26 March 2017



No supernatural powers
Need be invoked by us to help explain
How we will see the world
Dissolve into the mutability
That feeds our future with our fading past:
The sea, the always self-renewing sea.
The horses of the night that run so fast.
Clive James


After seven years I am almost used to living with this disease. Almost. In other words, I am not and I doubt I ever will be.
But there is such a strong desire to relax into this state of imperfection, of all the quietly murmuring threats and sudden periods of unrest, of never quite getting there, of frayed edges and dark holes I might drop into at any moment.
I want to feel all this without being frightened, without feeling diminished or less alive. Living with a chronic illness does not mean that my luck has run out. It's just a different kind of luck for me now.
There have been times - and now is one of them - where I have been so washed out and overwhelmed by symptoms and additional events and all the tests and treatments etc. that doing normal stuff ever again seemed almost impossible and as a result, it took me weeks and weeks to regain my confidence.  Last week the physiotherapist praised the way I can now spread my toes and hold my leg.  When afterwards I tried to explain this to R I could not find the same enthusiasm for what suddenly felt like only a minor achievement. After all, the recovery from the spinal surgery is as good as completed. In moments of weakness, I let out brief sobs of frustration, as I may never recover the full use of my right leg again but it feels more like a small mechanical glitch (as long as I can cycle). But in the bigger picture, the one where ANCA vasculitis rules, this is truly nothing.

No cure, only The Cure:



This  morning on the phone to S, I overheard R mentioning for the first time the possibility of me never going back to work.  I am not so sure, I shout.



24 March 2017

to expand the definition of ‘us’, and shrink the definition of ‘them'

When Bill Clinton was elected for the first time in 1993, a friend from the US sent emails to everyone she knew.  She wrote that this was a new beginning after years of darkness and that she was so delighted. When Bush was elected eight years later, she wrote emails again, expressing her dismay. When Bush was elected the second time round, she apologized to all her foreign friends for letting the free world down.

In 1999, I actually shook Bill Clinton's hand. Nothing to get excited about, I was part of an invited group of onlookers (the things you do on a Saturday afternoon) and he decided to mingle unexpectedly. He was much smaller than I had imagined, his nose was big and red and I didn't think much of the speech he gave. In fact, I had come to listen to another speaker.
Anyway, I am neither here nor there as regards Bill Clinton.

But when I listened (on the radio) to his eulogy at the funeral of Martin McGuinness a few days ago in Derry, he got to me. It was a moving speech, full of humour and great feeling, personal and honest. Not some scripted garble read from a teleprompter. It's only 11 minutes long but worth listening to. And I couldn't help but compare. With that nasty excuse of a president across the pond. Whom I cannot imagine spending sleepless nights on peace negotiations in a small country across the pond, whom I cannot image to even have respect for someone like Mandela. To work for a future where we need to expand "the definition of ‘us’, and shrink the definition of ‘them'". 



For the record: I have never been a friend of Martin McGuinness, have no great sympathies for Sinn Féin or the IRA, be it historic or recent or any of the splinter groups. But I have even less sympathies for the loyalists, the various protestant parties and paramilitary groupings and ancient orders.


Info on strange words in the eulogy:

  • Taoiseach (pronounced: teeshock) = prime minister of Ireland
  • President Higgins = Michael D. Higgins, current president of Ireland
  • Gerry = Gerry Adams president of Sinn Féin, life long companion of Martin McGuinness, both were active leaders of the IRA during the Troubles in Northern Ireland
  • First Minister Foster = Arlene Foster, leader of the (protestant) Democratic Unionist Party (DUP) in Northern Ireland. Both her father and herself as a teenager survived bomb attacks by the IRA. 
  • What the sitting Taoiseach said in the US  = St. Patrick was an immigrant
  • Ian Paisley = Protestant religious leader in Northern Ireland, life long active (and vicious) opponent of any peace process in Northern Ireland became friends with Martin McGuinness when they were both elected as leaders of the Northern Ireland government in 2007. 
  • John Hume = former leader of the Northern Ireland Social Democratic and Labour Party (SDLP), co-recipient of the 1998 Nobel Peace Prize.

21 March 2017

just a dream

We are on a ferry travelling to Heligoland. The ferry is crowded and noisy and we have a hard time keeping track of each other. On land, I have an appointment with a surgeon who makes two large incisions in my abdomen. His operating theater is the back room of a pub. He remembers something he must get and puts a large brown sticky bandage on my abdomen.
I wait for a while but I know that he is not coming back. I get up and try to find R and the friends we have been travelling with but the crowds push me towards the railway station and I take a train home.
When I walk into the house, R and all his things are gone.


