the mind is baffled and happy in small ways

flooded La Digue road

The temperatures have dropped somewhat, all day there was heavy cloud cover, but apart from a meagre 500 drops which evaporated midair, no rain. And that despite multiple warnings, from the house insurance (they're always the first), the local authorities and media, the federal office of civil protection (they are usually late), neighbours and my father over the phone (400 km away). No hail storms, no flooding, no nothing.

Morne Seychellois

Three days ago, after another of my adventures into the make believe world of being fit and healthy, cycling for an hour under the midday sun without helmet or any other head covering, I eventually keeled over.
It was quite embarrassing. Not only because I should have known better but also because I am a well documented braggart about my heat tolerance. Well, I reached my limit and according to dr google and based on five of eight symptoms - none of them pleasant and all requiring lying low in a darkened room - R diagnosed a mild heatstroke. He also delivered a brief albeit unwanted lecture on the different types of sun rays and their effects on the cerebral membrane. There is a lesson in everything.

I am slowly picking myself up, moving towards a vertical position. According to dr google, recovery should be imminent as suffering is restricted to two days max. Also, remember, R identified only five of eight symptoms, so I could just be normal sick. The way I am most days after doing something stupid, like pushing myself despite being an old woman with a chronic illness and a carload of side-effects. My instincts are all over the place, replaced by a general sense of what the heck, just do it, you can crash afterwards.

And like the icing on the cake I am going to bake when I have established a more stable stance, it has started to rain. Nothing dramatic but fairly steady from the sounds of it.
Three days ago was also R's birthday. Hence the cake. Overdue. Chocolate and coconut something or other.

Meanwhile, I need to unload a couple of quotes I have picked up here and there.

Nationalism teaches you to be proud of things you have not done and to hate people you do not know.

from a social worker (locally)

It may be that when we no longer know what to do, we have come to our real work, and when we no longer know which way to go, we have begun our real journey. The mind that is not baffled is not employed.  

 Wendell Berry

That is what happens. You put it away for a little while, and now and again you look in the closet for something else and you remember, and you think, soon. Then it becomes something that is just there, in the closet, and other things get crowded in front of it and on top of it and finally you don't think about it at all.
The thing that was your brightest treasure. You don't think about it.  And now it becomes something you can barely remember.

 Alice Munro

. . . everybody develops a whole armour of secondary self, the artificially constructed being that deals with the outer world, and the crush of circumstances. And when we meet people this is what we usually meet. And if this is the only part of them we meet we're likely to get a rough time, and to end up making 'no contact'. But when you develop a strong divining sense for the child behind that amour, and you make your dealings and negotiations only with that child, you find that everybody becomes, in a way, like your own child. It's an intangible thing. But they too sense when that is what you are appealing to, and they respond with an impulse of real life, you get a little flash of the essential person, which is the child. Usually, that child is a wretchedly isolated undeveloped little being. It's been protected by the efficient amour, it's never participated in life, it's never been exposed to living and to managing the person's affairs, it's never been given responsibility for taking the brunt. And it's never properly lived. That's how it is in almost everybody. And that little creature is sitting there, behind the amour, peering through the slits. And in its own self, it is still unprotected, incapable, inexperienced. Every single person is vulnerable to unexpected defeat in this inmost emotional self. At every moment, behind the most efficient seeming adult exterior, the whole world of the person's childhood is being carefully held like a glass of water bulging above the brim. And in fact, that child is the only real thing in them. It's their humanity, their real individuality, the one that can't understand why it was born and that knows it will have to die, in no matter how crowded a place, quite on its own. That's the carrier of all the living qualities. It's the centre of all the possible magic and revelation.

Ted Hughes (writing to his son)

In spite of illness, in spite even of the arch-enemy sorrow, one can remain alive long past the usual date of disintegration if one is unafraid of change, insatiable in intellectual curiosity, interested in big things, and happy in small ways.

Edith Wharton

I know a cure for everything: salt water . . . in one way or the other. Sweat, or tears, or the salt sea.

Karen Blixen

There are a hundred thousand species of love , separately invented, each more ingenious than the last; and every one of them keeps making things.

