Living Differently - Heartpoint (for Catherine)

I'm still getting over my most recent energy crash. It takes a lot of self-discipline to care for myself this much. And I don't mean the physical side of taking enough rest or eating properly but the emotional component. That one I find pretty tough. For every step I take towards self-compassion a voice rears up in my head reminding me, with great authority, how indulgent I'm being to take it this easy and that I should be doing more.  It's an hourly battle not to be crushed by this inner dictatorial voice and I find myself losing the ability to see what I need with any clarity at all. To feel so in the wilderness with nothing but my own punishing thoughts for company can be a pretty lonely place and I begin to wonder if I'll ever find my way back home. Now I've written this down I can see it does sound rather melodramatic. It's also the truth.

Chronic illnesses have wavering symptoms, ranging from just about nearly OK to absolutely bloody awful and if the ghastly period is unrelenting the fear can hold you pretty tightly in its grip. The whole process of going through a crash, relapse, or flare is extremely traumatising. After the metaphorical storm has passed I find myself wincing at even the tiniest drop of rain. I know I'm not alone in this and that the unpredictable nature of long term sickness can be very anxiety producing. This is perhaps why so many of us turn to meditation, buddhism, a spiritual practice or a creative outlet to aid our navigation through these rough seas.

So, it will be no surprise to hear that recently I had given up on magic altogether, even in its most human form. That was until my friend Dina invited me over to her studio for a prolonged session of recuperative yoga. It's not the first time she's done this and I'm always grateful. The session lasted over two hours and Dina put me in a series of prolonged resting postures on mountains of bolsters and blocks, covering me with cosy blankets until I drifted in to that safe and hypnotic space between waking and sleeping. She is an expert at arranging the equipment and I often felt like I was floating in space, momentarily free of the burden of gravity.

One thing that struck me was Dina's attention to detail. Even my skinny wrists were supported by rolled up blankets. We often think of holding on as something we do with our hands but our wrists can also carry a great deal of tension, the support I had enabled me to let go at last, to take flight. I decided to find out what mysteries our often neglected wrists held and discovered the location of Heart Point 7  described as an acupressure point to quell anxiety. It also served as a reminder to me that when we are feeling our most fragile the seemingly smallest things make the greatest difference and hold the key to our emotional sanctuary. I've called this heartpoint to highlight that even in our most difficult times there are clues everywhere, tiny doorways to love and tenderness and it's in the silence and stillness that they are revealed to us.

NB: This post is dedicated to my friend Catherine who is in the middle of a storm right now.

Living Differently - Making it Better

Despite all my protestations of self-enquiry I'm not that unusual, I want to feel better rather than worse, to see change happening without having to break my back doing it. Well, I say that but is it true ? If there's one thing this lengthy illness has taught me is that I am not the person I say I am, even to myself.

My old friend Kitty sent me a photo taken decades ago in a photobooth. She remarked how carefree we look. I've scrutinised my gaze seeing if I could find clues of a future me. Nothing, except my hair is much the same and I'm a little anxious, as ever. What stings of course is not how young we look but how carefree. Of course this is the order of things and the luckiest amongst us get to have at least some taste of freedom in their childhood. But I keep asking myself what happened, where has that open-ness gone ?

Chronic illness is a rattlebag of unwanted and much needed lessons. I say unwanted because I would much rather be happy without having to try and this sickness squeezes the juice of gratitude from you. Because, in the end, being thankful is the only way to live. Bitterness is not an option but I am drawn to its magnetic pull frequently.

Over the last 18 months I've played different mind games with myself. Distraction is not the preserve of those who are ill, but it is for those who are suffering. Better not to feel the pain than feel it, it can all get too much at times. And distraction, even for the mostly housebound like myself, can take many tempting forms from watching light-hearted entertainment to being online for hours, from obsessing over personal relationships to close companionship. It is not always a bad thing and sometimes it's a life-saver.

Sometimes the distraction is enough. But it doesn't always work and then I pick up my books and look for An Answer, a Buddhist or meditation practice that whilst allowing me to sit with my emotional and physical discomfort will actually make it go away. I realise that I swing between these two states - an absorbing distraction on one hand, and a frantic desire to find a liberating truth, an acceptance in my suffering on the other. I work so hard just to feel OK. Whichever path I take I always want to make it better, and fast.

Today, after another night of fretful sleep, I woke at 6am. My heart sank when I looked at my phone and calculated how little sleep I'd had. This is not unusual. I then begin to panic, think of how good health seems so illusive and then, often (my first distraction of the day) I go online and see what's happening. My idea of 'letting it be' usually means my lying in the cold and dark until I'm weeping with frustration and fear. This morning I wondered if there was another way.

I've just begun reading 'True Refuge' by Tara Brach. She talks about meditation as a tool to find the refuge we need and that it lives in all of us. A good friend of mine who has lived with long term illness for nearly 20 years says that Balanced View has helped her access this inner calm, and another tells me that CBT has help her question her assumptions and beliefs. And here I am banging my fists against the door of self-love and acceptance and not getting anywhere.

Like this morning when I counted the hours of rest I'd had, this weighing up of how good I feel prevents me from experiencing what is really going on. My preoccupation with 'making it better' means that I hardly ever get to enjoy the ride for what it is. What if there is no making it better, what if it is just what it is. What If I never get well (and the one thing I can count on is that I, along with all those I love, will die) ? This thought, from an unexpected quarter, gave me solace. If there is no better, no life without some sort of suffering to deal with, there is no worse. Of course this beautiful realisation is momentary but there it is, map-tacked to my brain when I feel uncertain again.

