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.

 

This is what defeat looks like, thankfully. The river showed me my place and when I arrived back home after a mere half hour, my knees were buckling under me and my conscience kicked in.

On a good day, I can cycle on and on until that castle ruin on the other side is a long way behind me. (In my fitandhealthy life, I cycled all the way to almost Switzerland.)
But it has been a while.

So yes, I am miserably unwell but what else is new. Keeping fingers crossed that it's just a bug or a virus simmering below the surface. Even cancelled the all important meeting with the big boss on Friday. Exhaustion is my middle name. Consequently, this post is all over the place.

But otherwise life is good enough, seriously. We got the first (hopefully of many) bunch of daffs.

The dawn chorus is swelling, mostly blackbirds. The ladybirds that have been hibernating inside the house are getting restless. They make these tiny sliding noises when they crash against the window panes. Don't worry, they are tough.


I have been reading, as always, and this here stuck in my head:

I’d like to teach my daughter to protect herself. I’d like to teach her not to be thankful for the leering eyes of a man on the street, or the groping hands of a man at a bar. I’ll teach her that she is the ruler of her body, and I’d like to imagine a world where she can go to the grocery store at night and not walk fast to her car with her keys poised like a weapon.

Because I tried, I swear I tried. I wanted her world to be so much safer.  I wanted her to grow up feeling free and welcome and fearless almost everywhere. I want all women to feel free and fearless and I think every single person I know wants the same and yet, I have failed. For a while I thought if I encourage her sense of fearlessness that surely will do the trick. But before I knew it, she learned that "N O spells no" in kindergarten - and we pretended it's a funny game, enrolled her in self-defense training not once but thrice and arranged for safe passwords, secret codes and pretend phone calls while walking home from the night bus. Mothers should not have to buy pepper spray for their daughters or warn them about the safe way to dress because men cannot help it or whatever shitty backlash comes next.

Meanwhile, listen to the fabulous NZ Prime Minister Jacinda Ardern, who is pregnant with her first child and will show the world that work and motherhood are not incompatible.

it's terribly important not to be too gloomy

The fabulous Mary Beard speaking.



At around 6:30 am after a night when I exhausted myself on the battlegrounds of gastritis I realised that I really don't have to go to work at all today, I can just call in sick and if they hold it against me, so be it.  Which of course is paranoia on my part because labour protection etc. Also, as my clever daughter pointed out to me, complaints about my work in general solely based on my age is a rights violation (that's called ageism, mum, don't let them get away with it).
So, I am staying home because I am old and sick or maybe because I am sick and old. Take your pick.
Or rather, because I feel like shit and just want to potter about a bit, watch/listen to Mary Beard, not brush my greying hair, read my book with a hot water bottle placed on my bloated tummy.
And: no apologies.

The river is receding, the birds are very busy courting and getting things ready in the hedge for their spring marriages. Even the sun came out for a (very) short while.

I've had some serious health issues in my time. (As if I haven't mentioned this before.) More than one expert told me in the last six years that I am lucky to be alive, that kind of stuff.
Also, in my almost 60 yrs I have been through some gruesome pain (however and thanks to the heavens above, the almost fatal issues are mostly pain free but just carry the potential to finish me off). The pain that tormented me to date has been due to more benign causes, accidents, inflammations, that whole dental catastrophe, not forgetting childbirth (- which was actually sublime, pain incl.).

I used to feel proud of my coping skills. OK, proud is probably not the correct term, let's say I used to be confident about being able to cope. Eventually, after the jitters and the panic stations, I am not perfect. But. Always falling onto my feet in the end. Breathe in breathe out, that kind of attitude.

Fear, yes of course, I know fear. Before and after fear. I may have lived the comfortable life of a white middle class college educated happily married woman with really decent health insurance (socialist to some), but I have also flown in an airplane that was evacuated upon landing because of a bomb scare (the bomb was discovered on the plane hours later), drove downhill in a car with failing brakes (gears, gears, gears), presented my battered German passport to uniformed men with bloodshot eyes and very large machine guns, got stuck in a lift for an eternity, almost drowned in a freak surge, got showered in sharp glass when the train window I sat under was shattered by one of several massive rocks that missed my head by a fraction, ran out of a burning building, that kind of fear.

The summer before I started university I went wild. Nothing seriously bad or too illegal, mostly tasting-freedom-like-never-before wild. Part of that freedom was a brief love affair with a poet. How could I, with an A in German literature, resist a poet? (I would now, looking back, but not at the time.) 
After the first week, he sent me this poem by Bertolt Brecht, handwritten by himself on fancy paper:

To be Read Mornings and Evenings

He whom I love
Has told me
That he needs me.

That's why
I take care of myself
Watch my step and
Fear every raindrop
Lest it strike me down.

