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.

Living Differently - Terror in the Body

This is a photograph I took a few months ago of my bed. The title, 'Home', will hopefully mean something to the thousands like me who live with chronic illness and spend a lot of time housebound. The idea for this blog has been floating around my head for some time but I was reluctant to put finger to keyboard and write it. So much of my conversations these days seem to begin with the phrase 'since becoming ill...' and if I was bored by this opening gambit I could pretty much be assured that others would be too.

I have a variety of diagnoses - Lyme Disease, Chronic Fatigue/M.E and Ehlers-Danlos Syndrome. On top of that I have lived with depression in varying degrees most of my adult life. Looking at this comely list I immediately sink in to shame. Although I know it's not my fault that this has happened to me I cannot help feeling I have been invaded by positive thinking body snatchers and should just pull myself together. Needless to say I would never judge others this harshly but there it is, the protestant work ethic leaking in to my daily thoughts and the idea that if I just tried harder I could magic myself well.

Thankfully I have learnt a number of techniques to counteract this tsunami of self-blame, one of the most helpful being a beginner's mindfulness. Even if it is for moments only I investigate my feelings thoroughly, where (if anywhere) they are located in my body and try to find words to describe the sensations. At that moment I become both the observer and the observed and it can give me a fleeting sense of freedom. But what really works is having a continuing creative process and, as I have written elsewhere on this blog, photography has been a bigger help than I could have ever imagined when I very first picked up a camera as a teenager.

2012 was a tough year. It is hard to describe the grieving process of becoming ill with no (immediate) hope of getting better. Everything changes. My life before my current state was not an endless fairground ride of jollity and excitement but I was unaware of how much freewill I possessed. Now my stamina and energy are so low I have become the flakey friend I often used to feel intolerant of. Every arrangement, from making my bed, having a friend over for half an hour, on bad days even cooking myself a meal - can be cancelled at the last minute. I live this new life in pencil, not pen.

Once I could earn my own living and as much as I would like to say this did not impact on my self-worth having to depend on benefits can make me feel infantilised. In short my independence, of both thought and action, was something that were so tightly wound to my identity that losing these to the degree I have feels like a living bereavement.

I am homesick for what I now feel is my 'old life'. Even though I know I am romanticising a past which almost certainly did not exist the way I paint it. I came to realise that my experience of depression was a help to me. I had already encountered such feelings of despair, ones I thought I would never flee but somehow miraculously did. I knew this landscape well, how utterly convincing it was that there would be no sunlight again after the dark night fell. Also, and I cannot emphasise this enough, therapy helped. Therapy really helped.

I had a hunch there was a through-line in my life experience. That's where I got the title of this blog. I have always been scared, on some level. Sometimes I have managed to muffle that fear with frantic activity, over-eating, sex, or any number of fleeting distractions and encounters. Now I live with an illness with an unsure prognosis, in a country where benefits for the sick are being eroded and, for good measure, having to move out of my beloved home of 20 years plus, fear is not something I can bury any longer. The foundations really are crumbling.

But this is not new. I never felt at home in myself, or to the degree I wished for, in the world out there. I have always been afraid of something, of a future where the sky falls, of people I love and depend upon dying, of not being able to survive. And although there are many days I hate my illness with an acidic intensity I realise I also have a begrudging gratitude for what it has offered me. I no longer have to wear a mask. It has been torn from me and I can now face the terror. There is no where left to hide. And this, at long last, is where I begin my journey.

Living Differently - Platinum Heaven

In an episode of Frasier - brothers Niles and Frasier get an invite to an exclusive health spa. They are contented and smug until they find they have not been let in to the gold members zone. Finally they find a way in only to see that there is a platinum door - forcing this open they end up on the roof with the rubbish. The message here is about being where you are and finding contentment with that. And, of course, that our search for a 'better' sort of happiness is illusive. Since last autumn I have been living with M.E/CFS. This has meant I have had to draw on inner reserves that I did not know I had. I've also had to ditch fantasies of a gold or platinum member's zone. And for me that means a busy creative working life, much social activity and a freedom I took for granted. It's also meant I am learning to anchor myself to the moment, however challenging that is and a lot of howling at the moon when all else fails. Acceptance is a tricky one, either one fights the truth of one's circumstances or one reluctantly surrenders to life as it is.