Richard Powers

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

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.

the rambling rose after the thunder storm

Gewitter:
from Middle High German winner and Old High German giwitiri and West Germanic gawedrja is really a collective noun for weather; the initial meaning being "totality of weather", yet in common modern usage "thunderstorm"

In the early hours just before sunrise, a heavy thunderstorm wakes us. The way my mother taught me, I count the seconds between the lightning and the thunder, taking a rough guess as to how far away it is. It is clearly coming closer. I grew up with summer Gewitter, I can recognise the silence and the sounds, the smells, the way the approaching clouds change colour.

I don't want to get out of bed but if we don't pull the plug to the router and the tv and whatever else, the insurance won't pay in case of damage. Just then, the house is shook by a string of such heavy and loud thunder, that all I can do is crawl further and deeper below the covers. Too late.

The sounds of thunder slowly receding are replaced by the loud hammering of hail and rain and I peek through the blinds at a heavily flooding street and so we get up and check the basement which is damp with salty patches beginning to blossom on the floor surfaces but otherwise dry.
And now the sun is rising and the birds are awake filling the air with their urgent chorus as if they have to catch up for lost time.

The day is misty and damp, hot, we are clammy and moody. Later after dinner I am floored by another episode of low blood pressure and whatever else, which takes longer than the ones I had experienced before and by the time I make it into bed my first slight panic gives way to a dramatic, divaesque breakdown. The voice in my head whispers that there must be a better way to cope but like a child during a temper tantrum, I howl at the moon and wipe my tears for a very long time. A triumphant moment of exhausting anger.

At one of the earlier appointments after the initial diagnosis, I was given a list of the organs at risk and how to watch out for symptoms of, say, advancing kidney failure. At regular intervals, I have to sign various forms to confirm my responsible acknowledgement and to release the experts from any potential wrong doing.

I wish these form include the heart, not the muscular organ sitting somewhere behind my left chest bone (they include that, coronary risk factors feature highly), but my real heart, my innermost center of being and hope and love. Which I know is at risk due to fear and panic and loss and that endless always-stay-at-the-bright-side-of-life effort.

And yet. Another morning and as so often, my life today is not like my life before. Something has shrivelled away during my diva moments.  Gone. A bunch of fibers from my heart worn into shreds and gone.
A memory of R's worried face, shrugging his shoulders, asking me if I want him to stay or leave and feeling unable to absolve him from his confusion. My mind forms meaningful sentences but I am at a loss of words and send him away.

I do not for a moment ask that my life be exactly as it was before—no one remains static neither in health nor in sickness. All life is complex at any moment.  And yes, some moments are harder than others. But I know that I must understand what I feel and figure out what I am capable of. Every day.

Someone once told me that we have many more places in the heart, empty places in the heart, ready to exist if we allow it. Let this be so.


 

the Robin rose

I took this picture early today while the dew was still out. This May is hot, hot, hot and we are expecting thunderstorms later. Very early this morning, all our alarm notification apps on the various cell phones started beeping and the full neighbourhood grapevine is on alert, heavy rain, clear the basements, tie up the loose peonie branches, keep your fingers crossed for the fruit trees full of tiny apples and pears.

This picture is for Robin, who lost her beloved mother this spring and who once told us the story of a similar rose and who posts such wonderful pictures of the natural world around her.
Thank you.

We now call this rose the Robin rose, the queen of our garden right now.

Sometimes, the most I can do is nothing.

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

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

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

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

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

Another very hot day with only a hint of a passing thunder storm this late afternoon. Breakfast outside was ok but for lunch we opted for the cool inside. Half an hour ago, R emerged from his study where he has been grading papers all weekend, stretched himself and suggested a short spin on the bicycle. Like a fool I got up and looked for the keys and my phone and made it exactly as far as the back steps.

Yesterday was a vertigo and nausea blur, vague memories of eating delicious ripe apricots in the evening, balancing on my bed, carefully holding a paperback in my arms waiting for the letters to stop whirling and turning, telling myself that all vertigo attacks have subsided before as this one surely will, eventually.

