, always. Volcanoes are never dormant.

 

In my healthy days, I swam across and back, it's about 1.5 km in total, several times. 

It's one of my brilliant memories.

 

 

This is Friday's music.

just another sunset in paradise - yes this was home for a while

There are new guidelines for the treatment of my shitty disease and let me tell you, according to the new immunologist I have been assigned to, guidelines rule. Which is why I am on yet another road of discovery. Which is also why the other expert I was sent to this morning gave a sharp whistle through his teeth when he saw the recommended procedures. I kept my head up and my face straight, no an easy task right now, but I did admirably. In the end we agreed on a deadline after which he may take matters into his educated hands, guidelines or no fucking guidelines.
We shook hands on the deal, like two cool stock brokers.
Whereas by the time R picked me up, I was back to being the miserable patient. One of these days, R's capacity of listening to my moaning will be exhausted. Or maybe it already is and I haven't noticed.
Meh.
The house guests are on the road to a variety of other houses here and there and we are supposedly joining them in a while. That's the plan. I told the stock broker but I think he took it as a joke.

Anyway, another thing altogether:

From an essay by Douglas Rushkoff (the bold highlights are mine, I like to bring my messages home)

Last year, I got invited to a super-deluxe private resort to deliver a keynote speech to what I assumed would be a hundred or so investment bankers. It was by far the largest fee I had ever been offered for a talk — about half my annual professor’s salary — all to deliver some insight on the subject of “the future of technology.”
 . . .
After I arrived, I was ushered into what I thought was the green room. But instead of being wired with a microphone or taken to a stage, I just sat there at a plain round table as my audience was brought to me: five super-wealthy guys — yes, all men — from the upper echelon of the hedge fund world. After a bit of small talk, I realized they had no interest in the information I had prepared about the future of technology. They had come with questions of their own.

They started out innocuously enough. Ethereum or bitcoin? Is quantum computing a real thing? Slowly but surely, however, they edged into their real topics of concern.

Which region will be less impacted by the coming climate crisis: New Zealand or Alaska? 

 . . .

Finally, the CEO of a brokerage house explained that he had nearly completed building his own underground bunker system and asked, “How do I maintain authority over my security force after the event?”

The Event. That was their euphemism for the environmental collapse, social unrest, nuclear explosion, unstoppable virus, or Mr. Robot hack that takes everything down.

This single question occupied us for the rest of the hour. They knew armed guards would be required to protect their compounds from the angry mobs. But how would they pay the guards once money was worthless? What would stop the guards from choosing their own leader? The billionaires considered using special combination locks on the food supply that only they knew. Or making guards wear disciplinary collars of some kind in return for their survival. Or maybe building robots to serve as guards and workers — if that technology could be developed in time.

That’s when it hit me: At least as far as these gentlemen were concerned, this was a talk about the future of technology.  . . . they were preparing for a digital future that had a whole lot less to do with making the world a better place than it did with transcending the human condition altogether and insulating themselves from a very real and present danger of climate change, rising sea levels, mass migrations, global pandemics, nativist panic, and resource depletion. For them, the future of technology is really about just one thing: escape.

. . .

I suggested that their best bet would be to treat those people really well, right now. They should be engaging with their security staffs as if they were members of their own family. And the more they can expand this ethos of inclusivity to the rest of their business practices, supply chain management, sustainability efforts, and wealth distribution, the less chance there will be of an “event” in the first place. All this technological wizardry could be applied toward less romantic but entirely more collective interests right now.

They were amused by my optimism, but they didn’t really buy it. They were not interested in how to avoid a calamity; they’re convinced we are too far gone. For all their wealth and power, they don’t believe they can affect the future. 

Luckily, those of us without the funding to consider disowning our own humanity have much better options available to us. We don’t have to use technology in such antisocial, atomizing ways. We can become the individual consumers and profiles that our devices and platforms want us to be, or we can remember that the truly evolved human doesn’t go it alone.

Being human is not about individual survival or escape. It's team sport. Whatever future humans have, it will be together.

To soften the blow, here is some music from the 1980s, a time when we thought we had it all.

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?

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.

permission to unravel

Monday

Once again I wake in the early hours without any bearings, the small shaft of light coming through the blinds spinning. In my left ear, the hatefully familiar deep hammering noise. I shout out a string of curses, the worst that come to mind, while I stumble and crawl to the bathroom along the walls and on the floor, before the contents of my stomach rush up. I wash my face, blow my nose and as instructed, take note the blood clots shooting out from my sinuses. My knees buckle and I let myself fall.

Hours later, tamed by dramamine and the resignation provided by too many years of chronic illness, I am watching my GP's receptionist print out another sick cert.

It is my understanding of things in general that we all carry at least one demon around with us. They are tricky, demons, never showing their real face. And no, they are not obvious and have nothing to do with fear or loss or something that happened long ago.

The demon I carry around occasionally taps out secret messages, knocking inside my sinuses and inner ears, my brain. I have long given up deciphering. It's all code, acts of pure self defence, reminding me that he's still around, that he'll never leave. But then again, he'd be lost without me. So there. And for now, my demon comes with a sick cert. 

This year's first. 

Tuesday went in a blur.

On Wednesday, I had what my daughter would call a small massive melt down. I usually have one by day three anyway. By now, we are pretty blase about it. This time, I extended my repertoire in that I shouted and called R names. He shrugged it off and made tea. Secretly, I was hoping for him to at least lose some of his cool. But he never does.

