30 April 2017

"I can't be a pessimist because I am alive."

Let me start with a bit of music from Iceland. Just because.

The word of the day is rotten. I feel rotten. Physically that is, the mix of symptoms is yuk. Could be anything. Could be nothing. Probably something. I shall not be asking dr google again. Instead, I will just continue on the endless path through the complicated maze of diagnostics reserved for people with autoimmune diseases.
I could dwell on it in detail but apparently blogging about illness is not the thing to do. In terms of clicks and readers. But that's not why I blog anyway and it doesn't stop me from rejoicing about every single comment, wonderful readers.

So, against all trends and warnings, I shall just mention that I am spending this sunny Sunday lying on the sofa, distracting myself watching British tv thrillers, reading spy novels, solving cryptic crosswords, booking expensive flights to Portugal in eight weeks time - as one does.

And yet, yesterday evening, we cycled along the river just before sunset. The air was blue and pink and still and clear, the water was moving gently. People smiled. All was well(-ish).
If I can do that I can fly to Portugal. Not?

Last Friday, I had my first day at the rehabilitation centre. This is going to be hard and great fun. In my worst dreams I see myself failing dramatically, as in passing out and exiting the place on a stretcher. In my best dreams, I am walking out of there in three weeks time like a young deer, skipping and jumping. I am already deeply in love with the staff of experts and miracle workers. Anyway. Three weeks.

A few nights ago, I watched I am not your negro (because reading James Baldwin as a teenager changed my world) and from my distant and insufficiently researched and highly opinionated vantage point, aka high horse, Baldwin's argument here (from his 1965 debate speech at Cambridge University’s Union Hall) explained to me why that trump geezer got elected after eight years of Obama.
To punish, to show all those liberal and open minded and diverse people who's boss after all.

Tell me I am wrong, tell me I am ignorant. Whatever. (But watch the film if you get the chance.)
"I remember, for example, when the ex Attorney General, Mr. Robert Kennedy, said that it was conceivable that in forty years, in America, we might have a Negro president. That sounded like a very emancipated statement, I suppose, to white people. They were not in Harlem when this statement was first heard. And they’re not here, and possibly will never hear the laughter and the bitterness, and the scorn with which this statement was greeted. From the point of view of the man in the Harlem barber shop, Bobby Kennedy only got here yesterday, and he’s already on his way to the presidency. We’ve been here for four hundred years and now he tells us that maybe in forty years, if you’re good, we may let you become president."
read the source
watch the clip 

27 April 2017

my grandmother, three weddings and two wars

summer 1914
Look at the young woman sitting in the front right, my grandmother in her white dress and her fancy shoes with the pretty bow, she just celebrated her 22nd birthday. A few weeks ago, the archduke of Austria and his wife were assassinated in Sarajevo, an event that triggered the first world war. I wonder how much she cared about it. There, in her picturesque little Franconian hometown. At the time of this wedding, the war has already begun. Five of the men are in uniform. Did they worry? Did they feel enthusiastic,  heroic or even patriotic? The two brothers of my grandmother are not in this picture.  Maybe they have already joined the royal Bavarian army of king Ludwig III, who pledged allegiance to the German emperor, maybe they are well on their way to fight in the battle of Lorraine.
I find it hard to imagine that Franconia at the time was not part of Germany, that all the schmaltzy stuff, the gossip and stories about the glamorous lives of the Bavarian kings, the sugar coated Disney castles by the lakes shadowed by the grand panorama of Alpine mountains, where today the tourist buses queue for parking, was at the center of adulation of my grandmother's youth.
During WWI, with her brothers and her father in uniform, she managed the family's hardware shop, the blacksmith's forge, she became a coal merchant and a haulier. She often talked about this time, she was happy, the war and the men (who put her in her place) were far away. And she was good at her job.
Her hometown did not suffer any damage. Her brothers returned unharmed. She handed over the business to them in excellent shape and got ready for what was considered her real life.