These days it is blatantly obvious that I am simply the wrong person for this disease.
Assuming that there is indeed a right person to live with a serious chronic condition, the one with all the red warning lights and the overlap syndrome and B symptom caveats. In short, the kind which causes smart medical experts to sigh and get off their comfortable chairs, walk around their shiny desks to hold your hands. If they have ever heard of it, that is.

This disease that currently rules my life (it comes in flare-ups and I remain hopeful that like previous ones the current one will eventually subside, too) used to be called Wegener's disease, named after a German pathologist who first reported on this condition in the 1930s, a time when there was no treatment, the few patients he based his findings on had died quite suddenly.
It's just my luck that Friedrich Wegener was a nazi, and possibly a dedicated one. This from an investigation by Woywodt and Matteson in Rheumatology (Oxford) (2006) Vol. 45: 1303-1306:

The facts we have uncovered do not prove Dr Friedrich Wegener guilty of war crimes. However, the evidence suggests that Dr Wegener was, at least at some point of his career, a follower of the Nazi regime. Dr Wegener's mentor, Martin Staemmler, was an ardent supporter of the racial hygiene. In addition, our data indicate that Dr Wegener was wanted by Polish authorities and that his files were forwarded to the United Nations War Crimes Commission. Finally, Dr Wegener worked in close proximity to the genocide machinery in Lodz. His interest in air embolism is also troubling. Although we know that Wegener was a popular and skilled teacher and colleague, our data raise serious concerns about Dr Wegener's professional conduct.

In 2008, The New York Times wrote that a nazi past casts a pall on name of a disease. For a while, this story was my party piece, I told it with a grin, to take the edge off when I had to react to another round of never-heard-of-it remarks. I don't do that any longer. I am also not one who is hurt or insulted by the name of this shit disease. That's the least of my problems right now.

Today, I am mostly just mad and jealous of R and everybody who can walk without needing a wall to hold onto. But I am repeating myself.

Classic mistake. I went back to work because I wanted to show my superhuman commitment and let everybody think what an obviously  tough and dedicated person I am but also because of cabin fever setting in and frankly, because I miss work and for a while I thought I could pretend it's all down to willpower and taking control and just doing it.
Of course it is not, what on earth was I thinking, and so here I am, the stranded beetle once again, trying to remain cool and calm and composed and carefree about the variety of new symptoms. Obviously, I could write about them endlessly but right now I just want to let them be.
So then, so there, so what - as we tend so remark in this family before we move on to our next mistake.


The summer is entering its seedy phase when you stop caring about the flower beds overgrowing with weeds and no longer brush away the spider nets between the garden chairs. The first apples are falling off the tree, there are masses of blueberries, R is shaking the hazel bushes every evening collecting handfuls, the blackbirds are eating the grapes and someone's cat has started to shit on our lawn. Or maybe a hedgehog. Never mind, go right ahead. We know this is going to be over soon enough. Hot sun on your skin, warm wind in the evening, open windows at night. In a few weeks, the spiders will be dust and we will wear long sleeved garments again. I even may be able to recover some semblance of health and fitness. Alternatively, I may find myself without a job and will start making quilts and read that silly meaningful book on how to reorganise your wardrobe with the sock rolled up in a peculiar colour coded way.

The butterfly larvae ate their way to fat green and black caterpillars before turning into shiny hard grey chrysalises speckled with a line a golden dots. There are now hanging almost motionless inside their habitat (a mesh cage) until some time maybe this week or next week they will mysteriously unfold their magic wings and teach us a thing or two about beauty.

It's amazing, isn't it, how all this goes on around me, just waiting for me to notice and be surprised and awed.

Outside there's children laughing
The radio plays my favourite song
The sun is shinning
Oh and peace broke out in the world
And no-one says a cruel word
And peace is the sweetest sound I've ever heard

 

So this was June. Monsoon June when it rained every day. And yet, the ants have won. They are out and about on their mating flights right now, flaunting their silver wings for the day. I shooed off a gang of them earlier today but ever so gently. One day we will lift the patio stones and discover an entire universe for miles and miles below them, all the way to the center of the earth.

Well, it seems June was also the month when my health soared and then packed it in again, slowly first but quite deftly now. I am back on old familiar grounds again, bed, sofa, deck chair etc. 

