31 October 2017

There are moments - and I write this without any sense of melodramatics or self pity - when I am certain that I am balancing very close to the edge, when I feel the frailness of my existence in my breath, when I run my fingers along the bones and muscles of my arms and wonder what it is that keeps me alive and for how much longer.
I have no reasons to despair, I am not terminally ill, I am hovering in between, mostly waiting, for good days, full of energy days, everything light and easy days.
And when it happens - and oh, it happens! - I am waiting, as much as I try not to, for it to end, inevitably, for the familiar roar of illness to catch up with me again.
On really bad days, R says to me, just wait a bit, love, you'll get better. While on really good days, my inner voice says, wait, this cannot last.

A young woman writes to me, her partner - equally young and formerly a successful business man - has been diagnosed with my shitty disease and started to self medicate with pain killers and drink because he has lost all confidence in medicine anyway. She is hoping I can help. A pep talk on attitude, self-respecting resignation, wisdom even.

It takes me a few days before I realise how angry her request makes me. How angry I am with my helplessness. I feel such a fake. There is no cure, I reply. You can change doctors but the treatment protocol is the same. Find an expert you both like, maybe it helps. I write, try distraction, meditation, relaxation, stay informed, all that useless rubbish, complete with links.

I once lived a wild life, in a big house full of people, mad ideas and loud wonderful music, we baked bread and the bathroom had a large hole in the floor boards. We celebrated very big parties, wild parties, spending most of the day moving furniture to create space, stacking albums in large towering piles, covering the floor in the attic with mattresses and blankets for the kids, cooked vast pots of kidney bean chili with brown rice and of course, the drink, the drugs.

I lived in Africa, I have been to India, I have climbed mountains and swam in vast oceans. I slept on beaches and trains, I milked goats, made cheese, mixed cement and built walls. With my hands. I danced all night.

Today, I cycled for almost 15 kilometers through the forest, R tells me, he checked the distance. We stopped for coffee and cake. My hands were shaking, my knees like jelly.
I know I am waiting.
So what.


  1. Your writing is astounding, as are you.

  2. Maybe it's love that keeps us alive and remembering and waiting. I am wondering if your photos were taken during your bike ride through the forest. They remind me of some of the things you knitted. Fall has the best colors that I know of. A Steller's Jay just landed on my porch, hopping around, posturing. That blue is one of the fall colors for me. As always, sending love to you.

  3. I love what's inside that door you just opened. What a life you have lead.

    One of the best of your writings, Sabine, simply beautiful. And the photos - gosh.

  4. I am asked sometimes, how can you be so optimistic? So freaking happy? What I don't explain are my times of melancholy, like seedlings in the dark.

    Thank you for showing us these photographs, liebe Sabine!

  5. Thanks for this very personal glimpse into your experience.

  6. There is no cure, only treatment, same as cancer. I work in cancer care and I am part of a vast structure that lies to patients and gives them unrealistic hope and expectations and that is like a piece of sand under my shell, always rubbing, always irritating. Modern medicine is not so modern. We try, we fail. Sometimes medicine succeeds and the doctors have no idea why. I believe there is a link between my gut and my depression. My doctor thinks I need to up my anti depressant dose and I resist but feel let down by her.

    And life goes on. I'm feeling melancholy today. My apologies. We have our first snow that will probably stay with us until March. The darkness and the cold weigh on all of us.

    You've had an interesting life. Myself, I have done none of that and used to feel so trapped and boring until I realized that I like routine, like the feeling of safety. There all types in the world and I'm glad there are people like you who thow yourself into life and I'm glad that there are people like me who stay home and do the laundry. Does that make sense? No judgement and no envy anymore either which is progress.

    I can't imagine living with a chronic illness. Fatigue, pain, thwarted plans, even though I deal with all those. Hmmm.

    Your photos are lovely. I was born in Germany in the sixties. My father was in the Canadian Armed Forces. I've only been back once since we left in 1965. I spent 24 hours on a layover with my ex-husband in Mainz. It's was short and I would like to go back. Would like to see where my family lived.

    Now I really am rambling. Your writing is lovely and thank you for sharing it.

  7. Your photos are as beautiful as your words. How you grasp the whole of life, both the pain and the beauty is utterly compelling. Reading your words "I am waiting..." reminded me of Ferlinghetti's poem:

  8. It seems to me you have found the only answer to your medical situation. And that's to write about it. But there's rather more to it than that bald statement.

    The subject is inescapable. It occupies your body and therefore it occupies your mind. To ignore it would be the equivalent of ignoring a real live elephant in your room: snorting, blowing dust down its back and twitching its ears forward to detect the clumping feet of a flea. No mere metaphor.

    Hannah Arendt came up with that memorable phrase "the banality of evil". Which we may adapt: illness is equally banal. Thus, if we are to write about illness we must somehow transcend its failings as a subject. There's a risk that illness's repetitiveness, its malignity and randomness may become boring and we must avoid that. And we avoid it (I should say: you avoid it) by concentrating on the quality of how we write. In brief: our style. "The familiar roar of illness" is stylish, vivid and as far as I can judge, truthful. Good on yer.

    Selectivity is often at the heart of style. The illustrative phrases in the para beginning "I once lived a wild life.." are disparate and finally comical. Way to go.

    My comment is of course totally unnecessary. You've identified the problem and you're applying the solution. I just wanted to utter a qualified, somewhat academic version of "Hurray".

  9. The photos knocked me out. I am so happy for the things you have done and the person you are. I want more for you.

  10. What a poignant, scary, beautiful post.

  11. I am glad you write. I am glad to be here, waiting, living, alongside you.