I rarely remember my dreams. This one felt like a cold wind when I woke from it and I had to get up, wrapped myself into a blanket and went downstairs where R was going through his early morning teacher routine (listening to the world service, reading on his phone and drinking black tea). Like a child who cannot keep a secret I blurted out my dream and he looked at me and said, it's just a memory of your mother, go back to bed.

In the late 1980s, my mother repeatedly tried to kill herself - unsuccessfully. I wasn't there, I have no idea how serious she was, how much of it may have been due to whatever mix of drugs and drink she was trying to shake off. I had left all that behind me years ago. I was safe and sound living in paradise.
My sister eventually forcefully persuaded her to spend some time in a fancy clinic on the North Sea coast and when she returned home after several weeks, probably sober and with good intentions, my father had packed up his stuff and left like a thief in the night.
Years later during one of our rare visits she told me that while in the clinic, she had read a travel guide to paradise and had made inquiries about airline tickets and vaccinations, putting all her hopes of recovery, of saving her marriage, into visiting the daughter who had abandoned her and who was now living in a tiny African country.  And while she told me this, she started to cry and then she pulled the travel guide from the bookshelf and threw it into my face and I left. That was not a dream. That was how we communicated.

Heligoland is a rather dismal place, a small island in the middle of the rough sea, crowded with day visitors buying duty free booze. At least that's what it looked like in the summer of 1978. But i was seasick and supposedly chaperoning a group of troubled teenagers. A job I got through the student union.

18 March 2017

just one day

Spring is just around the corner. The spuds are in the ground. Pulsatilla, almond trees and the little quince tree are busy flowering. The hedge is greening and the blackbirds are messing through the compost. Sitting outside for my solitary lunch today I spotted a butterfly, a painted lady (Vanessa cardui) just like the five we released last summer and decided that it had migrated back to us. And why not.

I am in a strange place. Hovering in between my spectacularly crashed house of cards, aka rehabilitation program, and the dreary reality of upped meds and a week of diagnostic testing ahead of me incl. hours pretending to read meaningful literature on my phone in waiting rooms.

In other words, the immunologist suggested I was not exactly fit enough for three weeks of six hours/day of physio and massage and jogging under water and whatnot and gave me the sternest of looks across her monitor and a short snappy lecture on treatment priorities and the dire potential of my current display of B - symptoms.  Of course I crumbled like a stale pretzel and almost apologised.

Part of me feels like a fake (what if these symptoms are only figments of my imagination?), while the remaing pitiful rest is trying to run away from admitting that I may have asked for too much.

That whole patience stuff? I'll never get it.
Whereas R - bless him - insists that I have been here before and will crawl out of it again,  successfully (with the help of the next round of monoclonal antibody therapy).

Meanwhile. I cycle along the river. Thirty minutes (or 6 amazing km) at a time pushing against the wind.  I may not be able to walk with two legs but who cares. Keeping up appearances. My mother taught me as much.

PS. I am not in pain any longer. Not really. Just finished week 12 of sick leave and the German health system based on the principle of a society of mutual solidarity (as opposed to charity or lottery or profit margins) is paying 90% of my salary. However, the required paper work is incredible. Who reads all these forms? Is this meant to be a new form of therapy?

14 March 2017

Ireland is a tiny country, somewhere to the west of the UK. No matter what, the number of people who think Ireland is just the same as the UK, who think it is actually a part of the UK, baffles me still.
So do the romantics, the people who have visited to see the land of their ancestors or the concept sold by Irish pubs worldwide or whatever, and found shamrocks and strange dark beer with creamy tops and maybe some deep Celtic mystery, but more likely leprechauns and jolly dancing and all the other stereotypes.
I was one of them, many years ago. Now, I only want to visit and when I do, I fall in love with it, landscape, people and all, and want to move back, immediately. But my Irish man will not hear of it.  He does have the bigger picture. Believe me. He loves Ireland, too.
Ireland is complicated. But Ireland is European, fiercely European. And Brexit is not. And that is going to be a huge problem. Something to be afraid of. Because there is the matter of Northern Ireland, that small upper right hand corner of the island of Ireland. And I ask myself these days, does Theresa May actually have any idea?

To illustrate my point, first Seamus Heaney (Nobel Lecture 1995)

One of the most harrowing moments in the whole history of the harrowing of the heart in Northern Ireland came when a minibus full of workers being driven home one January evening in 1976 was held up by armed and masked men and the occupants of the van ordered at gunpoint to line up at the side of the road. Then one of the masked executioners said to them, "Any Catholics among you, step out here". As it happened, this particular group, with one exception, were all Protestants, so the presumption must have been that the masked men were Protestant paramilitaries about to carry out a tit-for-tat sectarian killing of the Catholic as the odd man out, the one who would have been presumed to be in sympathy with the IRA and all its actions. It was a terrible moment for him, caught between dread and witness, but he did make a motion to step forward. Then, the story goes, in that split second of decision, and in the relative cover of the winter evening darkness, he felt the hand of the Protestant worker next to him take his hand and squeeze it in a signal that said no, don't move, we'll not betray you, nobody need know what faith or party you belong to. All in vain, however, for the man stepped out of the line; but instead of finding a gun at his temple, he was thrown backward and away as the gunmen opened fire on those remaining in the line, for these were not Protestant terrorists, but members, presumably, of the Provisional IRA.