Today, the physiotherapist figured out a way to treat my sore back without me drowning in waves of vertigo and nausea and suddenly, the biggest achievement of my life - as compared to climbing mountains or editing a groundbreaking paper on molecular genetics - is to be able to move my facet joints again without too much pain. While the lovely physio explained about lumbar facet joint arthrosis (which I am quietly ruling out with all my willpower) she arranged my undressed back into a swooning curve and took some pictures of the strange bruises all along my spine.  They are only superficial, she assured me, but we'll have someone take a look - just in case.

The garden is a sea of lilies in yellow and pink and white, the fruit trees are packed - there is no other word for it - we are eating tender purple kohlrabi and I am half way through the blueberries, one fat handful a time.

And now, July. All year, I have been thinking of the promise of beautiful July and the wonderful times we shall have. I may walk in the Italian alps, if only for a short distance - from the car to the deckchair at least.

Today, I had four very pleasant taxi rides between two railway stations and one clinic and our one and only home. It cost a bomb but I only do this twice, maybe three times a year. I swear that the taxi drivers all somehow guessed that this was a difficult day for me and they all tried to cheer me up. 

The Kurdish one during the 8:30 am traffic jam demonstrated his newfangled shiny purple reading glasses which fold into a small square and pop up just like that! He also told me that organised religion was the root of all evil and that we need to teach our kids to always keep their hearts and minds open. I totally agreed and it went from there. When we finally reached the station, he thanked me for a lovely time.

The Azerbaijani grandfather who dropped me at the clinic three hours later sang me the wedding song he has been rehearsing for his youngest daughter's wedding to a German policeman next week. It was a very long song and as I sat there watching him with his eyes closed and head thrown back, the clouds opened and all was shiny and golden sunlight around us.

The young Afghan who drove me back to the station offered me a cup of chai from his elaborately decorated flask and it was very very sweet, both the taste and the gesture, because it stopped me - just in time - to fall into that deep miserable hole of self pity and why me and all that stuff.

The last trip back from the station was a short German lesson because the Iranian driver had only arrived four months ago, for love, he told me, and so we went through a few phrases on his language app and after I had paid him, he showed me his young wife and his tiny baby daughter, gently wiping with one delicate finger from one image to the next on the surface of his phone. I would have asked him in for tea had I not been so exhausted but I took his card and promised to call him for my next trip, silently hoping that by then he will have passed the language exam to continue studying medicine.

On the train journeys I met:

A very heavily pregnant Japanese woman living in Cologne on her way to meet her parents at the airport, preparing herself for the inevitable onslaught of the expected Japanese misunderstandings regarding the European approach to birth. She was very flustered and I hope she and her parents made it home in time.

A former heroin addict who found jehova and the joys of keeping fish in various types of aquariums (aquaria?). Well, I now know a lot more about hard and soft water and African perch and why zebra fish prefer the company of neon fish or maybe not. 

About 20 preschoolers or their way to the Roman museum for really important stuff as one of them informed me. He also told me that under no conditions should I try and swim in the river because of the big strong currents and I promised that I will remember his advice. He then gave me a grape. 

With all this social encounter going on I managed only one picture. I didn't get that right, it's one river bend before the Loreley (yes, the Germans write it with a y) but it looks almost the same, only there are more tourist boats and flags. 

I also met my lovely immunologist and she did not like the look of things at all. Plan B has not worked out it seems, so it's Plan C for eight weeks with Plan D lurking in the background. Plan D is not nice, so keeping all fingers crossed for Plan C to do wonders. Eight weeks.

resignation vs acceptance
maybe I am not wise enough or not clever enough or maybe it's still too early but really, what's the difference anyway
someone who has just been diagnosed with my disease (it's getting easier to write that, at least) contacted me and after I had offered her my personal spiel on it she couldn't find enough words to praise me and how I cope so fantastically and how positive I am and so on I almost shouted at her to shut the fuck up
but instead I put on my generous smiling face and walked away and into the sunset at the end of the rainbow
thinking this is getting out of hand

Summer is over. We are back to work and those brief exchanges of when will you get home over breakfast. But outside of course, it's still summer, heatwave after heatwave, breaking one record after another.