By Thursday, I was back to coping mechanisms and managed to persuade a hotel manager to forgo the cancellation fees because, bullshit. Also, we are not going to attend my father's 90th birthday party this weekend, which is a relief in more ways I can express. 

Today, Friday, I am fed up and scared and I wish for - oh I forget, nothing, everything, whatever.

A few days into the new year, I cut the big toe of my right leg walking on this glorious, sunny beach after a swim in the Pacific ocean.  I had run into the waves holding my daughter's hand. We were giddy like teenagers on the run. Her baby, a few weeks old, was well out of sight and earshot behind the dunes, looked after by the men. And briefly, she was my little girl again as we were diving through the surf,  laughing, shouting with happiness.

The next day I had to show the red toe and my by then throbbing leg to a doctor, and I started a 5-day course of antibiotics. The toe got better, I forgot about it. 

What's this?, my GP said on Monday. This antibiotic is not authorized for use in Europe. Could be the cause of this flare up, tsk tsk etc. (But do I care?)

In the early, very early morning hours I look out the kitchen window into the grey and wet garden. Desolate is a word I could use to describe the view but of course it's really just January - and jet lag.

A bit more than one day ago, I stood in the shade of frangipani and breadfruit trees by a small beach, watching plastic bottles drifting on the currents of the deep blue South China sea, gently landing and resting on the golden sand for a short moment before being whisked off by a uniformed young man. I tried polite conversation about the number of bottles he picks up in a morning and whether they come from ships or Indonesia or Malaysia. But he just smiled, his teeth very white, and bowed reassuringly. All clean now madam, and off he ran after the next bottle. My shirt was sticking to my back by the time the taxi driver offered me a cool cool bottle madam, and later on the plane, the supply was once again seemingly endless. Flying for three days includes a lot of plastic bottles.

Through my kitchen window I watch rain turn to sleet. I can faintly remember the birdcalls that now form the soundtrack to my grandchild's days. My garden in winter is silent.

Earlier, I calculated my life expectancy online. The Swiss offer me a stunning 30 years, the US is less enthusiastic with a mere 21 and Germany cuts it to 17 more years but only with a 50% probability and I had to click my way through three disclaimers before I got the result. 

(Obviously, I left out the bit about my shitty disease.) 

A week ago, I stood in front of the sign above, stunned and suddenly too much aware of what is ahead of us.

"The French philosopher Henri Bergson (. . .) developed a so-called process ontology, which claims that nothing in the universe is ever fixed. In fact everything that exists is an ongoing and evolutionary process (élan vital) without a fixed goal. And since—according to Bergson—our rational mind is solely capable of understanding and therefore predicting rigid entities but not processes, any belief in the complete predictability of the universe must be abandoned. Instead, we should focus on the possibilities of an open, spontaneous and creative future, which we will only then be able to understand, if we get more in touch with our so-called intuitive faculty, which is able to fathom a process in its processual state."

More here.


picture credit: educatingthedragon.blogspot.com

Like a fool I still believe it will get easier with time. Is this a survival instinct?
Anyway, it didn't and it wasn't, my seventh encounter with monoclonal antibody therapy. A grand word for spending a day in a state of drowsy nausea while attempting to act unfazed and not at all scared. In the early hours, I even converse with other humans until the world fades into grey.
You'll be here again in six months, the nurse tells me. I am not sure whether this is meant as a comfort or a dare.  Am I alive because of or despite this therapy? I have lost the plot a long time ago.

Instead, I get a treat and after the predictable 24 hour battle with extremely low blood pressure, I am packed into the car and chauffeured to the sea, dramatic clouds and open horizons, the flat landscape of southern Holland, sipping mint tea while watching the tide going out.

"When somebody does me a kindness, it enlarges me, adds to my life . . . And not only mine, it adds to all life."

Tim Winton   (from: The Shepherd's Hut, best book I've read all year.)

These are the last of the Muscat grapes. We harvested them last night or to be more precise, I held up a bucket while R stood on the ladder doing all the work. The wasp, hornet and blackbird community was not amused. But they had their fair share.

There is lots more to harvest. We have five different types of grapes in the garden: Muscat, Dornfelder, blue Venus whatever, the one Jack brought back from the US and the no-idea-what-it's-called. You have no idea how delicious the grapes are this year. Heat and drought, that's all it takes.

I've been eating them before and after meeting the immunologist. We didn't see eye to eye. Especially once she upped all the meds in one big swoop when only four months ago she had told me it was time to lower the dosage (of one of them). WTF, I asked, and she said, well, look at the shitty mess you are in (our actual exchange of words was somewhat more medical and distanced), didn't quite work out, didn't it.

She also had a few more stern warnings about work and travel and risks and life expectancy and I had to look at that stupid calendar on her wall really hard and blow my nose a few times while she wrote her copious notes and then she shook my hand and I said thank you, see you in two months time and I ran out of there and almost crashed into R who laughed and said, what's the hurry love, we have all the time in the world, don't we.

thank you internet

"How do you do it?" said night
"How do you wake and shine?"
"I keep it simple." said light
"One day at a time"

Lemn Sissay 

This is week two of vestibular neuritis, aka labyrinthitis, the 6th episode this year (R claims it's the 7th - does it matter?).
Episode? Attack is more like it. I am at sea with an engine roaring inside my head. The sea is pretty rough.
It will pass.

A couple of nice things that keep me entertained while reading is only possible in fits and starts, and watching is ok for short periods only.

To watch,

quiet resilience:




trying to understand brexit:



ingenuity:





and cheerful gruesome, horrific podcasts because the eyes cannot focus:

The Home Babies

In the Dark

Death in Ice Valley