28 October 2015

The full moon brought the strong easterly wind that will take down the colourful leaves and then we will enter that long period of grey and cold and damp and dark. Five months.

Silent slow mornings, carefully portioning my energy, so much I want to do, need to do, while the bed with its warm quilted cover beckons.

Manuscripts waiting for my attention on my desk, reports on kidney transplant failure rates in children, novel molecular genetic testing for very early diagnosis of dreadful diseases, starvation in Sudan, rebuilding lives in past-earthquake Mustang (NW Nepal). Have a guess which of these comes with a paycheque. Some days, the world is too big and my energy is too low.

I was reading recently how empathy research has shown that we are much more connected to others than we consciously are aware of. Not in a sense that we are all brothers and sisters, all that we-are-family crap, but on another level outside our control. And of course being the clever animals that we are, we have found ways to circumvent this. Like crawling back under my warm quilted bed cover.

Empathy isn’t just remembering to say that must really be hard—it’s figuring out how to bring difficulty into the light so it can be seen at all. Empathy isn’t just listening, it’s asking the questions whose answers need to be listened to. Empathy requires inquiry as much as imagination. Empathy requires knowing you know nothing. Empathy means acknowledging a horizon of context that extends perpetually beyond what you can see.

Leslie Jamison

27 October 2015

Moments of fierce jealousy. I will admit as much.  Missing things here and there.

A long walk in the hills, a couple of hours on a Sunday, the autumn colours and a scenic spot for a packed lunch and a flask of tea to share.

Cycling along a river, from the source to the mouth, watching it swell and expand for days, a week, as long as it takes.

Crowded rooms, noisy laughter, live music, dancing, all that careless high jinx.

And food. Recipes have become texts in foreign languages too complicated to digest.

But basically, I can hold it together and get over it. Still, sentences form that begin with "I'll never again will..." while the small voice inside my head is whimpering "oh please, do shut up" and then the overbearing voice of reason sniggers "you call that a problem?"

25 October 2015

I was five years old when I saw the sea for the first time and it would be another five years before I actually stepped into it. Growing up in a flat country with sandy soil and endless boring pine forest plantations, carp ponds and small streams, sensing that blue line of the vast horizon was physically overwhelming. But on that first day, it was also frightening as my mother nervously stood watch over me and my little brother. 

Together with my grandparents, we had come on a day trip and were totally unprepared. I remember standing there between the crowds, in my Sunday best, eventually being allowed to take off my shoes and socks, tucking my pleated skirt into my knickers, holding on to a hastily purchased set of plastic bucket and spade until I finally dared to copy the crowds of kids around me and started to dig. But I did not touch the water as the waves seemed like fierce animals trying to snatch me. It was the most unusual day, everything strange and new. On the way back, I fell asleep on my grandmother's lap in the back of the car and was woken when - long after dark - we stopped at a motorway restaurant where I had my first strange taste of pommes frites.

Five years later, my parents having climbed up the social ladder, we arrived for our first (of many) summer holidays in a thatched beach house on the Danish North Sea coast. At the end of the road where the sand began, we all got out of the car and climbed up on the dune and it was like a magic door had opened and I ran and ran and ran towards the surf. 

We all loved and hated these long summer months by the sea, my parents fighting, my mother driving off in a huff for a day, sometimes even two, the banging of car doors and the shouting of threats, my father's strict schedule of daily card game tournaments and chess competitions, but also sunburns, racing down the dunes for a morning swim, grilling fish on the beach in the evenings, carefully doled out portions of vanilla brittle ice cream and noisy games of catch long after dark.

It was a time when we all had so many dreams, of a happy marriage, of success, of health, of living by the sea forever, of being a family. 

22 October 2015

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

20 October 2015

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.

18 October 2015

17 October 2015

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.

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.

16 October 2015

There are days - and nights - when you ask yourself all sorts of questions. And there is a profound difference between the daytime and the nighttime questions. In my case, I usually forget the nighttime ones, even or especially when I was able to answer them to my satisfaction. I go back to sleep having solved the riddle's of humanity and wake up in the morning to the same seemingly insurmountable obstacles to peace of mind.

You ask yourself, how did I get here? Is this still me? Is it happening now? Cells dying and new cells growing, nerve impulses reaching my brain and you remember reading about the way our brain corrects what is actually happening with imprints from our memory. And you ask yourself, is this happening now, all of it? Or is this just the product of layered memories? Does it matter?

Your mind is like water, a pond, most of it covered in duckweed. Sticky and sluggish. And yet, sometimes, a spark, a moment when you think, this is real. You are alive. This is your breath, these are your fingers touching your face. 

And then for a short moment, much too short really, you recognise that all this doesn't matter at all, that you are as unimportant as the duckweed or the falling leaves. 

13 October 2015

I used to joke that I'll try everything once. Haha. Very funny. The joke doesn't work when doing unusual things twice, even with sirens and high speed as an extra.

Stil baffled I pretend to observe this fake reality show from behind  a one-way mirror. The night noises of an intensive care ward remind me of my vagabond days trying to catch some sleep while waiting for a delayed flight in a crowded departure lounge in a foreign place.

During the day I carefully keep my distances from the secret Information of sideway glances and whispered exchanges. If you have something to tell me, do it. If not , don't expect me to read between the lines and no, I will not fill the gaps. I will be the prfect patient for as long as possible. Polite and ignorant and not at all interested in anything but that potted plant at the end of the hallway.

08 October 2015

 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

06 October 2015

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.

05 October 2015

Some days are better than others. What am I saying? Some days are simply beautiful. I know what I am talking about, I am married to a gardener.

However, today is not one of them, despite the elegant long shadows on the lawn, the clear October air with flickering clouds of tiny swarming insects, ripe figs and a hedge full of blackberries.

While the gardener is clearing and digging, I update my list of medications and symptoms as required. I make a list of the latest publications on autoimmune inner ear diseases and multiorgan involvement of c-ANCA antibodies hoping that I will find the courage and self confidence to hand these to the expert I am due to meet tomorrow.

Last night while I was waiting for the dramamine to kick in and relieve me from drowning at high sea, with R sitting beside me working on the coming week's teaching plan, I closed my eyes and climbed Mount Eagle on the western shore of the Dingle peninsula in Co. Kerry, Ireland on that balmy summer's day thirty years ago. The evening air was simply gorgeous and my arms and neck were still hot from the afternoon spent on a sunny beach. 
We had decided to come here on the spur of the moment, still in our summer clothes with a woolly sweater for later tied around our hips and hastily put on walking boots. My pink sleeveless sundress slightly billowing in the breeze I tried to keep up with R who was striding up ahead of me, steady as ever. And as always, he had found the best path up the rocky slopes just by looking towards the sun. Up on the top, sitting in the breeze, we looked out over the silent Atlantic and all was well with the world and our lives and our totally uncertain future.
Without that man gently coaxing me to climb so many seemingly impossible paths I would have missed the most splendid views. 

01 October 2015

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.