summer 1919
The war over, five years later, here she is at her sister's wedding to the owner of the local brick factory.  An excellent match for the town and the two families. Franconians tend to think that way. Newly married herself, she is standing behind the groom, who initially had asked for her hand in marriage but she turned him down (too slick, never liked that mustache, she claimed). Instead, she holds on to her own precious catch, my grandfather, who read law in Munich and was already on his way to become a judge. This was not a love story. I don't think she looked for one. She wanted - and found - status, financially and socially. Everything was going to plan.
The wedding party is gathered here in the courtyard of her sister's future family home. My father has many stories of childhood holidays in and around this courtyard, climbing onto the kitchen window ledge to ask for a slice of fresh sourdough bread with jam, chasing chickens and piglets across the cobblestones, carriage horses being fed and watered, bicycle races with cousins, lanterns illuminating summer evenings with family gatherings, charades, amateur theatre and singing.
My great grandmother looks tiny, as if she is hiding (5th from the right in the front) but I am sure, she was on top of the world, both her daughters now in good and prosperous hands. And that short fellow - with his ears sticking out - standing next to the bride, he became the great tragic love of my father's sister. Since childhood and forever. But she wasn't even born yet and their sad story would not unfold for many years. 

summer 1939
Leaping forward twenty years and another war is on the horizon. By now, my grandmother has achieved what she set out for - and more. Her husband (not in this picture) has climbed to the top of the career ladder, the family is living in the house that she designed herself (where my father is living now), she has a large garden, an orchard and a maid. She now has three children, the third, my father, an unfortunate and unwanted late surprise. She is standing behind the bride of her younger brother. Her first born, my godfather, beside the bride, is wearing the uniform of the Reich Labour Service, a compulsory duty introduced by hitler for all young people aged 18 to 25. He was in his last week and due to start university in the autumn. Next to him, his sister, my wild aunt. Her tragic love story already heavy on her heart.
Behind the groom, we see the groom from the previous picture and his wife, the young bride from 1919 now wearing glasses, their three teenage children in the row below her.
My great grandmother, much aged, sits beside the groom.
Where were you?, I ask my father. He cannot remember. And your father? He probably had to be elsewhere. As usual.
The young people in the second row, my godfather, my wild aunt, their three cousins next to the groom, they all went to war, one way or another. One did not come back, Hardy, third from the right. He is missing in Russia.
But today, everybody in this picture is dead.

23 April 2017

Another morning. I made it. Life shifts and changes gear once again and there is a pale sun shining on the frost damaged garden. We lost a row of potatoes, most likely. The wisteria looks like a badly hung curtain in need of a wash but blossoms are opening up in between. I just did my silly duck walk down to the river and back. I am alive it seems.

Thank you all for your kind comments, you are wonderful. 

Nights always shift everything out of proportion and no, it doesn't help knowing how this has been researched and confirmed by neuroscientists. But once in a while, I think I need to face the darkness with its terrors.
I mean, it's not as if I have much of a choice. My mother was an addict, she spent every night fighting her demons with whatever came in handy. When I was 13 and nervous about a school exam, she slipped a valium into my hand the night before, this will help dear, take it at breakfast.  She was never up when we left for school and I forgot. It only happened once. A while ago, I asked my siblings, did she ever offer you anything as well? It was a difficult conversation, fraught with jealousy and despair. As adults, we think, how dare she. As her children, we think she cared and why her, why did she not offer me one as well and all that fierce competition for her tiny morsels of affection.
We will never speak about it again. But at least that memory is no longer one of my night time terrors.

But there you are, this road is not open to me and so I work my way through my stash of distraction methods and valerian tea if the darkness roars too loudly. It all sounds so easy now as I write it down. It is not. As you know.

Yesterday was Earth Day. Which really is silly because, every day is earth day. We just forget. It's easier. I saw R off to our local march for science. He rarely does go for the crowds but this matters. Later, I met him halfway when he cycled back home along the river in the freezing cold wind.

And here is a short video of Emmanuel de Merode, director of Virunga National Park (Republic of Congo - a place I want to visit in my next life) training for today's London marathon where he is running right now to raise funds for this amazing sanctuary.

If you have the time and want to watch this documentary about Virunga, I think it's still on netflix.

Sometimes I wish I could type 'help me' into google. I wonder whether this is a sign that I am spending too much time online. Or maybe I want to stop thinking and feeling for a while. Hand it all over to a robot running on binary. Or whatever.

I am not joking.  It's just that I cannot sleep for a million reasons.

