28 May 2017

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.


27 May 2017

Ahh help me baby, or this will surely be the end of me, yeah.



A couple of years ago, I would listen to this song every day and it drove my daughter mad. She banged her door in disgust and called me all sorts of names. I bet she doesn't remember.

Gregg Allman died today. Much too early.

26 May 2017

A hot day. Let's call it summer. The wisteria has finally recovered, busy new growth has almost completely overtaken the frost damage. All of the roses are in bloom, the first veg are harvested. I am married to a gardener.

The sun was not yet up, and the lawn was speckled with daisies that were fast asleep. There was dew everywhere. The grass below my window, the hedge around it, the rusty paling wire beyond that, and the big outer field were each touched with a delicate, wandering mist. And the leaves and the trees were bathed in the mist, and the trees looked unreal, like trees in a dream. Around the forget-me-knots that sprouted out of the side of the hedge were haloes of water. Water that glistened like silver. It was quiet, it was perfectly still. There was smoke rising from the blue mountains in the distance. It would be a hot day.
Edna O'Brien (The Country Girls)



The past couple of days have been filled with sheer exhaustion and huge portions of the day I just spend sleeping or dozing. I try to not think why this is so.
And yet, I am so restless.
I hear my mother's voice somewhere from deep inside of me, her disgust with my lack of dedication, the way I just do nothing, letting myself go. In an attempt to shut her up, and like the good daughter I was I am not watching tv before sunset. She would certainly also disapprove of my laptop even if I showed her that I mostly work and read on it. Proper literature, serious news media and all.

In brief moments of absurd clarity I realise that I am no longer the person who needs to be afraid of her judgement. It's only a memory. 

24 May 2017

"Altruism and empathy are what binds us together, and what defines us. We should let no one distract us from this central fact of our nature: neither terrorists nor those who, in response to them, demand that we slam our doors in the faces of an entire community or an entire religion.

Our humanity, in both senses of the word, is on display all over Manchester. You can see it in the queues at the blood donor centres, in the hotels and the private houses that have been thrown open to people stuck in the city after the concert, in the messages posted on social media to help people find missing members of their families, in the donations that thousands of people have made to support victims of the attack, in the taxis giving free rides to hospitals and homes.

But it’s not just Manchester: almost everyone, everywhere, behaves like this. And it is when horrors such as the bombing strike that we remember it. Our task now is not to become the society the terrorists want to create.

So let us celebrate what we are. Let us stand in solidarity with the victims of the attack, while ensuring that justice reaches the perpetrators. And let us not allow either a tiny number of psychopathic murderers, or those who in response to them wish to suppress our humanity, to distract us from the magnificent facts of our nature."

George Monbiot

20 May 2017

basically, it's a gamble

Things are falling apart around me, on sick leave since forever.  I think I need a plan.
As a start, I need to remember what day of the week it is and also, the actual date, the month, what season and what the next meal will be.
Next, I must put that phone call out of my mind, the one where my boss (the much lauded super important research scientist) told me yesterday that - as I am obviously neither getting any better nor any younger - he has started not only to advertise my position but to interview my prospective replacements.
I also need to laugh about the email from his secretary, the one where she invites me to attend the first interview on Monday at 9 am.

I have never wasted much time thinking of what my life would be 'later' when I am no longer working, when we're old. Not in any detail. Of course, there were the wild dreams of travel, years of travel, working odd jobs along the way, visiting places, people, ideas, getting wiser, more grey hair and maybe having slightly less energy, becoming more modest in our physical adventures. Stuff like that. Airy fairy stuff.
Whatever. But my health, I took for granted. Never wasted a thought on it.

But none of that really matters.
Early this morning I sat on the floor in a corner of our bedroom, blowing my nose after a spell of furious sobbing and kicking and hissing at life in general and me in particular when R opened the window wide and said, oh look, blue sky.
That's when I ran out of excuses. And the day has been quite lovely so far.

There have been many days like this one in recent years, reminding me that basically, I can be a positive confident person and that there is no place in my life - tough as it is at times - to be upset about losing my job and worrying about reduced financial means or moaning over someone's outrageous attitude to my illness and all that shit.
I still love a good cry, though.


