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.

The new medical expert has a very quiet voice and I have to lean forward a bit in an effort to hear what she is carefully explaining. I think I like her. She doesn't make a face when I pull out my phone and open the list of questions I had prepared earlier. What app are you using, she wants to know before she whispers her detailed answers.
I know she said that I look well and healthy, that there are certain tests and examinations she wants to carry out, but that I need to take this medicine for ten days beforehand, that she will make a note in my file for the switchboard to give me priority when I am ready to call her, that I should not think of the t word or the c word. And that she wants me to consider maybe not working the three hours I have managed - poorly - in the last couple of weeks.
We part almost as friends for life. 
Outside, the air is mild, people are eating ice cream, I walk into the bookshop and briefly hold that bestselling book on miracles in medicine in my hands. It has a nice cover. I don't dare to open it, gently put it back on the shelf. Instead, I read a few pages of Noam Chomsky's Optimism over Despair. 
When I go to unlock my bicycle I notice the Roma woman sitting on the steps to the tourist office, begging, with a curly haired toddler in her lap.  She looks at me and I hold my breath. For a moment, I want to run over to her with open arms, hands full of food, care and love. But I turn and walk around the corner and quietly phone my friend at the women's centre. Don't worry, she assures me, go home, one of us will come and have a look now.
I cycle home through my beautiful neighbourhood, the tree lined streets, the colours of autumn. I smile at friends I meet and they wave back and the wind blows the tears from my eyes.

Fats Domino

He was one year older than my father. But my father always shouted upstairs, turn that music down.

On Sunday morning a friend sat with me in the garden and while we entertained each other with benign stories of our daughters and partners (her health issues are way beyond your or my imagination, let's just say, it's a miracle she is alive today), she suddenly jumped up and pointed to the exceptionally clear blue sky. Red kites, look, a flock of red kites. Look at their forked tails.
I struggled to see a few dark dots - the sun was very bright and I was not quite fully awake - while she busily counted, 12, 14, whoaah 17!, and confirmed that these were on a stopover from their journey to Africa for the winter. She is a biologist and I am not. It shows.

Birds have played a big role in my life. I am not afraid of them in that Hitchcock kind of way. Also, it's not that I watch them. I am very bad at identifying any apart from blackbirds and the odd blue/black tit, a robin at a push. Some birds just look at me, they do, I swear, and I look back and I know. That they don't care, that I am nothing to them and that it doesn't matter. And it always feels good.

My mother was a keen bird watcher and on winter mornings when we got on her nerves, she would hand us her illustrated bird books together with paper and pen, move the bird house and the feeding tray on the snowy patio, open the curtains and declare the contest open. Whoever counted the most species won. And you had to be very quiet and concentrate.
She was a clever one, my mother.
Occasionally, she still visits me as bird. Not as much as she used to. I wrote about it here. But she was up there, one of the red kites. I am sure. She never looked down at me and I didn't need to look back at her. It felt good.

If I had a bucket list (I don't), it would include witnessing a murmuration. I have seen small ones but I want the real thing, like this one:



or maybe this one, on a lake in a canoe:

A genuine warrior has a lot of resources within herself, resources that are always there. Although you feel that you’ve run out of ideas, you’re not really running out of anything. You’re being attacked by your own cowardice. You can go beyond that and find further resources within yourself. Banks and banks of inspiration unfold constantly.

Chögyam Trungpa Rinpoche

Oh how much I want to be a warrior right now. Just for a short while. I'll settle for tonight, a glimpse of these endlessly unfolding resources, let me pummel that cowardice until there is hardly anything left.
This morning after another hectic night of catching whatever sleep I could in this mad circus of fever flares and shivers and a couple of other symptoms that I should know so well (but which take me by surprise every fucking time), with the first commuter noises from my neighbours and one surprisingly gentle bird call, I tried to settle to the calm voice of Jon Kabat Zinn asking me to establish myself in a posture that allows me a mountain-like dignity.
It was lovely. I almost fell for it but the rough end of my self pity and the prospect of yet another diagnosis looming on the horizon won the day. For now. I am working on it.

early October forest

never lose touch with the universe

"When the Manhattan Project scientists – half-mad from years of grinding out atomic-level discoveries in the race to beat Germany to the bomb – emerged from their Los Alamos lab one morning, they looked up in terror at a strange bright light in the sky. Among the scientists was an astronomer who reassured the group that it was only Venus."

as told by Daniel Magariel

There I was chewing over this quote, tossing and thinking - as you do in the early hours before sunrise - until I realised what bothered me.
Let's replace  'only' with 'the magnificent, the wondrous, the mysterious' Venus.

privilege

"There must be terrible loneliness in that failure to perceive or value the humanity of others, the failure of empathy and imagination, to consider oneself the only person who matters. Caring about others, empathising, loving them, liberates each of us; these bereft figures seem to be prisoners of their selfishness before they are punishers of others."

Rebecca Solnit (read the full article if you have the time)

In one of these complicated discussions with several (wonderful and much adored) men I know about misogyny and why and how and are women to blame and how come and do you think your teenage daughter is less safe on the streets at night than your teenage son (in a small university town in Europe) and if so, why, and why should women watch how they dress and talk and behave while men etc. etc. there came the inevitable (male) moan, Oh stop, I can't be bothered anymore, I don't want to know, it's not my problem. I am neither a predator nor a misogynist. 

Silence.

In a sense sickness is a place, more instructive than a long trip to Europe, and it's always a place where there's no company, where nobody can follow.

Flannery O'Connor 

There are days when I have to tread very carefully to avoid this all consuming anger. 

Or maybe it is all consuming jealousy. Or this overwhelming feeling of life not being fair. 

And before I know it, I am stuck at entitlement and why me.

Most days, I catch myself in time, let it settle, recognise it and watch it fade, slowly. That's a skill I am working hard on accomplishing. Life long learning etc.

Other days, I am helpless but at least try not to show it. And then there are days when I let it all hang out. You better not come near me then unless you bear hand selected or at least mindful gifts of comfort and distraction. And I am getting very choosy. I am a veteran by now.

Once again, I sat for long hours in the blue recliner with the slow drip feeding into my vein. My co-sufferers of the day included a confused and newly diagnosed man on his first round of monoclonal antibody therapy. I made it my mission to inform him on the intricate aspects of auto-antibodies and immune suppression, night sweats and fever flares and fatigue, disability and early retirement and life expectancy studies. 

His response was: Hell, no way. Not me. But that was before the clemastine kicked in. 

While I listened to him snoring and gulping, I felt awfully superior and so much more advanced and educated about my/our shitty disease. And then my double dose of clemastine reduced me to counting the strips of the window blinds for the next six hours, over and over and over.

On the way home, I vaguely noticed the active world through the car window, cyclists, groups of elderly tourists queuing at the museums, kids chasing leaves and dogs, smart suited business people running or at least striding with purpose, all that healthy energy outside my little bubble of chronic illness. Not my world. Not anymore.

And later, I was lying on the carpet in the sitting room with the sun pouring in and the patio doors wide open. This glorious carpet is the most expensive item in our house, purchased on the spur of the moment from a smart young man in one of these come and go warehouses by the motorway, ('no child labour, madam, all made by ladies in my valley, look at certificate here') and I traced the intricate patterns with my finger. Apparently, you can identify a real handwoven Persian carpet by its tiny mistakes in the patterns, which are left there deliberately to show human humbleness in the face of god's perfection. Or something like it.

There is a metaphor here somewhere.