17 April 2017

When I look across our quiet street from the windows beside my desk, I can see a row of terraced houses built in the 1950s. Our neighbourhood is one of the economic miracle housing estates, hastily built and quite ugly, semi-detached and terraced. Most houses have been revamped by now, some several times over. Larger windows, broader front drives, sun porches, small greenhouses, PV panels on the roof, insulation, all the mod cons of our fabulous times.
There is just the one in the middle that looks old and kind of drab but with a wonderful front yard full of flowers. Ever since we moved here almost 20 years ago, an elderly man has been living in it and we have tried completely unsuccessfully to be neighbours. I greet him every time we meet and he steadfastly looks right through me. It's not just me, he talks to almost nobody around here. Rumours are that his wife walked out on him, taking the children. Many years ago. Before my time.
He is a man of habits, obviously retired. In the mornings, I see him dumping his teabag in the compost bin, after lunch he wheels out his bicycle for a short ride, occasionally, he takes the bus to town dressed in his trench and wearing a hat. In the summer, he has a man in to do the garden and once a week, a young woman comes to clean. He must be quite old now, in his 80s, I guess. I last saw him on Good Friday walking carefully along the flowering lilac bushes at the end of the footpath.
But for the last two days, his blinds are down, the curtain of one of his upstairs windows is half drawn.
I think he died. Or is in hospital. Someone arrived and let himself into the house yesterday.
I don't know this man but I am shaken by waves of anxiety.
We are mortal. We may think we know it. But we don't.
I made R check his blood pressure twice today. 

I am working on losing that fear of having back problems forever, I am not very successful. I am not in agony, but for reasons totally out of my control I think I should deserve no pain whatsoever. The other night I watched a talk by one of the eminent medical specialists who peddle their expert knowledge on the media incl. books and dvds and stuff. He looked impressive and fatherly standing there, first on his left and then on his right leg, demonstrating how this stance improves the strength of the entire back and that we should all brush our teeth standing on one leg. Then he had the audience bounce on their heels and after another 20 mins of positive vibes and hilarious exercises,  I felt a lot better. Also, his purple trainers looked good in combination with his little round belly. On his website, he provides impressive statistics and after 20 years of proofreading medical research papers, I have developed a considerably awe of statistics. Rather: I haven't a clue. If two thirds of my fellow citizens suffer from back pain at least once every year, I should be able to handle this. That and the fact that only two percent of back pain events require surgery. Plus, I think I am owed extra credit in that category, having had spinal surgery twice in the space of 21 years.
So on good days, I am slowly getting there. As regards the back. We went walking in the woods twice now and I survived. Yesterday, I slipped and fell on my bum, hard. And I survived.
As for the other symptoms of which the ongoing weight loss seems to be most alarming to some, I quietly list them as per instructions for the next medical appointment.
They don't bother me as much as they do R (I am as brainwashed as the next woman when it comes to surprising weight loss) but overall, things are a bit all over the place and I am grateful for a world of distractions.

15 April 2017

We may not have an anthem

we may not have a flag
we are the world of
people who move,
people who move on

we are called migrants
immigrants, refugees, asylum seekers,
stateless, no papers,
on the run...
we are, they say, a diaspora
we are, they say, between cultures
or a mosaic of cultures
sometimes we are, they say,
rootless cosmopolitans
or citizens of nowhere

sometimes they say
or we say
we are in exile
but that asks us to imagine we are spending all our time
looking back over our shoulder

we are
supposedly in a limbo
lacking something
that everyone else has got
and the only solution is for us to join in the anthem
and grab the flag
only then will we become the real deal:
a full human being

up until then they say we are divided, split people
people who are less than whole
just hanging, suspended
in a state of longing for what’s been before
and longing for something here
that we can’t ever have
no matter how hard we try

but there’s no need to try:
this ‘true state of being’
that can only be true
when it’s a Not-migrant, Not-immigrant
state of being that we have to long for,

we can say we are the travellers and movers
the sometime settlers,
the migrants, the immigrants,
the diasporas,
we exist
we live, we work,
we eat, we breathe
we may look after others
we may be looked after
we may find love
love may find us
but we don’t need shame
we don’t need guilt
we don’t need to hide
we don’t need to apologise
we don’t need to beg or grovel

we are the world of
people who travel
we are people who leave
people who move,
people who arrive
Yes we can say
we have arrived
but we may leave again
and arrive again
you cannot sum us up
as purely of one place
simply because we are in that place
your snapshot of us may say
we are here
it may say we are there
here or there
there or here
but in a life
we might be both here AND there.
in a family across generations
parents, grandparents, children
we might be both here AND there
there AND here
and we are not less for being so

Michael Rosen, yes, THE Michael Rosen who wrote We're going on a bear hunt and all these wonderful poems for children to keep a clear head and get on with the wonder of life.