Second, Martina Anderson, Member of the European Parliament, today (I am generally not a friend of Sinn Féin, her party, but she does have a point):




,

09 March 2017

Dear universe,

I feel so ashamed for having been such a moaner recently. Every morning, I wake up with the best intentions and by midday, I have lost the plot, again. Let me assure you, I do know that there is much going on and yes, I could, should concentrate on the bigger picture. You deserve better from me, much is at stake. I don't quite understand why it is a struggle right now for me but there, I admit it.

I don't want to sound ungrateful, after all, the evening sky was magnificent, all these towering clouds after the rain storm.  

But please, I want to have more courage, trust, and oh, dignity. Let me figure out how to be a decent human being again. A woman not afraid of changes and ageing and illness, but someone with the confidence that her body knows how to cope and recover. Allow me to face my fears, to stop cowering and pretending that by not looking at them - square in the face, so to speak - they will disappear. 
(Still, reading The Great Gatsby again in one go last night was a wonderful distraction. Thank you.)

Also, while I have your attention, let me find my place again, you know what I mean. My place in this chaotic world.

I promise to try my best from now on. So please, would you nudge me in the right direction? 

Thank you.
Sincerely, 
the stranded beetle



PS: The grape hyacinths are lovely this year. Well done.



 

07 March 2017

Paula's House of Toast

Almost straight after I started blogging, I found Paula's House of Toast, a treasure trove of poetry and the most exquisite photography and by-the-way observations. 
Her posts made my heart leap and open my eyes to the intricate beauty of nature again and again.

In April 2015, she wrote
There's nothing like a sudden calamity to bring things into perspective.
The calamity was a brain hemorrhage and she died some weeks later.

Her blog is still online and I hope it will remain there for ever as a celebration of Paula's gifts and insights. You can get lost there, reading and thinking for hours.
The blog is here. 

Today, her partner posted a link to a review of Paula's poetry and oh my, she was an amazing poet.

…We, who boast of souls, can't countenance
the gray and small, the commonplace and humble.
Yet watch the squirrel flow along the fence,
feet grazing the pickets, impossibly nimble—
he does not amplify his self-display
in social media, or leverage
his brand, consultant-honed; does not employ
a life coach, guru, shopper, trainer, mage.
Undisturbed by thoughts of betterment,
he gazes back at me through window glass
with such a pure and cold indifference
that it could swell and fill the universe,
replacing profit, noise, ambition, greed
with something truer than the love of God.

06 March 2017


(just for fun, soundtrack of a wild year)
 
I went into a bit of a huff last week. Sliding into a dark pond covered in duckweed, knowingly and yet, the way it makes you feel. Guilty and couldn't care less at the same time.
Oh poor me and so on. But shhhh, nobody was looking.

And then I cycled. Twice. Short cold windy distances. Terrified I should do harm to my back. But, oh the freedom.
This is me with my first proper bicycle, in 1964 the summer before I started school, I am six years old.
This is my grandmother (never granny) with her bicycle in her hometown. She is maybe 12 years old, so this picture was taken 60 years earlier, 1904 or thereabouts. She never learned to drive, never had to. Every Monday and Thursday, she cycled into town, on the cobblestone pavement, for market, butcher, baker and gossip, until she was well into her nineties.

My application for the medical rehabilitation program has been approved, starting next week Wednesday, six hours/day, five days/week for three weeks. I expect nothing short of miracles. Seriously. Or else. (I am scared shitless it will come to nothing and I shall remain a stranded beetle forever).




04 March 2017

What would your superpower be? To be able to show people that we are linked, not ranked.

Gloria Steinem in today's Guardian.

01 March 2017

This is what the good people at the inner sanctum of rehabilitation programs for women approaching 60 told me on the phone today:
Our assessment has been sent out to you by post today. Details on our decision are not communicated by phone or email.
Jeez, I am not good at waiting. 

If they refuse, R reassures me, we'll get you into it privately, we'll have something figured out by the end of the week.
I have seen worse cases, my GP tells me, believe me.
Be patient, the physiotherapist lectures me, peripheral nerve damage repair can take a year or longer.

In my mind I am calmly frantically considering early forced retirement.
My bicycle could be ready tomorrow.