But this experience has taught me a great deal. I would be lying if I said I was grateful, I'm still very much in the angry grief stage of this process. What I do know is how important humour is. It is the salve to heal all ills, even ridiculous ideas of a platinum heaven.

[youtube http://www.youtube.com/watch?v=3CNmrUMS5FQ&w=420&h=315]

Living Differently - The Mirror

I still get somewhat embarrassed mentioning the fact that I am sick. Shame can creep in pretty quickly and I feel I should apologise for not being fit or energetic enough to take part in a more active life. But thankfully that's only part of the story. Perhaps this is an indication that my thinking is more about social conditioning than it is about my personality. It's easy, for us all, to get the two confused. Luckily I have a stubborn streak – when something needs to be said I will not shut up, especially when the gauze of silence hides the truth. And it's this that prompted ‘Living Differently’ - a series of articles and interviews focussing on those affected by chronic and long-term health conditions. I'll start by something that we all have in common and that's sex. Or more precisely intimacy, because even if we are not involved in a physical relationship it's a rare person that can live without closeness and contact for too long.

I had a conversation with a friend about intimacy and chronic illness. He has written an intelligent and refreshingly open article about chronic pain and sex. I read it and everything changed. One of the things he talked about was about feeling less like an adult and more like a child when he has a flare up. I know that well. Although I often spend days on my bed in a state of undress (or more precisely pre-dress) I don't feel like the temptress. I feel I am living outside my 'old life', one where I felt I had more choice and more freedom with what to do with my body and when. It's hard to feel sexy when you are exhausted and anxious, when the body you once knew does not behave in the same way.

I've stopped wearing make-up, stopped dressing up and my main concern is how cosy I feel. This body has medical appointments, it has treatments, it does (thankfully) get hugs. It doesn't go dancing or swimming or cycling anymore, it does not run for buses. I realise I have to find a whole new way of being sexual, one that involves persistant and gentle affection, one thats emphasis is on sensuality rather than hitting the high notes at all hours. And sometimes, I hate to admit, I just don't feel pretty enough in myself to get laid. Perhaps I have to find a whole new pretty too.

Vulnerability, freedom and exposure are all part of sexual interaction. The language of sex, at its best, is one of communion. But for now the orgasmic release feels too extreme at times. As much as the rush of endorphins are healing the intensity feels frightening, like a freefall parachute jump, when I already feel like I am falling in to the unknown unaided. Now I have, to some extent, lost the sort of control I used to have over my body 'abandon' feels more scary. I feel physically vulnerable a lot more of the time and so that also plays a different part in my (sex) life now.

This morning I woke early and thought of Steve McQueen's recent film Shame. In it Michael Fassbender plays Brandon, a sex addict. His life is ruled by one alienating sexual encounter after another. When he finally meets Marianne (played by Nicole Beharie), a woman whose company he clearly enjoys, he takes her to a lavish hotel. The same hotel he walked past previously where he glimpsed a couple having sex against one of the building's large glass windows. In the hotel room he cannot perform sexually with Marianne and she leaves. Brandon is then seen having sex with a prostitute, against the window, re-enacting the scene he had witnessed earlier. The glass is all about the surface, about looking and not being seen. It's also about hiding behind something that's transparent. I think that's what spectacle does, especially sexual spectacle - porn - it offers a public place to hide out.

As much as being mostly housebound with illness is about invisibility, it is also about grief. I wanted to write about sex but I have ended up here, trying to work out what this new world has given me. And what is has taken away. If I look closely at my life before I got ill, I know how visible I have wanted to be. Sex was my way of being seen and being validated. And when I think of my more extreme encounters it was my way of hiding out. I don't have that option any more. It is both a blessing and a trial.

What's left is the constant longing for closeness. Friends who also live with chronic illness say the same. Their bodies may not always be robust enough for physical activity but the need for tenderness remains. It's no coincidence that so many of us have close relationships with cats, those small-pawed creatures who demand to be stroked and held, whose needs so clearly mirror our own.

I had hoped to write something about loss, how being ill has robbed me of the sexual dynamism and the relaxed intimacy I was used to. Instead I have unearthed a different truth, one I would not have faced so clearly had I not become sick. There is not one story, there are many and each are different. This one is mine.

Picture This - Agnes Meadows 'Thaw'

Some fantastic writers have responded to a portfolio of my recent photography for a project called Picture This. I am overwhelmed by the beautiful work I've received. I have also worked with photographer and film-maker Craig Thomas, on a short film entitled Still Life, containing a selection of these images. Agnes Meadows is a gifted and prolific writer. She also runs a great monthly event for women writers of all genres, Loose Muse. I'm really excited about her heavily gothic contribution to the project.