13 April 2017

The link to the video is here.

10 April 2017

Killary Harbour/An Caoláire Rua (Atlantic coast Ireland) 2009

Reclining on the blue leatherette space chair, I fiddle with the remote control for a while, figuring out which way to lift the various leg support options and how to keep my back straight, where to plug in my phone and how to avoid getting the headphone cord tangled up with the iv drip tube. I put my flask of chamomile tea on the little side table, together with the container of porridge with fresh blueberries R made earlier (I eat it cold in the end, my bp was too low to wait for someone's help with the microwave), the paperback (I never opened) and the stack of consent forms I had signed earlier.
And for the next eight hours I am surrounded by calm, kind efficiency. By people who wake up in the morning and get ready for a meaningful day, taking blood samples, adjusting infusion speeds, monitoring bp and heart rate, who run down aisles and hold hands and untangle cords and show off their colourful socks to make me smile. All day I was showered with dedication and purpose (which in my case was to administer the next round of monoclonal antibody therapy). I loved them all.
There I was, feeling broken and pretty useless, my life's purpose and dedication gone out the window (at least for the time being) and for a moment, I wanted to shout, don't waste your beautiful, efficient energy on me, I've had my share, go and look for what needs fixing so much more urgently.

But believe me, at the same time, I urgently wanted them to spend it all on me and me alone. And yet:

We already have everything we need. There is no need for self-improvement. All these trips that we lay on ourselves—the heavy-duty fearing that we’re bad and hoping that we’re good, the identities that we so dearly cling to, the rage, the jealousy and the addictions of all kinds—never touch our basic wealth. They are like clouds that temporarily block the sun. But all the time our warmth and brilliance are right here. This is who we really are. We are one blink of an eye away from being fully awake.

Pema Chödrön

06 April 2017

If we want to support each other's inner lives, we must remember a simple truth: the human soul does not want to be fixed, it wants simply to be seen and heard. If we want to see and hear a person's soul, there is another truth we must remember: the soul is like a wild animal - tough, resilient, and yet shy. When we go crashing through the woods shouting for it to come out so we can help it, the soul will stay in hiding, but if we are willing to sit quietly and wait for a while, the soul may show itself. 

Parker Palmer

02 April 2017

Mostly, I am angry and I am the first person to point out that it's not something to dwell on. And I couldn't even identify a particular reason. I just get mad at about everybody and everything.
Like a ten year old I am looking for the icky nasty whatever to blame and lash out at.
Seriously, I almost feel like laughing. This must come to an end. If only I wouldn't be so mad about it.

Spring is exploding around us and the garden is in top shape thanks to none of my personal efforts. Although I did move the lawn mower around for a while yesterday while R pointed out all the bits I missed. There is fresh asparagus waiting to be cooked, rhubarb ready to be picked for a crumble, the pear trees in full flower and so on.

My physio program is showing excellent results, I feel like Michelle Obama when I stretch my upper arms. Alas, the right leg remains a stubborn and pretty useless piece of unresponsiveness.

Tomorrow, my boss wants a telephone conference and I have been rehearsing one hundred ways to tell him that my health is none of his business. But I will probably cave in and let him walk all over me as usual.

It doesn't matter, really.

This here is the current president of Ireland, Michael D Higgins. He is just a nice guy, a published poet as well. His role is basically ceremonial and representative, his political influence is marginal, a bit like royalty. Here, we see him at a funeral, consoling the son of a Coast Guard pilot who died when a rescue helicopter crashed two weeks ago during poor weather conditions.
I wish every country had a president like him. Anyway, this picture makes me feel less angry.

Picture source: Eamonn Farrell/Rollingnews.ie