I would like to be at the sea right now, running into the surf.

After easter, ascension and whit Sunday, this is the last of the spring/summer holy holidays, corpus christi. Here in this country with an agnostic majority, we take all this stuff very seriously. After the procession today, the catholic youth group down by the river is having a barbecue, which I think is quite the suitable thing to do. A touch of the Varanasi Ghats.

Of course, I won't dare to clean windows or cut the lawn and all the shops are closed . Instead, the nation indulges in watching  football soccer, food and drink, procrastination and all the other stuff that comes with it.

We decided to stop forcing the whatever pills down our little old cat's throat twice a day. And yes, we tried all the right moves, excluding the burrito thing which involves wrapping her tightly in a towel, R will not hear of it. Being blind and deaf and very sleepy, she has now started to hide in fear and my hands and arms are covered in bleeding scratches. This is not the way to do this. I am not sentimental or sad, she is an old lady who so far has enjoyed a fabulous life since she was found as a very very young abandoned kitten covered in ticks and maggots. We will not turn the last weeks/months into a miserable daily battle.

a very quiet summer weekend in June

 Our little old cat is now blind and deaf and outside, she is lost. So I watch her sleeping, sniffing in the wind, timidly wandering off and when I carry her back from wherever she got lost in the hedges, she spits and hisses.

 Last week's apricots are this week's cherries.

 an abundance of grapes this year

early summer

It's getting quite blustery and hot out there. The cat has come in. Big news. The vertigo has settled in nicely, most of the time I am so seasick I want to puke. In a bright spark of insight I decided to get myself to an ENT exam this afternoon. And now I am entertaining the wild notion that all will be well. My prince will come and drive me there as I am prone to toppling over when I am not doing my drunken walk. 

Until then I shall wander into the basement and slowly move all of our precious valuable junk out of harm's way because there is a storm coming with prospects of very heavy downpour and as we all well know by now this could mean flooding. Not from a swollen river bursting its banks about half a mile down the road but from too much rain pushing its way through the sodden ground through the basement walls and up the drains. If it happens it will be the third time in four years and we still won't connect the dots. If it doesn't happen, well, life goes on and we can pretend for a while longer that this is just a bit of weather.

Belgian music

The last hot summer night for this year. The air is so warm and soft. Hard to believe that this is all going to be over by tomorrow afternoon - according to the forecast. I can hear the hedgehog  shuffling around in the dark.

into the sky

 

deck chair summer under the wisteria

Applaus Applaus

It is no longer hot, but warm. This mellow, hazy, sunny August warmth with spider nets and withered lavender blossoms. In the morning I collect a handful of blueberries from the front garden and as I walk out to the back patio I pick a fresh fig on the go. The cat is lolling below the pear tree, showing off her fluffy belly hair. The bin man walks down the road whistling Applaus Applaus while he rolls the empty bins back onto the drives. Never mind the bleeding gums, the cracked lips, the shaky nausea thanks to the new iron supplements (miles better than the infusions). This day looks like a winner, I think I better get ready to tackle my downbeat disposition.

A beautiful day. I put the box with the pain killers back into the medicine cabinet. It's been 48 hrs now without and I tiptoe out of the bathroom. Careful now, no lifting, no running etc. they said. For a couple more days at least.

Eventually this will pass, this feeling of being delicate, fragile, not quite whole. Not yet. I pull the deck chair to the most overgrown part of the garden, where the bryony has almost covered all of the bramble hedge. Its little yellow blossoms are teeming with bumble bees. I look up into the summer sky and my mind opens wide.

Once upon a time when I took health for granted, my days were full, like a doctor's appointment book, slots of 10 minutes max. The things I could stuff into 10 minutes, shower, breakfast, laundry, rain gear, lunch box, cats, quick phone call, whatever. Now I am a 30 minutes person at a stretch. Some days it works. 

The blackbirds in the garden are fearless this summer, hopping around me, picking raspberries and twinkling at me with their little shiny eyes. The cat pretends to be asleep. And I will pretend to be healthy.

bounty