Agnes has written five books of poetry – You and Me, Quantum Love, Woman, At Damascus Gate on Good Friday and This One Is For You. She is currently writing a novel set in 12th century Constantinople with a woman soldier as the central character. Thaw

In moments of transformation, the process of change brings a burden of misery I cannot control. My shoulder blades are knived by the black burst of feathers, the prickle of subcutaneous wings ready to emerge. And where my mouth was, replete with words half-formed for song or velvet metaphor, now I am beak-pierced, my tongue sharp as thorns or holly spike.

My arms have disappeared entirely, merged in the sleek gloss of raven plumage, legs grown crow-thin, toes a trident of talons shadowing your booted footsteps with avian shrewdness. These petrel eyes gleam in carrion hunger, my gorge rapacious for the weight of gristle and sinew.

It is worse in winter when the ground is white and the days are short and sunless. So little time to feed, I am undone by your warm breath, the smell of you coiling in heavy folds across my breast and shank, your blood a graying broth that boils in your veins, thin filaments of deceit.

You do not see me hidden in the leafless trees, are deaf to my shriek of triumph as I swoop, wings stretched, glide and settle on your shoulders, begin my rapier encroachment of your soft neck to reach the core of living brain within. dawn melts my tracks in the snow, a proof of terror, a thaw of mutating species, bird to man come daylight.

Picture This - Sarah Butler 'January Morning'

Some exceptional writers have responded to a portfolio of my recent photography for a project called Picture This. I am overwhelmed by the beautiful work I've received. I have also worked with photographer and film-maker Craig Thomas, on a short film entitled Still Life, containing a selection of these images. Sarh Butler's writing has an immediacy to it that works perfectly with photography. In the thoughtful piece below she captures the sense of isolation that was my impetus for taking the picture.

Sarah writes novels and short fiction, and has a particular interest in the relationship between writing and place. Her debut novel, Ten Things I’ve Learnt About Love, will be published by Picador in February 2013.

January Morning

He might have opened the French doors for a breath of January air, to clear the room of last night’s red-wine-cigarette-fog, but she knew he’d gone. There was no point in following, but she stepped out, across the moss-stained patio, onto frosted-grass that gave up its sugar-coating to the warmth of her bare feet. The soil beneath though, that stayed hard and unforgiving. There was no point in looking, but she looked anyway, and when her feet were so cold she had to retreat, she sat by the window and watched the garden – splintered into pixels by her tears.

Picture This - Steve Tasane 'The Purring'

Some wonderful poets have responded to a portfolio of my recent photography for a project called Picture This. I am overwhelmed by the beautiful work I've received. I have also worked with photographer and film-maker Craig Thomas, on a short film entitled Still Life, containing a selection of these images. I was very happy when Steve Tasane wanted to take part in the project, especially as his poem is inspired by a picture of our cat, Happy Meal. Living as he does with two photographers our cat knows his best side and is very happy in front of the lens. The poem below really captures something of that 'cat nature' I have only really fully appreciated since becoming ill.

Steve is Writer-in-residence for Dickens 2012, and his young adult novel Blood Donors is to be published by Walker Books in 2013. He is the master of tongue-twisting poetry with a sharp political edge.

The Purring

The Life Shadow crouches at the corner of a blank page.

A white void waits while the blackness watches – twitches, flexes – a stillness keening to spring

into the scent, the cloud-carried rumour, the rustle, a breeze, a cottoning on.

The Black Cat blinks a green eye, swishes her impatience and at once her poetry is.

Picture This - Jacqueline Saphra 'The Latch'

I invited some high calibre poets to respond to a portfolio of my recent photography for a project called Picture This. I have been overwhelmed by the beautiful work I've received. I also worked with photographer and film-maker Craig Thomas, on a short film entitled Still Life, containing a selection of these images. Jacqueline Saphra is a breathtakingly accomplished poet. I was honoured when she responded with the poem below; a sad and honest descripton of the tug of war that can happen in relationships.

The Latch How long had they stood on either side of that threshold, each willing the other to cross the line? Neither would give ground. Each grabbed a handle. They pushed the door back and forth between them for years until at last, the groans of the hinge alerted the latch, the latch remembered itself and clicked shut.

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.