I look at the picture of Kitty and myself again and one thought crosses my mind. It's what my aunt said as we were in the hearse going to my father's funeral. Passing all the gravestones on the way to the crematorium she said 'Look at all these people, they all had their turn'. And it's true my younger self had her turn and this is my turn now. Not to suffer without respite but to be here and to be here now.

Picture This - Jocelyn Page 'Shadows Point East'

During my recent spell of ill health I assembled a portfolio of photographs, Still Life. I invited some high calibre poets to respond to these photographs for a project called Picture This. I have been overwhelmed by the beautiful work I have received. I also worked with photographer and film-maker, Craig Thomas, on a short film containing a selection of these images which you can enjoy below. I feel very lucky to know poet Jocelyn Page. I was overjoyed when she chose one of my more abstract photos to inspire her poem here. Her poetry quietly and confidently beckons me in, then wakes me up to seeing the world in a whole new light.

Jocelyn Page is an American poet living in South East London. Her pamphlet smithereens was published by the tall-lighthouse in 2010. She teaches at Goldsmiths College where she is working toward a PhD on the topics of inspiration and collaboration.

Shadows Point East By the time we get to camp and our unpacking, line setting horse staking, fast eating, fireside click-clacking is through - I finally get to the words, blazed in charred shadows in my head, by then the opposite of their brilliance, like the noon sun stamps itself in the deepest black on the backs of the eyes. So nothing I write tonight, dear, will come anywhere near the idea that I had, that I had to tell you this afternoon, out stalking the west.

[youtube http://www.youtube.com/watch?v=9psPlFAEPFE&w=560&h=315]

Pyjama Life

It's taken as a given that writers wear all sorts of things to write in, from top hat and tails, threadbare old cardigans to absolutely nothing at all. OK so I lied about the tails. The point I'm making is that it's broadly acknowledged that what you wear whilst you are writing the great novel, symphony or latest blog post has no effect whatsoever on what you are producing. Truman Capote famously described himself as an 'horizonatal author' saying "I can’t think unless I’m lying down, either in bed or stretched on a couch and with a cigarette and coffee handy. I’ve got to be puffing and sipping."

John Cheever declared "To publish a definitive collection of short stories in one’s late 60s seems to me, as an American writer, a traditional and a dignified occasion, eclipsed in no way by the fact that a great many of the stories in my current collection were written in my underwear.”

Flannery O Connor, who lived with lupus, noted “I write only about two hours every day because that’s all the energy I have, but I don’t let anything interfere with those two hours, at the same time and the same place.”

O'Connor's quote really resonates with me. My ill health means that my energy, and accompanying symptoms, vary enormously. Good (ish) days mean that I can sit here at my desk at 1030 am and begin to write this blog. On bad days after getting up and making breakfast I am back in bed before lunchtime my head spinning, limbs leaden and heavy, exhausted just by sitting up and not able to read or listen to music as everything sets off intense dizzy spells.

And that's why on the days I don't venture out of the house (which are the majority at present) I prefer to stay in my ultra comfortable pj's with my cosy dressing gown bought for me by a very kind friend. Another friend, not alone in his opinion, was well meaning but ill informed. He said he was worried that my experience of ill health (and my attitude to it) could be exacerbated by my choice not to get dressed. I know he was concerned that I would define myself by my illness and nothing else. For him, putting on sweatpants and an old t-shirt made him feel tired and less inclined to do anything.

In fact he does have a point. One of the reasons I wear pyjamas is because it IS relaxing. When my energy drops it feels like the floor has gone from under me and I have to lie down immediately. There's no energy left for undressing or for getting in to something more comfortable. It would be like getting prepared to faint. This way I know that whatever the time of day I am always ready to take care of myself. I am dressed for the job of getting well, or at least not getting more ill.

Conversely I have also managed to achieve a fair amount from my bed. Before this current chapter of ill health I worked from home as a freelancer. One of my many assignments was working in online marketing. I can now confess the majority of this work was undertaken in clothes that would make 'dress down friday' look like I was dressing for the Oscars. These days the majority of my creative output is undertaken without the formality of underwear.

There's an important point to made here about the bridge between those living at home with with chronic illness and writers who often work in solitude. It's this - there's a honesty and self care in both ways of being. For me, the knowledge that I belong to both tribes helps me realise that I'm not alone.

By now you'll have a pretty good idea what I'm wearing to compose this post. I wouldn't have it any other way.

Picture This - A F Harrold 'Just This'

During my recent spell of ill health I assembled a portfolio of images, Still Life. I invited some high calibre poets to respond to these photographs for a project called Picture This. I have been overwhelmed by the beautiful work I have received. I also worked with photographer and film-maker Craig Thomas on a short film containing a selection of these images. An empty chair has a poetry all its own. Today's poet, the highly esteemed A F Harrold, has written a touching and elegant piece that brought a tear to my eye when I first read it.

A.F. Harrold is an English poet who writes and performs for adults and children.

Just This

Autumn days seem longer when the low sun slinks,

before mists rise up and afternoon puts evening on.

There are spaces in them, crisp and airy where no bird sings,

which open simply into a long view of all that’s gone.