16 May 2017

For a short while after my mother's death I would wake up with a start, thinking, what if she can watch me now, all the time, day and night, everywhere, what if she can read my mind, hear me talk, see me get hurt and how I hurt others, lie to people, cheat with my taxes, eat the wrong food, make mistakes. What if she finds out that I am glad she is dead, that I am relieved, that I can sleep much better now.
Will she be upset, sad, angry? Will she punish me, lash out at me, make my life miserable? What price will I have to pay for deserting her?
I was 40 years old, scared, the way a child is scared of being found out.

But it was only for a short while.

Often when I think of her now, I see her walking alone behind us the day my brother's youngest child was baptised. For weeks, my brother had been negotiating with our parents whether they would find it in their hearts to both be there. Regardless.
But no. They were adamant and in a bizarre way, for once in total agreement with each other. Either him or me, either her or me.
My brother cried, briefly, my father decided to get out of the picture and my mother got her hair done. That sounds harsh. It was exactly that.

The day was glorious, a perfect summer's day in the Franconian countryside, a baroque church in a small village among rolling hills, a long line of tables under the thick, cool canopy of walnut trees, singing and laughing, food and wine. And later, after too much food, a walk down to a small river. Setting off in small groups, talking, joking, children running ahead, the adults passing babies and toddlers from one set of arms, shoulders to the next.
My sister puts a hand on my shoulder and whispers, look back. I turn and there she is walking all alone, already some way behind us, my mother in her elegant suit, her expensive handbag, her high heels, despite her condescending smile she appears almost lost, helpless.
I look at my sister and I swear, we are about to turn and walk towards her. I can feel her pulling us, her two dutiful daughters, coming to her rescue, keeping her company, making her life bearable - or at least trying to.
No, my sister takes my hand. No, let her walk alone. Leave her, she is almost shouting at me. We are running now. When we reach the river, my sister has stopped crying.
Much later, my mother carefully sits down beside us and lights a cigarette. Silently.

15 May 2017

I didn't make it. All that aqua cycling and deep muscle fitness building, the physio sessions, the hydro jet massage, the pep talks on proper posture (incl. exercises) and how to run a conference without too much unhealthy sitting down, the practical lessons on how to load a dishwasher after spinal surgery and why pillows can be bad. In the end, I just caved in, my legs folding under me ever so slowly. And whoosh, I am out. Regulations, my dear. So sorry.

And now more diagnostics.
May be this.
May be that. 
Maybe just bad luck.
Try not to think ahead.
. . . what ancient and obdurate oaks are uprooted in us in the act of sickness . . .
Virginia Woolf


10 May 2017


Week two of the rehabilitation program and the earth is still turning. Today I actually walked out of the building in relatively high spirits, delighted with the prospect that I if I can manage seven hours of this, I may be able to  attempt working four hour days in my office again. Eventually, i.e. in the distant future three weeks.

I drove home, a cheerful sun was shining at last, I let myself into the house and promptly collapsed onto my bed. But hey, I am barely half way.  Many - tons of - more exciting hours of physiotherapy and muscle rebuilding and nerve stimulation and whatever else are ahead of me.

Walking of course is still a euphemism for what is actually happening when I lift one leg in front of the other. It does look like it from a distance, in slow motion, for a short while. Which is better than nothing. And I can get from A to B.
As of today, I am trying out a snazzy looking but rather complicated velcro concoction that I strap around my ankle and foot - with no noticeable effect (yet?). There is a selection of alternatives, which I am going to work my way through under the watchful eyes of a jolly occupational therapist who is also going to bully my employer into providing an electronically height adjustable desk with matching state-of-the-art desk chair. If the next session with the good rehab doctors results in them considering me fit for work (incl. getting there and back), that is.

The coffee is decent, the food is disgusting but luckily, I can bring my own. The company is delightful. Today, I spent one hour with three bus drivers, we were cycling in a pool of hot water up to our necks, talking about our surgeries and the best ways to get our spouses to do more or less all of the heavy lifting before racing each other to the finish. I won, which means that I can choose the music for the next session in two days time. (The bicycles are stationary. The music was hard rock.)

So, all in all, life is surprisingly different all of a sudden.
While shit happens all over the place.

And now for something completely different:

 


04 May 2017

the butterfly thief - a poem by Kathy Jetnil-Kijiner




read the story of this poem and the background to it here on Kathy's blog.