It was only a brief fling, his own poetry was somewhat unconvincing and he also quoted too much Rolling Stones lyrics.  But I always loved that Brecht poem and two years later, I actually stood in Blackwell's Bookshop in Oxford and read it out loud and in English to R, who, in his dirty mountain boots and his wild hair swirling around his head, looked quite out of place in the poetry section but grinned at me just the right way.

Anyway, my point is: I am now officially terrified, scared shitless, of all the raindrops and the way I cannot move my right leg properly and whether this rehabilitation will be a failure and too late and I could go on and on.

Every morning I get up charged with another load of enthusiasm, or rather, I carefully turn from my back to one side and lift my body en-bloc to crawl out of the bed that R has raised (using four small concrete blocks) to the level recommended by the trauma surgeon.

I am half way through the six weeks of life as a stranded beetle and well, let's be patient. The stitches are out, the wound is healing. I am shaky and shattered. Of course I wonder if there is something else going on, after all that's my strength, waiting for signs of the volcano to erupt and yes, there are some signs.  But generally, I am fed up to my teeth of having to lie flat on my back - for another 21 nights, after which I should be better equipped to handle another autoimmune flare.

Sometimes I do dramatic things like standing upright for a much too short while with my laptop resting on a pile of books so that I can edit a paper on chronic liver disease management, or I slowly walk downstairs and make coffee and microwave-cheat chocolate brownies, followed by a brief walk through the winter silence of the garden.

There are tiny moments of amazing rest and clarity, when I see it all before me, recovery and so on. But mostly and despite my careful attempts of regular patterns (shower, relaxation, reading, tea and hours and hours of online tv)  I am swirling through chaos. Well, at least there's a certain because surely we all know that there is no way to order chaos. Nothing can be charted, ordered and predicted.

I sent the man out to show me that the world is still waiting for me and he came back with fresh fruit and this reassuring picture.

Shit happened at the ER

When we drove through the dark and empty city early on xmas day I expected to be sent home with the usual wait and whatever needed to be excluded as possible scenarios after 48hrs of quite awful lower back pain which dr google had diagnosed as mere sciatica. 

Little did we know.

On a scale from one to ten, the pain last night hit 25 and I was drugged out if my wits. My right leg is a furry lump and most reluctant to participate in the business of keeping an upright stance. My right foot refuses to lift which renders my attempts of walking to a silly duck-like plop plop shuffle.

The long road of diagnostic work up so far has excluded any fracture. I should be so cheerful. Most of all I would like to have less pain and a good few hours of sleep. Somewhere down the line this is waiting for me. Keep your fingers crossed.

From the large window beside my bed I can see the sky and the tree tops.
And the unlimited supply of coffee is decent.

I will try to make this stop at the place of self pity the briefest possible. But be warned, I have a tendency to dwell. 

As a child, long before anybody ever considered contact allergies, I would forever pick and remove and restick the sticky plasters covering my multitude of injuries resulting from climbing trees, playing hide-and-seek on the building sites of our growing suburb, cycling accidents, general fighting, all that feral outdoor stuff. Once I got the plaster off for good, I continued picking the, by now, red and itchy wound or scab, trying to hide well away from my mother's slap and yet another application of sticky plaster. 

Years later, when I worked as a night cleaner at the university clinics in Heidelberg (a much sought after student job at the time) and developed a nasty looking rash, a dermatologist covered my back with a zillion sticky test patches for 48 very very itchy hours. The result was that I am allergic to just one thing, sticky plaster. (The rash was a chemical burn from one of the cleaning agents I used at work.)

Life can be so easy sometimes. 

Today, the house booms with R's coughing. The kitchen reeks of the eucalyptus and thyme oil concoction he inhales, his fever has dropped, the world did not come to a sudden end after he swallowed his first ever antibiotic pill and the resulting recovery process is a joy to observe. Of course, he would not describe events as such. He is suffering greatly and requires a considerable yet predictable amount of cajoling and distraction to get through this extremely unfair onslaught on his usually excellent health and the resulting massive burden of boredom.

Whereas I crawl along, exhausted yet fever-free, non-coughing yet miserably chesty, basically waiting for the ground to open up beneath my feet. I have no idea why I remembered the sticky plaster stuff.

Meanwhile, my father has turned off his mobile phone because we interrupted him too often, he is watching the skiing tournaments live on tv from his hospital bed.

In frost-free tropical paradise, this was our back garden.

Illness is the night side of life, a more onerous citizenship. Everyone who is born holds dual citizenship, in the kingdom of the well and in the kingdom of the sick. Although we all prefer to use the good passport, sooner or later each of us is obliged, at least for a spell, to identify ourselves as citizens of that other place.

