30 August 2014

The summer is over, so we are told. But wait, I know that September can be wonderful with long sunny days full of colour and balmy winds. Still, R tells me that now is the time for ripening and rotting. In horticultural terms.
I am making a note to buy a black dress, you never know. Be prepared.
My new GP decides I need to rest for 10 days, at least. Do nothing, sleep and read, she says. I dream of crying babies, complaining teenagers, screeching brakes and wake to find the little blind and deaf cat beside my bed, wailing and stubbing her nose into the quilt, unable to climb up. Can cats feel lost? 
Often, I just watch myself fraying at the edges, the taste of blood in my mouth mixing with the bitter sting from the tablets in the morning. Touching the small round bruises along my abdomen from the injections, this one, three weeks ago, this one from last week, the new one from yesterday. Insignificant markers of being alive and well. Sort of.
My biggest fear has nothing to do with health. I know I will not heal. My biggest fear is loneliness.

22 August 2014

Angry? Sad? Frustrated? I don't really know. I have a rare disease, one of these things that happen to very few people. Apparently, the majority of sufferers of my disease are female and middle-aged, not as attractive as young children. Some of us will die early after diagnosis, most often of kidney failure, but basically, any organ can pack it in, any time. For most of us, drugs help us to keep up a semblance of our former active and healthy lives, but there is always the rumbling of the volcano in the distance. We don't look ill. We look lazy. 

As with all rare diseases, research is limited. And not necessarily because of funding. The pharmaceutical industry is already making a fortune from the drugs to suppress the immune system and from the drugs to treat the side effects of the immune suppressing ones. Why find a cure? 

Sarcastic, I know. 

But to be realistic - and I have read my stuff, plus I do know a thing or two about medicine - the idea of a cure is so far fetched, nobody in their right mind would set out to look for it just like that. It's complicated and maybe one day in the distant future, someone will find a link, the secret code to open the door to the immune system.

Of course I want this to happen. In my perfect world, I want scientists to research day and night on cures and treatments, regardless of whether the disease is rare or affecting millions around the world. 

But I also want improvement for today's sufferers because whatever researchers may come up with, it's too late for them. I want a share from every ice-bucket-generated money to finance better wheelchairs, better accessibility, computers, touchpads, phones, speech support, cars, the whole technical show of wonders, whatever. And while we are at it, annual holidays for ALS patients, families and carers, and never again any hassle with insurance costs or permits. 
But most of all, I want this to be self evident.

Only when the last ice bucket has been emptied over the head of another shrieking celebrity will we realise that ALS and hundreds of other rare diseases are still fatal. Or maybe not even then.

17 August 2014

Results of a weekend of tooth ache and the potential threat of yet another extraction include a decent batch of mirabelle plum and peche de vigne jam, two episodes of The Great British Bake Off - watched in one go - and lots of knitting, while the blind and deaf cat followed me around, sniffing me out and stubbing her nose into my legs.

And that's not all of it, but at times I am above the fog. I swear.

14 August 2014

What do you do when you are unhappy in pain?
Sit quietly for a few minutes and become mindful of your breath as it goes in and out. Then contemplate what you do when you’re unhappy or dissatisfied and want to feel better. Even make a list if you want to. Then ask yourself: Does it work? Has it ever worked? Does it soothe the pain? Does it escalate the pain? If you’re really honest, you’ll come up with some pretty interesting observations.

Pema Chödrön

On a scale from one to ten, this pain is so obviously nothing. I have experienced much much worse. But on a grander scale, it is massive. It spreads from my lower jaw around my neck and deep into my heart. This, of course, is not really pain, it is my fear of it.
There was a time in my life, quite a long time in fact, when it would have been incomprehensible to let something so small stop me from being alive. I used to believe that everything was always just down to options, taking steps, brushing back your hair, getting a move on, etc.
To feel so utterly at the mercy of all those unreasonable terrors that found their way into my clear and pragmatic mind.
There is short moment in episode two of The Honourable Woman where we see one of the characters waking up and before opening his eyes, he whispers the Prayer upon Arising. Strange how this moment has stayed with me. Ever since, a little voice inside my head has been saying, if only I could whisper something mysterious and sacred when I wake up, surely my days will be... what? Better? Meaningful? Serene? Whereas my pragmatic mind just sighs, here she goes again.
In my sunny kitchen, I wash and chop big fat yellow pears. I have watched these pears from their early blossoms to full juicy ripeness, they are my spring and my summer. I fill the juice extractor and force my mind to stay still, watching, collecting, measuring, extra slow whenever my thoughts begin to race. One week, the dentist said. Let's try this gel and if it doesn't work, we take it out. He also said, x-rays can be misleading. Or maybe he said this another time or I read it somewhere. 
I pour the juice into the big pot and add the sugar, some lemon juice, star anise and cinnamon. I stir slowly, my  mind going in circles. I will need some time off work if the tooth has to come out, I need to ask my immunologist about painkillers and antibiotics, lab work, liver values. 
The house smells of pears, I fill the jelly into the jars, screw on the tops and turn them upside down. Beautiful jars of golden jelly, there in the sunlight on the window sill. 
Later at work, a friend calls. After complicated surgery earlier in spring, she is now thinking of coming back to work. We talk about pain and painkillers. I know she has gone through hell but still, I blurt out about my tooth ache in my most miserable whiny voice. Whatever happens, she tells me, don't allow it to seize you, to take over, to run your life. She cannot see that I am almost crying now.
On my way home, it has started to rain. I am late and the only person cycling through the dripping forest. The gorgeous dripping forest. I check behind me and down along the path in front, just in case, before I start to shout and cry and howl and laugh. By the time I am out of the forest, my face is wet. Rain, tears, whatever, it's all water. 
I push the bicycle down the small lane behind our garden, shaking off the hood, brushing back my hair with one hand.
I know, I feel, I must own this, must stop running from it. I am not quite sure how to go about it. Not yet.