Susan Sontag

Today I had The Talk with my lovely immunologist and plan C (or was it plan D? whatever) is about to begin. Things can only get better. But first, a multitude of tests and a couple vaccinations to refresh. Followed by waiting and pretending, of course. After that, let's light the candles and keep breathing. But first things first. Which means, phonecalls, more waiting and so on.

atrial fibrillation

My secret belief - the innermost credo by which I live - is that although life is loathsomely ugly and people are often terribly vile and cruel and base, nevertheless there is something at the back of it all, which if only I were great enough to understand would make everything, everything indescribably beautiful.

Katherine Mansfield

Last Monday I woke in the early hours with a feeling of urgency and dread like never before. I got up and as I walked to the window to find the moon I passed out. It was all very gentle, my legs slowly bending and folding onto the soft carpet. Almost elegant. For a brief moment only. I pulled myself up and that is when my heart started to race and skip and stop and start. These jolly occasional jumps have been scrutinised extensively in recent years. Extra systolic beats are nothing to get worked up about, they told me. Only, this was slightly massively more than an extra beat here and there. The regular and boring thud thud thud of my heart had turned into a wild jig and while I was lying there trying to decipher this new rhythm, which wasn't a rhythm at all, I felt quite curious, calm even. 

Anyway, to cut a tedious story short, I eventually had the unexpected  pleasure of the second ambulance ride of my life. I got the full treatment, sirens and all, and I was actually laughing, it was so exhilarating with trees and houses rushing by. Nothing like the first one three weeks ago when I was puking all the way. Hell no, this was great fun.

It was all very picture book really, like on tv, the monitors with the colourful curves and bleeps, the tubes and ports and needles and wonderful calm skilled people coming and going with reassuringly orchestrated regularity administering potions and performing rituals and - oh yes! - that weird gown. I really regret that I left it behind.

Sometime during the following night, my heart had enough of it and jumped back into its boring regular groove. And as it did so, all the monitors started to bleep and shout and flash and the night nurses came running and cheering and clapping and I called home and then took this picture of the heavens above me.

 Sheep's Head peninsula Co. Cork, Ireland (July 1983)

My world is no longer turning. That's actually quite a beautiful improvement. While the ground beneath my feet remains unsteady, I no longer need to hold onto walls when I walk and the staircase has become once again just a means to move from one floor to the other. In fact, I can look into the rainy garden and notice the wind in the wisteria and tell myself that this is just wind and not a mean trick of my damaged balance organs. But this is all surprisingly tiring. As I walk past the big mirror of my great-grandmother's wardrobe in our bedroom I stop for a moment to take a look. You are not well, I tell the person staring at me, don't fool yourself, you are sick. 

Last night in my dream I explained to my GP that I wanted to sleep for about three months, and she wrote an elaborate prescription on thick cream paper and handed it to me but I was too tired to take it and instead just curled up on the floor in front of her desk. I must have fallen asleep because I don't remember what happened next.

When I blow my nose in the morning, an impressive amount of blood appears probably from deep in my sinuses and inside my mouth, there is a spectacular number of open sores. 

The blessings of cortisone. Possibly. Hopefully.

Of course, this is all old hat.

Only this time - oh, I have no idea and I try not to speculate. Obviously, I have been pretty ill and have gotten better before and there is no reason to think that it won't happen again. Eventually. And as it stands, no vital organ damage looming on the horizon, just a somewhat major spot of bother in the ENT department and all sorts of accompanying odds and ends incl. exhaustion and the usual stuff like gastritis and so on. (But try and tell this to the scared wimp in my bed at 3 am.)

To drown out the double bass players in my ears I have been listening to some very interesting and downright lovely podcasts. Earlier today, I was back on the sheep's head peninsula, which has been one of our favourite places for many years, listening to gorgeous sing song West Cork accents describing the time in 1979 when the writer JG Farrell lived and died there. 

In fact, I just realised that on the day he died so dramatically, on Saturday August 11, 1979, we were travelling (on foot, hitch hiking and by boat) about 350 km north along the same coast, eventually reaching Clare Island where we struggled to pitch a tent in the evening, there was fierce wind and rain. I had met R seven days earlier.

Anyway, it's a sad story (the one about JG Farrell, not the one about R and me) but worth listening to. (Here is the link. And here another account of events.)

Sheep's Head 1983

Tough work, let me tell you. The recovery of my vestibular function.  It's taking its sweet time compared to previous experiences but the expert yesterday cautioned me to be patient because it is exhausting stuff.  Think massive concussion on a sailing boat at high seas and you get an idea. It is also noisy, there is a quartett of double bass players inside my ears.
Apparently, we are talking weeks - at least.
And yet, he did say recovery. Magical word.

So, here I am, reduced, battling the blues (sounds better than it feels) and generally trying not to drown in self pity.

Still, I've been here before I know but honestly, that doesn't help right now.
 I will eventually get back into some form of a daily pattern, rediscovering the separating line between day and night.

Meanwhile, distraction is the key. Tracing humanity in many forms and shapes.
Go if you have the time and read the here and fall on your knees:  http://www.humansofnewyork.com/


And then, have a look here:



The last time I was in London, one of these tower blocks was on fire. Just as we walked through the Columbia Road flower market where we got the bronze fennel that has spread all over the garden this summer. It was very dramatic but nobody got seriously hurt.

an exercise in futility

I never had much tolerance for moaners, people who throw their symptoms around like pearls and who seemingly spend most of their time concentrating on how miserable and unfair life is.

I still don't and I try hard to not do this in real life. 

In real life. 

In real life, I never lose my cool. I share jokes with the experts about the silly bruises on my body from the injections, the way my hair blocks the shower these days. I pretend that I am pragmatic, that I understand the science behind it all, the way the drugs interfere and reshuffle what my body has messed up. I pretend that I know about the importance of sleep and rest and keeping calm.  I play the games of relaxation and meditation and mindfulness and sometimes I even start to believe in their powers. I walk - carefully and slowly - through the garden making an effort to observe and delight and Be Here Now. I try hard to let go and allow my body and my mind to fuse into a meaningful blissful presence regardless of whatever. To admire the dynamics of my atoms swirling according to some deeper cosmic order/chaos.  (I know. Bear with me.)

But blogging? That's for letting it all hang out.

That's where I am the miserable cowering animal. 

Where I am mad and furious - energy permitting - at the unfairness of it all. 

Where I admit that I pace the garden like a caged animal ready to rip and tear. 

Where I roar that I am done with chronic illness, done with patience, with acceptance and all that crap. 

After a while even that becomes tedious. And sometimes, somewhere between and below all of that, the moaning and the whimpering and the distancing and the expert talk, I get a tiny glimpse of something pure and whole and complete and I try to touch it but then it's gone.

 

We are all in some way beggars in this lifetime. We are at the mercy of others and at the mercy of what will happen to us. Of course, we can chose how we respond to it, but we are always praying for something to happen or not happen in one way or another. We come with these empty bowls and there’s a great deal that is given to us … We are all vulnerable to whatever might befall us.

Ellen Bass

I have no patience right now.  No desire to wait this out. I wake up in a sweat, desperately trying to find the switch that gets me out of this. Fighting another wave of nausea, but too exhausted to panic. Maybe all will be well or maybe it really doesn't matter. Shreds of dignity here and there but barely so.
Oh heavens. Tough shit.

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.

Music for a massive gum inflamation, I wonder what keeps my teeth in place. There is nothing nice about the taste of your own blood. I have tried. Believe me.

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.

People tell me: do that, ask your doctor for that, insist on test xyz now. Don't wait, demand this new treatment. Do you have any idea how complicated this all is? How difficult it is some days to call and ask for an appointment. Should I let it get worse? Is this bad enough? 

Some days, I just want to move on, never see another waiting room, ever again. I could write a book on waiting room decorations, it would end on a tragic note. No more carefully rehearsed questions that fail to express what I really wanted to explain anyway. I gave up on lists some time ago, it makes you look like a hypochondriac nerd with issues. 

Some days, I just want to walk in there and look across the inevitable desk and roar: I feel ill, just do something. Whatever. Just let me lie over there on that stretcher and get on with it.

No more cheerful thank yous and smiles all round because I want to remain in the good books  when the shit hits the fan. I want to be the good patient, the one who is on the ball while at the same time understands the constraints of time and money, who can come up with short precise descriptions and not asks too much. In my ideal world, every person with a chronic illness deserves a personal assistant who organises appointments, tests, insurances, dinner dates and holidays, incl. cancellations and sick certs. I would settle for a robot.

And some days I want to test fate, just let things happen, just wait and see. What would happen if I pretend to be stuck somewhere without doctors and labs and pharmacies and all those shiny diagnostic tools. (After last week's x-ray, the young intern said, please remember to record it in your x-ray data card. Oh sweetie, I almost replied, nice try but I've lost track long ago.)

But whatever it is - panic, fear, worry or simply the fact that I love being alive just that bit too much - I cannot do that. 

And then there's this thought: I know I can look within and watch the stuff coming up - the restlessness, anxiety, impatience, fear and tears, the lot - just watch it come up and don't get involved. I know by now how it rises, how it eventually passes away. I know it requires patience, self discipline, sometimes distraction, sometimes a cup of valerian tea, a walk through the garden at night. I know that sometimes it takes ages and sometimes it can be just a matter of sleeping through it. And yes, I know that in the end I will be where I started: a woman with a serious chronic illness.  But what else is there? This is it, my gorgeous life. And I mean it.

This day 33 years ago, we got married.

the lungs

Breath from The Mercadantes on Vimeo.

Another lung function test, another diagnosis to accommodate into my fabulous life. Shit happens. Summer is gorgeous.