13 August 2014

"Robin Williams could have tapped anyone in the western world on the shoulder and told them he felt down and they would have told him not to worry, that he was great, that they loved him. He must have known that. He must have known his wife and kids loved him, that his mates all thought he was great, that millions of strangers the world over held him in their hearts, a hilarious stranger that we could rely on to anarchically interrupt, the all-encompassing sadness of the world. Today Robin Williams is part of the sad narrative that we used to turn to him to disrupt.
What platitudes then can we fling along with the listless, insufficient wreaths at the stillness that was once so animated and wired, the silence where the laughter was? That fame and accolades are no defence against mental illness and addiction? That we live in a world that has become so negligent of human values that our brightest lights are extinguishing themselves? That we must be more vigilant, more aware, more grateful, more mindful? That we can’t tarnish this tiny slice of awareness that we share on this sphere amidst the infinite blackness with conflict and hate?"

Russel Brand in yesterday's Guardian. 

10 August 2014

I have a tooth ache and I am fighting panic. It's probably nothing but I am so very scared. I am 56 years old, I have done quite a lot of amazing things on three continents for the last 35 years and I act like a frightened child. Oh how I wish someone would come and tell me that all will be well, very soon. But when you are 56 years old, you are supposed to cope in these situations or at least not act like a child. You can listen to the regular breathing of the man asleep next to you. You can watch the cat watching you, only she is blind and just stares into space for a while. The moon so stunning earlier tonight is hidden behind a hazy fog.

I will feel like a right fool in the morning, I know. 

Earlier this week I hurt my back doing a simple exercise to strengthen my back muscles. Something I have been doing for years, the exercise I mean. My first back ache in 19 years but we recognised each other like old friends. It is actually hilarious, my GP laughed when I explained how it happened and sent me on to physiotherapy. 
That time, 19 years ago after the car crash when I had spine surgery. Nothing compared to having a tooth ache.

07 August 2014


Watching R with our deaf and blind old cat this morning brings back memories of our early parenting years when I went back to work and he stayed home. Maybe replace memories with revelations.
Quite often, I would find pebbles in her nappies (diapers), her wellies with a puddle of water inside, dead woodlice in the pockets of her dungarees. But there was also my red cheeked smiling toddler with unkempt hair holding out her arms and unwashed hands to me. Wisely, R never really told me what went on in the garden, which at the time was a very big walled-in space with large overgrown patches full of brambles and broken bottles and ancient waste. Come to think of it, there was a time when S would bring me old batteries. In any case, the house mansion with all its faded grandeur and sweeping staircase and all the gaping wounds that 100 years of neglect bring about was a minefield for anybody. Whatever possessed us?!
And: There was a large water tank way back in the garden. I know it was roughly shoulder high, toddler shoulder high. As I was rescuing the old cat this morning from inside the small bit of bramble hedge we have here, while R was digging up the spuds across the lawn, I saw my toddler throwing stones into the water tank, 30 years ago, pulling herself up to the rim to watch it splash and my knees gave in.
You are overreacting, R tells me. That cat has a great sense of smell, she would have found her way out in time.

05 August 2014

Stuff happens, life goes on. In the mornings I read about Gaza and at work I hold the hands of a furiously crying Palestinian postdoc, her mascara running down her face in black lines. She feels helpless, she tells me. And I want to reply, helpless? Try me. But instead, we sit for a while longer before she tries to make some more calls.

I also read that amazon is starting to send out stuff to people they might want to buy but haven't yet ordered, all based on their preferences and reviews and wish lists and whatnot's. In my case, this could mean a deluge of second-hand books and contact lens cleanser.

Can I write one paragraph about a terrible war and in the next, make fun of one of the myriad trappings of our consumer society?

I don't know. In fact, I mostly feel that I haven't a clue. About most things. How come we do all this? How on earth do we let hurtful things happen? Last week I commented on an article about epigenetics with my usual spiel that guilt is not hereditary but that guilt feelings are and about neuroscience and the unconscious transmission of war trauma and guilt from one generation to the next. But I wonder, it seems so slick. Obviously, I have done a fairly good job shaking off my mother's trauma or else I would drown myself in drink and valium by now the way she did.

And yet, I know, being German and with that grandfather, I better keep my mouth shut when certain issues are discussed because these days, sooner or later, someone will mention the war. I grew up at a time when nobody ever did that, mention the war, well, not in Germany. So imagine my clueless surprise at age 14 when I arrived in a sleepy town on the east coast of England (where I spent three months hating the school uniform and watching telly) and was greeted with the outstretched hand salute and that little gesture with the two fingers under the nose to indicate the moustache. Great fun for some.

The baddies and the goodies, how easy it could be. But remember: this will never work.

Instead, yesterday in London:

source: http://www.ibtimes.co.uk/

But most importantly, this: